Good morning, Jacob fans! I have to admit that I have not had a very informative update in a while... Jacob decided to go to sleep a little while ago and I, of course, cannot fall asleep! So, I thought I would see if I could update you on what has been happening with the little boy...
True to form, Jacob came out of his last bout of "illness" stronger than he went into it. I always wonder WHY that is, but am sure glad it happens. He is on room air during the day, with few exceptions. Overnight, we really haven't used the vent for a while, and often don't even need to bleed in 26% O2 (room air is 21%), as he doesn't show us that he needs it. He has been tolerating his passy-muir (speaking valve) like a CHAMP ever since his May 13th surgery where Dr. Beste removed a restrictive granuloma in his trachea. We put it on at night, as well, and it really cuts down on having to suction him. The passy-muir allows the trach patient to inhale through the trach tube, but exhale through the mouth/nose. This is good and beneficial in so many ways for Jacob... especially great practice if we ever get that pesky trach OUT J It is great to hear his voice, and know that his vocal cords work.
When Jacob was sick earlier in June, we had our follow-up appointment with Dr. Beste (ENT) from our May 13th surgery. We had an ear culture and a trach aspirate to see if anything needed to be treated with antibiotics, and nothing terrible showed up, so it was probably a combination of healing from the surgery and something viral (again.) The congestion and draining from the work he had done in his mouth and having part of his adenoids removed were probably making it harder for him to breathe, thus the O2 requirement. It never was as bad as before Easter, where he was back on the vent for a good portion of the day/night.
Dr. Beste put a flexible scope down Jacob's airway and nothing bad stuck out. In fact, he said from what he can tell, that Jacob's saliva is NOT doing what he hoped it would not do (that made no sense.) Remember, Dr. Beste said that even if he could suture Jacob's epiglottis back to where it should be sitting, that it was also shorter than it should be. He was afraid that Jacob's saliva would not run where it was supposed to and he would just keep choking on his saliva if we ever got the trach out. This was very hard to hear, as Jacob has done his part in strengthening his airway and the epiglottis is totally out of his control and there is nothing he can do to fix it himself. I was under the impression that Dr. Beste wouldn't know if this was happening until we tried to decannulate (take the trach out permanently.) But, apparently this can happen at any time and so far, it doesn't look like it's happening!!! That is HUGE and a nice surprise to hear in the midst of an illness. So, we pray that this continues to be the case, of course.
Dr. Beste would like to get in the OR with Jacob again this Summer to check on the status of his epiglottis and see if he needs to do any more work. We knew going into this, that the first surgery probably wouldn't be enough and we'd have to build up scar tissue and suture it up a few times. He WAS pretty confident after the May 13th surgery, but who knows how great it has healed. We are looking at some August dates and I should have it on the calendar by the end of the day today. This should be a quick, easy visit and we should be discharged the same day.
After Dr. Beste decides that the epiglottis is as good as it's going to get and there is nothing else he is able to do, then we have to speak with our Feeding & Swallowing dr., Dr. Joan Arvedson, about a repeat Swallow Study. Since the structure of Jacob's mouth has changed, we need to make sure that he is not aspirating. My gut feeling is that he is not, but that is not official enough for him J
Dr. Bonnett (audiologist) got us in a few weeks ago already and molded Jacob's ears for "normal" hearing aids. Jacob was approved last week and they are officially on order and we should have them before school starts in the Fall. The one ear that is really stenotic (extrememly small opening) may not be compatible with a hearing aid, as it is just SO hard to get in there. At first, Dr. Bonnett didn't want to try to pour it, because part of the mold can get stuck behind where it should go. I told her that I was EXTREMELY determined for her to at least try. Jacob's ear had so much drainage, that she had to send us to Dr. Beste's clinic to get them sucked out first before she could even pour them. When we got back, she was just as determined as I was and she said she was not going to give up on the ear. Once again, a dr. at CHW listening to the wishes of the parent and understanding. The pour was a success and we are waiting to see if the company has enough material to use to make it. If not, I am going to ask Dr. Beste if he can drill it out to make it larger, as this was an option years ago before we were told to use the bone-conductive BAHA hearing device and bypass the ears (aka~ the size of the ear canals didn't matter at the time.) We have to schedule an MRI to look at his ear structure, now that we know it is more sensory than conductive, and then we will know more about where his hearing loss is coming from. THEN I can attack Dr. Beste with my questions and ideas...!
In lieu of Cleft Palate Clinic (because we already see all of those drs. anyways), we saw Dr. Jensen (Craniofacial/Plastics) and Jacob's cleft palate looks to be healed up nicely and he didn't even see a fistula (small hole that didn't heal up from cleft palate surgery #1 but he hoped to repair in cleft palate surgery #2) anymore!
In lieu of that clinic, we also saw a speech pathologist for the 2nd time, Dr. Bayliss. We didn't do anything much and she will become a larger part of Jacob's life, we suspect, as he gets older.
We saw Dr. Lew (Neurosurgeon) as a follow-up to Jacob's VP Shunt placement (11/06.) We didn't need a Head CT, as Dr. Gordon (Special Needs dr.) got one this Winter to rule things out, so Dr. Lew was just a quick office visit. All was great and we don't have to head back to see him for a whole year!!! The approximate lifespan of a VP Shunt is about 4 years, although it can malfunction a week after placement or 12 years later, so that really isn't a good indicator. We are thankful that it is working properly and that we've had no issues with it. We don't even think about it, truth be told.
We are still working with Dr. O'Connor (Peds Neurology/Epilepsy) on finding a good combination of meds to control Jacob's seizures. We are currently on Felbamate and Keppra (actually the generics of them.) Usually, he has seizures about every 3 days. This last time, he went 5 days before he had one. We just went up to the final dose we have on his Keppra titration schedule, so we will get labs in about 2 weeks and check his levels to see if we can go up further. We are at 1000mg of it per day now. We are waiting for a date to get in for a LTM EEG. We will probably stay a few days, just hooked up to the EEG machine. They are having some trouble getting admissions for EEGs for patients that cannot go to the regular monitoring unit (due to the trach.) It is surely not an ICU type admission, but that is the ONLY place Jacob can be admitted with the trach. The LTM EEG will tell us if his seizures have changed and if we are still barking up the right tree with the combination of meds we are on. Still on the table, is trying the Ketogenic diet. I wasn't ever too keen on this, but I didn't realize that KetoCal existed, and it would be a breeze for a G-tube child to transition to. If after a few months, nothing has changed, we revert back to his current Promote/Pediasure w/ fiber concoction.
We have managed to get rid of a med, too! We no longer have to take Baclofen (one of his two muscle relaxers for hypertonicity.) Dr. Moberg-Wolff (Rehab) was going to have us stop it when we saw her last month for a routine appt., but I told her that we needed to wean off of it, even though we were down to a low dose already. We actually started the wean back in the Winter (!) and then we just kept a small dose 1x/day until we saw her again last month. She said if Jacob becomes hypertonic again, we can just add a 3rd dose/day of the Dantrolene (the other muscle relaxer for hypertonicity) but I am hoping it won't be necessary. He stopped being hypertonic/spastic after we started the Dantrolene back in the Summer of '07 and we've never had to increase the dosage! I think that is phenominal, as he obviously weighs more than he did 2 Summers ago. If at our next appt. in 6 months, she suggests weaning the Dantrolene, I think I will finally be up for trying it. We won't know unless we try and we are still at 15 syringes of meds/day so if we see something we can try to get rid of, I personally feel we should give him the chance to prove himself.
We are looking forward to heading to Manitou Beach, MI to visit GA Susie & GU Lee next week! And this year, even if the power goes out the second we arrive, they have the generator all hooked up and waiting J That wouldn't happen two years in a ROW, though... right?!?!
Jen's stepsister, Megan, is getting married this Saturday, the 4th of July. It looks to be a great forecast and we are excited to see everyone from my Dad's family and from Karen's family. I am sure that Megan & Jake will be a very sought-after couple that day, but Jacob will be a close 2nd J
In August, we are planning to go to Door County again and stay at GA Peggy & GU Bill's condo in Egg Harbor. Our friends, Renee & Pete and Jessie & Jon, will be up there for the end of our stay, so Jeremy, Jacob and I are planning on meeting up with them while we are there.
We have some exciting news to share about nursing! We had a woman apply for a request we had on the CHW Private Duty Nursing website. We were requesting 1-2x/month on a Friday and/or Saturday night from 1800-0000 just so Jeremy and I could get out and do something. Her name is Ann-Marie. She worked at CHW in the NICU for 12 years. She has 3 children, does homecare for a little boy 2x/week and is her church secretary 3x/week. We met her last week on Friday night, where she came over and spent 3 hours with us, doing Jacob's nighttime routine and learning where everything was. She came back yesterday, and Nurse Danielle showed her our charting, paperwork, etc. We just love her and hope she gets approved!!! She is very loving, confident, smart and WILLING to do whatever we need. At her other patient's house, she makes the food, draws up the meds, changes the equipment, performs the weekly trach changes, and was ventilator recertified in April... plenty of a resume for us!!! She should get approved w/out a problem. We are approved, I believe, for 140hrs./week, and we use about 21-42hrs./week, so we aren't even CLOSE.
On a sad note, today marks the last month with Nurse Danielle on our case L Her baby is due at the end of the month and she isn't planning on returning afterwards as of right now. She was our first nurse and has been w/ us since Jacob was almost a year old. We cannot thank her enough for her dedication and hard work on Jacob's behalf. It is extremely sad to think of life w/out her, but once a nurse, always a friend. We will never forget what she did for us and how she allowed me to go back to work after being gone for 14 months and for showing that her job was more than just a job. I know she truly loves Jacob and we love her, too.
Nurse Rachel really isn't able to come anymore, as it is just so hard with her 14-month old cutie, Ava, her husband teaching & coaching, her CHW schedule and the fact that she doesn't live too close to us. There is always a chance, of course, but we wanted to let her know that we appreciated everything she did for us when she was coming regularily and that she will also always have a place in our hearts.
While I am thanking people, I also need to thank Jacob's three therapists... ST Linda, PT Jill & OT Kaitlyn. We see them so often, that it probably seems as if we take them for granted. They are all three so good with Jacob and so accommodating and willing to go the extra mile on his behalf. We are extremely lucky to have them. Thanks, girls!
Last week, Nurses Danielle, Heidi and Bri all took and successfully passed their ventilator recertification class. Although, Jacob doesn't use it on a regular basis, if it is in the home, the nurses have to be vent certified and bill for that. Thank you, girls, and GREAT JOB!!!
I think that is about it for today... Thank you for checking in and we hope your Summer is going great, too.
Lots of love from Jen, Jeremy & Jacob
I am happy to announce that we are officially registered as TEAM JACOB for the Briggs & Al's Run & Walk for Children's Hospital on SATURDAY, OCTOBER 10, 2009!!!
Please consider walking with us (you can choose either 3 or 5 miles on the day of the event) in honor of our favorite hospital. To register on our team, please click *HERE* Our team login is "team jacob" and our password is "jacobschultz" and answer "no" to the Childrens Champion question~ thank you for considering being a part of this very exciting, very emotional, and very beneficial day in the life of Jacob. Adult walkers are $20/person and children 12 and under are $8/child. When you register, you can also register to run at an additional cost. This year, I will have to demand that a TEAM JACOB runner comes in first J
Also, even if you aren't able to join us on the day of the event, you can sign up to walk with us if you'd like a TEAM JACOB shirt. (The same fees still apply.) All shirts will have a TEAM JACOB backprint, except for Toddler size 2-4.
Maybe you are able to donate towards our team goal in raising $2000 for CHW? Click *HERE* to donate to our firstgiving page in honor of TEAM JACOB.
