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Friday, March 9, 2012 12:33 AM CST
In some ways it feels like just yesterday and in some ways it feels like more than a year has passed. Though tears come less frequently and happy memories more frequently, it is still a day to day process and probably always will be. We are slowly finding a new normal and find that doing things differently helps adjust to the feeling that a part is missing. Like attending Mass at different time, volunteering at the Food Pantry on a different day and changing Roger’s room into a study/office but keeping some of his “things” around in there.
One big change has been the addition of a new family member, Sully our golden retriever puppy who we got last July (see him in the photos section). He helps give us a focus for all the extra time we find ourselves with now, I did discover that your house can actually be too clean and too quiet.
In looking back at the last few posts to the website I realized that there was not a lot of info about what happened in the end, it all moved so fast. My last update told of our return trip to the ICU because of very bad lab results, suspected septic infection and possible re-transplantation. Once we got to the ICU the plan was to keep trying rounds of plasmapheresis and dialysis in an effort to get the antibody rejection under control and hope that he could get another transplant.
As the evening went on his lab values continued to get worse and the treatments really didn’t seem to be doing anything. Essentially his liver was shutting down and our only real hope was to try to coast him along with the hope that another liver would become available for him within the next few hours (a very unlikely situation). We got to the point that the ICU doctors told us we needed to decide if we were going to keep going and do whatever was necessary like intubation, CPR resuscitation etc, or make him comfortable and let things take their natural course.
Ironically just the week before we had been in the ICU and the patient next door to us had coded and the staff was doing whatever was necessary to save her and the poor parents were in the hallway distraught and hollering at the staff, it was a very difficult thing to experience and we felt so bad for the parents who were having such trouble accepting the situation.
So after much prayer to discern what to do we decided that spending our remaining time together peacefully and accepting that this was now in God’s hands was the correct course of action for us. Our catholic faith gives us guidelines as to the proper stewardship of the life that God gives us and dictates that we seek ordinary means of treatment that have the expectation of reasonable success in sustaining that life. But when those measures are not truly expected to help and may just unnecessarily prolong an inevitable death they are not necessary to pursue. Father Bob (the chaplain at Children’s) helped us to see that pushing forward toward a highly uncertain outcome with a fourth liver transplant (he likely would not survive the surgery or very long afterward) really was seeking extraordinary means and we were not morally obligated to pursue it, we could let the situation take its natural course. We would support him with IV fluids to be comfortable but felt that pain medications might just speed up the inevitable. With liver failure toxins build up quickly in the body which results in being very “out of it”, so patients are not really aware or feeling what is going on.
So we were able to spend the rest of the evening peacefully at Roger’s side, the staff was amazingly supportive, Father Bob gave him Last Rites and stayed with us till the end; we were able to pray together and share memories of our time with Roger. Even though we kind of always knew this was a very possible outcome for him and that he had battled back from many situations that should have ended his life before it was still a bit surreal that it was actually happening.
Many thanks to all of you who have prayed for and supported us though all of Roger’s medical adventures and especially the last year of adjustment without him. Needless to say we miss him very, very much but look forward to the day when we will see him again in our Father’s house in heaven.
Love,
Dawn
Friday, March 9, 2012 10:28 AM CST
Monday, March 14, 2011 9:57 AM CDT
Hello Everyone,
The outpouring of support from everyone has been wonderful. Dawn and I slept very well last night are continuing the healing process. We look forward to sharing memories of Roger with all of you over the coming days and weeks. Below is the obituary that will appear in the Union Leader. It contains the dates, times and locations for the wake and funeral.
Steve
UPDATE: 03/14: THE WAKE AND FUNERAL WILL BE CLOSED CASKET IN CONSIDERATION OF CHILDREN THAT MAY ATTEND
Dateline: Weare, N.H
Roger Norman Sarette 9, died March 11, 2011 following a lengthy illness at Boston Children’s Hospital. Born in Manchester he was the son of Steven and Dawn Sarette.
Roger attended third grade at Center Woods School. He was a well known and active volunteer at Goffstown Food Pantry. Roger enjoyed Star Wars, Spiderman, video games and especially Lego’s. Along with his parents, he was a parishioner of St. Lawrence Church of Goffstown.
In addition to his parents he is survived by paternal grandparents Paul and Irene Sarette of Hooksett. Maternal grandmother Sheila Brochu of Weare. Several aunts, uncles and cousins.
Calling hours will be Friday, March 18th from 4:00 PM to 7:00PM at French and Rising Funeral Home 17 South Mast Street Goffstown. A Mass of Christian Burial will be held Saturday, March 19th 12:30PM at St. Lawrence Church. Interment will be in Mount Calvary Cemetery of Manchester. In lieu of flowers donations may be made to The Goffstown Network Inc [http://goffstownnetwork.org/]
For more information or to sign an online guestbook go to www.frenchandrising.com
Saturday, March 12, 2011 6:49 AM CST
Hello Everyone,
The outpouring of support from everyone has been wonderful. Dawn and I slept very well last night are continuing the healing process. We look forward to sharing memories of Roger with all of you over the coming days and weeks. Below is the obituary that will appear in the Union Leader. It contains the dates, times and locations for the wake and funeral.
Steve
Dateline: Weare, N.H
Roger Norman Sarette 9, died March 11, 2011 following a lengthy illness at Boston Children’s Hospital. Born in Manchester he was the son of Steven and Dawn Sarette.
Roger attended third grade at Center Woods School. He was a well known and active volunteer at Goffstown Food Pantry. Roger enjoyed Star Wars, Spiderman, video games and especially Lego’s. Along with his parents, he was a parishioner of St. Lawrence Church of Goffstown.
In addition to his parents he is survived by paternal grandparents Paul and Irene Sarette of Hooksett. Maternal grandmother Sheila Brochu of Weare. Several aunts, uncles and cousins.
Calling hours will be Friday, March 18th from 4:00 PM to 7:00PM at French and Rising Funeral Home 17 South Mast Street Goffstown. A Mass of Christian Burial will be held Saturday, March 19th 12:30PM at St. Lawrence Church. Interment will be in Mount Calvary Cemetery of Manchester. In lieu of flowers donations may be made to The Goffstown Network Inc [http://goffstownnetwork.org/]
For more information or to sign an online guestbook go to www.frenchandrising.com
Friday, March 11, 2011 6:15 AM EST
God called Roger home this morning around 4:30am, he is at peace in paradise.
We will post arrangements as we figure them out.
Emails are welcome but please hold the phone calls a bit until we can get a little rest.
Love to all,
Dawn and Steve
Thursday, March 10, 2011 2:21 PM EST
I dont't have a lot of time for details right now but things are again turning in an undesirable direction. Tuesday we had made it to the regular floor and Wednesday was busy but went OK. This moring some labs came back not good and an ultrasound showed the portal vein had clotted again. Also his white blood cell count was very high and his body temp getting low, likely indicating he may be going septic with an infection taking hold in his whole body. Right now we are waiting on our transfer back to ICU and who knows what next. The posible next step may be surgery to open the vein or a few other things up to and including retransplantation.
This is not great and he (we) could use all the prayer power you have left. Though at the moment he is awake but disoriented but comfortable.
Love,
Dawn
Monday, March 7, 2011 11:02 AM EST
Roger is receiving his third Plasmapheresis treatment right now, so far they have been going well but it will be some time before we know if the treatment plan is working. We can follow some blood values before and after the PP treatments and know if the anti body levels are decreased (they almost certainly will be) but it will be harder to tell if the liver is able to rebound and heal. The plan is for more treatments on Tuesday and Wednesday and then we stop to reassess how things are going.
He is also finishing the really high dose steroid treatment and should start tapering down the dose today I think. The steroids make him pretty puffy and a bit grumpy, they also make your blood sugar go way up so he has been on insulin to help keep that under control. These are being done to treat any regular cellular rejection he might be having in addition to the antibody rejection.
The NG tube (the one in his nose) was removed late Saturday and he has been cleared to take a small amount of water by mouth. At this point we are not working toward advancing his diet but really giving his digestive system a break. He got a bad case of pancreatitis after his transplant surgery and when you eat your pancreas has to work to make digestive enzymes, making the pancreas work a lot will not let it rest and heal as we need it too. There is no treatment for pancreatitis except time.
All this is catching up with him a bit and he just feels kind of yucky. Thanks for the prayers!
Love,
Dawn
Friday, March 4, 2011 1:46 PM EST
It appears that Roger is having a bout of antibody mediated rejection, also known as humoral rejection, and of course this is something almost unheard of with a liver transplant. It is however something seen with kidney and heart transplants so fortunately there are some existing protocols that we will be following and modifying to suit Roger’s needs. I will attempt to explain all this as best I can but we are moving into very technically confusing areas now. I should have paid better attention during the immune system lectures in college.
Your immune system has different kinds of cells with different jobs. There are T cells that are responsible for cellular rejection (the most common kind of rejection) and the meds that Roger takes are to suppress these T cells. There are also B cells which are responsible for making antibodies, often these are helpful to the body and are the reason we get vaccinations. But Roger’s body has made antibodies against his new liver. They are attaching to the liver and trying to destroy it as a foreign substance, thus making the liver VERY unhappy.
SO…the plan is to do a procedure called Plasmapheresis (PP) to remove those antibodies, give him an immune suppressing drug to tell the body not to make more antibodies and then hope that the liver can recover from the antibody attack.
The PP draws out Roger’s blood through an IV, separates the blood cells from the plasma (liquid part of blood), combines Roger’s blood cells with plasma from donors and then returns that mix back to Roger through the other port of his IV. He had a new IV placed in the OR this morning for these treatments and the first treatment should be this afternoon. A big machine comes to his ICU room and the process takes a couple of hours.
We will do treatments every other day for a few days and then see how things are going, mostly checking lab values and such to see if it is working. It often takes many weeks of treatments to clear out all of the problem causing antibodies. With kidney and heart transplants this treatment is usually done pre-transplant to avoid a rejection problem, not often has it been used post-transplant to reverse a rejection problem. There are a WHOLE LOT of unknowns here but I’ll do my best to keep everyone up to date as we go along. Feel free to email or post questions in the guestbook and I’ll see what I can find out.
On the bright side, the surgeons were able to fix the clotting in the portal vein yesterday and the ultrasound today show that there is still OK flow there. Roger also got his breathing tube removed this afternoon and is very happy about that, now he can boss us around with words instead of just pointing at what he wants!
Needless to say prayers are welcome, even if this works the road is going to be long.
Love,
Dawn
Thursday, March 3, 2011 12:38 PM EST
BIG bump in the road.
Roger has had another clot in his portal vein (same problem he had with his first transplants). As mentioned in the last update he was going to IR yesterday for a check on the portal vein and a liver biopsy, while in IR they found that the vein was totally blocked and took him from IR directly to the OR still asleep. The surgeons were able to remove the clot and revise the connection between the donor vessel and Roger’s. Today the blood flow in the vein is good but the flow into the liver itself is not as much as we would like, the liver is “unhappy” and we are still not sure why. It could be that there is rejection in the liver or something else that has injured the liver. We are running many tests and today are waiting on the biopsy results to help point us in a treatment direction. But the bottom line is we do not know why any of this has happened or what we can do to treat it or what this will mean for his new liver and in the end for him in general.
He is currently in the ICU and on the ventilator but very awake and able to interact with us and answer questions. We hope that he can get off the vent soon but it may be until tomorrow before the ICU docs are comfortable taking the tube out.
Please pray that we can figure out what’s going on and that there is a treatment for it.
Love,
Dawn
Wednesday, March 2, 2011 10:44 AM EST
Progress has stalled a bit for now. Roger has continued to have sleep and anxiety issues over the last few days and just is not feeling well. He is sick to his stomach often and has a fair amount of muscle ache from lots of time in bed or sitting in the chair. He is able to get up and walk with help but just doesn’t feel up to it a lot.
Today he is having an Interventional Radiology (IR) procedure to check on his new liver, specifically blood flow in the portal vein and a biopsy to check on suspected acute rejection. The rejecting should be treatable with proper medication but the blood flow could be a bigger issue. Both of these could be the source of his not feeling well and would at least give us something to work on to try and get him back on track. And while he is asleep today they are planning to do all his dressing changes and things that he really does not like to go through awake, so that is good.
Please keep up the prayers for his anxiety and sleep, he could use a lot less of the first one and a lot more of the second.
Love,
Dawn
Sunday, February 27, 2011 4:41 PM CST
Hello All,
It's a rare occassion when I'm [Dad] providing an update. Primarily because Mom is taking hospital duty alone this week while I head back to work and she has her hands full.
We have another prayer request. So far we are 2 for 2 (1-pee, 2 poop) thanks to all of the wonderful prayers. Roger is in need of sleep and peace of mind. As he starts to feel better his body is starting to feel a bit achey (especially his back) and he is getting very anxious any time someone other than mom or dad come in the room. So many tubes, tape, etc being removed over the past year has caught up to him. He hasn't slept much at all in the past 48 hours and it's really catching up to him and by extension mom.
On the positive side his body is getting stronger each day. Today he sat in the chair for a while, practiced standing up and down several times, did some strectching for his legs and walked on the side of his bed a few steps. He has a few tubes still attached that are confining him to his room right now. Once those are gone he'll be running laps in no time.
Thanks again for checking in.
We are truly blessed by God's grace each and every day.
Love,
Steve
Friday, February 25, 2011 8:31 PM EST
Sorry, the update is overdue. We did finally get to move back to the 10 South (the regular transplant floor) Wednesday evening and we have been a bit busy settling back in and making more strides forward. We still have a long road ahead (likely weeks) but so far moving forward.
On Thursday Roger did get the urine catheter removed and got another of his JP drains removed (still two to go). The JP drains let any fluid that accumulates in his abdomen flow out and not make pockets inside that could become infected and maybe cause more abdominal abscesses (those lead to holes in the tummy and we don’t want them!). He has been feeling better and getting more mobile each day, often spending a few hours out of bed and in the chair each day.
Roger has started taking many of his meds by mouth and has been cleared by the docs to start taking water and Pediasure by mouth as he feels up to it. So far he has not had a lot but if he can take some and not have any nausea/vomiting he can get the NG tube out. The NG tube goes in his nose and down to his stomach, it allows us to suction out anything the makes his tummy upset as it is getting used to having things go in there again. The great news is that he did stool three times last night, so his bowels are moving again and hopefully he will be eating and drinking soon.
On the down side he is receiving steroid treatment for a suspected bout of acute rejection. It is not unusual to have some rejection, especially in Roger’s case because of his other transplants. The way the doc described it was that his immune system was already “primed” to reject but acute rejection is usually easily treated and should not be a big deal. On the up side most of his lab values are moving in the right direction and the x-ray and ultrasound he had today showed no real concerns.
Thanks as always for the prayers and support.
Love,
Dawn
Wednesday, February 23, 2011 5:07 PM EST
We have pee! Within a few hours of my update and request for prayers yesterday Roger’s urine output really went up. This morning his kidney lab numbers were already on their way back down to where we want them to be. Isn’t God great, ask and you shall receive.
Today the surgeons changed the vac dressing that is covering the entire incision. This means lots of sticky dressing but Roger was able to get good sedation because we were still in the ICU where the “good drugs” are and he tolerated it very well.
He also got his last arterial line out in preparation for moving to the regular floor. We are actually waiting right now for a room and nurse to become available so that we can go. Very, very good news. Roger is not really “sick enough” to be in the ICU so you really see a staffing change. No more one to one means nursing care is harder to find, time to go.
So the next big steps will be getting the urine tube out (it is very uncomfortable for him) and getting the NG tube out of his nose (also unpleasant). The NG can come out after his bowels wake up. So today I guess we need prayers for a bowel movement (or even a bit of passing gas).
Love to all,
Dawn
Monday, February 21, 2011 12:04 PM EST
Things continue to be quiet but very slow going. At the moment we are still waiting for Roger’s kidneys and intestines to get over the shock of his very long surgery and wake up again. It is a fine line between giving him enough fluids to help and avoiding giving more than he needs and making the kidneys worse. All of this is expected but it is still hard to wait on it. We would very much like to get out of the ICU but probably won’t be able to until the fluid balance is better and the kidneys are putting out more urine. Please pray for pee!
Roger got up to the chair again this morning and even supported much of his own weight standing up to get weighed. He is happy to be moving a bit but it is very tiring and it does take a lot out of him each time. Overall he is doing very well and everything we are currently experiencing seems appropriate due to his long and complicated surgery.
Thanks for checking in and supporting us with your thoughts and prayers.
Love,
Dawn
Saturday, February 19, 2011 3:07 PM EST
Another quiet but productive day so far. He got another IV out today, a very large one that was in his neck so he is a lot more comfortable there. And today’s really big event was getting out of bed into the chair. It is a lot of work but the change of position feels good he says.
His tummy and bowels have not woken up yet but he is slowly peeing off the extra fluid he has accumulated and trying to make his kidneys happy again. The bummer today is that he is still having some nausea from time to time and has thrown up a bit of fluid a few times. He has an NG tube in his stomach to pull out the extra digestive juices that build up because his bowels are not moving yet, but once in awhile he still gets tummy upset.
I put a few new pictures in the photos section too.
Love,
Dawn
Friday, February 18, 2011 11:38 AM EST
Things continue to be quiet and moving in a positive direction. Roger got the breathing tube out yesterday afternoon about 1:30. His first word was “treat” (as in what did you get me) and the next was “water”. It will still be a few days before he is able to really take anything by mouth, during surgery (especially one as long as his was) your bowels kind of shut down and until they wake up nothing will move through and anything you eat or drink will just get thrown up.
This morning he got one of his extra IVs removed and one of the two arterial lines removed. Each piece of hardware we get rid of gets us one step closer to moving back to the regular floor on 10 South. If things continue as they are going that may even happen in the next couple of days. It will be nice to get there again and have things all in the same spot, logistically a whole bunch easier.
He had an ultrasound this morning that looks good so far and his labs are stable. Mostly he is still sleeping but is not on any sedation meds and has only taken a very small amount of morphine for pain. He is one tough kid and has earned the rest he is having.
Thanks once again for the prayers and support.
Love to all,
Dawn
Thursday, February 17, 2011 8:56 AM EST
Roger is resting comfortably in the ICU, he had a quiet night and this morning opened his eyes when Steve and I were talking to him (during the night he responded to the nurse and squeezed her hand when asked to.) Of course he has many, many tubes and IVs going and at this point is still on the ventilator (mostly so his body can just rest). He has had a couple of ultrasounds so far and they show good blood flow and no pockets of fluids in his tummy (meaning there are no leaks apparent right now). We saw our surgeons this morning and they are pleased with things thus far.
Today’s plan is to help him get rid of all the extra fluid he has on board from the surgery, he is really puffy. I think after some of the puffiness goes down the next thing might be trying to get off the ventilator and get the breathing tube out.
Yesterday had lots of big news and changes but today starts the slow road of little steps toward recovery. Thank you all so much for the prayers and support, it is felt and appreciated, we love you all.
Love,
Dawn
Wednesday, February 16, 2011 3:30 PM EST
We just received word that the HOLE IS CLOSED! I think that in the end that is the best news Roger could wake up to. The new liver is continuing to do well and it looks like they will be able to fully close him today. They were able to leave his spleen in which is an unexpected plus. Needless to say we are thrilled with the news but there is still a long way to go.
Thanks for the prayers and support.
Love,
Dawn
Wednesday, February 16, 2011 12:20 PM EST
The noon update says that things are "quiet" but moving slowly because of all the adhesions (generally the mess) in his abdomen from all his surgeries. The new liver is in and the blood flow has been established, the hope was that this would help resolve much of his bleeding problem as the new liver started to do it's thing. As expected it was pretty rough at first and he lost A LOT of blood but they were able to stay on top of things and keep him stable. At this point we are not sure if they will be able to fully close him today or if he'll need to go back again later to finally fix "hole" for good.
Thanks again for the prayers,
Dawn
Wednesday, February 16, 2011 8:56 AM EST
We received an update from the O.R. around 8:15am that things were going well. They were working on the blood vessel connections, this is really tricky for Roger due to all his previous clotting issues.
Thanks for the prayers,
Dawn
Wednesday, February 16, 2011 7:05 AM EST
This one was good for Roger and he went to the O.R. at 2am. We have not had any updates yet but expect that this will be a very long and difficult surgery. Steve and I were able to get a parent sleep space and have been trying to get some rest.
Please keep the prayers coming, we love you all!
Dawn
Tuesday, February 15, 2011 2:54 PM EST
Well…it seems we are going to try this again.
As of now we have another liver that looks good on paper but the surgeons have not gone to see it with their own eyes yet. So it will likely be another middle of the night deal IF it is a go. Of course we are all optimistically hopeful this will be a go but we will not know till much later.
All of you, our prayer warriors, really got behind us the last time and we welcome your efforts again!
Updates will occur as we are able.
Love,
Dawn
Monday, February 14, 2011 1:41 PM EST
Things here seem to be moving in a positive direction. The wound vac was stopped Saturday morning and the gauze/tegaderm dressing that replaced the vac has not been too bad to change. The wound itself is healing nicely. This morning we stopped one of the two antibiotics Roger has been on and the surgeon even brought up the topic of planning to get home soon (that was a little surprising).
Roger has been feeling pretty well and had a video game filled weekend with Dad. Today was back to tutoring in the morning and around lunch time we went out for a wheelchair ride (OK, Roger rode and I pushed) in the garden. The temp was in the 40’s and was not too bad until a little breeze started up, the fresh air was nice.
Happy Valentine’s Day!
Love,
Dawn
Thursday, February 10, 2011 2:46 PM EST
The big yucky lump was drained and as suspected Roger has a wound vac again. The good news is that the new wound is not really large (especially compared to the wound that started this odyssey last spring). But yesterday was discouraging because it looked like the redness was still getting worse and we thought Roger might have to go back to the O. R. today for more draining and exploration. Luckily this morning the redness has stopped and may have even improved some.
We are getting settled back in to hospital life and even got some done tutoring the last two days. Roger has a great teacher here at the hospital and she has been very accommodating of our weird schedule.
Please continue your prayers for a new liver, we need one before Roger’s tummy is totally full of holes and turned into “Swiss cheese”. Thanks and we love you.
Dawn
Tuesday, February 8, 2011 9:54 AM EST
It was a very nice 10 days at home but now we have checked back in at “Hotel CHB”. Last Wednesday Roger developed a couple of lumps on his tummy, we had them checked out in the clinic Friday and ran IV antibiotics at home over the weekend but by this Monday they were red and angry and infected.
Today we are waiting our turn to go to the O.R. to have the big yucky one drained. We’ll see how things turn out but there is a pretty good chance that Roger will be back on a wound vac to get this new hole closed up properly, not fun-we’ve been here and done this before!
Sorry for the long break in updates but when we’re home there is a lot to keep busy with and I just don’t seem to get to this as much. While we were home Roger did get a chance to visit with a few friends and even made an appearance at school to say Hi. It was a good break.
Love,
Dawn
Friday, January 28, 2011 8:02 AM EST
You won’t believe this one. The transplant did not happen last night. Our surgeons went to obtain the donor liver and when they saw it they had some BIG concerns over how healthy it was. On paper the situation seemed perfect but in actuality the liver was just not good enough.
Needless to say we are bummed out but on the positive side we are still on track to head back home today.
THANKS to all for the love, prayers and support, we will call on you again (soon we hope).
Love,
Dawn
Thursday, January 27, 2011 4:55 PM EST
WE GOT OUR CALL!!!
We found out at rounds this afternoon that a liver was available for Roger. He will get part of a liver and someone else will get the other part, this is called a split liver transplant.
Our surgeons hope to be able to properly close Roger's abdomen during the transplant surgery but depending on how things are going it may require a second trip to the O.R. a few days later. The operation will likely be overnight tonight and I will post details tomorrow as I can.
As always thanks for all the support, and prayers are especially needed tonight; for Roger, for us and for the donor and their family. Please also remember our first angel donor who gave their gift of life to Roger on January 28, 2005 (yes, kind of spooky timing 6 yrs later).
Love,
Dawn
Tuesday, January 25, 2011 11:26 AM EST
Sometimes no news is good news. The infection appears to be clearing up, the last of the two drains removed itself last night (the doc had planned to remove it this morning) and the antibiotics have been stopped. The plan is to watch tummy closely for the next few days and if the redness stays away we might be able to head home Friday!
We have been surviving the hospital fairly well, Roger has had a few snow days off from tutoring and two weekend doses of Daddy video gaming time. Last weekend he had an extra long Grammy visit at the hospital while Mom and Dad went to the Patriots vs. Jets game in Foxboro. Sorry about the outcome of the game but we had a great time and a great experience at the stadium. The tickets were donated to the hospital by Wes Welker and his girlfriend Anna, our nurse friends thought we’d be a great choice to receive the tickets and so we got them. They were pretty good seats in the second tier at the “Lighthouse” end of the field. It was VERY cold but A LOT of fun!
So hopefully the rest of the week will be medically quiet and we can get home again (at least for a little while). Just for “fun” I was totaling up how much time we have been in recently. Since Nov. 3rd it has been like this; 22 days in, 6 days home, 3 days in, 3 days home, 23 days in, 4 days home, 23 days in and counting on this trip. For a grand total of 71 days in (so far) and 13 days home, no wonder we are getting tired of the hospital!
Thanks for checking on us and praying for us.
Love,
Dawn
Friday, January 14, 2011 9:25 AM EST
Things have been mostly quiet this week. We have been watching the redness of the infection very closely and keeping up with the IV antibiotics. We had been down to only one antibiotic but some redness reappeared and we went back on the other again, small step back I guess. But that returning redness is not spreading any farther and looks this morning to have even improved some. The surgeons plan to leave the one drain that is left in the new hole until the redness goes away. The drain is small and fits inside the ostomy appliance so it has not really been too bad to deal with, only a bother when changing the ostomy skin part.
Roger has been busy this week with tutoring, exercise and visits to the play room. School has been going well and he and the tutor seem to be working well together, he has even been good (mostly) about getting his homework done. Of course the snow day Wednesday helped and next Monday will be a holiday too.
Dad will be coming the afternoon and Roger is looking forward to more “guys” time and all the video gaming that includes. I will try to get home again for a night in my own bed and a little break from hospital life.
Continued thanks for all the support, prayers, meals, cards and well wishes. We love you all.
Dawn
Monday, January 10, 2011 4:03 PM EST
The new tummy hole is progressing nicely, it has become less red and angry looking, and more healing looking. There are still some areas of mild redness on the middle part of his tummy (maybe a little of the infection still) but they seem under control at this time. As of now the two holes still fit inside the one ostomy appliance and we are happy about that (no real reason for that to change yet but you really never know with him).
Roger spirits have continued to be good and he and Dad enjoyed a lot of video game time over the weekend while Mom went home for a short break. Today has been back to the weekday grind, more docs around to poke at tummy and of course tutoring (worse even is that he got homework today!).
So things are in a holding pattern for now, watching closely for any sign of infection returning and keeping going with the IV antibiotics. We’d really like to get our call for a new liver soon, time seems to be just dragging on. Please keep up your prayers, we need all the help we can get right now to not get discouraged during the waiting.
Love to All,
Dawn
P.S. Tracy, the mat has been a welcome improvement to the sleeping accommodations around here. I’m not sure I agree with the “shockingly comfortable” review I read but it is a big improvement over the wimpy cushion that the hospital provides.
Thursday, January 6, 2011 7:53 PM EST
Roger finally made it to the OR around 8:30pm last night and by 11pm we were settled back in our room and off to sleep for the night. Things went well, the surgeon was able to drain the area, clean it out some and place two small drains under his skin to help keep away any further accumulations of yuck. There was some bleeding, some infection and even some dead tissue (the yuck) and we’re not really sure what caused things. It could just be a spontaneous thing due to the mesh from Roger’s abdominal reconstruction and his immune suppression. So the bummer is that now Roger has a second hole in his belly right next to the first one. Both are still able to be contained in the ostomy appliance we are using but it is not a pretty sight and certainly a bummer when one hole was already more than we wanted.
Not sure yet how this plays into the overall transplant scenario but the surgeon indicated that it would not at this point prevent him from having transplant surgery unless the infection got out of control. He is on two antibiotics and an antifungal medicine to help keep the situation under control, they cultured the fluid that drained out and we may be able to narrow down the best medicines to use once we know the type of bug (or bugs) that are there.
On the bright side Roger woke this morning feeling pretty well, the pain and redness he had was gone and as long as you didn’t touch right at the spot that was opened he felt fine. We went for a few walks, had a tutoring session and many laughs throughout the day. We just really, really would like to get our call for a new liver before we have any more new “fun” come up. Thanks as always for the support and prayers, we appreciate it.
Love,
Dawn
Wednesday, January 5, 2011 3:57 PM EST
We are back in the hospital as of Monday night. Roger developed a very concerning area of redness around his fistula site starting Sunday afternoon. His team was concerned about a possible infection so we were admitted for IV antibiotics and observation. Yesterday things seemed under control, the redness had improved but there was a lot of swelling-basically a very large lump had formed. There was some debate about whether or not to drain it, we opted to just watch and wait.
Today a new redness developed this afternoon. No more debate, we are waiting on a spot in the OR to get in and have our surgeon drain the lump and explore what's going on in there. The concern is infection and potentially a pocket of bleeding under the skin surface.
Always something "fun" with us. I will post more info as it becomes available. Extra prayers are certainly welcome!
Love you all,
Dawn
Thursday, December 30, 2010 7:11 AM EST
WE'RE HOME (at least for now) and very glad to have slept in our own beds last night!
Tuesday, December 28, 2010 11:39 AM EST
Merry Christmas!! We all hope you had a great time with your families. We were able to be together as a family here at the hospital and the nurses helped set up the room next door for us to use for unwrapping gifts and visiting with family on Christmas day, we even had a little tree. Santa was extra generous with Roger this year, one of the benefits of being in the hospital for Christmas. I’m not sure there is a Lego left out there for anyone else! There was a nice little Mass here Christmas morning and Roger got to help out Fr. Bob by placing the baby Jesus in the manger scene.
Another nice benefit of hospital living in the winter is that we are fully insulated from snow storms, nice and warm inside and no shoveling required. We hope you have all survived the blizzard and are shoveled out to enjoy school vacation. Roger has been continuing with his tutoring here in the hospital, he’s already had a lot of “vacation” time, one of the downsides of being in the hospital.
But I think we may be able to get a taste of the outside world again soon. Things have been very stable for Roger medically over the last week to week and a half since his ammonia episode and we are planning to try to go home tomorrow. I say try because you never know what might crop up but we feel that his current plan is working and if we stick to it we should be able to do it at home. We will continue with his IV fluids and nutrition (called PN, parenteral nutrition) and limit his oral fluids so hole does not put out too much, but he can eat whatever solids he’d like. So keep your fingers crossed (and prayer going) that we can do some of our waiting at home!
Love,
Dawn
P.S. There are some new photos of Roger and some of his guest visitors in the photos section of the webpage. The main page photo is Roger’s new school picture from this year.
Friday, December 24, 2010 12:46 PM EST
Our week has continued to be mostly quiet medically. As you all know Roger’s feeding tube (a.k.a. Tubie) has been on/off functional and a real pain when changing his ostomy bag. Well we are finally done with it and it was removed earlier this week. One less piece of equipment is nice. We had wanted to make sure that food was still going through Roger’s intestines and that they did not shut down so to speak because this would create problems later after he stopped getting IV nutrition. His team feels that what he take in by mouth is probably enough to keep his intestines happy and we’re going to try without the feeding tube.
Last night was our one medically interesting event for the week (at least so far). I had just arrived back home after Steve took over at the hospital for the night when he called. The surgeon was on his way to evaluate a potential liver for Roger. Roger had been made NPO (cannot eat or drink by mouth) in preparation for a potential surgery and we would know for sure in a couple of hours. As it turns out the liver was not appropriate for Roger and we experienced what is called in the business a false alarm. This kind of thing is fairly common, we just had not experienced it with our first transplant wait. Due to the short time windows for the transplants to happen and the variety on individual patient needs the system allows for multiple patients to be “ready” in any given circumstance. So a bummer this time but good news that even though Roger has been at a PELD of 40 for less than two weeks we were already very close.
We are making our final preparations for celebrating Christmas in the hospital, making sure Santa knows where to find us and fitting the last of the nativity characters onto our Advent calendar. Mom, Dad and Roger will spend the next few days together at the hospital, we have Mass on Christmas day and visits planned from Grammy, Memere and Pepere.
Merry Christmas to everyone and many, many, many thanks for the continued prayers, support and wonderfully generous gifts that arrive each day!
Love,
Dawn
Tuesday, December 21, 2010 10:51 AM EST
We got upgraded to a new room, “the Suite” as it is called. It is just next door to our “Snoopy” room but much larger and with more windows. Given that we may be here awhile the staff wanted us to be as comfortable as possible.
Yesterday was another one of those “Children’s Hospital” days when you never know what will happen or who you’ll see. Roger and I were able to attend a Christmas concert in the Patient Entertainment Area given by Keith Lockhart and the Boston Pops (some of them at least, it is a small area) with their special guest Joey McIntyre from the New Kids in the Block (late 80’s boy band, a little after my high school days but I had heard of them). The concert was a lot of fun and had some sing along Christmas songs and the kids got Santa hats and jingle bells to ring.
OK as I am sitting in the hall typing up this update Snow White and her posse just walked by. You really never know what is going to happen around here.
Not much on the schedule for today, a little tutoring and try to get some exercise with a few more laps around the floor.
Thanks for checking in on us,
Love,
Dawn
Sunday, December 19, 2010 6:02 PM EST
Sorry for the delay in updates, our computer had turned into a movie player because our room DVD is only working sporadically. That situation has been resolved, I picked up a new portable DVD player yesterday and that has freed up the computer for computer things.
The end of the week continued to be medically uneventful. Wednesday Roger was able to get a long overdue shower which seemed to lift his spirits some. Thursday we had a visit from Memere, Pepere and their friend Jean, they and Roger had fun playing a card game in the afternoon. Friday Daddy came early and we had a family day, Mom and Dad even got out for a date for lunch. The boys took over and had a lot of video gaming and hanging out, weekends around here are pretty quiet so you really have most of the time to yourself. I went home Friday night and stayed through till Sunday morning when Grammy and I joined the boys for Mass at the hospital. Gram and Roger hung out for a bit and Mom and Dad got another date.
Roger has been feeling well overall and his energy has been pretty good the last few days. He finally had a tutoring session on Friday afternoon and he tried hard and seemed to have a pretty good session. The tutoring should resume tomorrow when weekday things get going around here again.
We continue to wait patiently for Roger’s new liver and are always thankful for all the support we are receiving from family and friends. Many thanks for the wonderful meals that continue to arrive at home, the countless cards, the awesome projects from school, the gifts of toys for Roger and gift cards for the family. There is no way I could ever thank each of you individually but please know that it is so very much appreciated. And thank you again for all the prayers, we really feel lifted.
With Love,
Dawn
Tuesday, December 14, 2010 5:03 PM EST
It’s a good thing that we got that letter to Santa written yesterday, he was here at the hospital today visiting kids before Christmas. He had already read Roger’s letter and they talked a bit about the Lego sets that were on his list. We also asked Santa to bring a new liver but not a Lego one!
Medically things were quiet today, just watching his hydration and trying to keep his body full of nutrition and as exercised as we can. The good news today was that our request to get him to a PELD score of 40 was approved. This means that he is in better standing to receive a split liver from an adult donor. The system works in favor of kids in that any pediatric donors must go to pediatric recipients but as far as adult donors the high score really helps. We are hopeful that this will mean our wait may be weeks instead of months, but there really is no possible way of knowing when our call will come. We must be always ready and wait patiently.
Thanks for the prayers and support.
Love,
Dawn
Monday, December 13, 2010 2:41 PM EST
Dad took over for most of the weekend, so that Mom could get home to regroup a bit, and the Snoopy room turned into the Boys Zone! There was lots of video gaming and other fun stuff that Mom never allows. Medically things were mostly quiet except for MANY ostomy bag changes on Sunday. It seems to be a little better in control today but I don’t like to speak of it out loud.
Roger’s most important item on today’s agenda was to get his letter to Santa finished and into the mail. We just returned for the nurses’ station where we dropped the letter in the mail and it is on the way to the North Pole. Yeah!
Other than that we’re just hanging out, trying to keep busy. Thanks as always for the prayers, love, meals and support. We LOVE you all.
Love,
Dawn and Roger
Friday, December 10, 2010 9:13 AM EST
We are settled and comfortable in our “Snoopy room” and Roger seems fully back to himself. Yesterday afternoon the docs cleared him to eat and he filled up on pretzels, Ensure milkshakes and mac & cheese for dinner. Overnight things were mostly quiet. We had to change his ostomy bag around midnight but the new one seems to be holding well so far.
This morning he had some bits of pancake for breakfast and is finishing off with cheetos (we relax the rules in the hospital). The plan today is to get up and get the body moving more, physical therapy will visit and we’ll try some laps around the floor later.
Thanks for checking in,
Dawn and Roger
Wednesday, December 8, 2010 8:35 AM EST
THURSDAY AFTERNOON
We escaped the ICU and arrived on 10 South, the transplant floor, around noon. It was a good move and Roger actually slept through the whole trip. He was happy to wake up in the "Snoopy" room (there is a Snoopy painted on the window in the door), this is where we were for our first two week admission here at Children's and so far our favorite room. It is nice to have our own fridge and bathroom.
Roger is still waiting on the docs to decide if he can start drinking his milkshakes again, right now it is just sips of water. Hopefully soon they will be doing afternoon rounds and he can give them a "talking to" about it.
Love,
Dawn
THURSDAY MORNING
Throughout yesterday his ammonia level continued to come down and his alertness increased. It is early but already today Roger is feeling much more like himself. We both got a pretty good night’s sleep and he was awake for the day at his usual 6am. And he is beginning the day like most others in the hospital by playing his DS. I’m sure the docs will like to see him doing his “regular” things and with any luck we can get out of the ICU today and on to the regular floor, it would make everything a lot easier and more comfortable. The ICU is tough to stay in, no food allowed in the room and you even have to leave the unit to use the restroom. Back on the floor we can settle in a little more and do our own thing, kind of get our home away from thing going.
Thanks for the continued support and prayers, it is being felt.
Love,
Dawn
WEDNESDAY
BIG bump in the road. We had an OK weekend at home but by Monday things were starting to go downhill. Roger was not getting enough hydration from his tube feeds even though the new tube was working fine, his fistula hole just puts out too much to keep up with. I spoke with his team Monday, started giving some IV fluids at home and had VNA come to check his labs. His labs showed he was VERY dehydrated and we would check them again Tuesday after he got some more IV fluids.
He woke fine Tuesday but started getting very tired fast and just not himself. By the time his VNA nurse got to the house I was concerned he was having a seizure. She and I gave his emergency seizure med and called the ambulance to take him to Elliot Hospital to stabilize him to travel to Boston. He was not himself but this was different than the seizures he used to have. After lab tests and a CT scan we went by ambulance to CHB to see his transplant team. Once there we were weighing two possible causes to his disorientation, stoke or too high of an ammonia level causing hepatic encephalopathy.
They were thinking of sending him for a MRI to check on the stroke issue but were concerned he was not stable enough to get in the machine. So instead we were sent to the ICU to try to get him stabilized and continue to evaluate him and trouble shoot what was going on. More and more things were pointed to the elevated ammonia level so we started giving fluids and some meds to work on getting the level down. Usually your liver and kidneys clear ammonia out of your system (it is a by-product of metabolism) but his liver is slow due to the chronic rejection and his kidneys are slow for now due to the severe dehydration he is experiencing.
He is slowing starting to get back to normal. This morning he is responding to questions but still very tired and out of it. The ammonia build up essentially makes him act like he is falling down drunk so I guess he is maybe more like hung over today as the level is coming down.
This event has certainly increased the urgency of getting him a new liver and his team is working on ways of petitioning for exception points to his PELD score or a change in his listing status that would increase his chances of getting a call. But this also shows us that we are likely going to be in the hospital until he gets his transplant. We keep a pretty close eye on him at home but this just got out of control too fast and too serious. Please pray for him.
Love,
Dawn
Saturday, December 4, 2010 8:15 AM EST
We slept in our own beds last night, YEAH!!! Tubie finally cooperated by early afternoon and we were able to hit the road.
The tube adjustment ended up happening early Friday morning and was only a minor job but the tube was being fussy about being using for feeding. It would flush fine but not work with the feeding pump. We tried MANY different things and I think every nurse on the floor was helping trouble shoot Roger’s tubie. Finally one thing worked and we let it run for a few hours just to make sure, and last night here at home it seemed to work fine too.
Thanks for the “tubie success” prayers.
Love,
Dawn
Thursday, December 2, 2010 5:54 PM EST
THURSDAY
Roger had a very busy morning dealing with his feeding tube. First we went to Fluoroscopy (Fluoro) to see if one of the transplant surgeons could get the tube to go in the right spot, nope. Then we went to Interventional Radiology (IR) to see if they could get it in the right spot, kind of. It took about an hour and a half of “fishing around” to get it in what we thought was the right spot. But a few hours later when we tried to run some feeds through it, it would not work. So the surgeon tried adjusting it while Roger was in bed in his room, nope. So now we are going to try going back to IR tomorrow to see if we can get it better. I’m not sure how long we beat our heads against this wall before we say it does not work. Unfortunately the next choice would be IV nutrition and that is VERY bad for your liver and not what we really want to do. I believe this is called the rock and a hard place. Please pray for tubie success tomorrow!
Thanks for checking on us,
Dawn
WEDNESDAY
We are back in hospital, for a short visit we hope.
The feeding tube that is in the hole in Roger’s intestine keeps working its way back out and is being quite a problem at the moment. It is the source of much of Roger’s nutrition and hydration and of much grief at the moment. Monday we had a down and back outpatient trip to get a new tube and by yesterday it was already giving us issues. So instead of another long trip late in the day the team admitted us so that we can get this tube thing worked out.
The break at home over Thanksgiving was great and a quiet time we really needed after all the events of the last few weeks. Many thanks again to those who are blessing us with meals, gifts, prayers and well wishes.
Love,
Dawn
Wednesday, December 1, 2010 5:09 PM EST
We are back in hospital, for a short visit we hope.
The feeding tube that is in the hole in Roger’s intestine keeps working its way back out and is being quite a problem at the moment. It is the source of much of Roger’s nutrition and hydration and of much grief at the moment. Monday we had a down and back outpatient trip to get a new tube and by yesterday it was already giving us issues. So instead of another long trip late in the day the team admitted us so that we can get this tube thing worked out.
The break at home over Thanksgiving was great and a quiet time we really needed after all the events of the last few weeks. Many thanks again to those who are blessing us with meals, gifts, prayers and well wishes.
Love,
Dawn
Wednesday, November 24, 2010 7:47 PM EST
WE'RE HOME !!!
We got home this afternoon and are very happy to be out of the hospital, at least for now. Roger got his bile tube out late yesterday and they wanted us to stay overnight for observation, so far no problems.
It has been a very long few weeks and I will try to post some more back ground about what changed for us over the last few weeks, new team and new listing etc, I know it has been a lot (my head is just starting to stop spinning).
Once again many, many thanks to everyone for the LOVE, prayers, gifts, meals, etc, we LOVE you all.
Dawn
Sunday, November 21, 2010 4:45 PM EST
The talk has begun about getting us out of here, at least for a little while. It has been a quiet weekend, I went home for a short break and Dad took over at the hospital for while, we even got to spend Friday night all together as a family. The craziness will resume tomorrow once everyone is back at work around here, but hopefully that means more help to finalize the things we need to have done so that we can go home.
I know people have asked about how the “list” works and is Roger at the top. It is more complex than a simple list and takes into account many variables like blood type, size and specific patient needs. You are given a number, a PELD/MELD score that ranks candidates who are waiting, the higher your number the greater your need for a transplant and the more likely you are to get your call. For Roger this time the surgeon is waiting for either a whole organ or a split organ because we need lots of blood vessels and bile ducts for Roger’s transplant to be successful. A living donor will not be an option this time around because if we took all the vessels needed the donor would not have enough left for them to be healthy.
MANY, MANY thanks to everyone who has sent gifts, cards, prayers and meals, we LOVE you all and truly appreciate all the support.
Love,
Dawn
Thursday, November 18, 2010 7:49 PM EST
Today was finally a quieter day medically. We have had MANY, MANY people to talk with about the relisting process, each one needing to hear the whole story of Roger for themselves and check him out for themselves. It has been a lot to deal with and reliving all the tough parts of our journey with Roger’s health many times each day is mentally exhausting. Anyway, that looks done and his listing was finalized and activated today, let the waiting begin.
On the FUN front, there are lots of things to do here at Children’s, playroom friends, volunteers, the portrait man, the harp playing lady, the clowns and more. Earlier in the week we had a visit from two Patriots players (Hoyer #8 and Brace #97) got a book and some autographs. Today we met Kendrick Perkins #47 from the Celtics and Dan Shaughnessey a Boston sports writer, got a balloon, autograph and cool photo. You never know what the day will bring around here!
Love,
Dawn
Wednesday, November 17, 2010 11:24 AM EST
The process has been set in motion to list Roger for his third transplant, we are completing the last of the testing and later today will sign the consent form. How long he will have to wait is something no one can tell, the listing process has many variables and is set up based on how urgent your need is but there are often subtle details about a donated organ that make it better or worse for each candidate. This time around Roger will require an entire organ and associated vessels so a living donor is not an option. We will again be relying on a family to make an extreme gift of life and love in the mist of their own pain.
Today we are still trying to fine tune a new feeding tube set up we are hoping to use to boost Roger’s nutrition while waiting. Yesterday the surgeon placed a feeding tube into the already existing hole in Roger’s intestine but it may not be long enough or in the right position to use for feeding. More details will follow as we figure it out. This situation is not found in any of the text books so it is all being improvised as we go along.
But overall Roger is feeling well and able to be out of bed and playing his video games. Thanks for all the thoughts and prayers, they will keep us going.
Love,
Dawn
Sunday, November 14, 2010 5:07 PM EST
Sorry it has been a VERY LONG time since any updates, I needed a break. But here we go. LOTS has happen for Roger since his tummy reconstruction in February, anyone wanting details should see the journal history section on Roger’s site. The brief summary is as follows; surgery, abscess that left an open wound, wound vac, low output enterocutaneous fistula (essentially a hole in his intestine to the surface of his skin), gauze dressings, higher output from the fistula, ostomy bag to collect output, central line for blood draws/IV meds, bleeding problems, nutrition problems, possible liver problems. Since June we have been managing Roger’s hole with an ostomy bag which has controlled the collection of output (liquid stool) enough that he has been able to be fairly active and even returned to school. Over the last few weeks he has been having quite a lot of bleeding from around his fistula and has been requiring blood transfusion and iron infusions. In addition his liver has become more unhappy, we are not sure if this is due to all the “stuff” that has been going on due to the hole or if it is a baseline decrease in his liver function. So before we can think about surgically closing up the hole we have to find out if his liver is healthy enough to handle it. Essentially he has to have a liver transplant evaluation and because our team can no longer perform new transplants at Tufts/Floating (a business decision was made to discontinue the program) we had to transfer to Children’s Hospital in Boston to have that evaluation.
We were admitted to our old team at Tufts/Floating Nov. 3rd for a bit of a “tune up” (get some blood, fluids/evaluation) and after some tests and discussion we were transferred to Children’s Nov. 8th. We’ve had a few more tests and discussions as well as starting all the other stuff involved in a transplant evaluation (mental, financial-basically can we handle a kid with a transplant-duh, I think so). At this point (Nov. 14th) we’re still not really sure what the next step will be. During one test last Friday the docs placed a drain tube in Roger’s bile duct to help drain bile out if his liver. If the lack of drainage was the reason his bilirubin went up then the drain should help within a few weeks. If the liver is starting to fail and that is the reason his bilirubin went up then we would likely be facing another transplant (which would have to happen at Children’s).
In a nut shell, we have been transferred to a new team who is going to figure out if this liver is good enough to try and close up hole or if hole will be closed as a part of another (and fairly complicated) liver transplant. Either road will be long and most likely unpleasant, any prayers you can send our way are GREATLY appreciated.
Love,
Dawn
MONDAY UPDATE
After a weeks’ worth of testing and observation the team here at Children’s has recommended Roger be listed for another liver transplant and his bowel hole would be fixed as a part of that surgery. They (and I think Dr. Rohrer from our Tufts team) feel that if a repair of the hole was attempted his liver would not have enough reserve to handle the procedure and we would then be facing an urgent transplant situation. So we will try to address his nutrition needs as best we can with the hole still open in the hopes of getting him as strong as possible to handle the retransplant. It will not be a straightforward surgery but at this point it offers the best chance of a decent quality of life in the end.
Friday, May 7, 2010 7:08 PM EST
So…we’re home again.
Not a lot of real answers, still has hole in bowel, still has open wound on tummy and still has wound vac. The “plan” is to continue to let him drink Pediasure (versus not eating ANYTHING and putting him on IV nutrition only), observe how much the wound puts out and come back to clinic in two weeks for a CT scan to see if there is fluid accumulating in his abdomen again. Fun, Fun!!!
Thank you yet again for the prayers and support, we love you all.
Dawn
Tuesday, May 4, 2010 3:09 PM EST
We are back in the hospital…again. Monday evening Roger started leaking a large amount of fluid from his wound that was not being handled by his JP bulb drain or the wound vac system. Not sure why it was leaking or from where in his body, just that it was coming out where it was not supposed to. We contacted the docs and they said come on in and we’ll try to figure it out. So by 8pm we were at the hospital, around midnight got his IV placed, from 2-3am he drank the VERY yucky contrast for the CT scan, we finally had the CT scan done around 3:30am and tucked into to catch a little sleep by 4am. We had hardly caught a few winks when it was time for morning doctor rounds and discussions of what to do. So regular morning meds around 8:30 was followed quickly at 9am with a trip to the PICU for some conscious sedation to do his dressing change and examine the wound. All went well and by 10:30 Roger was already off to the playroom! I don’t think we have EVER had that much happen that fast in the hospital. It is usually a lot of talking and waiting and not much doing. We are tired now but thankful that all those pieces fell into place, Divine Providence as out wonderful nurse put it. I agree and was definitely the “little break” that Steve and I were asking the Lord for as we drove in Monday night. Amen.
The short explanation is that he still has a small hole in his intestine somewhere that has been leaking and collecting in his body until it let itself out Monday. So the wound appears to have drained itself and the plan is to watch what comes out in the vac for the next 24 hours. He is limited to only drinking small amounts of water and no solids, if the vac output is small tomorrow we will try to give him a little something to eat and see what happens. This is a day by day, watch and wait situation…FUN!
While he was sedated they were able to remove the final skin stitches he had and the JP drain, he was glad they were gone and that he was asleep for it. He even got his vac dressing changed and reapplied while he was out, also making him very happy. The not eating thing did NOT make him happy.
So here we sit. He is in good spirits and overall feeling well, another thank you to the Lord. Please send an extra prayer Roger’s way if you can, we need all the help we can get to keep on keepin’ on.
Love,
Dawn
Friday, April 23, 2010 4:43 PM EST
Sorry for the long delay in updating. Things are continuing to go well, slow but well. Roger is feeling pretty good and his personality is back to normal. He did get his PICC line IV out last weekend and now is down to just the JP drain and wound vac. The wound vac is helping to heal the 2” by 4” open wound in his abdomen, and has a very involved (and fairly uncomfortable) dressing change three days a week. This is definitely the biggest bummer we have right now.
Yesterday we had a check up in Boston and Dr. Rohrer was pleased with the progress and wants to see us back in two weeks. At that time he will remove a few stitches that are helping with the abdominal wound. Hopefully things will be healed up enough that we can get rid of the vac but we really don’t know how long the healing will take. One day at a time.
Today we are having Roger’s first home tutoring session. He has missed A LOT of school and we are trying to get him caught up. The tutor is a teacher from his school and plans to work with him a few days a week.
Thanks for checking in.
Love,
Dawn
Wednesday, April 14, 2010 4:00 PM EST
We are finally home!!!
We got back Tuesday afternoon and have been spending today getting settled back in. Roger came home with a few pieces of “equipment” that we are getting used to and meeting with the home nurse (VNA) to get meds going and such.
He has a PICC line IV in his upper right arm, a JP bulb drain near his incision (he had these after his Feb. surgery too) and a wound-vac over the still open area in his incision. The drains are a pain because they just hang there (end up pinning them to his shirt) and the wound-vac has a whole pump thing that we have to carry around with a few feet of tubing. Pretty much makes him a bit of a couch potato but he doesn’t seem to mind it too much right now.
Not sure how soon we’ll be out and about again but feel free to phone or email whenever. We are open to visitors but please call first to make sure we are not busy with VNA or napping.
Thanks yet again for the prayers and support.
Love,
Dawn
Sunday, April 11, 2010 6:45 PM EST
It has been a busy weekend. We thought we were going home Saturday morning, he did end up getting a PICC line late Friday and the Visiting Nurse was all lined up for home to finish his 10 days of IV antibiotics, BUT……things changed quickly.
When his doctor came to check on things and give us our official discharge OK we found that his drain had bile/bowel fluid in it and it was NOT supposed to. This meant that he had developed a hole in his intestines somewhere. After his transplant in 2005 he had repeated bowel perforations (holes in the intestine) that prompted most of the repeat surgeries he had that lead to the abdominal hernia that he had repaired six weeks ago. Oh the irony!
So on Saturday he had a CT scan with contrast to try and find current the hole. Daddy had the “fun” to help Roger drink the 350ml of contrast (incredibly yucky stuff) and help Roger get through the CT. I was making a run home to do laundry and repack for what was expected to be a much longer stay in the hospital. The CT ended up not showing a hole which meant that it was so small it didn’t show up (a little good news) but we would still need to go in there and deal with the situation.
Sunday morning his surgeon reopened a part of his incision to look for the hole (didn’t see anything), repositioned his JP drain and added a new device called a wound vac to heal the opening that the bowel problem had created. It is a small sponge that is placed in the wound, covered with a suction device that is hooked up to an external vacuum pump and then covered with a clear dressing (not a pretty sight). But it should help the wound heal as quickly and neatly as possible (maybe weeks instead of months?), the alternative is to pack the wound with gauze and change it a lot, which is uncomfortable and makes for a less “pretty” finished product. So we’re going to give it a try.
All things considered Roger is feeling pretty well and his spirits are up, some video games with Dad and a couple of new toys have helped a lot. With any luck we should be heading back home by Tuesday with all our “hardware” to play home-hospital for awhile. And given that going to school with all that stuff will not be happening it looks like we’ll be playing home-school for awhile too.
Thank you for the prayers and support, Lord knows we need it at this point.
Love to All,
Dawn
Friday, April 9, 2010 7:50 AM EST
All of the cultures are final and the verdict is 10 days of IV antibiotics, YUCK! This morning we are going to have a special kind of IV placed, a PICC line, that would allow us to complete the course of meds at home with some visiting nurse help. It is only about a one hour infusion once a day and it would be a real bummer to have to stay in the hospital for that many days just for one med.
Our main doc has been away this week and should be back this morning to help us make the “official” plans. It has been a little scattered this week without him as no one wants to make a decision until he gets back and no one wants to make a decision that puts Roger through more stuff. We talked about trying an oral antibiotic so that he would not have to get a PICC line but it is probably not really the best med for the germ and we might be short cutting things now that we’ll regret later. Kind of a no win situation.
His incision was looking better yesterday when we changed the dressing, and they used a different kind of dressing that should easier to change and not pull so much on the stitches therefore being less painful, we’ll see.
We’re both getting a bit frustrated at still being here, not to mention bored out of our minds and tired of having nurses and doctors waking us up all the time.
Thanks for the prayers and well wishes.
Love,
Dawn
Wednesday, April 7, 2010 9:14 AM EST
The procedure went well. It lasted about an hour and a half, they reopened the incision about 4 inches, drained and washed out the gunk, placed another JP drain and closed everything back up. The surgeon thinks this may have been brewing deeper in his tummy and came to the surface or was really brought out by the stitches that were rubbing under the skin. Unfortunately the stitches he closed with this time are not dissolvable and will need to be taken out later, that will bother Roger. He is back to wearing a binder for a bit but it helps when he has the drain, it gives us a safe place to pin it. He is not really in any pain but just unhappy having all the “stuff” again.
We are still waiting on the cultures of the gunk to show us what germ we are dealing with and which antibiotic is best. Hopefully it will not be a resistant type and oral meds will be OK.
So at this point it seems like a small set back but time will tell.
Thanks for checking on us,
Dawn
Monday, April 5, 2010 7:13 PM EST
Bump in the road.
We came in for the six week follow up and discovered a small set back. He has developed an irritation to his skin from the stitches underneath rubbing on the top layer of skin. It is pretty red and there seems to be a small pocket of fluid that is under the skin and it appears to be infected. The “fancy” term for all this is cellulitis (not sure of the spelling). So he has been admitted to the hospital and has started on IV antibiotics to address the infection. In the morning he will go to the operating room for a quick procedure to open the incision where the issue is and clean out the gunk. I don’t remember the “fancy” term for that.
Other than being a bit sore at the site he is doing well but VERY unhappy about being back here. The current plan is to clean out the site and culture the gunk so that we can get the best antibiotic coverage, which may take a couple of days for the culture results. If it responds well to the IV meds then we can transition to oral meds and go home. BUT all plans are subject to change without notice!
I’ll try to post again in the morning after he is done the procedure.
Love,
Dawn
Tuesday, March 23, 2010 12:43 PM EDT
Each day things are improving and Roger is slowly getting back to doing his regular things. Although he did have to skip his volunteer shift at the food pantry last weekend he has been able to return to church and church school and even a session of OT last week at Easter Seals. Today was a big day because Roger was able to return to his class at school for a visit and some sharing time about his surgery. The class was very happy to see him again and had a lot of great questions for Roger about his experience.
Yesterday we had more follow up appointments in Boston. We saw both the surgeons and they were both pleased with how things were healing up. We were able to extend the blood draw schedule to every two weeks and will go back in two weeks for what is likely our last follow up appointment (he will be six weeks out from the surgery). The more frequent blood draws (he had been down to just once every three months) will likely continue for a little while until his numbers are back to his normal. With the surgery (and anesthesia) being longer than expected and the fact that Dr. Rohrer took a liver biopsy while he was in there, Roger’s liver has been a little “unhappy”. This is expected and just needs to be monitored while it settles back in. The biopsy results were good and his blood work is heading in the right direction so hopefully that will resolve itself soon also.
I would also like to say THANK YOU to everyone who has left us messages here, sent cards, gifts, well wishes and visits at home. All of this support and love is really appreciated by our family, God bless you!
Dawn
Wednesday, March 10, 2010 10:48 AM EST
The follow up appointments in Boston on Monday went very well. Both our docs seem very pleased with how the healing is progressing. Roger was VERY happy to get his JP drains removed (well not right as it was happening but after) and it has been a big boost for him mentally. I think he was kind of anxious having them hanging there and it is definitely easier for him to move around getting in/out of chairs, bed and on the potty.
Yesterday we had a fun adventure out to Toys R Us so that Roger could spend his gift card from Miss Ann. He was a very frugal shopper and managed to get three great things with even a $1.50 left over for next time. He did very well out and about with a fair amount of walking. He did have a short nap when we got home but he seemed to tolerate everything just fine.
We would like to see him taking in a bit more Pediasure to get his energy back up, but I suppose that will come with time. Each day is moving forward even if it seems to be doing so very slowly.
Thanks as always for all the prayers and support.
Love,
Dawn
Sunday, March 7, 2010 3:57 PM EST
Our time at home has been going very well, we are starting to get caught up on sleep and definitely enjoy home cooking better than hospital food. Roger is in good spirits and we have been able to keep his pain mostly under control, though he is sleeping a lot (sometimes 4-6 hours during the day and most of the night) but I suppose it helps his body heal.
Friday we had our first outing since getting home, I'd like to say it was to some fun and exciting place, but it was to get a blood draw. We did get to see our favorite phlebotomist (Hi Cheri!) and of course Roger earned another toy as a bribe/reward for doing a good job.
Tomorrow we are off on another big adventure, this one is back to Boston for our first outpatient follow up with both the surgeons. Hopefully the JP drains that Roger still has in will be taken out at the clinic tomorrow. They're not super bad to deal with but not having them hang there would be nice. The one thing he will have to deal with for awhile is the abdominal binder that he has to wear for six weeks. It is essentially like an elastic girdle that provides support and protection for his tummy while things heal up. Again not super bad but it does get hot and itchy for time to time.
Today we finally managed to get him in the shower and cleaned up a bit. The other great thing was that he got a real good look at his new tummy and seems pleased, I know the rest of us are.
With love to all,
Dawn
Wednesday, March 3, 2010 3:34 PM EST
So things are far from “done” but we have moved on to the at home part of the Roger’s recuperation period, which is expected to be about 6 weeks total. We did manage to get sprung from the hospital even though right before we left Roger had a couple of fairly bloody stools. But he does have these from time to time at home, and his docs are awesome and know that we will keep a close eye on things. They said if we were comfortable going home with that happening then they were too.
Roger was making such amazing progress that it seemed each time he got out of bed he was doing better and better. By Sunday night he had no more IV meds and was taking everything by mouth. Monday he was up and out of bed a lot, trip to the play room and laps around the floor. We had consults with Occupational and Physical therapy and he was doing as well as could be expected given the extent of his surgery, they were also able to give me tips on mobility and such at home so that he could stay safe. He had blood draw Tuesday morning and unless there was something really bad there I was figuring on asking to get going home soon. Our awesome nurse on Tuesday helped me gather all the supplies and meds we needed for home and by the time the docs rounded in the afternoon I felt comfortable pushing to get out that day. The only care he was getting was someone taking his vital signs every four hours and being “observed” in case something came up. Well we can do all of that at home and be a LOT more comfortable. It only took mild arm twisting, our doc was thinking of discharging us in the morning anyway.
Home is much more comfortable and we have been spending the day getting settled in and figuring out how we’re going to take care of things on our own. The next big fun will be trying to get him showered up, but I think it will help him start to feel better. We have follow up appointments with both surgeons on Monday and will repeat lab work probably Friday.
So far, so good.
As always thank you all for the prayers and support!
Love,
Dawn
Tuesday, March 2, 2010 8:13 PM EST
I promise a more informational update tomorrow but for now I just wanted to let you all know WE ARE HOME!
Love,
Dawn
Monday, March 1, 2010 9:15 PM EST
Big day today! He got the morning off from blood draw (yay!!) and was up and about our room then played a bit with the hospital Occupational Therapist. Then we headed up to the Playroom, rode in a wheel chair but walked around a played there for awhile. Short rest in our room near lunch time, movies and relaxing, then the Physical Therapist came by to help us with techniques to get around until Roger has his full strength back and he took a long walk around the inpatient floor with her. Dr. Rohrer came by for rounds and ended up at the nurses’ station asking “where did they go”? He found us and checked out Roger and seemed very pleased with how things were going. The plastic surgeon, Dr. Driscoll, had been in to see us a little before that and was also pleased with Roger’s progress.
Needless to say we are both a bit tired tonight and Roger had a little trouble keeping ahead of his pain this afternoon and needed a little extra medicine but it seemed to do the trick. Hopefully tonight we can get some rest and have another fun day tomorrow. And maybe we can start talking about getting out of here and back home. I have to say I am kind of glad to have missed all the power outage fun and hope that all of you got through OK and with little damage.
As always, thank you for the prayers, we are definitely feeling the strength of all the support from friends and family.
Love,
Dawn
Saturday, February 27, 2010 10:57 AM CST
Bonjour,
I finally made it back down to see Roger for the first time since Tuesday. Progress is being made. His catheter is out and he's been moved out of the ICU to the main recovery floor. He visited the playroom for the first time this morning and is in very good spirits. He's tired, but he's smiling and joking around with us.
I think having us visit has provided him a boost to his spirits. Soon we'll start playing video games. We're currently in the middle of a game of Marvel Ultimate Alliance, which is very exciting.
We'll keep you posted as things go along.
Thanks to all for the prayers. They are certainly making a difference.
God Bless,
Steve
Thursday, February 25, 2010 2:01 PM EST
Things are moving forward slowly. He is feeling pretty well but uncomfortable in bed and wanting to eat something. The good news is he did just get up to a potty chair and did finally poop so his bowels are getting moving better (oh how glamorous being in the hospital is) which means he may be able to eat soon. But for now he is resting after all that effort. I think we may even be heading to the regular floor later on today. He is getting a second unit of blood (God bless blood donors) and then will have some labs done to see how it went, then we will probably take out his arterial line (where the blood draws have been done) so he’d be getting poked for the rest but they should be only daily (or less we hope).
Thank you all for the continued prayers. I know they are being heard and the Lord is helping us along with the waiting and resting. I’ve been reading to Roger the notes people have left and he seems to like it, feeling a bit more connected to home.
Love to All,
Dawn
Wednesday, February 24, 2010 11:31 AM EST
This morning things are going pretty well, Roger is a more alert when he is awake and really just wants to get out of bed! He is having a tough time finding a comfortable way to lie down and is quite squirmy in bed. He seems to be continuing to move in the right direction and hopefully by this afternoon he can get out of bed into a chair. He did get to start having sips of water this morning but we have to take it slow so his tummy doesn’t get upset. The surgery causes the intestines to kind of turn off for a bit as a reaction to being poked around and until they wake up things won’t move through and just get backed up in the stomach. But he is having sounds in his bowels and passing a little gas which means they are getting started again. Not much sleep last night but he is making up for it today, seems about right for him at the hospital, awake at night and asleep during the day!
Love,
Dawn
Tuesday, February 23, 2010 6:17 PM EST
The day has continued to go pretty well, he is breathing OK without the ventilator and has been squirming around in bed. He has been able to have some ice chips and small amounts of water off a sponge swab and it is helping his mouth and throat feel better from having the breathing tube in. He is not complaining much of pain, he is on some good meds for that, but is having trouble just getting comfortable. I guess that is to be expected. The surgeons were around this afternoon and we got to unwrap the bandages and see the new tummy for the first time. It looks GREAT, I think Roger will be pleased. We will be in the PICU tonight again and see what tomorrow brings.
Thank you again for all the prayers.
Love,
Dawn
Tuesday, February 23, 2010 9:24 AM CST
Good Morning,
Roger is making good and steady progress. He is resting but alert and responding to questions.
He has been taken off the ventilator and is breathing comfortably on his own. Not sure when he'll be transferred out of the ICU and onto the floor, but all indications are positive.
Mom and dad slept well last night, so we're ready for the waiting game.
We'll keep you posted as things progress. Thank you for all your well wishes and prayers.
God Bless,
Steve
Monday, February 22, 2010 7:11 PM EST
The surgery went very well, very long, but very well. He went in at 9:30am was done by 5pm and we finally got to see him about 6pm. The docs found that he had more abdominal muscle in there than we thought and that meant they could make a strong repair with only a biologic material and did not need to use an artificial mesh that would have increased his risks for infection. For tonight he will be in the PICU and stay on the breathing tube with the hope of letting him get a little rest then trying to take the tube out in the morning. He is on a lot of pain meds and pretty out of it right now. Steve and I are going to stay in the hotel room tonight and try to get a little rest before tomorrow too, it has been a long, slow day.
THANK YOU for all the prayers and support, it means a lot to us and we really appreciate it. I will try to put some more details up tomorrow and maybe a picture of two, but for tonight I’m beat.
Love to All,
Dawn
Friday, February 19, 2010 2:01 PM EST
So as you can tell I don’t update this page very much anymore. But with Roger’s upcoming surgery I have had many requests to “keep us updated” and so I’m reviving his site so that I can try to do that.
This last 1-2 years have been very medically quiet. We started seeing an Endocrinologist about roger growth and bone density last spring. She found that he had no “problems” from an endocrine perspective, adjusted his vitamin D supplementation and we have seen a big growth spurt this last year from him. Also, his lab values, while still outside normal, really improved and stabilized form him. So a little less than a year ago we started talking with Roger’s transplant doctors about the possibility of fixing up his tummy. It has long been something that they knew needed to be addressed but it was going to get done as a part of his next transplant, which we all figured would be in the near future. We’ll he has been doing so well that his care has switched from coasting till the next transplant to really just coasting down the stable road and the routine maintenance that is needed living with a liver transplant, pretty regular stuff.
So if we were no longer focused on the next transplant we posed the question about fixing the large hernia that his tummy had become due to all the complications he had following his transplants five years ago (yes, it really has been that long!). After multiple conversations and consultations with the transplant surgeon and a plastic surgeon, they developed a plan and scheduled a time.
This Monday, February 22, Roger will have an abdominal reconstruction. The docs will take what muscle he has left, bring them as close together as they can and then bridge the remaining gap (which will still be pretty big) with some artificial material to connect his trunk all the way around as it should be. This should give the tension needed to “hold things in” and should decrease the overall size of his tummy by a third. The real benefit should be seen as he continues to grow because his muscles will now all grow together symmetrically with him and his tummy should continue to decrease as his height increases.
The case is scheduled for first thing Monday morning and is expected to take up to 5-6 hours. We are expecting to be in the hospital for 3-4 days and then home for a total recovery time of up to six weeks. We don’t really know what to expect but we’ve been praying a lot and turned it all over to the Lord. So please send some prayers Roger’s way and I’ll update here as I have information.
Love,
Dawn
P.S. I put some pictures of the "saga of tummy" in the photos section.
Saturday, May 2, 2009 11:12 AM EST
HAPPY EASTER!!!
SPRING has finally sprung around here and I am very glad to be able to open windows and air this place out. It has been quite the haven for germs for the last couple of months.
During March we all shared quite a head cold which was followed closely in April but a pretty awful stomach bug (Norovirus) that really took a toll on all of us. Both Steve and my Mom missed a few days of work and Roger ended up in the hospital in Boston for a few days due to dehydration from it. I was still quite nauseous while he was in and all the wonderful smells of the hospital don’t really help an already queasy stomach. But we all survived and are really hoping cold/flu season is finished for this year!
Roger just finished up a school vacation last week and is starting the last stretch of the year. His regular teacher had to start her maternity leave earlier than expected, she is having twins and has been put on bed rest until she delivers. So his class has been having the “substitute shuffle” and it is adding to some behavior issues Roger has been having at school, namely that he doesn’t like it and doesn’t want to focus and do his work. But between all the days he’s missed due to illness, the vacation time and general randomness in his classroom I guess it is somewhat to be expected. The long term substitute is planning to take over May 11th and finish out the year so hopefully that will help stabilize the remainder of the year.
In other medical news Roger has started seeing an endocrinologist to check into his weak bone and slow growth issues. Just what we always wanted, yet another doctor and specialty to deal with! We had the initial consultation where the doctor and I talked al about Roger medical background (that was a LONG discussion) and she ordered a whole bunch of blood work and tests to find out what’s up with him. We have a meeting scheduled with her again later in May to find out what was found and see if there is anything we can/should do to help. I’ll keep you all updated as that progresses.
So that’s what’s up with us. Thanks for checking in and I will try to get back on track with more regular updates.
Love,
Dawn
P.S. There are some new photos too.
Tuesday, January 27, 2009 11:45 AM EST
Tomorrow marks the 4th anniversary of Roger’s first transplant, the gift of life from an anonymous angel. Please remember the donor and their family in your prayers, it is an anniversary for them too.
Saturday, January 31st marks the 4th anniversary of Roger’s second transplant, the gift of life from his Dad.
You too can give the gift of life! Sign up to be an organ donor and remember to tell your family about your wishes. Visit Donate Life America to learn the facts about donation and find out about how to register.
Our road continues to be a smooth one for now and medically Roger is quite stable, a welcome change from the first couple of post-transplant years. Things have been so quiet I have kind of taken a “break” and have not been updating the site as much. I know I should share all the good news too, but do remember that usually no news is good news.
But back to the update…
Roger did repeat first grade this year and has been doing GREAT! He is confident, his handwriting is legible, his reading is on track, the homework battles are minimal and he is really “getting it”. In addition to acting like a big boy he is even beginning to look like one, seeming to grow before our very eyes (OK, not really but still impressive for a squirt whose liver is still not perfectly happy). He is full of energy and hardly stops moving ever! If he didn’t have his “Buddha belly” you would not know he had any health issues.
Life really is good and thanks be to God for our Miracle Boy.
Love,
Dawn
Wednesday, August 6, 2008 2:23 PM EST
Things continue to go well for us right now. Everyone is happy and healthy and we’ve been having a busy and fun summer.
It started with our trip to Camp Sunshine in June which was AWESOME as always. Roger was not sure this year if he would move up to the 6-8 year old group or stick with the younger kids in the Tot Lot. He decided to give the big kids group a try on the first day and stuck with them for the whole session. We were all very proud of him for trying something new and he ended up really enjoying himself.
The rest of June was spent wrapping up the school year and preparing for summer vacation. Our first big adventure was spending the Fourth of July weekend at Story Land with our good friends. Our two families rented a condo near the park where we spent two nights hanging out while we spent the days playing at Story Land. The kids (and the grownups too) had a lot of fun and are considering even doing it again next year.
Later on in July Roger and I tagged along with the gang going camping on Cape Cod. Camping is not really my thing but I told Roger I’d give it a try and we actually lasted two days before I decided to come home. Our accommodations in Auntie Laura and Uncle Marc’s trailer were great but I am not up to “roughin’ it” much anymore. I’d rather do my campfire in my own backyard, use my own shower and sleep in my own bed.
Since we’ve been home from camping we’ve been to a few play dates with friends in town and are looking forward to Vacation Bible School starting at our church next week. One of our “playdates” was meeting our friend Ann at the Children’s Museum in Boston. She was the Physicians’ Assistant with our Transplant team during the time of Roger’s surgery and was there with us through all the tough times. But she has since left our hospital for another position and we don’t get to see her very often. We all had a lot of fun and I was glad she got to see Roger playing and just being a “normal” kid.
After VBS we are down to two short weeks before school starts up again. During that time we also have a round of labs and checkups in Boston, I’m trying to get some of it done so that I don’t have to take Roger out of school as much (I hope). Roger has been looking and feeling very well lately and I am hoping for no surprises in his labs and that we can just keep cruising along.
Love,
Dawn
Thursday, June 5, 2008 1:08 PM EST
I know it has been a long time since my last update, but no news has been mostly good news.
Roger has fully recovered from his bout of flu in late March/early April and has been back at school full time for awhile now. He really enjoys most aspects of school but he has struggled this year to keep up. His handwriting is slowly improving and he has made great progress with his reading. That said though, we have decided to have him repeat first grade. He is very young for his class and won’t be seven until the start of next school year while most of his classmates are already seven. And as you all remember his transplant was a little rough and he missed out on almost a year developmentally. So the hope is another year and some more time to practice his skills will set him up to better succeed at school going forward. He is happy that now he and his best friend will now be in the same grade.
Our only recent medical adventure actually didn’t start with Roger this time but Steve. Over Memorial Day weekend Steve was diagnosed with shingles, fortunately a mild case with only a small patch on his upper back and arm. Shingles are caused by the same virus as chicken pox and that virus can be VERY bad for transplant patients to get. So Steve got to move in with his folks for about a week until his blisters had dried up and he was no longer contagious. Roger also had to go on an anti-viral med in the hopes that we could avoid him being infected, so far so good.
Medically Roger continues to wow us all and is holding very stable with his blood tests and seems to even be growing some. On our last check ups at the hospital in Boston almost everyone was commenting on how grown up he is looking. Each day that goes by without another transplant is one that we were not expecting, a gift to enjoy together.
And speaking of enjoying, this Friday we are off to CAMP SUNSHINE for organ transplant week. This is a very big deal around here and Roger gets more than a little excited about going. There is a link at the bottom of this page for those of you who are not familiar with Camp Sunshine, it is quite a place. Stay tuned for my next update which will be all about how things went at camp.
Thank you all for your continued support of our family.
Love,
Dawn
Sunday, March 30, 2008 9:51 AM EDT
As many of you already know Roger was sick last week and ended up spending a few days in the Floating Hospital in Boston for IV fluids and tests. The fluids helped him start to feel better, dealing with the dehydration that had started, and the tests showed that he has Influenza B. Today is almost a week after his symptoms started and he is feeling pretty good, but tired and with a continuing cough and a little stuffy nose (no where near how bad it was last week).
Last Monday he woke up asking if it was a snow day or delay and I figured he was just trying to “work me” into letting him stay home from school. Steve said he noticed Roger coughing and a bit stuffy, and Roger did have a busy week prior to this with doctor’s appointment and lab draws, so I said what the heck. I told him we could do “home school” for the day. The morning went well and then he got tired quickly and napped from 11-2, when he woke up he was miserable and sick with a fever around 101. He was finally able to nap again from about 5-7 and woke up feeling much better, asking for food and drinking a couple of his milkshakes (Pediasure). He went to bed feeling OK and woke OK but he stayed home from school anyway because we had a neurology appointment at Boston Children’s in the afternoon he had to leave early for anyway. By the time we saw our doctor in the afternoon Roger was feeling pretty yucky again and it lasted until bedtime. When I checked on him around 9-9:30pm he was burning up, his temp was near 103-104, I managed to get him to take a dose of Tylenol and changed into so lighter PJs. He and I stayed up for an hour or so watching TV, drinking water and wiping his face with a cool cloth. His temp got into the 100-101 range and I put him back to bed. Wednesday morning he was not much better, temp still around 101-102, really not drinking much at all and the diarrhea was increasing. I called his transplant team to see what else I should do for him and they wanted us at the hospital for IV fluids and virus/flu tests. They said this has been a very bad flu year for kids like Roger it’s best to act quickly before things get too bad, the upper respiratory viruses can lead to bacterial pneumonia pretty quickly.
We were admitted Wednesday afternoon and he had a chest x-ray, IV placed, labs drawn, urine and stool cultures and a nasal culture the next morning (very unpleasant). He was a pretty sick little camper, even his doctor said “this isn’t the Roger I know, he’s always in a good mood”. By Friday morning he was starting to feel better and the tests and cultures were all negative to that point. They were going to discharge us and then the flu B test came back positive so that plan was on hold till they figured out what treatment they wanted. After a few hours discussion they decided not to treat him and ended up discharging us anyway. The Tamiflu that they wanted to use is really only effective if given in the first 24-48 hours and he’d been ill for almost 5 days already. But he was better hydrated and just really needed to rest and that is definitely better done at home than the hospital.
So we’ll take things one day at a time and when he’s feeling up to it give school another try.
Love to all,
Dawn
Wednesday, March 5, 2008 1:42 PM EST
Will it EVER stop snowing??? I think we have just about run out of places to put it all, I can hardly throw it over the banks when I shovel off the stairs. Oh well, the grass and flowers will be well hydrated and happy come spring, if they survive the flooding that is becoming a spring “tradition” around here.
It in effort to get and “enjoy” the snow, Steve assisted Roger on his first ever snowshoe adventure in the front yard. The boys had tried to go out to play but Roger couldn’t get around because the snow was just too deep, so they tried the snowshoes. We couldn’t believe how GREAT Roger did on them, he was walking around like he’d done this his whole life. The last couple of years he had a hard time with just his boots in the driveway and now this, wow. He was VERY proud of himself and the big smile shows what a good time he had (see the photos section).
Things have been quiet medically for Roger and he is doing pretty well in school, nice and boring! We’ll take it.
Again this year our family is participating in the Patient Match Program for the Run for Research by the American Liver Foundation-New England Chapter as a part of the Boston Marathon. Basically ALF sponsors and helps train the runners for the marathon and the runners in turn raise money for ALF. With the Patient Match Program some runners choose to be matched with liver disease patients to become more informed about liver disease and to personalize their experience on the team. Roger has been matched this year with two great runners, Rebecca and Josh. We had a chance to meet them both at a party in January at Jordan’s Furniture in Reading, it was really fun. Both of the runners have fundraising web pages set up through ALF with photos of them and Roger at the party. Please visit these pages to learn more about Rebecca and Josh, and make a donation if you can, every little bit helps.
Thanks for checking on us.
Love,
Dawn
Thursday, January 31, 2008 2:35 PM EST
Today is the three year anniversary of Roger’s second transplant, the gift of life from his father.
Monday was the three year anniversary of his first transplant, the gift of life from a seven year old angel and their family. Please remember them in your prayers, they are marking an anniversary right now too.
The four days that came between those two surgeries have been some of the hardest we have been through. But it is milestone like today that gives us a chance to look back on how far Roger has come and how thankful we are for his donors.
God is good!
Monday, January 21, 2008 2:50 PM EST
Sorry I kind of left everyone hanging after the last update. No news has been good news as things have been going well here lately. After the last couple of years of being on high alert and in full neurotic Mom mode, I have now become the “Queen of Procrastination” and have begun living by the motto of why do now what you can put off till ….whenever. The truly sad part is I am too apathetic to care about the fact that I don’t care. YIKES! I’m sure I’ll get back on track but for now things are just getting along at a different pace.
Roger had some labs and check ups in early December that went pretty well. And other than a short cold mid month he has been feeling well. One of the check ups was a final follow up on his broken arm from last spring, which has healed to the point that you can’t even tell where the break was. Which is even more impressing when you think that a DEXA bone density scan we had at that visit showed that Roger’s bones are pretty weak. The scan gives you a number score with anything -2.0 and less being osteoporosis, Roger’s score was -3.6 meaning his bone density is 3.6 standard deviations below the average for his age. We are going to repeat the scan in 6-12 months to see what the trend is because this could actually be an improvement for him and he hasn’t been having an excessive number of broken bones. But really our only medical “complaint” these days is that Roger has been itching more than ever and we’re having a tough time finding ways to help.
Also in mid December we had a very fun family outing. Our friends across the street invited us to share a condo with them up north and take the kids (their two girls and Roger) to Santa’s Village for the day. The time at the condo was great. We went swimming in the indoor pool, the kids got to hang out and play while the parents got to have dinner and drinks. However the day at Santa’s Village turned into more of just a morning there as it was only about 10 degrees that day and we all got frozen fast. Our first stop and longest, coldest wait was to see Santa. But given that Christmas was only about a week away and Roger had never met Santa before it was worth it. We did try a few rides but spent most of the time inside at an arcade type area where there was a big climbing/playhouse thing that Roger really enjoyed. But our next visit will probably be in the summer!
As you remember Thanksgiving was spent in the hospital this year, but Christmas was at home. Even though we woke Christmas morning with no heat and a broken furnace, it beat being in the hospital. We did get the furnace and heat working again later that day but ended up missing church because of it, try again next year. Roger didn’t even seem to notice the cold because he was so wrapped up (pun intended) in opening his Christmas presents. He got the one thing he’d asked Santa for, the Grinch who Stole Christmas DVD, and many other great things too.
So this week we have routine labs to get and off to see the GI doc on Thursday. And if my current mode holds, you should be seeing an update sometime in the spring (ha-ha! no, not really). As always thanks to all of you who check in on us even when there are no updates, we love you.
Dawn
Friday, November 23, 2007 11:12 AM EST
So just when you think stable might last awhile…we have a small bump in the road.
For about the last 48 hours Roger has been having a fair amount of blood in his stool. We kept an eye on things from home on Wednesday but by Thursday morning his stools were not improving and we called Transplant. His hematocrit has been running pretty low lately (only 23-24) and with the amount of blood there appeared to be in his stool, they decided it would be best to come to Boston for observation. Usually his bleeding episodes resolved themselves within a couple of days but this one was continuing longer then we’d like. The ironic thing is that since we’ve been here his crit has come up to 27 even though he is still passing blood in his stool. And to further baffle the docs Roger is feeling great and FULL of energy. So it looks like we’ll just watch his stools another 24 hours or so and hopefully they too will improve and we’ll be headed back home. We’re not big fans of being in the hospital but with the varicies he has we are always concerned that any bleeding event could become a BIG bleeding event and I’d rather be here than home if all heck breaks loose.
Hope everyone had a great Thanksgiving and thanks for checking on us.
Love,
Dawn
UPDATE Sat 11/24
Just a small bump, we came home this afternoon. The bleeding finally resolved on it's own and last night we had a "normal" poo, one without visible blood in it (they still test positive but we just can't see it). Yea, it's all about the poo. This morning's blood draw showed a stable crit of 26 and we were cleared to go. Barring any new occurrences we are scheduled to get labs 12/3 and see Transplant 12/6. That's it for now.
Love,
Dawn
Sunday, November 11, 2007 7:37 AM CST
Good Morning Everyone,
It's been quite a while since we've updated, but hopefully you assumed it was a result of Roger doing so well. If you guessed that, the you are correct.
Roger started first grade in September and is playing the role of a regular kid. We've been focusing our time on helping him read, write and learn math. The writing part of things is a little slow for him, but he's making great strides with as a result of the consistency school provides.
Roger is even riding the bus himself. It proved to be a bit of a challenge the first 2-3 weeks because he was having some difficulty getting used to the long day of school. Losing one's freedom like that can be very difficult and Roger found many creative ways to try and limit his time at school. My favorite so far was his attempt to get a trip to the hospital because his leg was injured. He was very convincing by including some crying and starting the story at night and carrying it through to the next morning. Unfortunately for him, Mom and Dad are experienced a troubleshooting real injuries, so he ended up going to school anyway. My favorite quote of the episode went something like this, "I think I need to go the hospital today...and when we're there I want to visit the playroom and my friends [here, here and there]...". How many kids actually 'want' to go the hospital over school. The 'experts' usually suggest using the doctor as a tool to convince your child to go to school.
Halloween was spent going around the neighborhood on a hay ride. Our neighbor hitched up a trailer to his ATV and took the kids around the block.
Well, off to church now, so I'll have to end the post. Keep praying for Roger because it's obviously working.
God Bless,
Steve
11-13-07
P.S. We forgot to mention that we are not going to be moving anytime soon. We didn't have any real interest in our place and the property we were under contract with kind of fell apart. So we'll stay put here for now and that's OK!
Love,
Dawn
Tuesday, August 28, 2007 12:58 AM CDT
Today Roger turned six years old and tomorrow he starts first grade – some kiddo is definitely growing up (Thanks to God and organ donors)!!!!
Things have been going quite well around here lately, Roger has been feeling good and we’ve had a chance to do some regular things for a change. The summer started with our Camp Sunshine trip for organ transplant week, as always it was AWESOME and Roger talks about camp often. The week after school got out in June Roger attended Vacation Bible School at our church, the theme was the Great Bible Reef. They did stories, music, arts & crafts and generally had a great time while learning about how God’s people care, help, trust, believe and listen. Then there was a very great Fourth of July party with family followed by a fun trip to the ocean in Hampton with cousins later that week. Late July to early August was summer school, it was mornings three days a week to help keep up his skills from kindergarten and prepare for first grade. He has an IEP (special education plan) for school and this is a part of it. It was a nice break for both of us, we each got to do our own thing for awhile. Later in August was our overnight trip up north to Storyland and a sleep over at a hotel (not a hospital for a change!). He had fun but really dislikes waiting in lines for the rides. One ride we did go on was the roller coaster and we were all surprised that Roger liked it. As we got in and started out he wasn’t really sure about it but by the end of the first downhill he said “this isn’t so bad”. And we rounded out the summer by having Roger’s birthday party here on Sunday. All along the way we had a bunch of check ups and routine doctors’ appointments sprinkled in with the fun stuff. I think we were in Boston an average of once a week, but managed to tack on some fun like the Museum of Science while we were in the city.
Whew, it was a busy summer and school starts again tomorrow.
One other big happening around here that has had us busy is that we are trying to sell our house and move to the town that Steve works in. We’ve been out here in the “sticks” for 12 years and have finally grown weary of all the driving we end up doing because we are not near anything. Steve has a 45 minute commute each way to work, the grocery store is 25 minutes away, the local doctor and blood draw are a half an hour too. And that doesn’t even include all the Boston drives which are 2-3 hours each way. We would like to see less of our cars and more of each other! We are under contract on a house but need to sell ours as a contingency of completing the deal. So far we’ve not had many people look at the house and we’re getting a little discouraged. Who knows, our friends in town may get their wish and we’ll be here for another 12 years or more. Anyone know anyone looking for a spacious, comfortable house?
So that’s what we’ve been up to while I’ve not been updating the web site. Thanks for checking on us and leaving notes even when we don't update :)
Love,
Dawn
Sunday, July 22, 2007 5:23 AM CDT
Good Morning Everyone,
It's been a while since our last post and that's because Roger is doing very well. He visited the doctors this week for his liver check-up and broken bone. His bone is all healed!! Yippee!! And for his liver, he was looked at by the docs and told to come back in 8 weeks.
Dawn was also able to get his meds switched from 4x daily to 2x daily (with the exception of 1 med that will be right after school). That means Roger's day at school won't be impacted.
Roger also started Summer school last week and took the bus for the first time. He (and Mommy) did very well.
Our next adventure is in August, we're taking a trip up to Storyland. I think Roger will really love going. We even received a special treat in the mail yesterday from his cousin K-. She sent Roger three passes into Storyland that she received for working there. It was a very thoughtful gift. Roger's reaction when I told him was: "That means I can go to Storyland now?" In the high pitched voice he can only pull off.
Anyway, thanks for stopping by.
May God Bless your day,
Steve
Monday, June 18, 2007 7:05 PM CDT
Good Evening Everyone,
Camp Sunshine was fantastic again!! Roger got his hard cast off the day before camp and was able to attend with a soft cast. Please don't tell the docs, but we took it off when Roger went into the pool so it wouldn't get wet. (SHHHH...)
Mom and Dad were extremely tired once camp was over....Roger on the other hand, seemed to pick up energy. Go figure. He managed himself very well this time. In past camp experiences, Roger would run and run and run, then DROP!!
We came home on a Tuesday and spent the rest of the week quietly at home. We swam and played and ran errands. Nice and relaxing.
We had labs last Thursday. Roger's bili is at 2.2 (good), but his hematacrit was at 22 (not good). Docs had us wait the weekend and then draw labs today. We don't know the results, but if they are low a transfusion is likely. Roger's energy has been fantastic even with the low count. Go figure.
Thanks for checking in.....Thanks for your continued prayers.
Steve (filling in for Dawn)
Tuesday, May 22, 2007 1:59 PM EST
Roger had his second follow appointment since he broke his arm two weeks ago (5/7), and things are going well. He has had two sets of x-rays over the last week to make sure that the bones are in proper alignment so that they heal straight. The doctor said the greatest chance for movement is in the first three weeks so they keep a close eye on it.
When the bones were set and the cast put on there was a cut made down the inside of the cast to allow for the swelling to go down. Now that time has passed and there is no more swelling and the bones are well aligned the cast needed to be better stabilized. So at yesterday’s appointment Roger got a new blue layer on his original red cast, now he has real Spider-man colors.
Speaking of that, Roger finally got to go see the new Spider-man 3 movie on Sunday. It was actually his first time to the movie theater. Originally we’d thought that movie might be a lot to handle as a first theater experience but decided to try it, know that we may have to walk out as soon as it got going. Roger is not very tolerant of loud noises and actually considers many things that we don’t to be loud noises. So we didn’t think he’d do well with the sound level of a movie theater, even I think it is a bit much at times. But Dad came up with a great solution for the volume, Roger wore the ear muffs that Steve uses when he runs the snow blower. I wish I had remembered to bring my camera, that picture would have been a great companion to the story. LOL. But Roger thought those were the best things ever and wore them through the entire show. Some folks did give him a second look as it was quite an interesting sight but Roger never even noticed.
He did a great job sitting through the movie (it was two hours and 20 minutes!) and LOVED it. But his second most favorite part of going to the movie theater was getting the use the urinal in the men’s room. Over the last couple of weeks Roger has been learning to go standing up (quite a feat as he can’t even see his penis) and has been doing a great job. I never thought he’d get tall enough to reach, so I guess he really is finally growing.
Overall he is doing great and we’ll go back in two weeks to see if the doc will cut his cast down below the elbow before we head off the Camp Sunshine on June 8. At yesterday’s appointment he said probably not but he’d be wiling to give it one more look in a couple of weeks. He said there was not as much new bone as you might expect there should be (liver disease is very hard on the bones) and he’d rather be cautious, me too.
Thanks for checking in.
Love,
Dawn
Wednesday, May 9, 2007 3:33 PM EST
In my last post I told you how Roger had kind of clicked physically and was trying all sorts of new things. Well, he has discovered one thing that was not such a good idea and confirmed that gravity still works.
He decided Monday morning that it would be fun to try to stand on his new punch-ball balloon, and although no one actually observed it, Roger claims he got one foot on before crashing. He even managed to get his hands out in front of him to break his fall but what did end up breaking was his right arm (and of course he is right handed). Yup, clean through both forearm bones and bent at a 45 degree angle (a visual I still can’t get out of my mind)!
After a couple minutes deliberation Steve and I decided that trying to take him to the ER on our own probably wouldn’t go well (we didn’t want to move the bones and were afraid he might have a seizure) so we called an ambulance. Grammy had managed to get him rolled on the floor with a pillow under his arm and was doing her best to comfort him. While Steve was on the phone with 911 and we were waiting for the ambulance to arrive, Roger was talking through his tears and in obvious pain…Does this earn me a new Ben 10 toy? Leave it to him to be more concerned about negotiating his special treat than getting his arm fixed. Maybe “bribing” him to get through medical adventures wasn’t the best plan, LOL.
The EMTs stabilized his arm and took him to Concord Hospital for x-rays. It was going to require general anesthesia to set it and cast it so from there we were off to Boston. If he is going under I prefer him to be there just in case something goes wrong (what could go wrong? LOL). They were actually able to get him in to the OR as an add-on and we finally departed for home by about 7pm with a shiny new red (of course) cast up to the armpit. Yippee.
He is comfortable and getting better maneuvering with his cast and adapting to only having one hand to use (his fingers are free but still hard to do anything with). The doc says it may take 4-6 weeks to heal and we have our first follow up next Thursday.
So much for our medically stable place! At least this is a regular kid thing and the doc also said if you had to break your arm his was in a good spot.
Thanks for checking in.
Love,
Dawn
P.S. We may have thought we had an awful day Monday, but for a liver family I know it was much worse. Their three year old boy Antonio who’d had his transplant last November earned his angel wings. Please pray for him and his family.
Wednesday, May 9, 2007 3:33 PM EST
In my last post I told you how Roger had kind of clicked physically and was trying all sorts of new things. Well, he has discovered one thing that was not such a good idea and confirmed that gravity still works.
He decided Monday morning that it would be fun to try to stand on his new punch-ball balloon, and although no one actually observed it, Roger claims he got one foot on before crashing. He even managed to get his hands out in front of him to break his fall but what did end up breaking was his right arm (and of course he is right handed). Yup, clean through both forearm bones and bent at a 45 degree angle (a visual I still can’t get out of my mind)!
After a couple minutes deliberation Steve and I decided that trying to take him to the ER on our own probably wouldn’t go well (we didn’t want to move the bones and were afraid he might have a seizure) so we called an ambulance. Grammy had managed to get him rolled on the floor with a pillow under his arm and was doing her best to comfort him. While Steve was on the phone with 911 and we were waiting for the ambulance to arrive, Roger was talking through his tears and in obvious pain…Does this earn me a new Ben 10 toy? Leave it to him to be more concerned about negotiating his special treat than getting his arm fixed. Maybe “bribing” him to get through medical adventures wasn’t the best plan, LOL.
The EMTs stabilized his arm and took him to Concord Hospital for x-rays. It was going to require general anesthesia to set it and cast it so from there we were off to Boston. If he is going under I prefer him to be there just in case something goes wrong (what could go wrong? LOL). They were actually able to get him in to the OR as an add-on and we finally departed for home by about 7pm with a shiny new red (of course) cast up to the armpit. Yippee.
He is comfortable and getting better maneuvering with his cast and adapting to only having one hand to use (his fingers are free but still hard to do anything with). The doc says it may take 4-6 weeks to heal and we have our first follow up next Thursday.
So much for our medically stable place! At least this is a regular kid thing and the doc also said if you had to break your arm his was in a good spot.
Thanks for checking in.
Love,
Dawn
P.S. We may have thought we had an awful day Monday, but for a liver family I know it was much worse. Their three year old boy who’d had his transplant last November earned his angel wings. Please pray for him and his family.
Thursday, May 3, 2007 8:50 PM EST
No news has been good news. Roger has been doing amazingly well and we have been busy living life to the fullest. We don’t eve have another transplant check up or labs due until mid June, after we get back from Camp Sunshine! He seems to have found another stable place and maybe we really can delay this next transplant for a little while.
Roger’s last set of labs were the best he’s had in a while, his liver numbers are still way outside of normal but improved for him. His bilirubin is down to 2.5 (should be less than 1) and is hematocrit has come up to 29 (should be in the 30’s) and hasn’t been that high in a long time because he was having so much GI bleeding. The bleeding seems to be taking a break right now, he is even eating well and growing some.
Now that the snow is finally gone we have been playing outside often and I am amazed at how well Roger is doing getting around and playing almost like the rest of the kids. Things have seemed to click for him physically and he is really enjoying trying things he would never have attempted last year. He’s been doing well with his foot issue and the cast was only on for 10 days. Though we do have a one month follow up coming next week and we’ll get the doctor’s opinion on the situation.
Sorry this is kind of short and sweet, but at the moment we are happy and busy, so if you don’t get a new update very often that’s why!
Love to All,
Dawn
Friday, April 13, 2007 3:50 PM EST
A belated Happy Easter to everyone. Roger enjoyed Easter but had a bit of a tough time after getting so over exhausted from the anticipation and activities. I think egg hunts are a new favorite of his.
Roger had many fun and busy days Easter weekend and finally crashed hard Sunday night; he was over tired, under fed and all around wiped out. I feel like I jinx things some by mentioning how well he’d be doing lately. He ended up having a seizure in the car on the way home from the Easter dinner/party Sunday, started with a strange limp on Monday and by Tuesday had come home from what was supposed to be a quick follow up to his broken leg last year with a new walking cast on his other foot. Not to mention that he looks a little more yellow, is still pretty tired out and maybe getting a cold? You would think I’d learn to keep my mouth shut and just stay in that wonderful world called “denial”. I had just started to let myself think that maybe he could put this re-transplant off for awhile and then wham things start happening again.
We were mostly bummed about the seizure, he’d not had one since October and we thought that maybe this was something that was starting to “go away”. Nope. The foot thing is not expected to be a big deal, but is still another new something that Roger has to deal with. He was not happy about the cast, thankfully is can be removed for sleeping and should only be needed for 10 days. The limp is from an issue with a small bone in his foot called Kohler’s disease (avascular necrosis of the navicular bone). It happens even to regular kids but the doc thinks that Roger’s previous steroid use and poor bone health were contributing factors. Who knows, it is always something though. I feel like I am going to med school one disease/issue at a time.
Enough medical stuff, on to the fun stuff. Through the American Liver Foundation Run for Research, Roger has been the patient match for two runners in the Boston Marathon who are raising money for the ALF. Basically the runners raise money for liver research and the ALF helps coordinate marathon training and resources. A pretty cool idea if you ask me. The patient matches are a way to “personalize” those living with liver disease and transplants. There is a team dinner this Saturday night in Boston that we are planning to attend where we will be able to meet these runners and at least one other liver family that I know online but have never met in person. I am looking forward to it. Our runners are Jeffrey Dyer and Stewart Fenniman, these links will bring you to their fundraising pages, stop by and find out more about them and make a donation if you’d like to help the cause. Thanks. Our marathon plans also include being in the Go Liver! cheering section on race day, if the weather cooperates though. It might not be the best idea to stand in the snow/rain with a kiddo who has a foot cast and head cold, we’ll have to make that decision Monday.
Love to all,
Dawn
Sunday, April 1, 2007 7:31 PM EST
Roger has been listed for another transplant, but at the moment is fairly stable and doing well. The plan is to see the transplant doctors once a month and decide then if they would take an offer for him in the coming month. His PELD score is only 4 (it was 11 for his first time) and it would be unlikely to receive an offer at this point. Even after the decision is made to accept an offer it may be some time before we receive one. The ideal situation for him will be a same size, whole organ and those can be hard to come by. So really we have no idea when his next surgery may happen.
The expectation is that this time it will be a very tough time even if things go well. The doctor told us to expect a long stay in the PICU and repeat trips to the operating room. The surgery will be difficult due to scarring and other complications left over from his first two transplants. When Roger was finally closed up after his first transplants the surgeon said he wouldn’t want to be the one to have to operate on Roger in the future because it was such a mess in there. So we are going to wait until he has had a decline in his quality of life before going ahead. Right now he is having such a good time at school and trying so many new things that we all want him to keep going as long as he feels up to it.
Actually a couple weeks ago a new “version” of Roger showed up. All of the sudden he has become the big boy, I can do it myself kid. He gets himself out of bed in the morning, dresses for the day and brushes his own teeth. He’s using the potty all by himself and even staying dry most nights now. He has learned to put on his own socks, shoes and coat to get ready for school. At school, I drop him off at the sidewalk and he goes to his class by himself. The year started by Mommy walking him in a waiting till class started and gradually advanced to dropping off at the sidewalk and a grownup walking him in, he’s come a long way. He is even making progress with his eating, he will now eat his sandwich cut into quarters (used to have to cut it into bite size pieces), fills his own water cup from the jug in the refrigerator and has been trying a fork with his mac & cheese instead of one noodle at a time with his fingers. I realize that a lot of kids reach these milestones by age three, but for the longest time Roger has not shown the interest or ability to accomplish these things. We could not be more proud of him, and he is very proud of himself!
Thanks for checking on us,
Dawn
P.S. Update on the last update. My ear has healed up fine, but we did find out that Jack our cat is in chronic kidney failure likely due to his advanced years.
Wednesday, March 7, 2007 12:18 AM EST
Our “vacation” in Boston went pretty well. The medical things were OK and the Museum of Science and hotel sleep over were fun. I did have a very BIG blonde moment though and left a tote bag on the train when we got off at the museum. Yup. Oh boy was I stunned when I realized I did not have it and was watching the train travel off in the distance. It had Roger’s meds for the rest of the day in it and, more importantly, Doggie (see photo section). Doggie has been with Roger since his first Christmas, we spent it in the hospital and Doggie was a gift from our social worker at the time. Doggie has been through it all, you’ll see him in most pictures of Roger (that’s him with Wally up above), and really is his best friend. He was riding in the bag so he did not get left on the train by Roger, we didn’t count on Mommy being the bone head! I did however manage to get it back through the help of the T-police and the T-agent at the next station. But the best part has been having my dear son remind me every day how I left the bag on the train!
The consultation with the plastic surgeon went well, he said there were definitely things he could do to help but would wait until all the liver things were “fixed”. He felt there was no need to rush into anything now and the whole process of fixing up his belly would take multiple surgeries over a length of time and that hopefully we can use his growth over time to aide in the “repair”. If you have not seen Roger’s belly for yourself it is hard to describe (see photo section-CAUTION it is quite a sight). We refer to it as “budda”, and it gives him the appearance of being nine months pregnant, an unusual look for a five year old boy. Essentially he has a very large hernia due to the repeat abdominal surgeries right after his transplants, they had to use a donor tissue called fascia that gives more than muscle and allows his organs to bulge out more than they should. It does not cause him any discomfort but does get in the way sometimes and certainly makes clothing him a challenge. Roger on the other hand feels his belly is just fine, no self esteem issues there!
The CT angio went surprisingly well, I was doubtful because I’d had so much trouble tracking down information on my own. It involved placing a very large bore IV (Roger is difficult with a regular IV) to inject a contrast dye (which can be a somewhat painful sensation) and then having a CT scan of his abdomen. But, our AWESOME transplant team made the best preparations for it and Roger flew through just fine. They arranged for anesthesia to be there, Roger had Versed before to relax and was fully asleep when they placed the IV. This meant no “owies” for Roger, not something that happens for him often. The imaging was to allow the transplant surgeons to see which blood vessels are working and let them for a plan for the next organ.
Just yesterday our coordinator called and the team has decided they have all the information they need to finalize his listing except for a final discussion with Steve and I and the official signing of the consent paperwork. We’re planning on taking care of that at the next clinic appointment near the end of March, none of us are in a big rush as Roger is doing well at the moment.
I actually had a little medical adventure during our vacation. I left home Wednesday with my ear a little irritated (like I’d scratched it), by nighttime it was red and painful and the by the next morning I very large blister on the back of my ear. If you haven’t already discovered it, the back of your ear is one of those places on your body that you can’t see. So I asked Steve to look and he said it looked gross (we have a pretty high gross threshold around here so this was saying something) and I should see the doctor. The doctor said, wow, I’ve never seen anything like that (at least he is a young doc and hasn’t been at it long). He drained it, cultured it and put me on a high powered antibiotic. He also said that infection in cartilage (like your ear) and be tough to clear and potentially disfiguring. Yippy, I can hear people now, here comes budda boy and his one eared Mommy (I’m kidding, I’m kidding, humor helps me cope). Anyway, it has been a week now and it is healing up well.
One other update to share, we are a dog-less household now. The older of our two goldens (11 ½ years) who was unable to be placed for adoption was euthanized on February 24. Three weeks earlier we’d found out she was in early kidney failure, but it was a cancerous bone tumor on her leg that brought the end, her leg was three times normal size ( and had becomce that way in less than 24 hrs.) and she would not bear weight on it. The remaining critter here is our fat cat of nearly 15 years and he is not looking well either, but is the most annoying and stubborn of the bunch so will probably live forever.
I need to update more often so it is not such a “book”.
Love,
Dawn
Tuesday, February 20, 2007 10:17 AM EST
Roger has been doing fairly well over the last few weeks, only a few days of GI bleeding in mid February and his blood tests from last week are surprisingly good for him. His liver numbers are still 3-4 times normal but his hematocrit was 26.8 (even thought he had some bleeding) and his total bili is 2.7. His energy has been good and he has been going to school, gymnastics and playing out in the snow with Dad.
The plan for the next couple of weeks is: see the Transplant docs for a check up and additional blood work this Thursday, next Wednesday we have a consultation with a plastic surgeon to discuss how we can fix up Roger’s belly better after his next transplant, and then next Thursday have a CT angio done to image his blood vessels (?) in preparation for his next transplant. I don’t have a 100 nderstanding of the CT angio thing yet but plan to ask many questions at clinic this week, I will update later with the details.
Because next weeks things are on back to back days we have decided to stay in Boston overnight Wednesday to avoid the AWFUL drive down we’d have Thursday morning to arrive for the 7:30am procedure. We (Mom, Dad and Roger) are getting a hotel room across the street from the hospital (they have a good medical rate for patients) and are planning to do something fun Wednesday afternoon and have dinner out in the evening. I won’t go so far as to say this is a vacation but we will be away from home and not technically in-patient at the hospital, in our world that almost qualifies.
Thursday, February 1, 2007 1:00 PM EST
The time has come…Roger is the process of being re-listed for a third liver transplant.
There are a large number of factors that we have been considering and the list of items in the reasons to transplant is starting to outnumber the list of reasons to wait. The fact that he needed a transfusion because of the bleeding he has been having is not a great sign, also his growth has pretty much stopped and his eating is really slowing down (probably because he is not growing). His energy is still pretty good but he is napping 2-3 hours a day, plus sleeping all night, to keep it up. These things coupled with the fact that his lab work looks fairly yucky are really showing us that we need to get going.
Before the listing is official we need to get a couple of tests and consultations done in preparation for the next surgery. It will probably be the first part of March before things are all set to go. At that point he will be listed with specific criteria (ideally a whole organ from a similarly sized child), When he was originally transplanted his PELD score was 11, using his most recent set of labs his score right now is around 7. I have two links in the introduction story above that go to pages at UNOS that give information about the liver transplant list and PELD scores, basically the higher your score the sicker you are.
Needless to say, none of us are really excited about this, but it is what we need to do to give him the best shot of long term success. Our hope is that by listing a little on the early side we have the best chance of getting the ideal situation for him.
Wednesday, January 24, 2007 1:44 AM EST
Just a quick update.
Things went well and we arrived back home about 1:15 this afternoon. Roger was once again a very brave trooper with his IV and blood draws. He received one unit of blood and his counts have improved some.
The plan for now will be to watch for additional GI bleeding, recheck his labs in a month (or sooner if he bleeds) and see the transplant docs in clinic in mid-February.
Thanks for your prayers,
Dawn
Thursday, January 18, 2007 3:16 PM EST
Roger had check ups this week with both his Transplant and GI doctors. He has been continuing to have blood in his stools on and off since Nov/Dec and it looks like it has finally caught up with him. His hematocrit is low and he’ll be going into Boston next week for a transfusion to try and get his blood count back up. Because of this he is fairly pale and tiring a little more than usual. Not really a huge deal but it is still not great that he has to get blood, it is very well screened but there is still always a risk. Also it takes a while to give so we’ll be spending the night so that he can be properly observed. There is the potential for quite a reaction to occur when blood is given so the process is closely watched. Our hope is that this does not become a regular occurrence for Roger and that the GI bleeding stops. Time will tell.
Also, I think it is time that I updated you all about a change to our household. In November Steve and I decided to place both our dogs up for adoption through Yankee Golden Retriever Rescue. The stress of caring for them and dealing with everything that Roger is facing finally reached the point that we felt something had to change. The dogs had been our everything prior to Roger and this was a VERY difficult decision to make, it was the last part of our “old life” that we lost because of the stress of our “new life”. Roger was not really that interested in the dogs so we always had to choose between spending time with them or with him. The grooming and cleaning I had with the dogs was just adding up on top of everything else and I was having a hard time dealing. In fact I’ve been having an increasingly hard time over the last few months and finally ended up starting an anti-depression medication. I’ve been dealing with some depression off and on over that last two years but it has gotten to the point I cannot do it with just therapy. There are a lot of things in our life that we have no control over, but whatever things we can control and change for the better we need to at least try. If I end up having regrets about my life I’d rather it was about my dogs than my child.
But we knew we’d made the right decision after the first week without them, things were so much less hectic around the house. That has changed a little because Jessie is back with us, she had too hard of a time dealing with the process and the rescue felt she was just too stressed to try to adopt out. Charlie on the other hand fit right in and has found a great new home in Vermont (kind of ironic) with a retired couple and another Golden. Now that some time has passed this situation is easier for us, but please understand that this has been extremely difficult for us and we’re not really interested in talking much about it, thank you in advance for your understanding.
Happy New Year,
Dawn
Friday, December 29, 2006 8:30 PM EST
Yes, I am long overdue for an update! Things have been going mostly well here and we’ve been busy with Christmas and vacation (Daddy and Roger). It has been a great week of family together time and has been good for all three of us.
Before starting his Christmas vacation from school Roger’s class had a fun party with cookie decorating and reindeer games. Each of the kids made their own Rudolf nose and antlers, it was quite a sight to see. Roger tried his hand at the cookie decorating, spreading frosting and shaking out sprinkles, but stopped when it came to the eating them part. It was a good time anyway.
A couple of days before Christmas we received a very special package, a Miracle Mail box courtesy of the Haley Vincent Foundation and Christ Fellowship Church of Kingsport, TN. It was wonderful, FULL of great toys and decorated by children from the church who had prayed for the recipients of the packages. The HV Foundation was created by Haley’s mother to honor her daughter who passed away while waiting for her liver transplant, to find out more click on this link, the Haley Vincent Foundation. We’d been touched by Miracle Mail once in the hospital after Roger’s transplant and were very thankful to be touched again.
By Christmas Eve Roger was so wound up I though he would explode. Even though he’d developed a bit of a cold earlier that day he was still running at full speed when we made it to Memere and Pepere’s (Steve’s parents) for present opening with aunts, uncles and cousins. It is organized chaos and a clan of too many to count (Roger is ninth out of ten grandkids for Steve’s folks). Roger made quite a haul of toys and played with his cousins for quite awhile, then it was home to put out cookies for Santa, carrots for the reindeer and hang out the door key for Santa (seems mean to ask him to come in through the woodstove chimney). It was late when he finally made it to bed. Santa did manage to find his way in the house and left another big haul of gifts under the tree for Roger. The unwrapping didn’t take long (he has mastered that part) and then the playing could begin (and has continued almost nonstop since). It was a good Christmas!
We did have a little bit of a close call as far as being home for Christmas, for the few days prior Roger had been dealing with another bout of lower GI bleeding and we were not sure if we’d be calling into the hospital. Thankfully the bleeding was not too severe and stopped on it’s own after a few days, though it has reappeared this week but disappeared again as well. I guess this is just a new part of “normal” for us. Oh well, at least the docs trust us enough to ride it out a bit at home as long as Roger is feeling well overall. The cold he caught didn’t keep him down long but did give him a really raspy voice for awhile. Though we do feel pretty lucky that between the Christmas excitement, lack of sleep, cold and GI bleeding there were no seizures to speak of (a few auras) and no hospitalization!
God is good and Christmas at home was wonderful!
Love to All,
Dawn
Monday, December 4, 2006 8:24 PM EST
The good news is that Roger has not had any additional bleeding since the beginning of November and as of today we have completed all the imaging that can reasonably be done of his GI tract. The not as good news is that we still are not certain of the source of his recent bleeding and we found so many possible sources that we are not currently surgically intervening anywhere. We are going to keep up with his dietary and med changes, wait for another bleeding event and scope him as soon as possible to determine the source. Fun!
At this point the bleeding is considered a manageable thing and the current plan is to continue to just monitor things closely. The one rectal varice that we had been concerned about since his last scope looks OK now. What was found further along in the rest of his colon is that many of the smaller vessels are dilated (enlarged) and irritated looking. The doctor described it as similar to what you’d find in your nose; tiny vessels, close to the surface that can bleed easily but usually stop on their own. Except his are enlarged and under pressure which increases their susceptibility to bleed. Though now that he is off his blood thinner they have a better chance of stopping on their own and not developing into a major (life threatening) bleeding event.
We have not followed up with the transplant team after today’s findings but the GI feels this is an appropriate course of action. Of course if there is a repeat of lower GI bleeding or ANY upper GI bleeding (this can be a life threatening event) that changes things. The real reason that the pressure is so high on his blood vessels is that his liver is having a hard time and the only true fix is a re-transplant. The million dollar question is still when is it time for that.
Roger did another excellent job dealing with his procedure today and over the last two days during the clean out prep. Even adults dislike the prep and he was a trooper, even being woken up at 4:45am to leave for the hospital. It has been a very long day here.
Thanks for all the prayers and support.
Love,
Dawn
Wednesday, November 22, 2006 4:04 PM EST
Today Roger had the Meckel scan, I was not looking forward to it as we have never had a good experience in Nuclear Medicine, but that was before today. Things went surprisingly well and Roger was a very brave trooper.
Our drive in was awesome, hardly any traffic and there was no school today for the Thanksgiving break so Roger didn’t even have to miss school. I think a lot of others didn’t have school or work and that was the great traffic we had. We arrived for the test at 9:45 (scheduled for 10am) and we hardly had to wait at all. The man that greeted us got us a quiet spot to wait and found some Spider-man boo-boo Band-Aids (for after the IV) and a few movies to watch during the scan. The IV placement was a little tough (took two tries even after I told the tech he would squirm, argh) but Roger was very brave. He needed the IV so that they could inject the tracer material. After that the rest was a piece of cake. Roger had to lie still underneath a VERY large “camera” that was lowered almost on top of his belly, it doesn’t hurt but is a bit intimidating. He was able to watch one of his favorite shows, Buzz Lightyear of Star Command, while Mommy rubbed his head to help him relax. He did a GREAT job and even managed to joke around a little with me, I am VERY proud of him.
I did not get any official results, but I could see the screen during the scan and it looked good based on what I’d researched or been told by the docs. The tracer “lights up” stomach lining tissue and the Meckel’s diverticulum is a bit of stomach lining that is out of place near the end of the small bowel (near the appendix). I could see his stomach light up and his bladder but nothing else from my untrained eye, but I am hopeful that the result will be negative.
Happy Thanksgiving!
Dawn
Thursday, November 16, 2006 5:15 PM EST
I am a few days later than I planned on with the actual Roger update, we had transplant clinic today and I figured I wait till after that. We had labs done (no results yet) and a meeting with Dr. Rohrer (the man in charge of the plan).
The plan as it stands now is to continue with the diet and med changes started in the hospital (no popcorn and more Inderal), to do a Meckel scan to check for a small intestine abnormality that can cause rectal bleeding, then to have a full colonoscopy (last one was a sigmoid only) to make sure that the one blood vessel we suspect is the only culprit in the bleeding and lastly to “fix” that vessel (by surgically placing a few stitches) to stop the bleeding. Both of the procedures would be done as an outpatient and are scheduled for 11/22 and 12/4. The doctor feels that if we get the bleeding under control Roger may do well for months to years before he would need his next transplant, though we will still be keeping a very close eye on his labs, growth and development. The goal in waiting is to allow him to make as much progress as he can with the current liver before putting him through another transplant. He really hasn’t had the recovery time he should have due to all his complications.
I have to admit the waiting to list is going to be hard, you know what’s coming and at least I would like to “get on with it already”. But I suspect this is only my own impatience and not necessarily what is medically best for Roger. I keep thinking we will get to some end point with this where it will get easier, there may not be such a place and I should just take it one day at a time.
Thanks for checking in.
Love,
Dawn
P.S. I posted some Halloween photos.
P.P.S. Just got the lab results and they are pretty good (for Roger):
11/16/06
Hematocrit 24.7
WBC 6.1
Platlets 252
INR 1.15
Glucose 91
BUN 12
Creatinine 0.3
K 4.3
NA 136
CL 102
CO2 23
Albumin 2.7
Total Bili 3.3
AST 105
ALT 107
Alk. Phos. 1640
Magnesium 1.6
Prograf 7.7
Sunday, November 12, 2006 7:52 AM EST
I know you are looking to find out about the plan Roger’s doctors have developed for him, I’ll post more about that tomorrow. Today I feel the need to climb up on my soapbox and rant a bit about organ donation. I do realize the for the most part I’m preaching to the choir here, but if I can influence one person’s decision to donate then it is worth it. Thank you for indulging me.
As of this morning (according to UNOS) there are 93, 986 transplant candidates on the national waiting list and by tonight about 18 of those candidates will die still waiting for their organ. Over the last two weeks I’ve watched as two babies fought hard to stay alive to get their second chance, but sadly their chance never came because there are too few organs donated and too many patients waiting.
Even before Roger was born I was supporter of organ donation. But since Roger’s been born and I’ve become part of the liver and transplant community my desire to be a donor has only been strengthened, now those UNOS statistics are attached to actual candidates and their families. It’s one thing to say that 18 “people” will die waiting and another to say that Dillon, Jackson, Haley, Rani, Zane, Sarah, Jayli, Ava, Grace, Natalie, Romina and many more died waiting or were so sick when their gift came late that they never had a chance.
I know mortality is a difficult subject (especially that of your children) and maybe some think that those on the list in need of a transplant are sitting around wishing for the demise of others so that they get another chance. Not so. Those that are waiting are praying that when another family is struck by tragedy (as it is sure to happen to someone) that they can find the strength and courage to reach out through their grief to offer others the promise of hope. The hope for a second chance through the ultimate gift, the gift of life. Many donor families have said that their grieving was helped knowing that their loved one’s death gave life to someone else.
Just one donor has the potential to save up to eight lives (1-liver, 2-heart, 3-kidney, 4-kidney, 5-lung, 6-lung, 7-pancreas, 8-intestines) through organ donation and improve the outcome for many more through tissue donation. We all have the power to give the promise of hope, to give the gift of life. Take steps today to be an organ donor, document your decision (this differs in each state, click here for more information ) and most importantly tell your family as they will be speaking for you and need to know your wishes.
If more of us donate, fewer will die waiting.
Don’t take your organs to heaven; heaven knows we need them here.
PLEASE give the promise of hope…give the gift of life…become an organ donor.
Love,
Dawn
Tuesday, November 7, 2006 9:35 PM EST
Still no plan but we have been cleared to sit and wait at home. Roger was finally given the OK to eat solids again today, yippee. He downed four popcorn cakes and a pancake before you could blink, he is a much happier camper now, until tomorrow morning that is.
One decision that has been made regarding Roger’s care is to eliminate nuts and seeds from his diet as these may be irritating the varices that are bleeding. This means that he has to stop eating popcorn, his most favorite food and one of the only dozen or so things that we actually can get him to eat. I get to break the news to him in the morning when he asks for his “breakfast” (pediasure milkshake and popcorn), I’m not looking forward to it. Though I did reach a compromise with the docs that he could have popcorn cakes, they are more processed and have almost no hulls in them. I hope Roger thinks it was a good compromise, we’ll see in the morning.
We have transplant clinic next Thursday and I’m hoping by then to have a better idea of what is next for us. After further discussions it appears that banding rectal varices is pretty uncommon for adults and almost unheard of in kids. Our docs are conferring with their colleagues to see if anyone thinks this treatment might be a good idea and then to find someone who knows how to do it. At best the banding would be to buy some time until his next transplant, which is really the only way to treat the underlying cause of the bleeding, the increased portal hypertension due to a struggling liver. One reason that there is not much data regarding kids being banded for rectal varices is that it would usually be a strong indication to transplant the child and not an issue to manage long term.
So it looks like Roger will either be an experiment of sorts with the banding or be listed for his third transplant, which seems a very likely occurrence even if the banding was tried. Tough decisions to make, especially when the experts you trust are stumped themselves, it’s hard to hear very bright people tell you I don’t know what’s best. I’m praying their searching turns up some answers.
Love,
Dawn
Tuesday, November 7, 2006 8:33 AM EST
Tuesday morning…still no plan… still sitting and waiting.
Roger has only been allowed to have pediasure and water since Saturday evening (only water up till then) and I’m afraid that if they don’t let him eat soon he’ll forget that he does eat solid food! A little good news for today is that he did not have to do blood draw today as his hematocrit has stabilized.
So if there are not real answers today I’ll be pushing to go home while we wait for SOMEONE to make a decision as to what to do.
Thanks for all the words of support and encouragement in the guestbook, I often forget to acknowledge it but it is really appreciated.
Love,
Dawn
Sunday, November 5, 2006 1:09 PM EST
Halloween was GREAT, the parties and Trick or Treating were a lot of fun. Venom enjoyed scaring everyone. Roger did an awesome job getting around to all the houses on our street with the help of the very cool hay ride (4-wheeler and trailer) that our neighbors but together.
BUT...
We are back in the hospital again, checked into Chateau Floating late Friday evening. Roger had more blood in his stools on Thursday and Friday, and as we sit here Sunday we still have no definite plan of action in place. The good news is that the current bleeding appears to have stopped; the bad news is that we still are unsure if anything can be done to stop it for the long term.
The consensus is that the enlarged blood vessels (varices) that were found in his scopes from three weeks ago are the bleeding source, and they are bleeding due to increased pressure in them due to the liver having a harder time. He is developing fibrosis in the liver which makes it “stiffer” and harder for the blood to flow through and increases his portal hypertension. In English that means that we are probably closer to listing him for the third transplant. IF we can treat the varices and stop the recurrent bleeding we may buy more time (months to years) before the next transplant. If we cannot treat the varices we will probably list him again and hopefully have the time to be selective and wait for an entire organ (from another child).
Tomorrow we are supposed to meet with some docs from the adult GI service to find out about treating (banding) the varices in his rectum, very few children have this done but many adults do. So they may say no way it could be done, or lets go in there and see what, if anything, they could band. We are a bit in uncharted territory so there is a lot of doc to doc consultation going on and really no one knows for sure.
So..we sit, we wait.
Love,
Dawn
P.S. Please pray for baby Dillon and his family, Dillon just earned his Angel wings waiting for his liver transplant.
Wednesday, October 25, 2006 5:38 PM EST
It has been a very busy week since we returned from the hospital. Medically related, Roger had a dental cleaning on Wednesday, went for labs again Monday, and a nutrition/feeding consultation today. Medically speaking things are stable, no more bleeding, labs are the same and he is eating/growing well for him.
Non-medically related he had a school field trip to the Fire Station on Friday and we all went to the Pumpkin Festival in Boston on Saturday. The field trip was fun, the kids got to see a firefighter all dressed in his gear and got to sit in the fire engines and ambulances. The fire engine was fun for Roger as he lives to push all the buttons and fuss with the neat gadgets inside. Though he seemed a little less enthused about the ambulance, kind of like been there done that! And of course he has been in both of the ambulances, one for his sub-dural and one for his septic shock. So when the other kids were having fun putting the monitor leads on their chest and seeing a print out of their heartbeat, he was being grumpy about getting in another fire truck. Figures.
The Pumpkin Festival on Boston Common was a BLAST. Steve, Roger and I parked at the “Bear Hospital” did a little visiting and then walked one block up to the Common. We saw the very large pumpkin tower (see the photos section) and Roger spent a long time running in rows of pumpkins with some other kids. With Steve’s help Roger carved two pumpkins to contribute toward the World Record lighting of Jack-o-lanterns that was set that day. The event was sponsored by the Life is Good t-shirt folks and ALL the benefits went to Camp Sunshine (around $250,000!!!). We saw a few Camp staffers and one other family we’d met on our last weekend trip in Sept. Roger got a cool t-shirt to commemorate the event by. It was fun.
We are gearing up for Halloween, Roger has a party at school, a neighborhood get together and Trick or Treating on Tuesday night. He will be going as Venom, a Spider-man villain and is looking forward to scaring lots of people.
Thanks for checking in on us,
Dawn
Tuesday, October 17, 2006 5:33 PM EST
We are HOME!!!
The ultrasound this morning went well and all the liver blood flow looks normal. His lab work from today is improved over yesterday, though his INR and Prograf are still a little high. Due to the good blood flow and increased INR we are cutting back on Roger’s blood thinner. The high Prograf may take a bit more tweaking, we’ve decreased his dose and will recheck the level in a week.
So in summary, the bleeding has stopped and we are tweaking meds to help it not recur. At this point he has not been re-listed but the varicies we discovered are another check mark in the column of reasons he’ll be needing another transplant.
As always the plan is in God’s hands and the time table is His and not ours.
Love to All,
Dawn
P.S. We had a surprise visitor yesterday, Miss Jenny! We rounded the corner to our room and poof there she was. She was delivering new DVD/VCRs for the PICU courtesy of the Larry Dalo, Jr. Fund . I know they were sorely needed and will be greatly appreciated, keep up the great work!
Monday, October 16, 2006 7:29 AM EST
Popsicle day was a big success!!! It’s hard to believe but Roger was not really that upset about only getting clear liquids for the whole day because he ate his weight in popsicles. Of course mom tried to be sensible and found some Pedialyte popsicles but they are sugar free and we switched back to the “old regular” ones after one try. Oh well, at least he was happy.
This morning is another story, he is upset that he cannot have breakfast (not even a popsicle) and that the toy room doesn’t open for three more hours. But he is still doing well, we’ve decided well just have his pancakes for dinner.
He had to have an enema last night and by this morning he has stooled so much that the bleeding is back, this is why I wanted to already be at the hospital when the real clean out started. But so far so good and we’ll have the scopes soon to figure everything out.
I’ll post later on today after I had some information from the scopes.
****Monday Evening Update****
The scopes are finished and Roger is napping in his room. He FINALLY got to have his milkshake, popcorn and pancakes. He is a much happier boy now.
As far as results, they are good in the short term (the bleeding has stopped) but not as good in the long term (we may be moving closer to the next transplant). The GI doc who did the scopes says Roger has grade 3 (out of 4) esophageal varicies (enlarged blood vessels, like varicose veins) as well as varicies in his rectum and internal hemorrhoids at his anus (yes, kind of graphic I know). The rectal varicies look like the source of the current bleeding and we’ll be making some med changes to deal with them. In the big picture the varicies probably mean that the liver is having a harder time and creating more portal hypertension (not good). We’ll being staying one more night and having an ultrasound in the morning to check on the portal vein blood flow, if that is not 100hen it is even more likely that a re-transplant is in our future.
But the good news is Roger made it to the playroom today and can eat his normal diet again. He is tolerating things well but there have been a lot changes to the inpatient floor and we both have had a bit of adjusting to do this admission.
Thanks for your prayers.
Love,
Dawn
Friday, October 13, 2006 7:06 PM EST
Camp Sunshine was a BLAST again! We made new friends, saw old friends (prayed for a friend who had passed) and left wanting to go back again soon. I’ll try to post some pictures and stories soon, but tonight I have another update to give.
Roger is having some GI bleeding again, he woke with a diaper full of bloody stool (I know, too much info) and we’ve spent the day getting lab work and talking with doctors. At the moment he is stable, his hematocrit and clotting are normal and the blood in his stool is tapering off. After many phone discussions today we have decided admit him on Sunday in preparation for an endoscope and colonoscopy on Monday. We need to find out why he is bleeding and if it has stopped or needs treatment. I asked for him to stay there Monday night just in case something bad happens after (oh like-a seizure or more bleeding) and they agreed. I guess they also realize that things rarely go as planned for Roger!
So the real fun will start Saturday night when we’ll give Milk of Magnesia to stimulate bowel cleansing as preparation for the colonoscopy. Then by Sunday he can only have clear liquids and Monday nothing at all by mouth. Yippee!!! I think I may have jinxed Roger though, Steve recently had a colonoscopy (his results were good) and I remarked that this was one procedure Roger hasn’t had yet, well now we can add it to his list.
Please keep Roger in your prayers on Monday, I am a little nervous about the anesthesia after he had the seizure and overnight in the PICU after his PTC in July.
Love to All,
Dawn
Tuesday, September 26, 2006 4:23 PM EST
Our clinic visit last week went fairly well. There is not a lot we are doing right now except following his growth and his lab work. Last weeks labs were mostly unchanged from the month before except bili is up to 4.7 and Prograf is down to 5.4, we’ll repeat labs this week and see if the Prograf is still low before increasing his dose. It is a fine line to walk with this medicine, he needs enough to not reject his liver but too much can cause bad side effects. My liver friends refer to this as the “Prograf dance”. Although 5.4 is not an awful level it is about half what it had been last month and the big change is kind of concerning.
This week has been one of good news and bad news. Starting with the good news, we have been invited to Camp Sunshine for this weekend for the mixed diagnosis session. It is only a three day session but we are all very excited to return, Roger has already begun packing and counting down the days until we go. BUT, the bad news is we will be going with sad hearts. Our Camp Sunshine friend Terran passed away this week at the ripe young age of 10. He had received his second bowel transplant earlier this month and was doing well. He was almost ready to leave ICU and move to the regular floor but passed suddenly. Please pray for his family.
One funny story (or mortifying if you are the mom) from our trip to Boston last week. This was our first visit since his birthday and one of our nurse friends (Mary Beth) wanted us to stop in so she could give Roger a present. In his mind she was going to get him a certain action figure and I’d spent a numbers of days telling him that might not be the gift and he should be happy with what ever he gets. Yeah right. We meet Mary Beth and she gives him the gift, smiling he rips the paper off, stands there quiet for a moment and then proceeds to cry a river of tears saying “it’s the wrong gift”. So much for Mommy’s explanations about being happy for what you get! I wanted to throttle him, Mary Beth wanted to go out and get him the action figure-see how your reaction can differ depending on who you are! In an effort to comfort him our other friend Ann saw her patients as quickly as she could and joined us at McDonalds for lunch, a chocolate milkshake and French fries can really cheer a boy up (not to mention the Happy Meal toy). Anyway long story shorter he finally agreed he like the blow-up Spider-man chair that Mary Beth got him (see picture of him in said chair smiling) and Mommy managed not to throttle him.
Love to all,
Dawn
Wednesday, September 13, 2006 3:19 PM EST
So far, so good at kindergarten and Roger really seems to be enjoying himself. This year he is in a morning session and it is definitely making a big difference for him. He is more energetic and ready for school than last year when he was in the afternoon preschool. Roger is a morning person, up at 6am (if we can get him to stay in bed that late) and ready to tackle the day. Last year I had a terrible time getting him motivated for school after we’d been doing something else all morning, he was often tired before he even got to school. This year he can get right there, do his best and then crash with a nap after.
Even though he is at the same school (Center Woods Elementary) as last year there are a lot of changes to adjust to with kindergarten. His class has almost twice the number of kids (class of 19 I think) and there is a greater expectation of him taking care of himself and his things. I think he is a little hard on himself about some things because it is still hard for him and he sees the others do it for themselves. But it drives him to keep trying and he usually improves quickly; if he is not big or strong enough to do something the way the other kids do, he figures out his own way to accomplish the same result. His creativity and imagination are coming in handy.
Overall he has been feeling well and not looking too awful yellow, next week we have transplant clinic and labs so well get another look at how things are going. But regardless of what the paperwork might say he is full of energy and enjoying life.
Thanks for checking in on us,
Dawn
** new school picture in the photos section **
Monday, August 28, 2006 1:37 PM EST
Roger turns five today!!!!!
This last year has kind of flown by for us, which must be the advantage of not spending as much time in the hospital. Although last year’s birthday was sandwiched in between two big medical events, a brain bleed with major seizures (Aug. 17) and a sepsis infection when we almost lost him (Sept. 5), we have avoided long hospital stays since then.
We’ve had some good news; normal labs in February and good blood flow in what had been a very blocked portal vein. And we’ve had some not as good news; a broken leg, lots of seizures and deteriorating bile ducts that will likely lead to another transplant (only God knows when). His liver is regenerating and doing well, but the bile ducts were damaged due to the clotting problems he had right after his transplant, and these ducts are not known to regenerate or recover from this kind of damage. So we are essentially back to where he was before his transplant. Similar to Biliary atresia, the current situation is that the bile cannot get out of the liver and eventually will deteriorate the liver. Our plan of attack for now is to monitor him with monthly lab work and check ups, we will be watching for the point when he stops eating, growing and is generally not doing well.
Roger was able to attend most of the year of preschool after getting a late start in the fall, and has really come a long way in his development because of it. He will be starting kindergarten later this week and will continue to get extra help at school to catch up developmentally. I think he is looking forward to kindergarten but is still confusing it with preschool, I keep telling him it’s a new class and teacher, but he keeps talking about last year’s class. I’m sure he’ll figure it out.
So that’s where we’re at, hard to believe it’s already been five years.
Thanks for checking in on us.
Love,
Dawn
Saturday, August 19, 2006 8:59 AM CDT
Sorry I left you all kind of hanging after my last update, it was a bit of a downer. Things have not really changed but we have not had our first follow up with the docs since the failed test last month. The good thing is that Roger has been feeling overall and I think his jaundice has improved a little but we won’t know for sure where he stands until we get labs next week. In additional good news, he has not had a seizure (knocking wood as I type) since the one in the hospital last month! He is still only on the one anti-seizure med at the same dose he had before his last event at the hospital and we have a follow up with his neurologist in a couple weeks. So that’s the medical update, stable but not many answers yet.
For the what Roger has been up to update, here goes. As you can see by the new homepage picture Roger got to meet Wally the Green Monster, because we were at Fenway Park on Friday for the day game of the double header Sox against the Yankees!!! HOLY COW did we ever have an absolutely amazing time. Two of our hospital friends (Ann and Lisa) conspired to give us a once in a lifetime treat. They got us field box (#9) tickets a few rows back from the field on the first base side, right next to “canvas ally” AND access to the field during batting practice AND a chance to meet Wally and have a photo right on the field just prior to the game starting!!!
I felt like we were having a Make-a-Wish day. We were able to enter the park early, (there were only media folks, Sox staff and a few special guests like ourselves), and while we were waiting Steve noticed one of his favorite sports casters coming in, Sean McDonough from NESN and ESPN. We were then escorted by a wonderful woman from Red Sox Community Relations right out onto the field behind home plate and in the mist of batting practice. It was very cool, the players were right there and were waving to the kids and some came over to sign autographs. We met and had a photo signed by Kevin Youkilis, and Alex Cora sent over a baseball with really Fenway grass stains on it. We saw Johnny Pesky, Willy Mo Pena, Gabe Kapler, Mike Lowell, Coco Crisp and even Big Pappi. Roger made friends with Jen the pretty, young ball girl and they played toss a bit-it was very cute. Steve and I were wowed by getting on the field but Roger was on a mission to find Wally, so after watching BP for a little while we went back inside to find Wally. Our first stop was a souvenir cart to purchase a small stuffed Wally for Roger to take home and then around the next corner, there was Wally sitting on a big chair posing for photos with the kids. Roger got to meet him and have him sign his new Wally stuffed friend, very cool. We then went to wander for a bit, grab a bite to eat and then head back to our seats for the pre-game and opportunity with Wally in the field. I thought Roger was going to explode from excitement when he got to see Wally on the field, Wally even took off his huge baseball hat and put it on Roger’s head, it was so cute! After we got back in our seats Roger kept asking to go out to buy his new friend Wally a pretzel and wanted to keep going to find him again. Even when it was time to leave Roger didn’t want to go until he found Wally and gave him another big hug. Roger got his pretzel (and a popcorn) and shared it with Dad because we never did team up with Wally again.
The game turned out to be a bust, we lost 12-4 and actually missed Manny’s homerun because we’d just left (we heard the cheering as we were walking down Lansdowne St.). It was sunny and hot and after a few hours of pure joy and excitement, we’d all had enough and decided to call it a day. We still had the subway ride back to our car and the long ride home to NH. This really was an experience of a lifetime for all of us and can never thank enough all the wonderful folks who made it happen.
Love,
Dawn
P. S. What a difference a year makes. Last year on August 18th we were in the PICU wondering if Roger was going to need brain surgery due to the sub-dural hematoma he had the day before that had resulted in major seizures and a helicopter transport to Boston. This year we’re ON THE FIELD at Fenway meeting Wally! I like this year better.
Thursday, July 27, 2006 7:32 AM EST
I think the saying is “…third time’s a charm…”? Well, looks like we’ll get to find out!
The biopsy result we were waiting on were not great news either. The liver cells themselves are doing well and healthy, BUT the bile duct cells are not good and have actually deteriorated from the biopsy in May. So this news coupled with the PTC results that showed the dye not going into the liver or bowel means that the bile ducts are not doing well and that is why his bili and LFTs are up, the toxins cannot get out of the liver. The consensus is that the damage to the bile ducts is from the repeated clotting events Roger had after his transplants last year; sometimes it just takes awhile for the damage to really manifest in something you can measure. Because the damage extends up into the fine ducts in the liver and not just where the duct connects to the bowel, there is not a surgical fix available (especially because they could not even get a drain tube in during the PTC). Unless his body just kicks in on it own and his labs normalize, the “fix” to this situation is another liver transplant.
He is not currently listed as he is stable at the moment. We will be having monthly labs and clinic visits to keep a close eye on things so that we’ll know when it is time.
As far as his “noodle” goes, we had Neurology see him and run an EEG. The preliminary result is that there is nothing new going on with his brain and it is the existing areas of concern that are involved with his current seizures. It seems like the one med he is on just may not be doing the trick by itself and we’re thinking of adding a second one. I need to follow up with his neurologist and also run all that by the transplant team because any med changes can affect everything! So this will be a work in progress for a bit.
For now we are home and planning to enjoy the rest of our summer. We adjust to our new normal once again and life goes on.
Thanks again for all your prayers and support,
Dawn
Tuesday, July 25, 2006 2:58 PM EST
Things could be going better. The long awaited and definitive PTC test is inconclusive. The biopsy results are not in yet. Roger didn’t do great waking from anesthesia and actually spent last night in the PICU (he’s fine now).
Does this roller coaster EVER stop!!!
It looks like Roger had a seizure that was compounded by the anesthesia; he was just not himself waking up and gradually got worse once we finally got back to his room. The heart rate monitor he was on was reading really high and I asked the doc to check on him, she though his heart sounded irregular and ordered an EKG. During this time he really starting not being right, staring off, not speaking much, not playing much, making weird movements with his mouth and for awhile drooling and appearing to not even swallow his own saliva. It was pretty disturbing and we all felt he’d be better monitored for the night in the PICU. We never know when it’s just a little thing or if it will quickly turn into a big thing (as it often seems too).
After getting a good long nap he was already being to return to normal and by this morning he was back to himself 100 He was seen by neurology today and they are consulting with his regular doc and we’ll see if we should get an EEG or MRI or maybe add an additional seizure med to try to figure out what’s up. I’ll keep you posted.
In the liver department his lab values are all still elevated but his bili has come down from 7 to 4. They were unable to place a drain tube during the PTC as hoped and the images they got are not what we’d hoped for. They did get into the bile ducts but the contrast dye would not go up into the liver or down into the bowel, so we only have partial images. The bile ducts may just be too damaged and the only repair is likely another transplant. Bummer. We still have to find out about the biopsy, it looks at the cells for the bile ducts also and this may give more information.
Anyway, it has not been a great couple of days. Roger though is doing well today, he is full of energy and on the go. Right now he is in the play room with the volunteers while I get a few things done in our room. Having a big independent boy does help mommy find a little down time which is greatly appreciated.
Thank you for your prayers and support,
Dawn
Friday, July 21, 2006 7:12 AM EST
The PTC test is finally scheduled for this Monday, July 24. It feels good to have a plan and start date but still a bit nervous about what is going to happen. Things are lined up as well as they could be, the best radiologist and one of our surgeons present to advise.
The test is actually a treatment at the same time. They will insert a needle through Roger’s skin, through his liver and into his bile duct. This is the tricky part as his ducts are very small and there is risk of hitting a blood vessel or other part of the liver. Neither of those are good things and could result in internal bleeding or severe infection. BUT after they get into the bile duct they insert a catheter tube and inject a dye to image the bile duct system. This allows them to look for blockages or areas of narrowing that are affecting bile flow out of the liver. If the images show blockage or narrowing they can then insert a ”balloon” to gently stretch the bile duct and open it so that bile can flow out better. It is a lot like the procedure many people have for their coronary arteries, angioplasty. If the tube is able to be inserted it will likely remain in place for awhile and Roger will have an external tube and bile collection bag to tote around. I’m not really looking forward to having a kid with tubes again but if it helps than it is worth it.
And in related news, Roger had a few small seizures this last Monday, it was not fun. The seizures are not as severe as they were and are mostly just the aura part now but I did not like that they recurred during the day. They don’t seem to bother him as much as they bother me! Called his neurologist and AGAIN she says increase his meds and watch for seizures. I’m really getting fed up with this “treatment” plan and I think I'll explore having someone else see him while we’re in the hospital this week.
So that is where we're at and we will probably be in the hospital for a week or so (going in Sunday afternoon) but we’ll know better on Monday after the procedure. I’ll keep you posted.
Love,
Dawn
P.S. We also have two prayer requests to make. First is for Auntie Laura, Roger’s god mother. Second is for Terran a Camp Sunshine friend who is in the hospital in Florida with weight loss and rejection from his bowel transplant and now is having increased liver problems too.
Friday, July 7, 2006 3:58 PM EST
Yesterday we had a meeting with Roger’s transplant doctor about whether or not we should proceed with doing the PTC test. In my post from June 5 (see the journal history) I gave a description of the test and the risks involved for Roger. It can be a very useful diagnostic test as well as an opportunity to treat the bile duct situation, but it does carry some real risks of bleeding and infection. Roger’s labs have continued to rise (bili 6.9, AST 201, ALT 170, AP 1546) and we see no point in waiting any longer. The test will be done within the next few weeks (maybe week of July 24?), as soon as we can line up the best radiologist to do the test. I’ll keep you posted.
Last time I told you all about the Tot Lot where Roger spent a lot of his time at Camp Sunshine, this time I’ll try to share some other fun adventures and post some new pictures to match.
One of his favorite spots at camp was in his bunk bed, a built-in cool place for a little boy to hang out with his snack and his show. It allowed us to get him to stop moving long enough to get a little nutrition and rest.
On the way coming and going from our room Roger usually wanted to stop and ride the big purple dinosaur (thankfully it was not Barney), when it wasn’t too hot from the sun.
We went of a road trip with another family one night to get pizza in a nearby town. Roger and his new friend Ryan (both four years old with two liver transplants each!) road next to each other in the van, watched a train show and had a whole lot of fun and laughs.
Roger and one of the volunteers made up a “rubber chicken” game just being silly on day. He would ring a bell in the window with the chicken and then toss it inside (one by one until the whole bunch was done) and then gather them back up to start again. It was cute and he even got some of the other kids to join in too.
Thanks for checking in.
Love,
Dawn
Friday, June 16, 2006 8:51 PM EST
Camp Sunshine was AWESOME!!! I am at a loss of words to describe just how wonderful our time there was, it is a great facility and full of the best people you could meet. The volunteers there must out number the guests 3 to 1, every time you turn around there was someone there to help.
Roger especially enjoyed this as he had a bunch of pretty, young ladies to doing his bidding and see to his every whim. He spent his days mostly at the Tot Lot, an indoor play room and outdoor playground just for kids 3-5 years old. There were toys, games, a puppet theater, pretend kitchen and the biggest pile of stuffed animals a kid could imagine. He LOVED it! He even had a quiet room, with a soft mat, a pile of quilts and a favorite volunteer to rub his back so that he could take a much needed nap after playing so hard.
Steve and I spent our time in group discussion or playing with the other parents, and there was even time to be alone together to just relax. Though most of the time we were busy we had some together time to take a canoe ride, walk around camp and just read and relax.
We met families from Florida, New York, Rhode Island, Massachusetts and New Hampshire. One of the recently transplanted liver patients sees the same docs we do in Boston, and one of the families had a boy the same age as Roger (he’d also had two liver transplants) and the two of them hit it off great. There is so much to tell I’ll have to spread it over a few posts and I have TWO discs of digital photos (taken by the camp photographer and provided to us free of charge) to go through and post here.
Today was back to reality, Roger had a blood draw in Nashua and the results aren’t great. His bili is up to 6.5, LFTs still up and the Prograf level won’t be back till Monday. The docs haven’t seen them yet because they were doing a liver transplant this afternoon, so I don’t know yet if this means we’re closer to the PTC or not.
So I’m very glad we got camp in, it’s a great recharge that I think will do us all good.
Love to All,
Dawn
Saturday, June 10, 2006 9:11 AM EST
Today’s the day, we are leaving for Camp Sunshine in a couple of hours. Roger is VERY excited today and the three hour car ride may be interesting if he decides not to have a nap.
Thursday was Roger’s last day of preschool for this year, there was a small party in the class and lots of fun to celebrate the end of the school year (there are some pictures in the photos section). Friday we had his IEP meeting to set up his special services for the beginning of kindergarten in the fall. He will also have a four week summer session at school in July and August to help him keep his skills on track for the next school year.
So a kind of a busy start to summer vacation. We are not taking a computer to camp so my next post will be when we get back, I’m sure we’ll have lots of stories and photos to share.
Thanks for checking in on us.
Love,
Dawn
Monday, June 5, 2006 9:18 AM EST
Yes I am a bit tardy with my update from Thursday’s transplant check up, just haven’t felt mentally up to it. The visit wasn’t the greatest and to top it off Roger had another seizure that night just before bedtime, I’m just getting tired of all of it.
His labs on Thursday were really no better and his liver numbers are still up and not trending down yet. His doctors have decided that if things have not improved (that means his labs values within certain parameters) by August then it will be time to act. The theory is that there is something wrong (blocked or narrowed) in the bile ducts and bile is not getting out of his liver as it should. The test for looking at the ducts is kind of also the treatment for them as well, it is called a PTC (Percutaneous transhepatic cholangiography) . This involves putting a needle into the liver and into the bile duct, inserted a tube that they then flush dye into to image the bile ducts and look for blockages/narrowing. If problem areas are found they can use a balloon like catheter to stretch the duct to open up the flow and often leave the tube in place to drain the bile into a bag on the outside of the body. Roger had a very similar tube in place for about 3 months after his transplant surgery. The test is pretty invasive and the docs only want to do it if it really seems necessary, so we’ll watch and wait only a little while longer.
I’m not looking forward to this test, it has a risk of bleeding complications and when you are on a blood thinner these risks are increased, and given our history so far it seems that if it can go wrong it will. I’m worried that we’ll end up with another long hospital stay and a big set back for Roger again. Even if things go well the tubes can be a real pain to live with and I don’t know if it might interfere with him being able to start Kindergarten in the fall. Well, I’ll try not to dwell on it till the time comes.
We are getting excited for our trip to Camp Sunshine, we leave this Saturday for five days. Roger is excited and anxious to pack his things to go. I hope this can be a break for all of us and a chance to let off a little stress and have fun.
Thanks for checking in,
Dawn
Tuesday, May 30, 2006 4:10 PM EST
So we have been able to scale back our reactions and interventions with Roger’s seizures. So far they are not really turning into anything big and neuro feels we are familiar and comfortable enough with them now to do a lot of the post seizure monitoring at home and only call 911 or head off to the hospital if things seem worse than usual (like difficulty breathing or a seizure that won’t stop). This is good news and should make things easier to manage. I was starting to feel like the ambulance is my second car!!!
Not only does Roger have all his medical issues working against him, apparently his mother is as well. He and I went to the local playground last Friday, a seemingly fun time with Mom (and these don’t happen all that often!). Well he talked me into setting him on my lap to go down the “big” slide like he and Dad do all the time. Well let’s just say Mom is not as good at this as Dad. I put him on my lap, held on tight and down we went. Near the bottom my shoe scuffed on the slide and stopped me abruptly, well Roger kept going! He did a complete summersault off the end of the slide, landing on his back on the ground. It was HORRIBLE to watch and I really thought he’d snapped his neck, his head bent way back as he went over. He was VERY shaken up by the fall but he was able to stand up on his own and I carried him to the car. We went home, got Steve and off to Concord Hospital to have him checked in the ER. He was pretty much back to normal by the time we got there, they ran head/neck x-rays and CT scans, everything looked fine and we were sent home that evening. Needless to say Mom won’t be trying any sliding with Roger EVER again!!!
This Friday we’re off to Boston for Transplant clinic and lab work, his liver numbers have been climbing over the last few weeks and I’m anxious to hear if the docs have any theories on this. I’ll keep you all posted.
Thanks for checking in on us,
Dawn
P.S. I am very happy to announce that Roger’s Uncle Scott (my brother) has returned safely from Iraq!
Friday, May 19, 2006 11:24 AM EST
Roger had his weekly follow up labs yesterday and they are mostly unchanged from when he was discharged from the hospital. Everything is up some but his Prograf (immune drug) level and Keppra (seizure drug) levels are right where the docs would like them.
Also yesterday he had another seizure in the afternoon. This time we had just arrived at a friend’s house for a play date and got a chance to meet Bow Rescue this time. The seizure was a mild but longish one and after a few hours observation at Concord Emergency department we were sent home.
I have a call in to Neurology to re-evaluate how his seizures are being handled, we can’t be calling 911 every 2-3 weeks. I’m hoping we can just get specific criteria and monitor him at home and call for help only if he really seems to need it (like if he has breathing trouble or repeat seizures). Something has got to change because this is getting really old, really fast!
Love,
Dawn
Friday, May 12, 2006 6:37 PM EST
We made it home this afternoon. Today’s labs were slightly better or unchanged. The plan remains the same, labs each week and see the transplants docs June 1st.
Of course this is if nothing else happens!
We are tired but happy to be home.
Love,
Dawn
Thursday, May 11, 2006 5:21 PM EST
After a good night’s sleep Roger is feeling much more like himself today. He’s been to the playroom twice and managed to squeeze in a one hour nap this afternoon, yeah!
Labs are better today, bili is coming down (3.6) and finally he had a Prograf level today (6.7), the docs would like him 5-10. Yesterday I forgot to mention that his ultrasound showed NORMAL blood flow in the portal vein, this is where he had had a clot that was discovered about one year ago. This is AWESOME news, not sure why it changed but pleased that it did. Not sure if this will mean a change for his blood thinning treatment or if we’ll keep things the same because it seems to be working. And last but not least, the biopsy showed no rejection, that the liver cells are healthy and there is no dilation in the bile ducts (dilation means there is blockage or unhealthy ducts). The biopsy news is not the best because this means that the issue is likely in the bile ducts (yes even though the ultrasound says they look good-looking at different aspects I guess). The operating assumption is that there is some “sludge” in the ducts which may very well clear on its own. Time will tell, if labs improve than yup that’s what is was, if labs get worse then on to the testing (maybe if they feel the benefit out weighs the risk).
Right now the plan is not to do any further testing, watch labs for the next three weeks and see him in the clinic on June 1. The thinking is that the test to explore the bile ducts is fairly risky and they do not feel it is time for it yet. Last year we were having this same discussion and his labs were far worse than they are now.
Thanks for the prayers.
Love,
Dawn
P.S. If things go well we may be out of here tomorrow. Again, time will tell!!!
Wednesday, May 10, 2006 8:59 PM EST
The biopsy today went well. We were concerned that we might get pushed back until late in the day (not fun when the kid can’t eat!) but we got in by noon and it was good. There will not be results until tomorrow by 2pm or so and nothing is going to happen until we know the biopsy results. So we sit and wait, that’s a lot of what you do in the hospital!!! The good news is at least tomorrow he can eat and we should be able to visit the playroom in the morning.
Roger has been a little extra slow coming out the anesthesia this time. He has been like a drunk sailor since he woke, slurring his words and hardly able to stand under his own power. I think a good night’s sleep should do the trick, we could both use one, it has been a long day.
His labs today are continuing to climb and we’ve increased his Prograf dose yet again because his level is still about 3 today. I’ll update tomorrow after we know about the biopsy.
Thanks for the prayers.
Love,
Dawn
Tuesday, May 9, 2006 11:47 AM EST
No more avoiding the hospital stay, we’re on our way in this afternoon.
Yesterday’s labs were not any better. The liver numbers continue to climb (bili 3.8, AST 123, ALT 103, AlkPhos 1220) and the Prograf level is still under 4 after two good size dose increases.
The plan at this point is to get a liver biopsy to check for rejection and if there is none to run some tests on the bile ducts. The best case scenario is a rejection episode which can be quickly identified and treated. If we move on to the bile ducts this could open a whole big can of worms.
So pray for rejection (yes I do realize how strange a request that is) and we’ll keep you updated as things unfold.
Love,
Dawn
Friday, May 5, 2006 1024 AM EST
So far we have avoided a hospital stay!
Roger saw his transplant doctor yesterday and he felt Roger looked “great” (I still think he’s pretty yellow) and that unless his labs were “really” off there was no reason to keep him or do any testing. His labs were “OK” (bili 3.3, AST 103, ALT 75, Alk Phos 979) and the biggest concern is that his Prograf level is still too low (4.2). The doc felt that we need to get this level corrected before diving into any testing, it could just be that his Prograf being off is to blame for some things. We have labs again on Monday and see where things are at.
Also, he didn’t feel that there were any liver or transplant related issues that might be contributing to the recent seizures. A bit of a bummer because we are still at a loss to figure out why they are happening more frequently.
On a positive note, Roger continues to be FULL of energy and eating us out of house and home.
Thanks for checking in on us.
Love,
Dawn
Tuesday, May 2, 2006 2:57 PM EST
Small update to the update...
It is not just my imagination, Roger is a bit yellow. His bilirubin is up to 3.1 and his Prograf level (immune drug) is under 4, not good it should be 5-8. Not totally sure what this all means, could be a biliary infection or rejection? The good part is that Roger is feeling well overall. We are going to clinic Thursday morning for labs and so that the docs can lay eyes on him, the doc I spoke with yesterday told me not to be surprised if we get admitted then. Yippy, but I think there is something going on that needs to be figured out. I’ll keep you posted as things progress. If you have some extra prayers hanging around, please send them our way. Thanks!
Saturday, April 29, 2006 12:27 PM EST
The last couple of weeks have been very busy for us; doctors’ appointments and a school vacation week have kept us moving. The appointments have just been routine follow up visits to some of our non-transplant specialists. He had a thorough vision exam and we found that his vision is just fine. He also saw his neurologist and she felt he was doing well and that we probably had increased his seizure med enough to keep things under control (at least that’s what we thought that day, see below). The vacation week has been full of fun adventures, a bowling play date and multiple trips to the local playground. As a “special” adventure to kind of finish out the vacation week Roger and I decided to take another ambulance ride to Concord Hospital yesterday afternoon.
We’d had a pretty normal day of playground and errands Friday and about 4:30pm we were getting packed up to go pick up some Chinese food for dinner when Roger had another seizure. He seemed to sense that this one was coming and described the “aura” that is supposed to precede his kind of complex partial seizures. We were heading down to the garage and he asked me “what are those spinning things” that I’m seeing and he was a bit uncoordinated trying to walk down the stairs. By the time we got to the bottom he was running into things and I knew that something was going on. So I carried him back upstairs where the seizure really got going. He started his blank stare, slumped sitting and difficulty verbally responding to my questions; this was all about the same as his last few seizures. Then his muscles began to tighten and he clenched his jaw, these are different and more escalated seizure characteristics for him, so I gave his emergency seizure med and called 911. The seizure passed after about 10 min, a pretty long one, and then medical help arrived. They transported him to the hospital just to be on the safe side (New Boston ambulance this time, our town had already responded to another call and then other towns help out) and make sure another seizure didn’t happen in the car on the way to the hospital, I hate to over-react but I so afraid to under-react as well. So off we went and after a surprisingly short visit in the Emergency Department we were home by 8pm and able to tuck a very tired Roger into his own bed.
In the end the docs felt he was OK because he returned to his normal mental state and just increased his seizure meds again. So we’ll see how this goes, I don’t think anyone really knows why he keeps having these. The neurologist said if he keeps having them, maybe he’ll get an EEG, but not sure when we’d get going with that. The reality is that even the tests wouldn’t mean anything in relation to how they are treating him and that we’ll probably just have to learn how to live with the seizures and manage things for him at home.
We did get a bit of good news this week though, our Medicaid coverage for Roger has been renewed for another year. This is a HUGE help to us as it covers many of our out of pocket expenses for his primary insurance, co-pays and prescriptions are the two biggest helps. It does really help to ease the financial aspect of all this so we can focus on the medical needs.
Thanks for checking in on us.
Love,
Dawn
*** new photos – check ‘em out ***
Saturday, April 29, 2006 12:27 PM EST
The last couple of weeks have been very busy for us; doctors’ appointments and a school vacation week have kept us moving. The appointments have just been routine follow up visits to some of our non-transplant specialists. He had a thorough vision exam and we found that his vision is just fine. He also saw his neurologist and she felt he was doing well and that we probably had increased his seizure med enough to keep things under control (at least that’s what we thought that day, see below). The vacation week has been full of fun adventures, a bowling play date and multiple trips to the local playground. As a “special” adventure to kind of finish out the vacation week Roger and I decided to take another ambulance ride to Concord Hospital yesterday afternoon.
We’d had a pretty normal day of playground and errands Friday and about 4:30pm we were getting packed up to go pick up some Chinese food for dinner when Roger had another seizure. He seemed to sense that this one was coming and described the “aura” that is supposed to precede his kind of complex partial seizures. We were heading down to the garage and he asked me “what are those spinning things” that I’m seeing and he was a bit uncoordinated trying to walk down the stairs. By the time we got to the bottom he was running into things and I knew that something was going on. So I carried him back upstairs where the seizure really got going. He started his blank stare, slumped sitting and difficulty verbally responding to my questions; this was all about the same as his last few seizures. Then his muscles began to tighten and he clenched his jaw, these are different and more escalated seizure characteristics for him, so I gave his emergency seizure med and called 911. The seizure passed after about 10 min, a pretty long one, and then medical help arrived. They transported him to the hospital just to be on the safe side (New Boston ambulance this time, our town had already responded to another call and then other towns help out) and make sure another seizure didn’t happen in the car on the way to the hospital, I hate to over-react but I so afraid to under-react as well. So off we went and after a surprisingly short visit in the Emergency Department we were home by 8pm and able to tuck a very tired Roger into his own bed.
In the end the docs felt he was OK because he returned to his normal mental state and just increased his seizure meds again. So we’ll see how this goes, I don’t think anyone really knows why he keeps having these. The neurologist said if he keeps having them, maybe he’ll get an EEG, but not sure when we’d get going with that. The reality is that even the tests wouldn’t mean anything in relation to how they are treating him and that we’ll probably just have to learn how to live with the seizures and manage things for him at home.
We did get a bit of good news this week though, our Medicaid coverage for Roger has been renewed for another year. This is a HUGE help to us as it covers many of our out of pocket expenses for his primary insurance, co-pays and prescriptions are the two biggest helps. It does really help to ease the financial aspect of all this so we can focus on the medical needs.
Thanks for checking in on us.
Love,
Dawn
*** new photos – check ‘em out ***
Friday, April 14, 2006 7:27 AM EST
It has been one week and no seizures. Yippy! Roger has finished up the antibiotic course and seems OK. The doctor said to watch and see if his symptoms clear up, but he didn’t really have many even before the antibiotics. So as long as there are no more seizures I’m going to assume that things are better.
Wednesday Roger finally got to go to his first dental appointment, I’ve had to reschedule a few times (broken leg, cold, low white count). Between the liver disease and all the meds he’s on and been on, Roger is set up to have dental problems (many of the liver kids do) and I’ve been dreading what we’d find out at the dentist. Roger probably should have started his dental care a year or more ago, but he had way too much going on and all his doctors recommended waiting till after his transplant.
He did an AWSOME job, it wasn’t easy and he did cry some (he seems to do that with all medical things) but got through the whole exam and cleaning! The only part we didn’t get done was the x-rays, the film bits they put in his mouth were just so big and he kept gagging, he tried many times and was a real trooper. The good news is that he has a full set of strong, healthy baby teeth! The dentist could find no signs of decay or cavities (might be between the teeth but can’t tell without the x-rays) and his gums are in great condition. There was a bit of discoloration I was worried about but it polished right off and his teeth are nice and white again (they match his eyes)! She said keep up with the good brushing and come back in six months. The only small bit of not so good news is that he has a cross-bite in the back (top teeth go on the inside not outside of the bottom ones), this is not a problem with the baby teeth but if the adult ones come in that way were off to the orthodontist. We’ll cross that bridge later.
I am thrilled with the great news, I’ve been expecting that this was going to be yet another problem from Roger and that we’d be off to Boston to get him properly sedated to be able to have all the work done at the dental specialists at the hospital. Looks like we dodged that at least for now. Yippy!
Love to All,
Dawn
Saturday, April 8, 2006 2:55 PM EST
Well, Thursday Roger had another seizure at home and didn’t get the emergency seizure med because I was having trouble getting the cover off and he “snapped out of it “ right as I finally got it off. This time it lasted a good five minutes and he seemed a bit less responsive during the event than the one two weeks ago. After not having one for 4 ½ months he’s now had two in less than two weeks. I’m not really thrilled about this, the seizures are not violent but disturbing nonetheless.
His neurologist said the seizures themselves are not a problem (easy for her to say) and do no damage (that is the good part) but the concern is what is going on that has increased the frequency. He seems to have seizures when he gets sick from a cold virus because it lowers his seizure threshold, but the dose of his daily seizure med should be good enough so that he doesn’t seize every time he gets sick. So we’ve upped the dose again and spent Friday getting lab work and being seen at the local pediatrician’s office. He has been off and on sick with upper respiratory symptoms since the beginning of March, just when I think he’s over a cold it starts up again. The suspicion is that he has a sinus infection that he just has not been able to shake on his own, even with the antibiotics he’s already on for his liver. So we added another antibiotic (zithromax) for five days and he should be symptom free in the next 10 days, if not we’re back to the pediatrician to look for something else. Possibly a pneumonia type issue, but the doctor feels his lungs sound too good and he’s not coughing enough to be pneumonia.
Roger is feeling well and has not had major lingering side effects from the seizures (he did sleep most of Thursday). I hope that we can get this figured out and get them under control. I’m not sure if MY nerves can take too many more of them. I guess this is just another new adjustment on our transplant journey.
Thanks for checking in.
Love,
Dawn
Monday, April 3, 2006 8:17 PM EST
Yes I know it has been awhile since I posted an update. For the last few months steps here have been only moving forward, last week we had some steps back. Not really big ones but it’s funny how quickly you can adjust to things going well so that even a little step back is a disappointment.
As I had mentioned in my last update we were able to stop Roger’s steroid at our last transplant check up, we just needed to check his lab levels in a couple of weeks to make sure no rejection was occurring. Last Friday we had those labs done, the goods news was no apparent rejection, his bilirubin was down again to 0.7 (another new all time low). The not as good news was that his liver labs were up in the 80’s (they’d been there as recently as Jan.) and his white blood cell count was low (2.9-yes some of our friends would be thrilled with a 2.9, but for him it is low). Three months ago these would be labs I’d be thrilled with but I’d already adjusted to his new, almost normal labs (funny how fast that adjustment happens especially when you’re adjusting to something good). He had been having a cough and runny nose for a few days and these labs really seemed to make sense for having a viral infection (a cold). So, no big deal, wait two weeks and if the cold is gone draw labs again.
The real bummer that day came later in the evening, Roger had another seizure at home. He and Dad were playing Candy Land and Roger was having a hard time moving his game piece, he seemed to not be able to find it. He was disoriented, moving his eyes around oddly and his pupils were HUGE. Steve asked him how many fingers am I holding up and Roger reached out for them because he said he couldn’t see them. It took us a minute or two to figure out it was and by then he was beginning to seem to be coming through it so we did not give him the emergency seizure med (which saves us all a 911 call and trip to the emergency room). I paged neurology and the doctor increased his regular seizure med and felt that he had a seizure because of the viral infection (colds decrease the seizure threshold). He had actually outgrown the dose enough that the cold was enough to touch off a seizure. The bummer is that we had hoped that he’d outgrow his dose and be able to get off the seizure meds because the blood on his brain was clearing up, with this happening I’m not sure if that plan is still realistic. Steve and I had really hoped (and prayed) that this issue was resolving, I guess it is not. We will be seeing neurology later this month and might have more information then.
Thanks for checking in on us, it’s been a long week. We also received news that another family member has a new, big health challenge to face and Roger’s uncle Scott (my brother) has been deployed to Iraq for six weeks with his Air National Guard unit. Please keep them both in your prayers.
On a brighter note, we’ve been accepted to go to transplant camp this summer!!! We will be having our very FIRST family vacation at Camp Sunshine in Maine this June 10-15 and we are very excited about it.
Love,
Dawn
Friday, March 10, 2006 7:21 PM EST
We had one of the busiest and most crazy trips to the “Bear Hospital” yesterday. We went for our monthly transplant check up, but by the end of the visit we’d visited many hospital friends, played in the new toy room, met two Boston Celtics players and were interviewed for the TV news!
Roger’s check up went great, his labs continue to amaze us and we did get to stop his steroid med (his bones will be very happy about that!). Dr. Rohrer and I spent most of the time talking about some long term plans and goals for Roger’s care. I am so used to literally taking it day to day, lab draw to lab draw that I’m having a bit of adjustment to think about the next year or two. We had to visit so many hospital friends this time because we won’t be going back to transplant clinic until May! We’ll have labs in two weeks just to make sure there is no rejection as a result of stopping the steroid, but then nothing for 6 weeks until our May visit. I think like this schedule; it seems like just yesterday that we were doing labs three times a week and Boston for clinic every week.
Our first stop after clinic is always to the toy room to play, but this time was special because it was the first time to play in newly remodeled play room on the 8th floor. Little did we know that it was also a financial donor/media event day in the new play room. As Roger came in the door a woman approached and asked “can we film him for the news”? Yea, I guess. And could we interview you too? Yea, I guess. I guess she didn’t know I’m a quiet, private, hermit that lives in the woods in rural New Hampshire-not the most polished for big city news (click here for a link to the story). And, oh by the way there are two Celtics players on their way up. What a day for Steve not to be at the hospital with us (of course I did have to call him to rub it in a little)! Between the new bright lights and colors in the play room (it looks AWESOME) and all the commotion (including Roger running around saying “Mommy look” at every single new thing in the room) I thought my brain was actually going to explode.
So things continue to go well here in our world. I am thrilled about it but have times where I get thinking about all the friends we know (either in person or through their websites like this one) who are still struggling everyday or the angels who have already flown up to Heaven. There are many times I actually feel guilty about our good fortune. Especially when I think of the kids (big ones and little ones) who have had medical experiences similar to Roger’s, why does God call one home to Heaven and not the other? I know that the answer to that is not for me to know.
Love to All,
Dawn
Sunday, March 5, 2006 6:38 PM EST
So I’ve been very slow at getting another update posted. Roger was on school vacation last week and Daddy was on vacation for the first part of the week too. We’ve been busy enjoying life as a “normal” family, the kind where vacation time is not spent in the hospital or going to doctor’s appointments.
Last week started with attending a birthday party for Roger’s six year old cousin, there were lots of kids there to play with and Roger had a great time. Monday was a morning of errands followed by lunch at the mall (Roger had a milkshake and french fries at the Food Court-very normal kid stuff!!) and a gymnastics class. Tuesday we were off to Boston, this time to the Museum of Science (much more fun than the “Bear Hospital”) and Roger was in sensory overload (Mommy too). The favorite things were the live animal show with an owl and the HUGE water table in the little kids’ discovery area. Wednesday was a haircut and bowling, Pepere joined us and it was a “glow bowling” day with lots of colored lights and dancing.
BUT, by Thursday we were paying the price for pretending that we’re normal. Roger had started with a cough on Wednesday and it was now a full blown thing with a low fever, cough, stuffy head and he slept for most of the day (about 9am to 2pm). He was still eating some and managing to get enough fluids in, so no labs to do but just keep a close eye in things. Today (Sunday) he is still under the weather but it has not turned into anything big (yet) and on Thursday we’ll be at Transplant clinic and have regularly scheduled labs to check on how things are going.
So that’s what is up in our world, thanks for checking in.
Love,
Dawn
Wednesday, February 15, 2006 4:04 PM EST
We had our final leg follow up yesterday and got the go ahead to resume all “normal” activities. The whole event has not seemed to set Roger back very much at all. His strength is down some but I’m sure will come back to where he was before the break pretty fast.
The plan is to make sure he gets plenty of extra calcium and try to get him off his steroids next month, so that his bones have their best chance of really getting stronger. As long as he doesn’t have recurrent breaks we’ll got back to ortho next year and have an x-ray look at how his bones are doing.
Just a short note today (posted some new pics though), hope you are all well. Thanks for visiting.
Love,
Dawn
Thursday, February 9, 2006 6:01 PM EST
It’s all good at our house these days. Roger is the energetic, talkative (maybe a little too much) bundle of bouncing boy he was meant to be. We had Transplant clinic today and I have nothing but good news to report. The docs thought he looked GREAT and my favorite is his bilirubin is down to (drum roll please…) 0.9 (normal, normal not Roger normal)!!! I know we’ve been marveling at his white eyes a lot around here but it’s awesome when that is backed up by the numbers. This is his new all time low value. His other labs look good, his liver enzymes are still up a little (AST 71, ALT 80) but these may be his normal and are only 20-30 points above normal. Pre-transplant those values ran closer to 200-250, overall a huge improvement. His immune drug level is good and we are continuing to decrease his steroid, he is down to 1 mg prednisone a day. If things continue this way we should be able to stop it completely at our March 9th visit. We are also talking about only having to go to Boston for clinic every other month and do labs locally on the month that we don’t have clinic. WOW.
This Tuesday we’ll be back in Boston to see the leg doc and check on the healing. It seems to be doing just fine and we are actually having a harder and harder time slowing him down to take it easy on the leg. With any luck we’ll get good news then too (don’t want to sound greedy but can’t hurt to wish for it). It will have been about 4 weeks since he injured it and the doc had estimated it would take 3-6 weeks to heal, so you never know.
Thanks for checking in on us, we’re doing GREAT!
Love,
Dawn
Thursday, February 9, 2006 6:01 PM EST
It’s all good at our house these days. Roger is the energetic, talkative (maybe a little too much) bundle of bouncing boy he was meant to be. We had Transplant clinic today and I have nothing but good news to report. The docs thought he looked GREAT and my favorite is his bilirubin is down to (drum roll please…) 0.9 (normal, normal not Roger normal)!!! I know we’ve been marveling at his white eyes a lot around here but it’s awesome when that is backed up by the numbers. This is his new all time low value. His other labs look good, his liver enzymes are still up a little (AST 71, ALT 80) but these may be his normal and are only 20-30 points above normal. Pre-transplant those values ran closer to 200-250, overall a huge improvement. His immune drug level is good and we are continuing to decrease his steroid, he is down to 1 mg prednisone a day. If things continue this way we should be able to stop it completely at our March 9th visit. We are also talking about only having to go to Boston for clinic every other month and do labs locally on the month that we don’t have clinic. WOW.
This Tuesday we’ll be back in Boston to see the leg doc and check on the healing. It seems to be doing just fine and we are actually having a harder and harder time slowing him down to take it easy on the leg. With any luck we’ll get good news then too (don’t want to sound greedy but can’t hurt to wish for it). It will have been about 4 weeks since he injured it and the doc had estimated it would take 3-6 weeks to heal, so you never know.
Thanks for checking in on us, we’re doing GREAT!
Love,
Dawn
Saturday, January 28, 2006 76:14 AM EST
Yesterday Roger had his first follow up for his leg, it has been 12 days since it happened. Things went well, they confirmed that it is a femur buckle fracture and that it is healing nicely. He has been able to walk on it with and without his brace on for the last couple of days. The doctor would like him to wear his brace to school until our next follow up (Feb. 14) and try to take it easy, he can walk a little in the classroom but should still use his stroller for most of his getting around. At home he said it is OK to leave the brace off and let him do a little more but to still try and take it easy, no running or jumping. Roger has been more or less pain free since the first few days and really is progressing so much faster than I ever expected. I did ask the doctor about his overall bone health, given that he’s been through so much especially this last year. He felt that his bones are kind of “thin” (meaning weak) and that he could benefit from extra calcium, I am just working out how much and when (timing with all his other meds)with his transplant team. His liver disease, steroids and lack of weight bearing during all his time in the hospital this last year have contributed to the situation and we should be able to turn things around.
On another note, today is the one year anniversary of Roger’s first transplant. Who knew when we received our “call” last January how our lives would be changed. Anyone wanting to “re-experience” that craziness can find the details in the journal history on this website. In re-reading it myself I find that even though a year has passed it feels like yesterday in some ways and some of it I almost forgot about because I pushed it so far into the back of my mind. We don’t have any big plans to celebrate except to be together as a family and keep in our prayers the family of the child who was our donor. They too are experiencing an anniversary today, I can only imagine how difficult this last year has been for them. Please keep them and their angel in your prayers.
Thank you all for your support over this year, people say that the first year post-transplant is the hardest, let’s hope they’re right and this year goes more smoothly!
Love to All,
Dawn
*** New photos, check 'em out ***
Friday, January 20, 2006 3:43 PM EST
Well, it turns out the leg is broken. He has what’s called a buckle fracture of the femur, a severe bending of the bone and is considered an incomplete break. He has a soft brace on it to help, on most kids it’s a knee immobilizer, on Roger it is more of a full leg immobilizer going from hip to ankle. From almost the moment they put it on it cut his pain down and he also got some Tylenol with Codine to help too. Between the two things he has been much more comfortable.
It was actually Tuesday before we got him off to a doctor. We kept running the scenarios in our heads. First, it was a holiday Monday and we knew ANYTHING would take extra hassle to get anything completed. Second, most times we have tried to get medical help locally I end up scaring off the folks as soon as I start giving his history. It is really quite a sight, their eyes get as big as saucers and as they are backing out the door they are muttering “I’ve got to make a phone call”. So we end up in Boston anyway after wasting much time and effort (not to mention patience) on our parts. This time we just waited until Tuesday (he actually seemed a little better Monday night) and made an appointment with a Pediatric Orthopedist at NEMC. Roger had seen him once pre-transplant for a limp he was having, so we knew him. The doctor feels this should heal up on its own over the next 3-6 weeks, but we will be going every 10 days for x-rays to track the healing and make sure everything is going properly. There are two areas on concern on the first x-rays that he wants to watch and make sure nothing is getting missed or getting worse.
The good news is that we are going to try letting him go to school (in his stroller) on Monday, because he is already getting very bored with the sitting on his butt all day thing. The physical therapist at school is working of finding a small wheelchair that might work better for him. I am going with him the first day and if the aide who will be with him feels up to it then he will go by himself. We all think it will really help mentally with his recovery and should help keep all the other muscles moving and minimize the degree of set-back this will cause for him. I hope it works!
Everyday he seems to be doing better, he has a lot of anxiety about being moved because he thinks it is really going to hurt, but it is getting easier and less painful. We are learning ways to move him better and he is less sensitive to the movement. So yet another adventure for the Sarette’s, I really am tired of learning how to deal with ALL the things in the medical text book. But, it is just a regular kid thing for a change!
Love,
Dawn
P.S. I've mention here before our friends Larry and Jenny (Roger's preschool teacher). Larry has been dealing with many complications following a bone marrow transplant and today left us for heaven. Please keep them in your prayers.
Sunday, January 15, 2006 1:52 PM EST
Just when you think things are going great, one step back. Roger has been making unbelievable progress over the last few weeks, eating better and gaining weight. Yesterday for the first time ever he jumped, both feet off the ground at the same time! But this morning he took a fall (slipped on some melted snow on the floor) and his hurt his leg, seems to be sprained/strained but not really sure yet. He is comfortable if he’s off of it so we’re just letting him take it easy today and see if he needs to have it looked at tomorrow. I hate running him off to a doctor too quickly because sometimes he gets put through a lot of stuff for no reason because all the docs want to make sure they cover their butts and don’t miss anything. Anyway, today he’ll rest and we’ll see what’s up tomorrow.
Last Thursday we had our monthly transplant check-up in Boston and it went very well. The visits are becoming a little boring which is great, that means nothing “bad” is going on. He had gained a little more than one kilogram (about 2 ½ lbs) since his December visit bringing him up to 15.7kg (about 34 ½ lbs) and has been eating more than I ever thought he would (or could). Everyone says he looks taller, but when I measure him (not easy feat let me tell you, you’d think it was the end of the world the way he fusses about it) I get the same 35 ½ to 36 inches. Maybe he is just getting stronger and his posture is improving. He has developed some thighs on his “chicken legs”, actually he is getting more meat on his bones all over-YEAH! I don’t have all his labs yet but his bilirubin is down to 1.7 (should be under 1) and his albumin is up to 3.1 (should be over 4) and probably is from his better eating. His prograf (immune drug) level is good and we were able to continue weaning his prednisone (steroid) down to 2mg once a day, we hope that he can get off of it entirely in a couple of months. So over all things are REALLY good for him medically, though we never know if that will change again suddenly, but for now we’re enjoying the heck out of it!
Love,
Dawn
Sunday, January 1, 2006 1:45 PM EST
Merry Christmas and Happy New Year!!!
Things are really going well here right now. We had our holidays at home and are looking forward to the coming year. Roger is doing GREAT, he is full of energy and enjoying life to the fullest.
We spent a lot of vacation week playing with Roger’s new favorite thing (direct from Santa) a Super-Hero playset, complete with Spider-man and his friends. His imagination really takes off with it. Unfortunately our play date during vacation did not work out. We had planned on going to a friend’s house but his mom was having some complications due to a recent surgery and had to cancel. I found the situation kind of ironic, it is usually us that have to cancel for heath issues. We are hoping to see them this week though, the mom is teaching a gymnastics class that Roger and I have signed up for. It is a one to one self-paced class for kids who just don’t fit into a traditional gymnastics class. We’re both looking forward to it. We also attended a music program at the library during vacation and had a lot of fun. Roger saw a boy from his preschool class, a girl from Toddler Group at the Children’s Place and another boy and his sister from the play group we used to go to in our town. Roger had a lot of fun and really seemed to enjoy being with all the kids.
So, this week is back to school and Roger is looking forward to it. There is nothing medical on the horizon (at least a planned thing) until our next Transplant clinic visit on January 12. We are counting our blessings while we’re out of the hospital, we have friends who spent the holidays very sick in the hospital or in heaven with God, and it helps us to know just how blessed we are.
Love to all,
Dawn
Saturday, December 17, 2005 4:23 PM EST
Life is going well for all of us and we are optimistic that we’ll have a quiet Christmas at home. Roger is almost 11 months out from his transplant and things seem to be calming down finally.
We had what has become our monthly liver clinic visit this week. It was uneventful and went well. Roger did a GREAT job at the hospital, it gets to be a long day by the time we’re all done. He was very brave for his blood draw, stills cries, but holds still and gets it done quickly. He was patient while we waited to see the doctor, was polite and talked with folks. When it was his turn he took off down the hall with the coordinator to get weighed, and jumped up on the table lifting his shirt for Dr. Freeman to check his belly. Usually Roger is grumpy because he doesn’t want to deal with this part of the day, he just wants to get on to the toy room to play. He usually does not have much patience for visiting with the nurses, docs and other staff people we see during our visit (he and we are pseudo-celebs at our hospital). This time he was very patient and polite, it made for a very nice day.
Roger did finally get his play time in the toy room and even a special treat from his friends Andrea and Ginny. They are always so sweet to him and they got him a Christmas present, a remote control Bat-Mobile that he absolutely loves. Because the temporary toy room is kind of connected to the PICU we always see a lot of our PICU friends while we’re there and then see even more when we swing through the PICU on our way out. Our last stop was upstairs on the 7th floor to see more nurse friends and check on his other favorite room (it was occupied). It is so nice that all the people that put so much energy into helping Roger when he’s been so very sick, get to see him doing well.
We also got to see Miss Jenny, she is Rogers’s preschool teacher but they have only been in class together about a week this year. Roger had all of his complications that kept him out of school in September and in October Miss Jenny left school to care for her husband Larry who was receiving a bone marrow transplant. As it turns out Larry got transferred to the PICU and is currently residing in Roger’s favorite PICU room. We were sad to see them there, they were actually close to going home but have had a set back. Ironically, Larry is having liver issues as a complication to his bone marrow transplant. Please keep them in your prayers.
So anyway, Roger’s labs are stable and the only things we changed were two med doses. We’ve managed to wean his prednisone (steroid) down to 3mg (hope to be off of it by about 1 year post-tx). But we did have to raise his Prograf (immune drug) from 0.5mg twice a day to 0.75mg twice a day. This is monitored by the drug level in his blood, they’d like his level to be about 6 right now and this time it was 3.8 so he needs a little more. The coordinator says this is good news in a way because it means that his liver is working well and metabolizing the drug better. We’ll take it!
Love,
Dawn
Friday, December 9, 2005 3:35 PM EST
I know it has been a while since my last update, sometimes when things are good I forget to share that too!!! Things have been going very well the last few weeks (knocking wood as I type). Roger has been busy at school and enjoying the snow we had recently.
Today we are having a big snowstorm and we hope to be out playing in it soon. Last year Roger did not like the snow AT ALL. Just getting him dressed to go out was an event and then when we finally got outside he’d refused to walk and just complain about wanting to go in. This year he helps dress himself, charges out the door and we have a hard time getting him to come in. I think this is a really good indication of how much his transplant has FINALLY improved his quality of life. We feel like he has made it to the point where he is doing better after his transplant (even through all the complications) than he was doing before. His body may still be oddly shaped but it really seems to work better for him and the GIANT belly does not seem to slow him down.
So things are quiet for now and we’ll be in Boston again next Thursday for our next transplant check up and labs.
Love,
Dawn
*** more new photos – check’em out ***
Saturday, November 19, 2005 12:41 PM EST
Roger had his transplant check up on Thursday. The report is overall good, I do not have the labs back yet, but they don’t want to see us again for a MONTH!
The major concern that I had was about the size of his belly and the prominent blood vessels he is developing. I wanted to know if this is what the docs were expecting due to the portal vein blockage or is there something going on that needs to be addressed. I think Dr. Cooper shared my concern because he took it upon himself to walk down to radiology and personally work to get Roger in for an ultrasound that morning. He happened to run into our favorite ultrasound tech on the way and he agreed to see Roger right away, we’d just have to go to adult radiology (no big deal). So after less than 30 minutes total we had found adult radiology, gotten a scan and a preliminary reading from the pediatric radiologist who came down just to see Roger. OK, so there are some benefits to being a real “frequent flyer” at the hospital!!! The scan showed no significant changes from the last one he had in September, there is some blood flow in the portal vein and no fluid in his abdomen (both of these are GOOD). So, we’ll just keep an eye on things and see what’s up at our clinic visit next month.
Things have been fairly quiet at home for us lately (Yippee!) and Roger has made it to school almost every day for November. He is starting to do a little better with his eating and generally being a great boy to deal with. I’ll take it, thank you God.
Love,
Dawn
*** new photos – check’em out ***
Monday, November 7, 2005 10:33 AM EST
Roger had another little medical adventure yesterday. It seems he had a short seizure at home and then we were off to the hospital to have him checked out. We first tried Concord Hospital’s Urgent Care center, but after I started to give Roger’s history to the nurse we realized we were in the wrong place. The doctor at Urgent Care is an ER doc and had been on one of the times Roger had been in (either brain bleed or sepsis) and remembered him. He said we really should go to the Emergency Room so that he could get proper treatment. I always thought that the emergency room was for life threatening situations and that what we had this time was urgent, but not an emergency. Not exactly, I guess urgent for us is really an emergency. Oh well, live and learn.
Roger had been feeling a little off all morning, really tired and snuggly. We’d been keeping a really close eye on him because his symptoms were very similar to the symptoms he had prior to his sepsis. He had actually seemed to be perking up a little and was about to help Grammy make some soup. She picked him up to go to the kitchen and he got limp, complained of needing to poop and she thought he might get sick to his stomach. She set him on the toilet and he went even more limp, got very out of it and had a starring spell for a couple of minutes. He seemed to come through it and we did not end up calling the ambulance, but I had the phone in my hand.
He seemed to stabilize and Steve and I took him ourselves to be checked out. We knew he needed to have some labs run but weren’t sure if he’d need a CT scan of his brain. His labs checked out fine, he got some IV fluids and the ER doc (same on who treated him the night of the sepsis) observed him for a couple of hours. He really got back to being his normal very quickly (didn’t end up getting the CT scan), the ER doc checked with Transplant and they said send him home, YEAH!
So this morning he is doing OK, a little diarrhea and still a little sleepy, but mostly OK. I have call in to his neurologist to see if she has any concerns about the event, but for now we are resuming life as “normal” and off to school this afternoon if he’s feeling up to it.
Love,
Dawn
Wednesday, November 2, 2005 7:08 PM EST
Well, no news is good news. We are still at home (knock wood) and doing well.
Roger had his four year check up, flu shot and long awaited (by mommy) feeding & nutrition consultation last Tuesday. It was a VERY busy day. We’d not seen his primary care doctor since before transplant and had a lot of catching up to do. The feeding & nutrition consultation was trying on mommy’s patience. Roger is very used to home visits by various agencies and really sets out to drive mommy up the wall and make it difficult to get anything accomplished. I think I got some good hints and should receive their official report and suggestions soon (well, someday-it is a state agency after all!).
The one down part of last week was that Roger ended up feeling bad on Thursday in response to his flu shot. The flu shot is designed to make your immune system react to the flu virus, so if your immune system is “messed up” to begin with it can cause more issues. The direct concern for Roger is that once the immune system reacts to the flu virus it sometimes keeps going, sees a “foreign” liver and touches off a bout of rejection. He had a low grade fever, slept most of the day and got much more jaundiced. The jaundice is concerning because a rise in bilirubin is a potential indication of rejection, BUT bili usually goes up in response to a virus too. So we’ve been watching him closely and he is finally starting to pink up again, we’ll get labs on Thursday and see what’s up. I think (knock wood) we’ll be OK, so far rejection has not been one of his biggest concerns (just everything else) and his prograf (immunosuppressant med) level is very steady.
Halloween was a VERY fun time this year. Roger was Spider-man (of course) and got to have a party at preschool and then a costume parade with the WHOLE school (preK-grade 4). Mommy also got to hang out and observe some of the regular class time while waiting for the party. Roger had “gym time” with Miss Pat (physical therapy) and did lots of running with the class. He is about half the size and half the speed of the other kids, but he never seems to mind. He got there when he got there and smiled the whole way! The parade was really something and Roger’s favorite thing was to go up and “web” the other Spider-men in the parade (really cute). And after a very active day at school Roger managed to make it out for Trick-or-Treat around the neighborhood in the evening. He liked going to the door and choosing a candy from the dish (there was quite a selection process) and was really excited at the house that gave out fig newtons (the only thing he’ll eat out of the whole bucket of candy!). We went around with a family from across the street and Roger really had a fun time with the other kids.
I posted some new photos from Halloween.
Love you all,
Dawn
Friday, October 21, 2005 6:56 AM EST
Things have been going well at home over the last couple of weeks. Roger has been enjoying school and finally starting to eat a little better. We had two check ups this week, one on Tuesday with Neurology and one on Thursday with Transplant. Both went well.
Neurology was just a follow up from the brain bleed Roger had in mid-August. He seems to be doing well with no ill effects from it and the anti-seizure med (Keppra) he’s on is dosed well and not causing any issues for him. We’ll probably keep him on it until next August, then get a CT scan to see how well the blood has reabsorbed, and then discuss stopping the med. The doctor said come back in 6 months unless something comes up, good news.
Transplant was our regular clinic visit and lab work. The doc thought Roger looked good and was pleased that he was beginning to eat better. I don’t have any specific lab results from yesterday, they operate under the “no news is good news” plan (don’t really like it but kind of stuck with it) which means there were no significant changes from his last set of labs. His last set of labs had Crit 31.4, WBC 9.0, platelets 177, INR 1.5, glucose 74, BUN 15, creatinine 0.4, albumin 3.2, total bili 3.1, AST 64, ALT 87, alk. Phos. 734, magnesium 1.3 and Prograf 9.9. Some of these are not quite “normal” but pretty good for him. The best news is that they said come back in one month, YEAH! We’ll run labs in two weeks but don’t have to go back to Boston for four weeks.
So, that’s where we’re at for now. Roger has his four year old physical coming up next week with his general pediatrician, but not too much else on the radar other than school. We’re going to do our best to stay out of the hospital and just be “normal” for a while, wish us luck!
Love to all,
Dawn
Tuesday, October 11, 2005 7:08 PM EST
Roger FINALLY made it back to preschool today! Twice he’d been planning on going but ended up in the hospital the day before. He has really been looking forward to it. Talking about the things he used to like last year, he hasn’t been in school since his transplant in January. Today was also picture day, even though he started later than the other kids he’ll still be in this year’s photo. Yeah.
Well, he says he had a great time and wants to go again tomorrow. Sounds good to me! He even ate dinner with us tonight, he had worked up quite an appetite running with the kids on the playground. I think getting back to “normal” is really good for all of us.
Love,
Dawn
P.S. New photos, check’em out!!!
Thursday, October 6, 2005 7:36 AM EST
We’re HOME again, got in about 7:30 last night after a short three day stay. I think this trip may have been a small over reaction to his vomiting over the weekend, but we just had to be extra cautious given his history. The symptoms he was having this Sunday were too similar to what he showed us prior to the sepsis event that we just felt like we needed to have him checked out for our own sanity.
So he ended up needing IV fluids and vomited again at the hospital on Monday (I felt a little better about bringing him in) he had some labs and tests over Tuesday and Wednesday to check out his GI tract. Our concerns were that he might have developed an ulcer or obstruction as a result of the recent sepsis. He had an upper GI study that showed no large ulcer or obstruction (YEAH). Then he had a gastric emptying study that showed his stomach emptied slowly when he is lying down but normally after he has sat up and moved around. They theory is that the slowing is left over from the hit that his body took form the septic shock and “should” improve on its own over time. We can use this information to adjust how, when and how much he eats to try and minimize any vomiting. I guess the longer the food stays in your stomach the more nausea and vomiting you are likely to experience.
I guess the admission was mostly nothing but at least we know his stomach is OK and that it is not the sepsis returning. So we’ll keep encouraging him to eat and keep hydrated. We are going to try and stay out of the hospital until our next clinic visit which is in two weeks-we’ll see!!!
I also wanted to share how proud I was of Roger to cooperate for the two studies he had to have. For the first one he had to drink a large amount of Barium in the form of a milky white liquid (very yucky!) and get all rolled around under the x-ray machine. It was not fun but he was VERY brave and did a great job. For the other test he had to eat a few bites of solid food with the tracer mixed in (it was a PBJ), he really had not wanted to eat it but he did. Then he had to lie still under the camera for an hour, he again did a great job. I have to admit that I was pretty surprised that he did as well as he did.
Thanks again for your prayers and support.
Love,
Dawn
P. S. One of the liver kids from our Classkids.org family flew to heaven last weekend. Haley was 11 years old and had autoimmune hepatitis/lupus. She’d had a very tough road but left suddenly and unexpectedly, her family is devastated. Please pray for them during this difficult time, Haley was an amazing girl and I am so sad for them.
Monday, October 3, 2005 6:36 PM CDT
Hi Everyone,
We've had a minor set back. We took Roger into the hospital again yesterday because he hasn't been eating well and is having trouble keeping food & liquids down.
We don't have an answer yet, but the next test will be an Upper GI. Hopefully it will shed some light on what is going on. We really want to get this corrected, so we aren't worrying all the time what's 'going to happen next'.
Thank you for all your prayers. The Lord is definitely listening.
Love,
Steve
Tuesday, September 27, 2005 8:26 PM EST
WE ARE HOME!!! As planned he finished the IV antibiotics on Sunday, had Monday for “observation” and got sprung this morning. We are all very tired but VERY happy to be home. Roger had a long overdue tubbie bath and got tucked into his own bed, with strict instructions to sleep through till the sun comes up (we’ll see about that one).
No really big changes to our at home routine, they increased his prophylactic antibiotics to include Bactrim twice a day for a month, then Augmentin twice a day for a month. Due to the increase in antibiotics they restarted his Nystatin to guard against fungal infection, mostly Thrush in his mouth. We’ll have labs in Bedford this Thursday and go to clinic in Boston next Thursday. Next Wednesday Roger has a “regular kid” annual check up with his primary pediatrician (so many doctors, so little time). Of course the docs are all worried about his eating, but I suspect he’ll get back to his usual pretty soon.
So, he dodged another big one and we’re home to try again. His discharge paperwork reads…”Pseudomonal sepsis (bacterimia) complicated by need for intubation and acute renal failure-all resolved”. Please pray that we can find a little quiet time here and stay out of the hospital for a bit. Also, thank you for all your prayers and support, they have pulled us through again.
Love to all,
Dawn
Saturday, September 24, 2005 8:33 PM EST
Roger would like to say “hi” to all of his preschool friends and wants them to know he will be joining them soon. Thank you for the nice message in his guestbook, Miss Jenny brought him some pictures of the class to see while he was in the hospital; it was fun to see them.
Roger has been making slow and steady improvement over the last couple of days. His labs are holding stable and he is trying more to eat (he had 4 strips of bacon for dinner tonight). He is able to get around a little better in the play room and seems to be getting some strength back.
Today Steve, Roger, Memere and Pepere went for a walk to the Public Garden where Roger got to feed a duck some bread. I’m sure the fresh air and sunshine will help him feel better. Already he seems a bit more chipper and even talked to me and Grammy on the phone tonight!
So far it looks like we are still planning on Tuesday to get out of here, but I’ll believe it when I see it. I’m being patient though, Roger has come a long way and there are many surprised folks here who didn’t think he’d be going home with us this time!
Love,
Dawn
P. S. I posted some new pictures of Roger at the “Bear Hospital”
Thursday, September 22, 2005 9:40 PM EST
Roger got up and walking on his own today while we were in the playroom, still shaky steps, he didn’t even want to hold my hand for a few of them. He tackled another McDonald’s milkshake today and just tonight while we were watching a show, he ate a whole cheese stick! He has still been tired during the day (not much sleeping last night) and runs out of energy playing very quickly. He is getting a unit of blood tonight, because his hematocrit is low, and this “topping off” might help with his energy level.
Well today’s labs hold a new all time low for our friend bilirubin, 1.2 (high normal here is 1.1)! In fact his labs were so good I was not sure that they were really his. As our PA was writing them out I kept asking her if there was some hidden bad news there, she assured me there was not, but none of us can really believe it. His other liver labs were also great AST 28 (normal), ALT 32 (normal) Alk.Phos. 476 (near normal but higher with growing children) and his kidney numbers are also back in normal range.
The plan for getting out of here is for his IV antibiotics to finish (Sunday) and then observe a day or so after to make sure there are no further signs of infection, hopefully he will be eating at least something and making some progress with his strength and walking. Looks like best case would be Monday or Tuesday, barring any complications. Were not packing yet but I think the end may be in sight!
I did some calculating today and Roger has been in the hospital 125 days of the 265 so far this year, that is 47% of the year. Of those days 79 of them, or about 64%, were spent in the PICU. Yes I know I have way too much time on my hands sitting around here!!!
Love,
Dawn
Wednesday, September 21, 2005 7:10 PM EST
Today Roger had a couple of good naps and seems to be starting to feel a little better. He went to the gift shop this morning and FINALLY got to buy the big Spiderman he has had his eye on. Also he spent about an hour today playing with his friend from Child Life services, they had a lot of fun and he even stopped whining for awhile!
His labs are good and he is down to 16.3 kg today, very near his original 15, so there is not a whole lot of extra fluid yet to go. I think we got the potassium under control, just need to get him eating again. I went and got him a chocolate McDonald’s milkshake today and he drank the whole thing all at once. So I guess he is able to eat, just picky about what he is willing to eat (that sounds like regular Roger).
Looks like we’ve got about four more days of IV antibiotics and then maybe we can get out of here. He is working hard at getting his strength back and trying to walk again, and of course there is always the eating thing. But, we’ve taken him home not walking or eating before, so maybe we can do it again.
Thanks for your prayers and support.
Love,
Dawn
Tuesday, September 20, 2005 1:34 AM EST
We made it to the regular floor yesterday around noon. Yeah, one step closer to HOME. Roger is doing well, but still not quite himself. I think he is dealing with the lasting effects of the sedation he had been on and the new meds he is getting to help wean off the others (they don’t want him to have withdrawal symptoms). This part is always difficult, he really needed the sedation but now it is working against us. He is not in control of himself is spends a lot of time whining, crying and just being grumpy. To top it off he is getting very little sleep, about 6 hours in 24 (not good for either of us).
The good news is most of his labs are normal and stable (both great things). He is still working on getting rid of extra fluid, today he weighed in at 17kg, getting closer to his original 15kg. He is also putting out more fluid in pee and poop than he is taking in (also a great thing). Today we are playing with his potassium level, had been too low now it’s too high (figures), and hopefully putting together a plan to help him get some sleep at night.
Love,
Dawn
Sunday, September 18, 2005 9:06 AM EST
Roger had a quick trip to the operating room on Saturday morning; he had a central line placed in his chest. This was so that we could remove the two lines that were placed in his groin under emergency conditions when all this started 14 days ago. They were getting a bit yucky and there was some concern about infection (we don’t need any more of that!). Things went well and he was able to be extubated right away and did not come back to the PICU on the ventilator (we were concerned that he might). We had hoped he could get a PICC line, a longer kind of IV in his arm, but the nurse felt his veins there were so small she didn’t even want to try it (figures).
He is still making progress peeing off the extra fluid. On Friday they calculated that he was still 5 liters over his normal and he actually weighed 20 kg (5 kg more than his normal 15 kg). On his best day yet he peed off 1.5 liters so it will still take many days to get the remaining 5 liters off. But his kidney numbers are greatly improved, his BUN is down to 60ish from a high of 135 (usually around 8) and his creatinine is down to 0.4 from a high of 2.0 (usually about 0.2).
His liver numbers are the best they have ever been. It seems like the sicker he gets the better his liver values get, makes no sense. His bili has been about 1.5, AST & ALT in the 40-50s (pretty near normal), Alk. Phos. 350ish (near normal) and his prograf level has stabilized in a range they are pleased with (7-9, had been over 30 and actually off the chart).
At rounds on Saturday morning the PICU docs started talking about moving him to the floor soon, but we will likely be in the hospital until the 27th when his antibiotic course finishes. Hopefully with the new line in he will be better able to get out of bed and start on some physical therapy, he is still very weak.
Thanks for your prayers and support.
Love,
Dawn
P. S. Little Heather left the hospital with her family to earn her angel wings at home. She was 3 years old and had been battling mitochondrial disease. It makes me so sad, I pray her family can find some comfort at this difficult time.
Friday, September 16, 2005 10:30 AM EST
Things are continuing to move in a forward direction for Roger. He has peed off much of his extra fluid and the best news is that he got his breathing tube out yesterday morning. Almost before the tube was all the way out he was already asking for water to drink, his voice is soft but improving with use.
He has been cleared to eat as he would like but so far he just wants water and ice chips, we’ll try again today. We are also going to try and get him up into a go cart and move him around some. Yesterday I got to have him sit on my lap for awhile while he napped, it was his first time out of bed on over ten days, and I think he liked it.
The labs values are all holding steady and the kidney numbers are greatly improved. We are starting to switch some of his meds back to oral and he has been doing a great job taking them.
We had a fairly quiet night and are looking forward to a good day.
Love,
Dawn
P. S. Please pray for our PICU neighbor (Heather), I think her family is in the process of saying their last good-byes.
Wednesday, September 14, 2005 8:33 AM EST
Well, the pee is still flowing and Roger is slowly returning to his original Roger shape. He continues to have more fluid going out than going in and is really making some big improvements. There is even talk of maybe trying to get him off the ventilator today. The concern is that if he still has too much fluid in his belly and around his lungs that it may be to difficult for him to fill his lungs all the way, and breathing would be to difficult for him without the help of the pressure from the ventilator.
He had a great day yesterday and a great night last night. He was awake most of yesterday; he got cleaned up well, some line dressings changed and did some stretching in bed. During the day he was very alert and responsive, shaking his head yes and no to our questions. It gives my hope that his brain is still doing well and the he’ll still be Roger when he wakes up. I think we tired him out and he slept all night (with no additional meds to help) and woke up at 5:00 this morning (his regular wake up time).
Right now he is asleep again, I’m glad he is comfortable and getting the rest he needs.
Thanks for your prayers and support, we’re making some good progress.
Love,
Dawn
Monday, September 12, 2005 5:34 PM EST
The pee is flowing, he actually has a little more fluid going out than coming in (this is good)! There is still a long way to go but if he keeps this up I think he’ll be able to do it on his own and avoid having to go on dialysis.
Just to add to the fun, over the weekend we discovered he has a urinary tract infection as well. One of the docs thinks this may have been contributing to his difficulty peeing, on top of the septic infection and high prograf level (if it’s not one thing it’s a dozen others).
So today has been a pretty good day so far. He has been the most awake I’ve seen him yet and is reaching for that breathing tube whenever he can. This too is good and is helping him move some of the extra fluid he trying hard to get rid of. It also helps from a neurological standpoint because we can see him responding to us. We won’t really be sure of the impacts of all this on his brain until he fully wakes up and can show us how he’s doing.
Please keep up the prayers, I think he tuned the corner today but has a long road to go.
Love,
Dawn
Sunday, September 11, 2005 5:31 PM EST
We’re STILL waiting for him to pee! His urine output has increased a little but he is not yet even keeping up with what’s going in, let alone getting rid of the extra he already has. His kidney numbers have continued to climb and by tomorrow it will be time to decide if he’ll go on dialysis to get the fluid off.
He actually had some minor bleeding issues Friday night and Saturday, around two of the IV lines he has. It took some doing to get the bleeding stopped and he actually got a unit of blood on Saturday to top him off again. Ironic that the “clotting kid” had some bleeding. Oh well, never a dull moment with Roger.
Roger is fighting through his sedation and trying to get at his breathing tube, but we don’t want it out just yet, so we’re increasing his meds. I’ll take it as a good sign that he is still fighting hard and look forward to being able to let him wake up.
Thanks for your prayers and support.
Love,
Dawn
P.S. I posted some new photos from Roger’s birthday party.
Friday, September 9, 2005 11:35 AM EST
Today his kidneys are still very unhappy, his BUN and Creatinine (measures of kidney function) continue to rise (80 and 1.4, usually 8 and 0.2, lower is better). He is very, very puffy and full of fluid. They have given diuretics to help him pee but no luck so far. His prograf (immune drug) level is very high (30, should be around 6-8) and this can be very hard on the kidneys. So please pray for pee!
He is a tiny bit more awake today and is making little faces when we move him, but his Versed sedation is still making him happy and his heart rate is low and comfortable. We still won’t know what effect the very low blood sugar will have on his brain until he is fully awake and we can see how he’s doing.
Thanks for checking in and I’ll post any changes as they occur, but consider no news is good news.
Love,
Dawn
Friday, September 9, 2005 11:11 AM EST
Today his kidneys are still very unhappy, his BUN and Creatinine (measures of kidney function) continue to rise (83 and 1.8, usually 8 and 0.2, lower is better). He is very, very puffy and full of fluid. They have given diuretics to help him pee but no luck so far. His prograf (immune drug) level is very high (30, should be around 6-8) and this can be very hard on the kidneys. So please pray for pee!
He is a tiny bit more awake today and is making little faces when we move him, but his Versed sedation is still making him happy and his heart rate is low and comfortable. We still won’t know what effect the very low blood sugar will have on his brain until he is fully awake and we can see how he’s doing.
Thanks for checking in and I’m post any changes as they occur, but consider no news is good news.
Love,
Dawn
Thursday, September 8, 2005 9:30 AM EST
So far, so good. It still looks like he has sepsis, the infection is due to a bacteria called pseudomonas (sp?) and both his liver and kidneys took a hit from the infection. His liver numbers are starting to return to his normal, but his kidneys are still unhappy, mostly because he has a whole lot of extra fluid in his tissues. When Roger was admitted the doctor told us the treatment to get his blood pressure stable would be hard on him and take a few days to undo. They have managed to stabilize his blood pressure and have begun to try and get him to pee off all the extra fluids.
He is resting comfortably with some Versed sedation, but is fighting through it from time to time; this is good because it shows us that he is still fighting hard. He has a long way to go but so far seems to be responding well to treatment.
Thanks for the prayers and support.
Love,
Dawn
Tuesday, September 6, 2005 6:29 PM EST
Well, we’re in the hospital again. This time we had another ambulance ride to Concord, this time in the middle of the night and went to Boston via ground not air (a small improvement over the last trip). He had been feeling a little “off” Sunday afternoon and we though he had a bit of stomach ache and a low fever. Nothing that seemed too bad, gave him some Tylenol and a little rest and put him in bed for the night. He’d had a restless night but was getting some sleep, but when I checked on him at 2am his heart was racing and I was unable to wake him up. We then assumed he was having another seizure, gave the medicine from his neurology doctors and called 911 as we’d been directed to.
So off to Concord Hospital where they did labs, blood cultures, head CT and lumbar puncture for meningitis. They found that his brain looked good (no bleeding) but his blood sugar was very, very low. They stabilized him and he went by ambulance to Boston and back to the PICU.
At this point we are not entirely sure what is going on, but the prevailing theory is that Roger has sepsis, an infection in the blood stream that can affect all of your body’s systems. The main questions are what is the infection, how did he get it and how to get rid of it. He is on antibiotics and tomorrow will go for an abdominal CT scan to check for bowel perforations (he’s had these before right after his transplant). Please pray that they find no perforations because this would be BAD and he would have to have surgery to repair them, not something anyone wants to have to do.
Anyway, tonight his blood pressure is slowly improving and his sedation has him resting comfortably. The one thing we do know is that he is a very sick little boy again and we’re asking for your prayers to help pull him through another rough spot.
I’ll update as I can.
Love,
Dawn
Thursday, August 25, 2005 5:03 PM EST
We are HOME! Daddy got the ball rolling quickly and managed to get us out on Wednesday afternoon.
The CT scan showed a slight improvement in the amount of blood around the brain, meaning it is already reabsorbing and that is good. It may take many months to a year or more for all of it to reabsorb, and during that time he is at risk for another seizure. He is back on the Keppra anti-seizure med we had started to wean off of and we have another med to help stop a seizure while we are waiting for help to arrive.
Roger’s liver labs improved and there was no further discussion of a liver biopsy, his bili is 1.9, his eyes are white and the ultrasound showed good blood flow in the portal vein. He is still on the coumadin (blood thinner) but a smaller dose now, so hopefully it will not be as big of a bleeding risk for him.
We still have a number of follow up appointments but things are looking really good. It was a terrible event but he seems to come out of it better than ever. We are starting to think Roger is part cat and has nine lives, it seems like he has used up at least of few of them already.
Love to All,
Dawn
P.S. We’re still on for the birthday party on Sunday, complete with a fire engine surprise!
*** New photos added - check them out ***
Tuesday, August 23, 2005 2:49 PM EST
Fairly quite today. He is definately feeling better, eating better and has resumed using the potty as he was just prior to the seizure. He'll be done the Dilantin (seizure med) tonight and he's scheduled or a head CT tomorrow to check on his sub-dural hematoma (the blood on his brain that caused the seizure).
That's the good news, the not as good news is that his LFTs (liver numbers) are creeping up (ultrasound today to look at flow in the portal vein) and if they continue up we might be of to biopsy. We'll see.
Love,
Dawn
Monday, August 22, 2005 1:45 PM EST
We made it to the regular floor yesterday afternoon! Yeah, one step closer to home. Roger was very happy to move into his new room this time.
He is continuing to improve, we are weaning one of the seizure meds and he’d be down to only the Keppra that he was on before. It is likely that he will remain on it for at least a year or more, but since this one is easy on his liver that’s OK with everyone. The neurologists say that it may take many months for all the blood to be re-absorbed and during that time he would be at pretty good risk for seizures (that’s why their keeping him on the med).
We had a quiet night and all actually got some sleep last night. I am taking care of giving his meds and doing his vital signs (during the day) and got the nurses to agree not to wake him at night for vitals (we put a monitor on his toe that they can watch from the nurses’ station). So far, this has made a big improvement for Roger. He has fewer people poking at him and gets better rest; it also helps Mommy deal with being here better. We can keep to our home schedules better and I hope it will make Roger more comfortable.
His labs have remained good, today bili is 2 but his liver numbers are up a bit. Have to see later what the docs think. But he is more active than yesterday and getting more stable on his feet each time him gets walking. So far, so good.
Thanks again for all the continued prayers and support. We might just make it out of here by the end of the week (crossing my fingers!)
Love,
Dawn
Saturday, August 20, 2005 4:12 PM EST
Continued good news today, no new events and Roger is getting more like himself everyday. He is still quite tired and may still be having some lingering effects from one of the meds he got to stop the seizures. He has been up out of bed today, first for a stroller ride and then to the toy room. He is walking but needs steady support, like pushing a toy or holding a hand, he is still very wobbly.
The hard part is that now that he is feeling a bit better he is bored and wants to go home. We are trying every distraction we can but he is focused on home. There is no talk yet of getting us out of here, there are a few medicine issues yet to work out. With any luck we’ll be home for next weekends’ birthday party. We’ll see.
So a quiet, uneventful day to report. Yeah!
Love,
Dawn
Friday, August 19, 2005 5:12 PM EST
So far we have good news to report. The CT and MRI have shown no ongoing bleeding or other concerns, and it appears that surgery is not necessary (praise God!).
Roger was taken off the ventilator last night (he almost extubated himself after the sedation wore off!) and is reasonably awake and alert today. He is still a bit sluggish and having a little trouble talking, his voice is still very soft because of the irritation from the breathing tube. All things considered, he is doing well.
His liver is very happy right now though; he has the best liver numbers he has had post-transplant. His bilirubin is under 3 and he has nearly white eyes and pink skin!!! He also had an abdominal ultrasound today that showed blood flow in his portal vein and no fluid in his belly; both of these are GREAT NEWS. If it weren’t for the brain bleeding thing we’d be doing cartwheels right now.
So for now the plan is to watch while he continues to get back to his old self, neurology would like to see him up and fully functioning before we’d be discharged. He’s getting there; he’s taking his meds by mouth and has eaten a few crackers and sips of water. And there is still the issue of his anti-coagulation and how much blood thinner he should have; too much and we risk another brain bleed, too little we risk clotting in his liver. This has always been an issue but it might be time to change things a little.
Thank you all for your prayers and support.
Love,
Dawn
Thursday, August 18, 2005 5:39 PM EST
Not only did Roger have an ambulance ride, he got to have a helicopter ride all the way to Boston!
He has had a brain bleed, we are still uncertain of the exact cause. The blood is in the space between his brain and skull and is putting pressure on his brain and the seizure he had was in response to the bleeding. He has had two CT scans (last night and this morning) and the bleeding does not seem to be increasing.
He had an EEG today that showed not further seizure activity and actually looked pretty good given the bleeding event. Right now he is having an MRI to get a clearer picture of the bleeding and help to determine the next step. If necessary he may go to surgery to relieve the pressure in his skull, but so far he is somewhat responsive and the surgeons are content to watch and wait for now.
He is currently intubated and breathing on a ventilator, but after the MRI they hope to continue to wake him and remove the breathing tube. Neurology wants to see him more awake to see what he can and can't do, and how responsive he is.
The goods news so far is that things don't seem to be getting worse and the bleeding is outside his brain and less likely to have a long term damaging effect.
We'll keep his website updated as we can, and ask for your continued prayers.
Love,
Dawn
Wednesday, August 17, 2005 6:54 PM CDT
Hi Everyone,
We had a first tonight. Roger is on his way to the hospital in an ambulance because of a seizure. We received the go ahead to back off his anti-seizure meds a few weeks ago and apparently it wasn't the right thing to do.
Please keep the prayers coming.
Well, off to the hospital.....
Love,
Steve
Thursday, August 11, 2005 6:51 PM EST
Over the last week we have been dealing with the real down side of Roger being on the Coumadin (blood thinner), frequent blood draws and dosing irregularities. At his regular labs last Thursday the INR (used to check the coumadin) was very high. We all thought it was probably a lab error, but we had to go back Friday morning to draw another blood test. That one was a little up from his target value, but not a whole lot, but even still the docs changed this dose and had us get labs again on Monday.
Of course Monday’s value was too low so we increased the dose and had to go back yet again on Thursday. Today it is still low and we increased his dose back to where it was last Thursday (ugh!), but at least they don’t need us to go for labs until next Thursday. What fun!!! He tolerated it all like an amazing trooper and has a mighty big stack of stickers from all those blood draws!
The good news about the labs is that his bili has come back down to 4, after jumping up to 8 during his brief virus event. His other liver numbers are still way up but pretty stable for him.
Otherwise he is continuing to improve with his walking, and enjoying just being a kid. We’ve been to the pool and the Children’s Place, it’s a kind of short term day care and play center we’ve been going to since he was one. He has a lot of fun and there are a whole bunch of kinds to play with. Time to practice sharing if he’s going to be ready for school next month!
Love,
Dawn
Wednesday, August 3, 2005 6:37 AM EST
Roger has been battling a bit of a virus since last Friday, but is mostly better now. He had a low fever (100-101), was very, very sleepy and just not himself. I called his transplant coordinator Friday around lunchtime, she said she was not surprised he was that way, his bili had gone up to 8 and his labs from the previous day looked like a viral thing might be going on. She said to give him some Tylenol to make him comfortable and if it got worse to call. Based on his labs she didn’t think it was a liver thing, just a virus/cold thing. About 2 hours after the Tylenol he was back to himself and just had a bit of a sneeze and stuffy nose that held on till yesterday. He is still kind of yellow, he has labs again tomorrow and we’ll see where bili is. I know it is common for it to rise with a virus, I just don’t know how ling it may take to come down again.
Yesterday we had yet another adventure to Boston, this time to Children’s Hospital (across town from our regular hospital) to see a neurologist. This was a follow up for the anti-seizure medicine he is on. Back in February, just after his transplants he was found to have lesions on his brain in the visual cortex and had seizures coming from those areas of damage. They got those under control and he was put on Keppra (recommended six months) to prevent them from recurring. He also had a loss in his vision as a result of the lesions and seizures. Well the vision loss is gone (was better with in a week of coming home) and six months is up, time to stop the Keppra. They had also recommended an EEG, but I really didn’t want him to have one unless it was really necessary, not just because. So we had to see the neurologist and have him examined. The doc we saw was very nice and surprised to see Roger doing so well based on what she’d read in his records (I guess she's not used to a "miracle" walking into her office). After talking with me and interacting with him she felt an EEG was unnecessary and it would be fine to wean him off the Keppra. The plan she gave me will have him off it by the end of the month. Yeah, one less medicine!!!
Since the tubes came out Roger has been trying to use the potty again. He is doing very well at it and is back to were he started before his transplants. He’ll use underwear during the day and a diaper at night. The only tough part still is that he does not like to use a potty other than ours at home, so when we travel or do errands it is difficult. He can hold it for our local errands trips, but to Boston yesterday he wore pull-ups. Anyway, it is progress and he is working on it. He is also working hard at trying to dress and undress himself, but his body shape makes that extra challenging. He is determined though and keeps at it!
So that’s what new with us.
Love,
Dawn
Thursday, July 28, 2005 2:07 PM EST
More big doings for Roger this week, we finally made it to the pool at the YMCA on Tuesday. It was GREAT! He got right back into it and really did a good job, he was even putting his mouth in the water and blowing bubbles (something he really didn’t like before). We are going to try and make it at least twice a week, it’s good exercise for both of us.
We had a good trip to Boston this morning for our clinic visit and they seemed pleased with how things are going. So pleased, that unless something comes up with today’s labs, we won’t go back for a month! We’ll still do weekly labs at home for now due to the monitoring of his blood thinner, but that’s only a trip to Bedford not Boston! Also, Steve’s CT results from last week show that his liver has fully regenerated and he is doing well.
I don’t have any lab results for today, but last weeks labs showed that his bilirubin was down to 3.4 (should be under 1, had been 19 just 8 weeks ago, all time low is 1.9 and hasn’t been under 5 since Nov., 2003). We are really encouraged that things may finally be working out for Roger. BUT, please keep on praying, it is powerful!!!
Love,
Dawn
Sunday, July 24, 2005 9:29 AM EST
Roger had a couple of firsts this week; he went to the fireworks and rode a ride at the fair! He did well at both, I figured the noise of the fireworks would be too scary for him, but he didn’t seem to mind it too much. He actually rode the ride twice, the first time he and Daddy ran off to try it while we were waiting for the fireworks to start, so Mommy actually missed the official first ride. But we went back the next day and he did it again. It was VERY difficult to get a good photo of him on the ride but I did OK, see the updated photos section for more.
On Wednesday the 20th Roger did get his tubes out, things went very well and we were in and out quickly. I think we actually spent more time waiting for Steve to finish his CT scan and playing in the toy room than it took for him to get them out and recover from the anesthesia. So far so good, he loves being able to run around the house as a “naked boy” in just his diaper. He had liked doing this before but with his tubes I always worried that he’d pull them. I couldn’t tape them to him because his skin is so sensitive, I always pinned them to his clothes, so I always made him wear clothes. Anyway, he’s much happier now. He’s already had a really good bath (first good one in 6 months) and we’re planning to hit the pool this week. I posted a “naked boy” photo but be warned it is a bit hard on the eyes, but it is the reality of what his body looks like right now. The docs hope that as he grows his belly will look less distended.
The best news is that while he was under getting his tubes out he had an ultrasound (per Dr. Mommy’s request) that showed the blood flow in his portal vein has actually improved some. This is VERY good news and his surgeon was almost giddy as he told me about it. When I first asked if we should do an ultrasound he looked at me like “Why?”, but agreed to it anyway. After, both he and the ultrasound tech thought it was a good idea (maybe next time I suggest something he won’t look at me like I have two heads-even the parents can have a good idea once in a while!!!).
Anyway, that’s what’s new in Roger’s World right now. We have our clinic visit in Boston this Thursday and I’ll post with an update then.
Love,
Dawn
Saturday, July 16, 2005 6:27 AM EST
Roger has had another busy week getting back to being a kid. We’ve had two mornings of play time at the Children’s Place, a short term day care type facility that we used to frequent before Roger started preschool. The first day was a little tough for him, he’s just not used to being around so many kids, but by day two he was jumping right in even better than before. We’re planning to keep going for the rest of the summer until school starts, after he gets his tubes out he might even get to stay there by himself (he used to just fine) and give Mom a short break.
He is moving into a new phase of independence. Last week he started getting out of bed by himself in the morning. Ever since he got into his “big boy bed” he has been waking and waiting for one of us to get him up-even though he had the ability to get out-he wouldn’t. But now he climbs down and comes to wake us up. OK, it was really cute at first but now he is just getting up really early. Oh well, I’m still proud that he is doing for himself! He has also decided that he doesn’t need to nap anymore either. So no nap break, coupled with the boundless energy he has found, means that we are going non-stop ALL DAY LONG! I’m thrilled, but having a hard time keeping up. I posted a few new photos from playing dress-up and trains the other day.
The best news of all is that this Wednesday the 20th, HE IS GETTING HIS TUBES OUT!!!!!!! I can’t wait, they were a blessing for a long time but now they are starting to hold him back. He wants to try the potty again, but the feeding tube is really getting in the way. He had been using the potty all day (still in diaper at night) before his transplant and was very proud of being a big boy. We can also get back to swimming and get his muscles the exercise they need, and have a whole lot of fun as well.
This weeks clinic visit went well, his bili has leveled off at 5.3 (5.1 last week) but still better than the 18-20 it had been. The rest of his labs are stable and he really wowed the doc and coordinator with his great walking! While we were at the hospital we visited our nurse friends on the 7th floor (regular inpatient) and they were amazed at how he looked. We also got to see many, many of our friends in the PICU. They too were amazed at how he looked, one of the docs said “he’s the wrong color”, last he’d seen Roger he was pretty much orange! It was great for them to see him doing well, they all put in so much hard work to get him through all this and it’s nice for them to see a good outcome.
Love to All,
Dawn
Thursday, July 7, 2005 7:55 PM EST
Well, I don’t want to jinx us but things just keep getting better around here.
Roger is continuing to improve his walking and general physical abilities every single day. Today he was a very brave boy and had his weekly labs done the old fashioned way, a needle stick in the arm. He did a great job, just a little bit of crying and almost no squirming! The best news is that the transplant coordinator called this afternoon with the results and his bilirubin is down to 5.1!!! Just one month ago it was over 18 (should be under 1) and has not been this low since last fall before his transplants. This is a good sign that his liver is happy and seemingly dealing (at least so far) with the portal vein blockage and possibly narrow bile ducts.
So were just going to keep doing what we’re doing and see where things are at next week when we go for our clinic visit in Boston.
Love to all,
Dawn
Friday, July 1, 2005 2:18 PM EST
We had a GREAT long weekend as a family while Steve was off from work for a few days (see new pictures). I’ve already told you about the bowling on Saturday, and that night Memere and Pepere came for dinner. We had time to visit and play outside with the badminton and the wading pool. Roger had a lot of fun squirting water at Memere and Grammy. On Sunday we went to the ocean and the Seacoast Science Center at Odiorne Point. What a great way to beat the heat, it was much cooler right along the water. Roger got to sit on the rocks and dip his feet in ocean (yes, it was COLD but refreshing). The center has an indoor tide pool of critters for kids to see and hold, Roger even gently pet the starfish! There were other tanks and critters to see and a pretend boat to drive. It was a lot of fun.
On Tuesday Roger got a very big surprise from his friends at the movie store in town. He and Daddy are regulars up there on Tuesday nights, and the staff have really taken a liking to Roger and let him help get his own rentals off the shelf behind the counter. This week they had a HUGE box of Bob the Builder toys and movies for him from the distributor from HIT Entertainment. He is VERY into Bob right now. It was unbelievable, 2 dozen movies, toy machines, clothes, legos, a playhut tent shaped like one of the characters-EXTREMELY GENEROUS. He was so excited that he had a hard time getting to sleep that night!
Today marked another milestone in Roger’s recovery, he was discharged from physical therapy because “he doesn’t need me anymore” according to his therapist. She feels he is demonstrating all the skills necessary and just needs to keep on practicing to fine tune everything. Last week we’d worked on chasing bears up the stairs and this week we chased froggies down the stairs, his last big hurdle to cross. So it’s up to us from now on and that’s OK with me, one less “to do” on our weekly schedule.
We are starting to talk about getting the tubes out. Roger needs to try a couple of blood draws the old fashioned way (a needle stick in the arm) to see if he and his veins are up to it. If things go well then we can get the central line and the feeding tube out. YEAH!! A tube free kiddo could then get swimming again to help build up his muscles, we were regulars at the YMCA before transplant. It would be another giant step toward “normal”!
Love,
Dawn
Saturday, June 25, 2005 2:35 PM EST
Just wanted to share another big step for Roger. Before his transplant he and Dad (and often Pepere) would go bowling on Saturday mornings. This was always a very fun adventure for Roger. Since his transplant he has asked to go but we told him he would have to be walking to go bowling. Well, today he finally got to go bowling again! He had a blast. He got to try a ramp that was designed to be used by someone in a wheelchair, but it really made things easier for him as well (it’s the silver thing in the photos). He could hold on and push his ball down the ramp, balancing is still hard for him and this really helped him have fun and not get tired out too fast.
Also, yesterday we have our weekly physical therapy visit and it too went very well. We had a bear hunt throughout the house to practice walking and even chased those bears up the stairs! He crawled up an entire flight of stairs and was very proud of himself (the therapist was pretty impressed as well!).
So we’ve had another few great days and look forward to a long weekend playing with Daddy while he is on vacation for a few days.
Love,
Dawn
Thursday, June 23, 2005 7:46 PM EST
Well, it turns out that last week’s labs were just a blip! The labs we had today (at home, NOT in Boston!) show that bili is now down to 8.2 and is continuing to steadily improve. YEAH! The rest of his numbers look pretty good as well, the only slight down side was that his coumadin (blood thinner) dose went up. It always makes me nervous when it goes up because it can over shoot the goal pretty easily and he is at greater risk for bleeding, but such is life.
He is really getting around well walking and is routinely letting go of things, standing and walking all by himself. Even his eating has been going OK and he had a peanut butter and jelly sandwich for lunch this week (yes, I know, not a giant feat for most kids!).
So we’ll keep doing what were doing and see the folks in Boston next week.
Thanks for all your prayers and well wishes in our guest book, they really help keep us going!
Love,
Dawn
Monday, June 20, 2005 9:18 PM EST
Wanted to share another big milestone for Roger during his recovery, he has decided to start walking on his own-unassisted! Over the last couple of days he has found a whole new motivation to get moving and is really taking off. Today he pushed his lawn mower around outside and even hit a wiffle ball off the tee. Pretty big things for our little guy!
He continues to eat well and drive Mom and Dad crazy with three year old boy issues (ALWAYS wanting to be in charge!). He is still a bit on the yellow side, last week's bili was 14, but doing well in spite of it. We have more labs due this Thursday and we’ll see if bili is trending back up or if this was just a blip, we’ll keep you posted.
Love to all,
Dawn
P.S. I updated with some new photos, check them out.
Yes, Roger ALWAYS has a Spider-man shirt on!
Friday, June 17, 2005 5:04 AM CDT
Hello Everyone,
We know it's been a while since the last post. That's because things have been going very well. Roger had a checkup yesterday that went very well. His labs have stabilized enough that we will going to once a week lab draws and every other week checkups.
All very good news!
Again, thank you for all your prayers.
Love,
Steve
Thursday, June 9, 2005 3:08 PM EST
We had our weekly transplant clinic visit today, and for the first time in a very long time got some encouraging news. Roger’s bilirubin is trending down, Monday it was 13 and today it was 11 (had been up to 20 during our last admission). His hematocrit and WBC are also stable, these got out of whack due to the GI bleed he just had and some meds that he was on. The surgeon even suggested every other week clinic visits, but his Prograf level is not stable enough this week (maybe after next week). I’m taking this to mean that he is fairly comfortable with how things are progressing. He is a super cautious person and today there was a problem and the INR level did not get run (this checks on how the blood thinner is going) and he said don’t worry, just have it checked with the regular labs on Monday! Very surprising, I would have expected them to ask VNA to repeat it today!
Roger is continuing to dazzle us with his walking (he walked down the hall to his check up today in front of a couple of the docs, they were surprised). Yesterday we went to the new playground in our town and he was climbing up some of the steps and rode on the tetter-totter with a little help from Mommy and Grammy. Very impressive stuff. We even got to see some of our friends from play group, a big bonus.
Last night at dinner we had a first of its kind experience with Roger, we actually had to tell him to stop eating because he’d had too much! He ate a whole grilled cheese sandwich, a handful of potato chips, 5 strips of bacon and was asking for more. His belly was so big we thought it might burst. Unbelievable, we’ve never asked him to stop, always had to try to coax more.
Maybe things are changing for him, he deserves a break from all this. Thanks for your prayers and support.
Love,
Dawn
Tuesday, June 7, 2005 6:55 PM EST
Today was a very big day for Roger, he has taken his first unassisted steps since January 27 (that’s over 4 months for anyone keeping track). Yeah!!!
We had a fairly busy day as well. First there was story time at the library this morning and helping with the felt board, playing and walking all around the house with his shopping cart, a walk around the block with grammy in his stroller and a trip to the move store with daddy after dinner. In addition he ate a goldfish cracker, applesauce he fed himself with a spoon and a whole grilled cheese sandwich for dinner. Whew!!!
I think this being out of the hospital stuff really agrees with him.
Love,
Dawn
Friday, June 3, 2005 8:29 PM EST
We are home, and very happy about that. Roger got to sleep in his own comfortable bed last night and go outside a get some real fresh air and sunshine today. He is readjusting to life on the outside very well and is continuing to show interest in eating! We have stopped the tube feeds for now and are letting him do it all by himself (with a multivitamin to help “round” out his nutrition).
The plan is to let him be home for a few weeks (except for weekly clinic visits) and see what his lab values do. If things do not improve then we will likely go back in for a PTC test to image the bile ducts and hopefully get a better idea of what is going on. Time will tell.
Thank you all for your support. Please continue to pray for good blood flow and bile drainage, maybe we can avoid the PTC test.
Love to all,
Dawn
Thursday, June 2, 2005 3:42 PM CDT
Hello Everyone,
Roger is on his way home as I write this entry. More details to follow later.
All the best,
Steve
Tuesday, May 31, 2005 5:39 PM EST
We’ve returned to our room on the floor, great to be out of ICU but ready to get going home. Roger is feeling well today, he has eaten a lot and walked all around the play room pushing his shopping cart. At the moment he is having a little nap after all the walking.
There are some details still to work out and some med levels to watch, but with any luck we may be out of here in a couple of days. His bili is still 19, but his hematocrit is good and his white blood cell count is improving. They’ve changed a few of his meds in response to the bleeding event, and we are looking at additional tests to do in the next few weeks. We still don’t know the cause of the bleeding and have some questions about the bile ducts, but at least they are letting us go home for a little while before we’re back for another round of fun!
I put some new pictures in the view photos section, check them out.
Love,
Dawn
Monday, May 30, 2005 11:13 AM EST
The medicines seem to be doing the trick. Roger has not passed a fully bloody stool since Friday and has not received a blood transfusion since Saturday, these are both good things. The plan for Sunday was to not change anything and to have a stable day. With that accomplished the plan for Monday is to stop one of the meds, decrease the other and try some low volume tube feeds. Roger has been doing very well with his oral intake and has nearly eaten his weight in bacon the last two days. He is taking some other foods as well but is really bingeing on the bacon (the docs and nurses are finding that funny).
He has been a little more mobile the last couple days, our nurse showed us how the little pumps fit in the stroller basket, and we’ve even been outside a couple times to get some sunshine and fresh air! Barring any new complications we may even get to go home in a few days, but we’ll see. The last time we thought we were going home we got moved to ICU!
Love,
Dawn
Saturday, May 28, 2005 9:45 AM EST
Things seem to have slowed down some. Roger is maintaining a reasonable hematocrit level and this would indicate that whatever is bleeding is slowing or stopping. The CMV test came back negative, so the source of the bleeding remains unexplained (not great!).
The good news is that he has been cleared to eat what he wants by mouth and has already devoured some mac & cheese last night and bacon for breakfast this morning. The docs will be watching closely for the next 24 hours to see if he continues to pass bloody bowel movements (these are already becoming less frequent and smaller in volume). For the moment they have opted not to do an endoscope unless the bleeding worsens, but recommend doing one in the near future to see if there is anything in his GI tract that needs treatment. His liver numbers continue to be out of normal range and his bili is 18 today, these have become secondary to the bleeding event but still not improving (bummer).
Roger is in pretty good spirits and very happy that he can eat again, he’s had nothing since Thursday around 9am. I guess that even a kid who doesn’t like to eat gets hungry if you starve him long enough!
Love,
Dawn
Friday, May 27, 2005 5:59 AM EST
Change of plans, we were going home BUT….. Roger is having some bleeding complications and we are still in the process of figuring out exactly what is going on. He has passed a few diapers full of blood, the docs are not sure if this is old clotted blood that is just now coming out or it he has a new source of bleeding somewhere in his GI tract. We’ve been moved from our regular room back to the PICU where his is receiving IV meds to try to help the bleeding to stop and if these aren’t enough the next step would be an endoscope. This is a long, flexible “camera” that could look in his throat and stomach for a possible source of bleeding (i.e. enlarged blood vessel or ulcer). If something was found they could intervene at the site of the bleeding to stop it.
For the moment the plan is to give the meds and watch him for the night. Tomorrow they will also send a blood test to see if he might have a viral infection called CVM. This is an infection that many transplant patients experience and is usually treated successfully with the right meds.
Love,
Dawn
Wednesday, May 25, 2005 6:56 PM EST
Good news, we are scheduled to go home tomorrow!!! It has been a longer than expected stay but we did accomplish a lot. We found out that the liver is still healthy and actually doing better, switched his primary immune drug, decreased his secondary one, figured out about the portal vein blockage as the reason his bilirubin continues to be high and tweaked his tube feeds to help with better nutrition and less diarrhea.
Yesterday’s J-tube stitch replacement went well, he didn’t go until late in the day but did very well with not being able to eat! He got a couple doses of albumin overnight and today, and a unit of blood to “top him off”.
We will continue to watch his lab values over the next few weeks to determine the next step. If the labs improve (bili goes down) then we’ll keep watching. If things don’t improve then we will probably do a PTC test to image the bile ducts. This may allow us to see if there are any blockages down low in the bile duct that might respond to intervention or if it’s the small bile ducts in the liver that are narrowing or blocked. If is the small ducts there is nothing they can do to help except to hope that his body can compensate on its own. As far as the portal vein blockage, it’s up to his body to develop alternate veins (collaterals) to allow the blood to flow, time will tell.
Please pray for bile flow and improved blood flow, for now it’s Roger’s turn to see what his body can do.
Love to all,
Dawn
Wednesday, May 25, 2005 4:55 PM CDT
Hi Everyone,
Not a long entry for today. Just want to let everyone know that Roger is coming home tomorrow (barring something unexpected). The plan is to follow his billirubin level for a couple weeks and if it doesn't drop, more testing will be done. (Dawn is much better with the details, so I'll let her add that later. :)
We look forward to having Roger home again.
Until next time.
Love to all,
Steve
Monday, May 23, 2005 6:42 PM EST
Mixed news to report for today, bili is still 13.5 (should be under 1), INR 4.2 (should be 2) and his Prograf (new immune drug) is 11.5 and they’d like it between 7 and 10. He’s been having some issues with his tube feedings and has been having bad gas and diarrhea. Hopefully we can tweak a few things and have him feeling a bit better, I think sometimes it just gets like this when we’ve been here too long! I noticed today that the stitch holding in his feeding tube has popped out, so tomorrow it’s off to the OR for a repair job. The great news is that he will be an add-on to the schedule and will be NPO (not able to eat or drink anything) from midnight on, yeah!
On rounds today the surgeons indicated that they would like to watch and wait for 2-3 weeks before continuing with any other tests or possible interventions. They would like to see what his body is going to do on its own. We’ll keep you posted on the progress and hopefully get out of here in a few more days!
Love to all,
Dawn
Sunday, May 22, 2005 11:53 AM EST
I know that not everyone had much in the way of details from Roger first transplant experience, and given that we’ll probably be doing it again, I though I’d try to fill in the gaps. I’ve copied most of the Classkids discussion board entries I made and put them together as a kind of journal history. I know this is long and not everyone may want the level if detail that is here, but it’s here if you’re interested. It may be a little disjointed sorry.
Transplant Journal History
01-19-05
I just wanted to share Roger’s latest check up information. We saw our transplant team (still at NEMC-Floating for the moment) last week, things are fairly stable but not really great, his peld is still 11. I don’t have all the labs yet, but his bili is up to 7.1 (starting to itch some), Alk. Phos. 655, albumin 2.6 and INR 1.1. He has pretty much stopped growing and at over 3 yrs old is only 34.75” but weighs about 30lbs due to fluid and his enlarged liver and spleen (both down to his groin). He has always been a picky eater but really doesn’t seem interested in food anymore, thankfully he’ll take some Pediasure and that seems to be able to keep him going.
Transplant wants to see us monthly and has begun the process of evaluating Roger’s dad to be a living donor. We’re scared but excited that there might be some light at the end of the tunnel and that Roger could get his liver before he gets much worse (I live in fear of a big bleed). They want to take about 2-3 months for the evaluation and see if we get a deceased donor before then, if Steve’s a match we’ll talk about going that way in a few months, provided nothing changes. For now, we wait.
On a positive note, Roger has mostly good days, is able to attend preschool 4 days a week (he LOVES school) and challenges his mom and dad daily with many annoying and typical three year old things.
01-27-05
We got our call. We are leaving for Boston as soon as we finish packing and surgery is scheduled for 7am. Asking for prayers!!!
Thanks for the prayers. Roger went to the OR about 5:00, his gift is from a 7 year old child and the surgeons say it looks very good for him.
I think I'm still a little numb about everything, kind of doesn't feel real yet.
Thanks again for the prayers, especially for our donor and their family
He's in the PICU, surgery lasted about 6 hours and went GREAT! They were able to "squeeze" the whole organ in because his belly was so large from his old liver and enlarged spleen. He will likely be on the vent for a few days because it will be too hard for his lungs to work with such a good, big liver in there. He looked a lot better than I'd expected and so far things are going well.
Thank you all for your prayers and good wishes, this truly is a prayer answered. GOD IS GOOD!!!
01-29-05
Where to begin. An ultrasound yesterday showed blood flow problems in the new liver and Roger had to go back to the OR. The main blood vessels were both clotted, the surgeon was able to open them but the liver is not doing well. They were not able to close his abdomen and he is getting lots of blood products and supportive care in the PICU.
Long story shorter, the liver is failing and he is currently listed Status 1. His Dad is hopefully going to be admitted today, and if he is a match and Roger can tolerate surgery, we'll try again.
Please keep up the prayers, his surgeon is really concerned that he might not be able to tolerate another surgery. Roger is a stubborn little man and we're encouraging him to keep fighting, but this is in God's hands now!!!
01-30-05
Keep praying, it's working. He went back to the OR yesterday and they've actually removed his transplanted liver and are maintaining him on dialysis and blood products. Steve has an arteriogram scheduled for today, if it looks good and Roger can hang on they will operate first thing Monday. His body is holding on so far but we'll never know how all this might be affecting his brain.
We are all extremely surprised that he made it back from the OR yesterday. I just pray he has enough fight left to hold on till Monday.
I am so very thankful, and grateful to you all for your support right now. Words cannot describe how it is helping me to be able to share with people who really understand.
GOOD NEWS!!! Steve is a match, Roger is holding stable and surgery is scheduled for first thing in the morning. The power of prayer has brought us this far and I'm encouraged with pull us through the other side. Hope was hard to find yesterday, but here in abundance today. Bless you all for your prayers!!!
1-31-05
Steve went to the OR at 7am and Roger is holding strong and is due to go at 9am. Prayer has brought us through the weekend and will bring us through today.
Thank you all and God bless you.
Steve is out of surgery and doing well, I haven't seen him yet but am getting good reports. Roger is holding "rock solid" as Dr. Freeman says and they should be finishing up with him in a few hours. I'm trying not to let myself get too excited, the next 24 hrs are still really critical, but there's hope.
Again, I thank you all for you prayers, the power of those prayers is AMAZING
Roger is now done and did GREAT! The next 24 hours or so are real important, but things are looking good at the moment. The major concern is clotting, the new piece of liver did clot some in the OR and they fixed, but they're guarding against it happening again. They are actually going to have hematology look into whether Roger might have some kind of hyper-clotting situation, not something you'd expect with liver disease.
Bless you all for your support, praying for all our kiddos (especially Haley) and their families tonight
02-01-05
Both the boys are doing well this morning. Steve is still groggy, but managing his pain OK. He's been cleared to be discharged to the floor today when a bed is available. Roger had an uneventful night. His new liver is producing clotting factors and he is producing his own urine even while on the dialysis machine, both good things. There is still concern about a possible hyper-clotting condition, even on heparin two of the JP drains clotted last night (fixed now and no problem).
The goal today is to reduce his sedation a little bit and see if they can get him to move slightly or open his eyes, so that we know he's still in there. Then they'd sedate him again and probably keep him like that for many days to help support him and let his body recover with the least stress possible. There are some concerns about how his brain may have been affected by all this. I don't think he'll be asking for a pillow like Miss Haley, but it would be nice to catch a glimpse of those blue eyes.
Thanks again for your support.
02-02-05
Yes, no news is good news.
I've not seen those blue eyes yet, but Steve got to go up and see Roger for the first time this morning. It was GREAT! Obviously Daddy is doing well and Roger continues to amaze us with his strength. The dialysis support has been removed, he's making urine well, he responded appropriately when his dressing was changed and is taking a few breaths over the vent.
Thanks for the prayers, they're working!!!
02-04-05
Steve had a rough night with pain last night but is feeling much better today. They are talking about sending him home on Monday, but do not want to see him in the hospital until Thursday.
Roger is still holding strong (thank you God) and has been weaning off the sedation. I got him to squeeze my finger and I've seen his eyes open a little. He is going back to the OR today to fully close his abdomen and put in a feeding tube so that he can get better nutrition, he's been on TPN. They are talking about weaning him off the vent after surgery either today or tomorrow. He got an MRI yesterday mostly for his liver but they also imaged his brain while he was there. One of the TX surgeons said he thought he sees an area of concern near the base of his brain but will not say for sure until the radiologists have read the films. It might not turn out to be anything but he's not sure. It may be in a speech area that may have been effected by Roger's FK level, it got way to high for awhile (12-14 I think, this part is still kind of new for me!).
Please continue the prayers and thanks again for all the support.
02-04-05
I am here yet again to ask for your prayers. Roger is having sub-clinical seizures in his brain. He has a lesion that showed up on yesterday's MRI in the vision area of his brain and tonight is having seizures originating from that area. The meds have seemed to control the seizures for the moment and they are watching him tonight. We will regroup in the morning and see what is going on.
They are unsure of what caused the lesions in the first place, but the two prevailing theories are high FK (it was actually 20, not 12) or low glucose (I don't have numbers on that one). I'm not sure we'll ever know for sure.
I'm scared. He is a tough fighter, but I wish the fights would stop coming.
Thank you for your prayers.
02-06-05
Steve was discharged today and sent home for a few days to take care of himself. I hope he can finally get some sleep, it's been hard for him in the hospital.
Roger is still fighting. He had a biopsy today to check for rejection, and they are culturing everything that comes out of him looking for infection. He has been running fevers and his bili is back up to 16. The docs say they kind of expect these types of issues. He is still on the anti-seizure medication and tomorrow the neurologists are planning another EEG and possible a CT scan. They've been seeing him daily but are having a hard time evaluating him because of the seizure and pain meds. They are not making any judgments until he wakes up, but that is still probably days away.
I'm at peace with the liver things and confident the docs will get things under control. I'm having a hard time with the neuro things, there is so much uncertainty and speculation and no real answers until he's awake. I'm finding it harder to find the patience needed to wait for him and I'm sad each time I see him and he's not awake.
Oh well, pitty party over. Thanks for listening. Thanks for praying. I've been keeping all our CLASS kids in my prayers even though I've not been posting for all of them. God bless.
02-09-05
Hi Colleen,
Thanks for asking about Roger, I just got to the computer to post an update, I was waiting for a little good news to report.
Neuro and TX both think the MRI lesions and seizures have been caused by the FK level being too high very close to his TX surgery, calling it reversible posterior leukoencephalepathy (sp?). It is seen more frequently in their adult liver tx patients, but seems to be what is going on with Roger. The good news is that switching off FK and giving things time to adjust usually reverses the condition with no long term effects. Praise God, this part has been very emotionally tough. To think that he has fought through so much physically to have mental complications was devastating.
On the liver side of things, he had fevers and high WBC that both seem to be improving, but his bili is still up to 19. His biopsy the other day showed mild rejection and they might increase is immune drugs for that. He is on quite the medicine cocktail and it is always in a state of adjustment.
Steve has been home since Monday and is doing better everyday. He is still having overall body ache and sleep is hard to find sometimes. I think yesterday and today's good news regarding Roger is helping both Steve and I to feel better and sleep easier.
Again, thank you all for your prayers and support, there are not words that can express my comfort and gratitude. God bless you all and I'm keeping all our CLASS kids in my prayers.
2-10-05
Roger is off the vent and doing well. His liver numbers are continuing to improve, he's had no fevers and they will recheck an EEG tomorrow to look for seizure activity. Today is a very good day, thank God!
He is still fairly "out of it" due to the Phenobarbital he's getting for the seizures, but he should start weaning off that later today and into tomorrow. They will use Dilantin(sp?) and Kepra(sp?) for seizure control for now. Even in his drugged up state his personality is coming through. The doctor asked him this morning to move his leg, but Roger just shook his head "no". I have a lot of hope that the Roger I know is still in there!
02-14-05
Things had been going well, he'd had most of his "tubes" removed, but Sunday his liver numbers shot up and his belly was very distended. They took him back to the OR and found a clot in the portal vein(not again!!!), perforations in his intestine and fluid/infection in his abdomen. The liver still looked OK, not as pink as they would like, and the next 48 hours should tell us whether or not it can bounce back from this episode.
Please pray for him yet again.
02-15-05
Roger is stable so far today and even making very small baby steps in a positive direction. The ultrasound yesterday showed good blood flow and his bili, WBC and LFTs came down some. His biopsy from surgery showed moderate rejection and they are aggressively treating for that as well as for infection. No real news on the seizure issue, he is on meds for them but we've done no further testing due to the other complications that took him back to the OR. One thing at a time!
He is still heavily sedated, but breathing over the vent a little and all things considered "looks pretty good".
Thanks again for your prayers, they are truly the only thing we "need" right now. Steve and I are both here for awhile this week, he is feeling good and it is nice to be together again.
02-16-05
Today Roger is holding his own. Today's ultrasound showed good blood flow to the liver and his bili and LFTs are trending down. There is even so talk of weaning the sedation and trying to extubate in the next couple of days.
I think the surgeons are pleasantly surprised and feel that if Roger could just get a couple of weeks with no major events he just might get through this.
Although, I feel like we've been here before and I don't want to get my hopes too high yet, I'm encouraged and still amazed at the fight in this little boy of ours.
02-20-05
Hi Mika,
I hope your feisty fighter is feeling good and doing well, she sounds like a pretty tough nut herself :).
I told myself that I wasn't going to post until I had good news or someone asked, so here goes.
Roger is still fighting the fight. He had to return to the OR on Friday 2/18 and they found more perforations in his small intestine. They spent a long time fixing those and reinforcing some areas that looked weak. While they were in there they checked the blood flow to the liver(looked good), did a liver biopsy and flushed out his abdomen again. The surgeon said the liver looked "pretty good", some areas were nice and pink, while others were dark and hard.
They are not re-listing him at this point, but we are keeping a very close eye on things. All things considered (2 transplants and 7 surgeries in 23 days) he is doing well. So far his heart, lungs and kidneys are holding on, and no evidence of ongoing seizures in his brain. We are living each day from lab result to lab result, ultrasound to ultrasound, and praying that he makes some forward progress.
Thank you again for all your prayers and support ( LOVED our care package - Thanks!!!)
02-26-05
Hi Guys,
Thanks for asking, sorry I've not been posting much (no website either, I'm not real computer savvy!). Things are going well, but I'm trying not to let myself get too excited on the good days, because it makes the bad days hurt more :(
The last couple of days have been the best yet (I'm knocking wood while typing this though!).
On Wednesday he had his eighth, and we're praying final surgery, to fully close his abdomen. The surgery went well and he didn't seem to take as large a step backward as he has in the past. He was extubated Thursday and was comfortable most of Friday, but started with fevers Friday evening and they continue today. His labs are OK, his LFTs are approaching normal and bili is hovering around 7.5-8.
We're still waiting for his bowels to start moving better and slowly re-starting his tube feeds, although he did have a small stool this morning and it was BROWN (not his "normal" light yellow yucky one) so maybe his liver (well Daddy's kind of) is doing it's thing.
He is actually the most alert I've seen him yet and is visually tracking objects well. He is on a number of anti-seizure meds and has had at least one EEG ( I am losing track of how many) that showed no seizure activity, so they feel they are probably under control.
We are in watch and wait mode to see about the fevers and feeds, and still taking things one day at a time. I'm very thankful for all your prayers and support, sharing with my CLASS family always makes me feel better. Thanks!
02-28-05
Roger had his NG and Foley taken out today, was able to sit in one of the "go-carts" for a few minutes in his room, and took one dose of Actigall by mouth with a few ice chips as a chaser!
Today is one of his good days!
03-05-05
He's doing. We are at a kind of frustrating point in his recovery, things are moving very, very slowly.
Overall he is doing well, but his AST & ALT are creeping back up into the 200's and his bili is bouncing around between 7-9. He had a biopsy Friday to check on rejection, an ultrasound that looked good and a cholangiogram that also looked good. He had started to take a few things by mouth, but got a really yucky medicine (bactrim) and stopped taking by mouth (seems pretty appropriate for him!).
The docs had been badgering us to have another EEG, they were concerned that he was not more awake and responsive, and wanted to make sure there were no seizures going on. Mom and Dad both felt Roger was as responsive as you could expect given the amount of DRUGS the kids is on. We'd both observed him being himself, watching the TV and looking at us. But because none of these events occurred while the neurologists were there they were discounting our reports (what could we know, we only spend 24/7 with the kid!!!!) Anyway, EEG happed Friday and they saw no seizures (Thank you God!) but slowed brain waves consistent with heavy sedation, DUH!!!
Our biggest struggle right now is to try and reduce his drugs without sending him into major withdrawal. He is still on high doses ("enough to drop a horse" as his nurses put it) of Fentenyl and Versed. Both Steve and I feel he is having a hard time dealing because his brain can't cope with this level of drugs, you can see him fighting through the haze and being confused and angry because of it.
The good news is it's been over a week since his last surgery and considering all that he's fought through so far, these are smaller (although frustrating) bumps in his road.
Thanks again for all your prayers and support, they mean a lot!!!
03-06-05
Hi Stacy,
I think we may be on the right track with Roger's Fentenyl, they weaned it down a little this morning and he has had a much better day so far. He has actually been awake and not moaning and whining. I look forward to tomorrow's wean!!!
3-09-05
He got out in the stroller again today! He started with fevers last night and tx is thinking it's an infection. They are re-starting another antibiotic and waiting for the cultures to come back. Roger has been a little extra sleepy today, but we are continuing to wean his narcotics and SLOWLY moving toward the PICU door. I would HOPE within a week we could get to the floor, we'll see?!
03-20-05
Hi CLASS Family,
I have not posted in a while, the only computer I have access to at the hospital has become REALLY slow and it is all I can do to read my posts and emails!! I am home for a day and thought I'd try to catch up. Even though I'm not posting please know that I'm reading, cheering for those of you celebrating good news and praying for those of you facing challenges right now.
Roger is making some good progress, we are still stuck in PICU land but mostly due to logistics (available bed, staffing on the floor, etc...) We are hoping to move on Monday, but I'll believe it when it happens.
I've posted some pictures to show you where we've been and where we're at, as you can see he has lost a lot of "equipment" and is finally able to get out of bed and start to feel like himself again. He is off most of his sedation, starting to talk and trying to take some water and pediasure by mouth. His personality is coming through and his vision seems OK, the seizures he was having were in the visual cortex and everyone is concerned to see if there were any effects on his vision. His seizures seem to have been successfully controlled with meds.
Overall his labs are good, but his bili (7-8), AST(200's) & ALT(200's) are still elevated but stable. Transplant is not too concerned and said it may take some time for them to settle after everything he's been through. This week he got his neck central line out and his new double lumen Hickman, this means he is more mobile and happy (I can't believe he never pulled the line out, it was driving him CRAZY). He has started PT/OT and getting out for rides in the stroller often.
We've had a long road(2 liver transplants, 2 days without a liver, 53+ days in PICU, repeated portal vein & hepatic artery clots, sub-clinical seizures, bowel perforations and 9 trips to the OR), but I feel like there is finally light at the end of the tunnel. I thank God that Roger will be going home with us and not home to Him, we were not certain of that in the beginning and pray every day for those families that did not bring their child home with them.
03-22-05
The new room is great, but Roger had a tough day with the transition. He thought we were packing to go home and was very upset when we unpacked in his new room :(
He continues to make progress each day, speaking more, visually more engaged and working hard at PT/OT.
Thanks again for all the prayers and support!
03-26-05
Roger has had a lot of clotting issues with his transplants and has been on a heparin drip in the hospital as a precaution. We are now transitioning him to Lovenox(low molecular weight heparin) to go home on.
The MAJOR drawback to this treatment is that it is given as twice daily sub-cutaneous injections. So far he has had 4 doses(not a lot I know) but he really seems to be having a hard time with them. We first tried emla prior to the injection, but it just seems to make him more anxious. Next we tried using distraction while he got it, no better. Any suggestions are injection techniques?
Also, the only alternative we've been offered to the Lovenox is oral Coumadin, but the doctors are really not in favor of it. They say it is less predicable and the level is harder to maintain. Has anyone out there used it for their child?
I'd appreciate any input folks might have, we're really frustrated. Roger seems to get depressed from the injections and that make us depressed! Thanks.
We've agreed to give it a few more days try before switching to try the Coumadin. Thank you all for your information.
I'm thinking though that we are going to push to try the Coumidin, Roger has become very depressed and withdrawn, he's hardly speaking and refuses to try to eat. Every time medical personnel come into his room he curls up and shakes, all of this has changed since we started the shots (he screams and struggles during the shots too).
I can't see doing this to him if there is another option. The docs are saying they want him on it for 6 months to 1 year, seems like an awfully long time to keep going if he is already having such a tough time of it. After all he's come through I don't want to sacrifice him being him just because of a medicine.
03-31-05
Going home? Ok, not today, but there's a chance by the end of next week! We still have to line up our home care and first set of meds.
Things are going OK, bili and LFTs are still up. Yesterday Roger had a CT scan of his abdomen which looked good, no bowel perforations, only trace ascites and a liver that has actually grown! Roger has a liver biopsy scheduled for tomorrow and having his last JP drain removed, they'll also do an ultrasound while he's there and make sure all the blood flow looks good. The current thinking is that the elevated labs are due to bile in the liver cells and that the liver just needs some extra time to heal.
Yesterday he had an EEG and visual evoked potentials (VEP) test. The EEG showed no seizures (thank God) and more "normal" looking brain wave patterns. The vision test showed that the pathways from his eyes to his visual cortex are OK, but there seems to be some areas of vision loss in his right field of vision. His early February MRI had shown lesions in the visual cortex and that is likely what is causing the loss. Neurology is supposed to find out about some therapies to help him cope with the loss. They cannot rule out that some of it may continue to improve over time. Not the best news but nothing we cannot learn to adapt to. He always seems to figure out how to get done what he wants to do, might not follow the textbook approach but gets the job done Roger's way!
So it looks like this part of our journey is winding down, and none too soon. Life in the hospital is taking it's toll on all of us and I don't think that Roger will really feel up to the hard work of getting better until he is home.
04-05-05
We are not out yet but getting very close. We are trying to line up our home care, first month of prescriptions and are still working on getting Roger's Coumadin level therapeutic.
The TX team agreed with Steve and I that the personality changes and generally VERY BAD experience that Roger was having with the Lovanox injections was not acceptable and let us switch to Coumadin. I am pleased to say the least, Roger was absolutely miserable due to those injections. He has come through too much to ask him to deal with that as well, while he is still working on eating, walking and adjusting to his vision losses.
We will all be very, very glad to get home and back to our new "normal".
04-12-05
We have departed the big city of Boston (after 75 days) and arrived home in New Hampshire this afternoon.
Wow, what a flood of emotions leaving the hospital and stepping back into the house with our "miracle boy". GOD IS GOOD!
Thanks again for all the prayers and support. I'm sure I'll be posting often as we get used to life on the outside, and I'll be looking for everyone's good tricks and suggestions for life on this side of transplant
04-26-05
Adjusting to life at home has been busy and WONDERFUL! BUT, I am still a bit bummed out.
I had hoped that this side of transplant would be a better place for Roger. He's not walking yet, still has a HUGE belly, LFTs & bili are up and he's still as finicky an eater as ever (loving that feeding tube!). On a more positive note (I am trying to see the good!) he crawled across the living room yesterday and his vision loss seems to be improving everyday.
With the current discussions about labs I thought I'd post some of Roger's also. Some are good (kidneys & magnesium) but his liver labs really get me down these days. They are no better and some even worse that pre-transplant.
WBC 3.9
HCT 31.7
PLT 89
BUN 9
CREAT 0.2
ALBUMIN 3.0 (was very low pre-tx)
AST 226
ALT 207
ALK PHOS 1024
TOTAL BILI 9.2 (was 6-7 pre-tx)
MAGNESIUM 1.2
CYCLOSPORINE 423, Target is 200
The doctors say it may just take a long time for the LFTs and bili to come down. Roger had multiple liver biopsies to check for rejection and his last couple showed nothing significant. I don't know what else would be keeping those values up if it is not rejection. Still too new to this part of the journey!
Maybe time is the answer but patience is getting harder to find. I keep wondering if the liver is getting damaged and will we be going through all this yet again. I have a lot of faith in our transplant team but I just wish we could see some results that make me feel less guilty about starting Roger down this road, his quality of life seemed so much better pre-tx than now.
(Sorry, pitty party over!!!)
Thank you all for your encouraging words. Deep down inside I THINK things will get better too, just having a hard time getting there.
Roger is getting physical therapy once a week at home, but for now I am opting out of the additional OT (his fine motor is going well). We have home nurse visits on Mon & Wed, clinic in Boston on Thur, PT on Fri and OT can only come on Sat or late evenings (too much!). He is making progress but it is so hard to get him to try. Before all this he could run and play with his friends, but now it's like being a 3 1/2 year old, 36 lbs infant! He is frustrated about not walking but it is not driving him to try hard to get walking again. I know this is difficult for him, but it is frustrating to try to help someone who doesn't what the help. I made a sticker chart to help motive him to try his exercises at least three times a day, it seems to help a little. We'll just keep trying and I'm sure on of these days he'll do it, just hope it is before my back gives out :) !!!
We have labs again on Wed and Thur, hopefully things have at least started to move in a downward direction. Thanks again for the encouragement, it helps!
Friday, May 20, 2005 5:20 PM EST
Hi Everyone,
Here’s the latest. Today’s ultrasound confirmed the results of Roger’s last ultrasound showing clotting of his Portal Vein. If you were wondering what that means, it’s not good. There isn’t anything that will be done to reopen the vein because the benefit doesn’t outweigh the cost of another surgery.
We are left with waiting to see what happens. There is a chance his liver can overcome the deficit. If not, the long term fix is another transplant. There is no way to determine the percentage of either outcome, so we’ll take it one day at a time. The great news is that Roger continues to have a great attitude and is working hard at getting better.
We will continue to keep everyone informed. We continue our prayers and are ever grateful and thankful for everything.
Over and out,
Steve
Friday, May 20, 2005 8:37 AM CDT
Hi Everyone,
The good news for today is Roger’s billirubin is down to 13.1 today from a high of 16.5 on Wednesday. We still don’t know why his level is still so elevated. The plan for today is to do an ultrasound to check blood flow and the bile ducts.
We are transitioning his immune drug to Prograf, so that will keep us in the hospital a couple more days until the level is appropriate.
There doesn’t seem to be much we can do at this point except to wait and see. Keep the prayers coming.
Love,
Steve
That’s right, you read correctly. Dad wrote the entry. I’ve taken over. I’m in charge.
Thursday, May 19, 2005 12:32 PM EST
Roger woke with another fever today, but it cleared after a dose of Tylenol and he was feeling fine again. The thought is that the fever is just a hold over from having anesthesia on Tuesday. All of the cultures, x-ray and lab work after yesterday’s fever look fine.
We got some information back about the liver biopsy, there is no acute rejection and the liver cells actually look better than his last biopsy from March/April. That is good news, the bad news is that we still have no explanation for his bili being up to 16. I think now the focus has shifted to the bile ducts in and out of the liver, and whether or not there is a blockage, narrowing or other obstruction. Not great news and we still don’t have a real “plan” on what to do next. The whole transplant team needs to get together and discuss the situation. Hopefully that will happen today, I don’t deal well with the not knowing part of all this.
Please say a prayer that whatever is going on is something that can be fixed.
Love,
Dawn
Wednesday, May 18, 2005 10:00 AM EST
Roger woke up with a fever (103) this morning and is extra sleepy. We’ve had regular labs, blood cultures off his central line, chest x-ray, urine sample and a dose of Tylenol to make him more comfortable. Don’t know what’s up yet, but we’re checking everything.
No results yet from the biopsy yesterday, but he tolerated the procedure very well. He was back to his “bossy” hospital self last night after he woke from the anesthesia.
I’ll update later as we get results back for the biopsy and today’s tests. Roger is comfortable and napping at the moment.
Love,
Dawn
Monday, May 16, 2005 7:08 PM EST
Roger did some AMAZING walking today. He pushed a play shopping cart from his room, over to the kitchen, around the nurses’ station, out the door to the elevator and halfway back to his room! He only took a couple of breaks and didn’t whine very much at all, pretty amazing for him.
His bilirubin has continued to climb and was 15.2 today, it should be under 1. His other liver labs have not changed much and remain elevated around 200, they should be near 50.
The biopsy is scheduled for 2:30 tomorrow afternoon, and he cannot eat or drink after 7am in preparation for the anesthesia (that’ll be fun!). The transplant docs are thinking this is either rejection or an obstruction in the bile ducts. We will probably not have biopsy results until Wednesday morning and we are all hoping they show something clearly going on and we can take action. Otherwise we are looking at still other testing to try and figure out what is going on.
Dawn
Monday, May 16, 2005 11:33 AM EST
We are settled in and waiting for lab results and rounds this afternoon. Nothing much to report yet, we’re just waiting for the coumadin (blood thinner) to get out of his system. Once his INR is in an acceptable range the docs can do the biopsy, until then we wait.
Thankfully we got our same old, comfortable room (a single) and that will definitely make to best of this stay.
Love to all,
Dawn
Friday, May 13, 2005 7:44 PM EST
As some of you know, things have not been going great for Roger since his transplant. His labs values are not were we’d like them to be, his belly is still really big and he is getting really yellow. Something is not right and we are going to start digging deeper to find out what. This Sunday we’ll go back to the hospital to prepare for a liver biopsy this week to find out how his liver is doing. Because he is on a blood thinner, we have to go in for a few days while the drug clears out of his system before they can do the test, and then wait a few days to get his blood thinner level back up. It’s likely to be a 7-10 day stay.
I will be updating his web page as we get more information from the biopsy and any other tests they might decide to do while we’re there. Please say a prayer that what we find is something that his liver can recover from.
Thanks,
Dawn
Friday, May 13, 2005 8:24 AM CDT
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