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Wednesday, January 9, 2008 8:34 AM CST
Happy New Year!!! Enjoy the slideshow I made of Luke over the last year. We made some awesome progress and wonderful memories!
Thursday, November 29, 2007 10:45 PM CST
Luke is 3 now!!!
We celebrated Luke's 3rd Birthday (and Josh's 17th) last Saturday with a party with all the relatives. Luke was a good boy with all the people and comotion in the house. We put a little toy helicopter on his cake (he loves helicopters). When we sat the cake in front of him he had fun spinning the tiny little helicopter blades. It was pretty cute. The next day was his actual birthday which was pretty quiet but we saved a present for that day. We gave him an inflatable Diego hideout (like a little tent), so he and Alex were having a lot of fun playing with that. We set up his new table and chairs set which he also really likes. He figured out right away how to get up and down from it. I think he feels like a pretty big boy sitting at it. It's so hard to beleive he 3 already and it's been 3 year since we started our journey in the NICU. It's so nice to have Luke at home and healthy. We are very blessed.
Thanksgiving was also a good day for Luke despite not getting to eat any turkey. But we all definitely had a lot to be thankful for this year!
Almost two weeks ago now we got Luke's very first hearing aids. He does really well with them. He doesn't like it when we put them in but once they're in he's fine with them and doesn't even try to pull them out. We do notice subtle little things that tell us he's hearing better and he even startled a few times too. But overall, he has to learn how to use his hearing, just like a newborn baby would. So we have to work on teaching him to track sounds and look toward sound. Our biggest problem with them is the amount of feedback they give off. If the hearing aid comes within two inches of anything it starts to squeal and if one isn't squealing the other one is, so that's been a challenge. I plan on talking to the audiologist about that tomorrow.
Our biggest priority with Luke now is communication, which will consist of sign language and wearing the hearing aids as much as possible.
Wishing everyone a Very Merry Holiday Season!
Sunday, October 14, 2007 2:19 AM CDT
POST-SURGERY UPDATE
Luke's surgery went well last Friday. He ended up needing his tonsils out along with his adenoids after all. He came out of surgery better than what I expected. The ENT doc had warned us that tonsillectomies were a lot more painful than just having the adenoids out, so we weren't sure what to expect. We only stayed overnight in the hospital for one night. Luke's been recovering pretty well this last week and finally today he seems to be getting back to being his happy self. Now that this surgery is over, we're one step closer to getting the trach out. Now, his airway needs to stiffen up a little bit and improved swallowing would also be a big plus. The doctor recommended that Luke wear his speaking valve for his trach 4-6 hours a day to help with these things. He doesn't care for the valve too much, but I think he'll tolerate it OK. So now, onto the next hurdle.
Luke also had a hearing test (ABR) done after his surgery while he was still under sedation. The audiologist informed us that his results showed severe hearing loss in both ears. Hearing loss is something we've always suspected of Luke, but it's just been difficult to test him for it. But now, we finally have some accurate results. As much as we don't want to hear the words "severe hearing loss", it does explain a lot of things. The good thing is that he will be trying out hearing aids over the next 6 months, and if they don't help him, he can get cochlear implants, which I've heard may help his hearing a lot. So we're very hopeful that we may be able to see some improvements in Luke's development when he can hear better. In the meantime, signing and communication is definitely a priority now, not that it wasn't before, but knowing that he can't hear what we're saying makes you realize how isolated his world might be to him. He's definitely learning how to communicate in his own way though. Like baths, he loves them. So he walks you all the way to the bathroom door, then reaches to be picked up, leans into the door to open it, and then leans toward the bath tub... whether there's water or not. He even likes to sit in his bath seat fully dressed with no water. I don't think he thinks it's quite as much fun as when he can kick and splash the water around though. Then, when you go to take him out he pushes your hands away. He's does have a mind of his own!
The new living room... it is carpeted and furnished and we are living in it... pretty much done besides some trim and the closet door. It's so nice to be able to have so much space to move around. I think Luke likes it to. It's funny, he never had much of a problem with all the changes lately. But, he doesn't seem to want to climb in his favorite brown chair lately anymore since we moved it into the new room and away from the window. But, that's the way Luke is. He gets a favorite thing, and I just get all excited about it cause I like him have favorites things for comfort, and before I know he could care less about it. It's such a bummer for me. I don't know why, I'm funny that way.
I recently started a blog site for Luke in addition to this Caring Bridge site. The purpose of the blog is so that I can update more frequently on Luke's daily life and be able to post more pictures. I'll still continue to give the big updates on this website and post pictures like I usually do, so we hope you'll keep visiting here and signing the guestbook too. You can visit Luke's new blog by clicking on the link at the bottom of the page. It really means a lot to us to know people are still visiting and thinking of our little guy!
Well, I'm way too tired to update anymore and have to go to bed at some point I guess. 
Sunday, September 23, 2007 9:03 PM CDT
Luke has been battling a cold over the last week but has remained quite the little trooper, still showing off all of his new gross motor abilities and being his smiley, happy self. Hopefully we are at the tail end of the cold now and it will only get better now.
We are almost done with our new living room now. Jon and the crew almost finished the ceiling today and the carpet goes in on Thursday. Luke has been watching everything going on in the new room. Today, everytime Daddy would use the nail gun, he would giggle. He's also been taking full advantage of using his bike/gait trainer in the great big empty room with no carpet. He goes really fast in it and then picks up his feet until he bumps into the wall (with his bumper of course), like bumper cars. Suprisingly, Luke seems to really like the new room. This is a kid who used to cry just walking towards the doorway of a different room. He's come a long way over the last 3-6 months with so many things.
And then there's affection. Oh my, does Luke have affection to give! I waited for two years for Luke to want to be held, rocked and hugged and now... well... he must think he has some making up to do because he's turned into a great big slobbery little love-monster. He just loves to wrap his arms around the back of your neck and cuddle as close as he can. Really, the closer the better for Luke! And you can't mind kid-slobber if you're going to hug Luke because he'll getta... and he'll getta good! He still loves to wrestle, especially with Daddy. And Grandma Shari even taught him how to dance. His social skills have definitely been way improved lately. He watches what others are doing more and holds really good eye contact, still on his terms and only when he wants to but it's much much better.
As far as the medical side, Luke is scheduled for surgery on October 5th. He will be having his regular 6 month Bronchoscopy along with his adenoids out and botox to his saliva glands (a procedure that temporarily helps with all the slobber). Also, while he is under sedation he will be having some lab work done, an MRI of the back of his eyes (just to check for abnormalities) and another hearing test. This hearing test should give us a really good idea if there is any hearing loss at all, something we've always been concerned about. Soooo, this will be a big day! Luke will have to stay at least a couple of days after. Hopefully, Luke will be healthy enough for surgery. I'd hate to have to reschedule and get into the holidays and more importantly, the dreaded flu season. Please pray for surgery to go well for Luke!
I will be sure to update on how everything went.
Luke's great grandma Rose still needs lots of prayers as she continues to battle cancer.
Thanks for checkin' in again! Take care and God Bless!!
Sunday, August 19, 2007 1:05 AM CDT
A NEW LIVING ROOM FOR THE SNYDERS
Well, it's official, after being talked about for a while now. We are adding on a living room. It'll be a good sized room on the front of our house. Jon will be doing most of the work himself so it may be a couple of months before it's done. We've been packed in like sardines around here with all Luke's toys and equipment EVERYWHERE. Hopefully we can also gain some storage space out of this project too. Still figuring that part out. Luke will also be getting his own bedroom, a small one, but it will be his. We're all very excited for the extra space. Not sure how Luke will react to these changes, but I guess he'll have to adjust!
Other than that, Luke's been doing pretty well. He has a little respiratory bug right now because his right lung has crackles and he's been needing a little more oxygen at night, but overall, he's been feeling pretty good. Hopefully it doesn't turn into anything more.
Luke has a hearing test on the 22nd so we'll see if we're able to get any kind of accurate results at all. We haven't had much luck in the past. We also met Luke's sign language instructor and intervener on Wednesday. She was soooo good with Luke and he really paid attention to her as she was signing. She's deaf and has worked with other kids Luke's age so she may have some really good ideas. She'll be coming once a week for an hour or two to spend time with Luke. I think she'll be really good for him.
Please pray for a little boy named Thunder and his family as he battles cancer. He needs all the prayers he can get right now. I came across his website and his story touched my heart. To read about Thunder, go to www.caringbridge.org, go to VISIT and type in THUNDER.
Tuesday, July 31, 2007 6:52 PM CDT
BACK FROM CALIFORNIA!
Well, some of you may not know, but Luke's Grandma Shari and I took a trip to California. We went for the 8th International CHARGE Syndrome Conference in Costa Mesa, CA. We didn't bring Luke. As much as we would have loved to, I think it would have been too much for him. The conference was really wonderful. There were lots of good speakers there who really know their stuff. We learned a lot about many aspects of CHARGE in the variety of different sessions we went to, but I think the best part was being able to meet all the CHARGE families that were there. Six hundred people attended the conference from all over the world! To finally be able to meet some of the sweet little CHARGErs (and their parents) I've been following through their websites and the listserv online was so incredible! Friday night I got together with some of the moms I met and we went out to eat. Sharing our stories and experiences, I truly felt a bond to these wonderful moms. It's like being in a club I never wanted to join, but yet I couldn't be more grateful to be in it. We finally had to leave when we realized the restaraunt was closing when the lights came on and the music stopped. Saturday night was a lot of fun to watch all the kids dancing after dinner and having so much fun. We had the privelage of meeting a lot of older CHARGErs too. One thing is for sure, CHARGE kids have a really great sense of humor. It was a lot of fun visiting with them. We didn't stay for the breakfast and farewell on Sunday, so we said our goodbyes on Saturday night, which was a little emotional. I am definitely looking forward to the next conference which will be in Chicago in '09 and hopefully the whole family can go with next time. A big thank you to Auntie Laura (Luke's nurse) who really wanted to go too, but very willingly stayed home to help Jon take care of Luke. Hopefully she can make the next one. Also a big thank you to Shari for going with me and wanting to learn about CHARGE as much as I do and getting me through my first time flying, even being nervous yourself. You hid it pretty well. Thank goodness you didn't start laughing on the plane or I'd have really been a wreck. I had a lot of fun, Shari. A big thanks to Josie who informed us about our flight being cancelled so we could spend the rest of Saturday night at the conference in the hotel instead of sitting on a hard bench at the airport. We got to ride home in first class due to the cancellation, so it was worth having our flight cancelled anyway. Was glad to get home though to see the family and just in time for my birthday.
On the homefront, I came home to Luke taking these awesome little baby steps when you hold his hands. He's really figuring out where he wants to go and he leads you in that direction. He seems to have a strong desire to get walking. Besides that, he's still been going strong with all his climbing and crawling everywhere. His eye contact has been a little better too lately and it's quite possible that he signed "hat". He loves to play with daddy's baseball caps and when we showed him the sign, he did it too. Now, the sign for "hat" is tapping your head, so whether it was coincidence, because he does this sometimes, I'm not sure. But, let's just say he signed "hat". He's also become quite the little cuddler lately (something I have long awaited for), giving lots of hugs and even some kisses too. He hasn't been spending as much time outside due to the heat (it was much nicer in California), but he did get to sit in a pool for the first time. He really liked the water and kept feeling it with his hands and looking at his wet hands, but he decided he was done after about 15 minutes. Hey, 15 minutes ain't too bad for Luke.
As far as the rest of the family, the kids (AND MOM) are ready for school to start since they seem to be bored and driving me buggy! And Jon, I think he's just ready for some cooler weather to make the old UPS job a little less, well... hmmmm... HOT!!!
Prayers are still needed for Luke's Great Grandma Rose who is battling cancer. I can't even begin to say enough about Grandma Rose. She's an angel on earth, that's for sure.
Also, prayers are needed for a little boy named Thunder who is also battling cancer. You can go to www.caringbridge.org and VISIT Thunder.
Please don't forget to sign Luke's guestbook. Luke's mom has a little compulsion with checking for messages and getting really excited to read new ones. Maybe I need to get out more??? Thanks for visiting again!
Wednesday, June 27, 2007 5:08 PM CDT
EXCITING PROGRESS!!!
I don't usually update this soon after the last one, but we have an awesome progress report to share. The last month or two has been pretty exciting for all of us. Luke has gone from an innocent little boy who mostly scooted on his back to get around to an untrustworthy little monkey who loves to crawl and climb up on everything - all by himself!!! A few weeks ago I left the room with Luke laying on the floor and came back a minute later to him standing by the chair, he then proceeded to climb up onto the chair. Yes, Luke is officially not to be trusted by himself. He is also crawling around now and he gets better and faster every day. He started off with just a few "crawl-steps" and now he goes clear across the room. It's hard to believe all the gross motor progress he's made recently, and all this came just a month after finding out he has no semi-circular canals, which means virtually no balance. Go figure. We are all so excited and having so much fun watching Luke literally take off like this. I think I'll try to get some video of him and post it on this website so we can show him in action.
Also, Luke has been going outside a lot more now, and dare I say, I think he actually likes it! He goes for wagon rides and rides around on his bike (gait trainer). He swung for a little while yesterday but wasn't too sure about that and he definitely doesn't like sitting on the ground yet, even with a blanket under him. He does keep his sunglasses on now though. I think he realizes that it help with the brightness, so it's nice he's cooperating with that. He's come a long way with tolerating the outdoors. Two months ago he had a fit when we even walked towards the door, now when we open the door he heads for it. These may seem like really small things to most people, but around here, they are really big steps.
Communication. That's still a big one. His eye contact hasn't been real great lately. I think maybe he's just so into the new way he can move around now that he just doesn't care about paying attention to us much. Hopefully that's just temporary and it'll improve as crawling and climbing becomes old news to him. It doesn't help that he doesn't like wearing his speaking valve anymore either. I just put it on him today and he wore it for almost an hour and a half. He wasn't thrilled about it but he was comfortable enough with it on that he fell asleep. We'll try again tomorrow.
We had an ENT appointment last week at Children's in Minneapolis. The doctor prescribed some antibiotic drops for Luke's ears. He had been having some drainage that we noticed and apparently he had a bunch inside his ears too. So hopefully these drops will clear them up. We also scheduled surgery to have Luke's adenoids removed on October 5th. He'll also have two of his saliva glands removed at that time which will help reduce his secretions. He'll need to stay for at least a couple of days following the surgery. That will put us one step closer to getting the trach out.
Luke's been having some GI issues for a while now too. He's been having runny diapers pretty often and it usually comes with a gagging/coughing episode. We're not sure which causes which. That's always been the magic question. The gagging is somewhat typical for kids who have had the Nissen Fundo like Luke since they can't burp, so it's important to vent his G-tube to "burp" him. Luke has had these GI issues off and on almost his whole life. The doctor thinks yeast overgrowth and yeast die-off due to antibiotic use could be the cause of the loose poops. Maybe it is, I'm just not sure.
As for everyone else, it's pretty busy around here in the summertime. Alex passed Level 1 in swimming lessons and is enjoying being outside and playing with the new baby kitties we have. The kids witnessed the birth of the kitties (4 of them) so I'm sure that was an experience they won't forget. I think overall they thought it was cool, but gross. Taylor likes to spend time at the pool and every other spare minute on the phone or on the computer with her friends. Josh has been busy with work, babysitting, baseball, fishing at the lake and hanging out with friends, so we're lucky if we ever get to see him. Jon's been able to get to some car shows and racing with his Nova. And of course, we both always seem to find some time for our favorite hobby, Texas Hold'em, at least once a week thanks to Auntie Laura who takes good care of Luke.
Please say a prayer for Luke's great grandma Rose who isn't feeling so good and is battling cancer. She's such an awesome person and an awesome grandma and she believes in the power of prayer more than anyone. Special prayers for her would be greatly appreciated. Thank you.
I guess that's it for now. Please don't forget to sign the guestbook. Thanks for stopping by and visiting Luke!
Thursday, May 24, 2007 12:01 AM CDT
A SPRING TIME UPDATE!
Spring is here and our challenges this spring are not related to obstructive apnea and working to breathe, thanks to the trach. The challenge we face this spring is getting a very stubborn 2 year old boy out of his comfort zone and into the front yard for fresh air and fun. Anyone who doesn't think that would be such a big challenge, does not know Luke. We've been trying to get Luke used to being outside for a couple of months now, with some success on some days, but for the most part it's been a battle. But today, for some unknown reason, Luke decided it wasn't so bad after all. He even decided to run all over the yard in his gait trainer. This made a very happy mommy and grandma. We've got a lot of people waiting to take Luke for wagon rides and put him in the swing so I think we all get a little inpatient about this outside thing. Luke is unpredictable from one day to the next. He might decide tomorrow that he hates being outside again, but we know with Luke it's almost always two steps forward and one step back, so we're just thankful for our two steps forward today.
Speaking of two steps forward, Luke's been making a lot of progress with other things too. The other day I sat Luke on the floor in front of the couch when he decided to stand up and crawl up on the couch all by himself. He did this twice for me and Grandma Renee. But will he do it again when I want to show Daddy or anybody else? No way. He's such a little teaser. He's also been spending a lot of time getting up on his hands and knees and looking around. He seems to be getting a lot of upper body strength. Now he just needs to figure out how to move his hands and knees forward to crawl. He can almost go from his hands and knees to the sitting position and we know he can get from sitting to standing when he's by a couch or something to hold on to, so he's making some good progress towards upright independendance. A lot of kids with CHARGE start walking around age 3 or 4 so we're shooting for that. This may seem really late to most people, but to a parent that worried that their child may never walk, it gives a lot of hope. Luke seems to be heading toward that goal and we're very proud of him.
Sometime, back in March, not too long after I bragged about Luke not being sick much in my last update, Luke came down with RSV and bacterial pneumonia. That'll teach me to say such things. We've got a code phrase we use around here when one of us feels the urge to talk about how good things are going, we just say, "It's a beautiful day in the neighborhood." and leave it at that. Luke was pretty sick and it was a hard couple of weeks, but we managed to stay out of the hospital and when he got better he bounced back in a hurry.
On April 26th Luke had surgery to have tubes put in his ears and a bronchoscopy. The doctor said he had a lot of pus and fluid in one ear but the other was OK. He also said that Luke's adenoids were very big and will need to come out along with his tonsils. This might be a tough surgery for Luke so I'm sure we'll have to stay in the hospital for a few days with that one. The doctor left it up to us to decide when to schedule the surgery. Jon and I talked about early fall so he can enjoy the summer, but before the nasty cold and flu season hits. As far as Luke's larynx and the stenosis (narrowing in the airway) goes, the doctor said his larynx looked good, which is the first time we've heard that, and that he didn't see much stenosis. So, we're hoping that a lot of his obstructive apnea and breathing problems he had before the trach were mostly caused by his big adenoids. We can fix that. Once that's done we can think about getting the trach out, although Luke still has swallowing problems that need to get better first. It seems crazy to us to already be thinking about getting the trach out, especially now that he's doing so well. We won't be rushing into anything after all Luke has been through.
Luke also had a CT scan of his inner ear which showed that he has absent semi-circular canals. This is very common with CHARGE and we somewhat expected it. The semi-circular canals are a main part of our vestibular system, which controls balance. So, needless to say, Luke's balance is very bad, which is something we already knew, but now we know why. There isn't anything that can be done for it, so he'll struggle with balance his whole life. But on a positive note, there are a lot of CHARGE kids with the same problem and they do learn to walk and function pretty well despite these balance problems. Luke might look like a drunken sailor when he learns to walk, but at least he'll be walking. Like Luke's doctor said, "He won't be a gymnast or anything, but he'll do just fine."
We started seeing a new doctor at the University. She focuses a lot on nutrition for kids with chronic health problems. She switched Luke to a different formula that's easier to digest and started him on some vitamins and supplements. She also discovered that Luke has a milk allergy and that he isn't absorbing folic acid and vitamin B12 like he should, so hopefully these nutritional changes will help with that. She's also hopeful that these changes will improve Luke's overall development.
Luke will be having another swallow study later this summer. This will tell us if he still aspirates when he swallows or not. If he passes we can start working on oral feedings, which will be a huge challenge since he does NOT want to be fed that way. Most kids with CHARGE have swallowing difficulties caused by cranial nerve problems, but for some unknown reason, these problems tend to improve around 2 1/2 to 3 years old. So, we are patiently waiting and hoping that that's the case with Luke.
We've been working with Luke on communication with sign language and pictures. Right now, the only way Luke can really tell us what he wants is by reaching either for us or reaching toward where he wants to go, and sometimes when he gets upset it's hard to know what he wants. We can get Luke to imitate pat-a-cake and banging toys together but no luck with any signs yet. It's hard to get his attention long enough to teach the signs and what they mean. We're set up to have a sign language instructor come to our home and work with Luke and teach the rest of the family sign language too. She'll be starting soon. He also recently got a Passy Muir valve. It's a valve he wears over his trach that lets him inhale air throught the trach, but he can't exhale through the trach so he has to exhale through his nose and mouth. This allows air to pass by his vocal cords so he can talk and use his voice like he used to. It also helps with swallowing. The first time we tried it he hated and coughed and cried. A lot of kids, refuse to wear them because it feels so weird and different, but the next day he wore it for over five hours. He loved to hear himself talk. It was fun for all of us to hear his voice after all this time too. His voice is so darn cute. It's also nice because you don't have to suction his trach at all while he wears it. He was wearing the valve everyday for a while, but for some reason, he hasn't been tolerating it lately like he used to. It's really a bummer. Tomorrow the respiratory therapist is coming so maybe she'll have some insight as to why it's different for him now. If you see pics with a purple thing on his trach, that's the Passy Muir valve.
One of Luke's latest little obsessions is holes. He likes any kind of holes he can find. He loves his newest friends, his little finger puppets. You can see in the picture of Luke above, he's wearing his little monkey friend on his finger. It was a big comfort to Luke that day, because as usual, he did not want to be outside and that was the only thing that helped. It's so cute how he puts them on his thumbs and he's magically happy. Luke has been a lot of fun for us lately, despite his stubborn little ways. He's still a big love-monster and loves to give big hugs and wet kisses, but only when he wants to. He definitely makes the rules around here, but I guess after all he's been through, he's earned the right to have his say about a few things. He's quite the little guy.
Thanks for checking in on Luke and as usual I'll try to update again soon.
Saturday, February 24, 2007 5:37 PM CST
FINALLY, AN UPDATE!
Luke has been doing very well since his trach surgery. He recovered and healed nicely and most importantly he no longer struggles to breathe like before and has no more apnea when he sleeps! It's amazing to watch him sleep now. You can't even see or hear him breathing. He's finally getting to rest like every 2 yr. old should. He still needs a little oxygen when he sleeps, but that's been gradually getting better. Every one is adjusting to taking care of Luke with a trach. It's been more demanding when it comes to suctioning and keeping up with cleaning and changing parts on the humidity equipment, etc., but now we no longer have to constantly reposition Luke throughout the night to keep his O2 sats up and answer to an alarming monitor non-stop. So it's definitely a better kind of busy. We've also been very blessed this winter to have had only a few mild colds and ear infections. We've managed to stay out of the hospital so far. I realize that cold and flu season isn't over yet so I pray it continues to go as well as it has been. We're anxious for spring and to be able to get Luke out into the sunshine a little bit. He's lived a pretty sheltered life so far and I'm hoping to get him used to other things. Luke is very set in his ways and gets upset very easily with anything different. It's a challenge just getting him out the front door. He's got a brand new wagon that he got for his 2nd birthday just waiting to give him a ride around the yard.
Luke was sick on his birthday, so we celebrated that just recently. He was such a good boy and he even pulled a few sheets of wrapping paper off his gifts. Christmas also went well. He was a little out of his comfort zone on Christmas Eve at Grandma Shari's and Grandpa John's at first with all the kids and comotion, but he started to come out his shell later on. Christmas day was a little more quiet so he had a good day.
Luke is also making progress with his development. He can sit on his own for a short period of time. He's learned to use his hands to balance himself a little but he doesn't catch himself too well when he topples over yet, so we either have to sit behind or use pillows. And he only sits when we wants to. He also likes to stand and walk along the couch. I think he enjoys this more than sitting, but once again, he doesn't catch himself when he falls and really has no fear of falling so we have to always be right there to catch him. As for crawling, one day he decided to army crawl across the kitchen floor twice, and then we never saw it again. He looked like a little inch worm. He does however, get up and his hands and knees with his forhead touching the floor and rock. Hopefully that's the first step toward crawling. He's pretty wobbly with everything he tries to do, probably due to balance issues, but we're happy with the progress he's making. We thank Grandma Shari for a lot of that progress. Shortly after Luke got his trach, Grandma started as a PCA for Luke, which means that he's getting one-on-one attention so I can get other things done around the house without feeling guilty about not being able to work with Luke on his physical therapy and development. She's been great to have around both for Luke and for me. Auntie Laura is still Luke's nurse and takes care of him five nights a week since October so we can sleep. How great is that! It's so nice to sleep through the night without getting interrupted by monitors and feeding pumps. It's awesome to have family to help us take care of Luke and to know he's getting the best care and attention possible. We're pretty lucky!
As far as Luke's feedings, there's been no progress. Luke had a swallow study done in September showing that he aspirates when he swallows so at this point no oral feeding is recommended. These swallowing problems should improve with age and we will be having another swallow study done soon. So, when he can pass a swallow study we can work more towards oral feedings. This, I'm sure, will be a big challenge. In the meantime, we occasionally give him tastes of things and work on oral stimulation (which he hates) so when the time comes to eat we'll be one step closer.
Next, we need to see the ENT doctor for a follow up and to discuss a CT scan of Luke's inner ear (this will tell us about his balance) and a repeat hearing test. It's also a possibility he may need tubes in his ears for fluid and repeat ear infections.
Overall, Luke's been doing great and hopefully it keeps up!
LUKE'S 2ND BIRTHDAY
Thursday, November 2, 2006 9:05 PM CST
LUKE'S SURGERY
Yesterday afternoon, Luke got a trach... and tonight Luke is sleeping peacefully without having to work to breathe. His surgery went great and recovery is going well too. The good news is that there is no reason to think the trach will be permanent. The doctor said that within 18 months to two years he may be able to get it out with some corrective surgery if he doesn't outgrow his airway problems by then. He spent last night sedated and on a vent. Today he's been awake and getting back to himself. He must be feeling pretty good, he's been trying to do backflips in his crib. We're watching him close to make sure he doesn't bump his trach around. He sat up for a while tonight. Jon was on one side of the crib and I was on the other. He'd look at Jon, then at me, then at Jon, then at me, back and forth... he did that like 20 times. It was really cute.
We'll be spending 5 days here in the PICU and then we'll get to go to the regular Peds unit for as long as it takes to do trach training and to be comfortable with taking care of him again. Shouldn't take more than a few days. It's gonna take some getting used to but we're just so happy things are going as well as they are. Luke is such a little trooper as usual and always manages to make his mom and dad smile!
I updated the hospital info below so this is where we are and how to get a hold of us. Please don't forget to sign the guestbook. This mommy gets so bored in the hospital and really looks forward to that kind of stuff. Thanks.
LUKE'S FIRST TIME TRICK OR TREATING!
Tuesday, October 31, 2006 11:26 PM CST
Just a quick update. We're getting ready for a big day tomorrow. Luke is scheduled for a bronchoscopy and possible tracheostomy at 3:30 tomorrow. He's still having apnea and trouble breathing at night. We may be in the hospital for a couple of weeks while he recovers and until we learn how to take care of Luke with a trach. Please keep Luke in your prayers for a quick recovery.
On the lighter side, Luke got to go trick or treating tonight for the first time. He was such a good boy and he made such a cute little bat! Big brother and sister were pretty cute too!
I'll try to update after surgery.
Shelly
SURGERY UPDATE - LUKE HAS A TRACH
Yesterday, after Luke's bronch the ENT doctor decided that Luke should definitely have a trach to give Luke a break from his nightly struggles to breathe. The good news is that he sees no reason why it should be permanent and within 18 months to 2 years it maybe possible to get it out with corrective surgery. The surgery went great and recovery is going really well too. He was sedated and on the vent overnight but today he is waking up today and feisty as ever. He wants to move move move. So we're watching him pretty close so he doesn't bump the trach around.
Saturday, July 29, 2006 5:07 AM CDT
NEW UPDATE!!!
It's very early in the morning which is the best time to update cause everone's still asleep and I can think straight. I guess I'm way overdue to give a good update. Thanks Taylor for the little updates when I'm too busy.
Luke is doing good, today anyway. That can change very fast lately. The last 6 months have been wild. Luke has been in and out of the hospital several times since April with pneumonia, dehydration, fevers and increased breathing problems.
Luke's breathing was getting really hard at night so he had a bronchoscopy at the end of April which showed that Luke has Laryngeal Stenosis caused from intubation when he was so sick after he was born. It's scar tissue that causes his airway to be narrow. It won't ever go away but as he grows and his airway gets bigger his breathing may also get better. The ENT doc also dilated inside both sides of his nose again since his passages were starting to narrow from the Choanal Atresia. He was also found to have pneumonia at that time so he was put on some heavy-duty antibiotics which did NOT agree with him. He started having diarrhea like I've never seen before. We're talking 20 times a day. He also started gagging (since he can't throw up from the Nissen) a lot. Within 12 hours he was severely dehydrated and we we were hospitalized for 5 days. Since then, there's been a lot of ups and downs with his breathing getting better, then bad again and fevers for no apparent reason. He's been on a few runs of steroids to help with his breathing, which it does for a while.
On Wednesday, Luke had another Bronch/Laryngoscopy along with an Upper GI. The bronch showed that his lungs were clear and the doctor said his Stenosis in his larynx was not real severe so he doesn't see why time and growth won't help his breathing. He also dilated inside his nose again. That is not unusual that it needs to be done so many times. So, he put Luke on a real low dose of steroids to hopefully get him through these tough times and avoid a trach. From the GI standpoint, his Nissen looks good and tight so he is not refluxing which has been the ongoing question for a long time now. So, hopefully we can put that to rest. The opinion seems to be that Luke is having trouble swallowing and handling his secretions (and there's a lot of them) so when you combine that with his larynx problems, you have trouble. Next step will be to do a swallow study and to meet with a Speech therapist to work on these swallowing issues. Hopefully we can get some answers there. So overall Wednesday went very good. He was extubated right after surgery and we went home that same night. Thank God for Baby Einstein and Josh's portable DVD player with all these hospital visits and car rides (which he HATES). It's been a lifesaver!
So, no, Luke is not eating by mouth yet. We can't risk the possibility of aspiration and pneumonia with all these breathing problems he's been having. I'm just so thankful there is such a thing as a G-tube so we can always make sure he gets enough food. His good growth is very important in this whole process. He is now up to just over 23 pounds which is very good considering he dropped all the way down to 19 something when he was so dehydrated, so he's finally past where he was 3 months ago.
It's been quite a challenge keeping Luke untangled from his feeding pump cords these days the way he gets around. Still no sitting on his own yet, but he can get exactly where he wants to go no problem. He does this back-scooting thing all across the room. It looks pretty funny. He just points his head in the direction he wants to go and shoots across the room like lightning. He has been spending more time on his tummy lately though. He used to hate it but he actually likes it now. He pushes up with his arms all the way past his waist and looks all around like, "Oh, this is a new view.". I try to tempt him to crawl or front-scoot by putting toys in front of him. I can tell he's thinking about it but he always ends up flipping to his back and scooting to get it. He knows he can get what he wants faster that way. He's also been spending more time in his stander. It helps to strenghthen his legs and learn to weight-bear with them. He's been doing awesome in that. Now we can put him to the side of the couch and he'll stand there supporting himself on the couch. He can't get up or down by himself but at least he stands there for a while.
Overall, Luke is still a very happy boy, just developing a few new personality traits. Like if your standing in his way of something (like the ceiling fan) he lets out this big mad cookie monster-type yell like, "Get out of my way!". Or if you walk by him and don't pick him up when he wants to be, he'll yell at you then too. We gotta work on this communication thing a little bit. But on the sweeter side, if he's in the right mood, he loves to give hugs and kisses. He grabs your cheeks and put his face up to yours and gives you a big juicy wet slobbery kiss. By the time he's done with you your face is dripping wet and your cheeks are ripped off. But we love it! Then when he decides he's done he just pushes you aside like, "OK, you can go away now." He's got quite a little personality. He's been a lot of fun for all of us lately.
I will try to update again after Luke has his swallow study. To all those who still check in, thank you for your interest in how Luke is doing. It's great to know people are still thinking about him. Don't forget to sign his guestbook before you leave. Thank you.
To see more pictures you can go to the Snyder Family link at the bottom of the page. I'll be adding to that whenever I can since I can only fit 4 pics on this website.
Shelly
Thursday, July 6, 2006 2:18 PM CDT
Hey Peoples, There is nothing really new with Luke, he's starting to have a harder time breathing again but it's getting better. He still travels around the room lightning fast and is still happy and giggly. I hope y'all had a good 4th, thanks for checking in on Luke!
~Taylor:)
Friday, June 16, 2006 10:29 AM CDT
Happy 4th of July Everyone!!! Hello peoples!!! Mom is way too busy to update, so... here I am!!! Luke is a wiggle monster, he loves to move around. You can hardly get his diaper on and he's halfway across the room!!! On Tuesday Luke went to Brainerd hospital because he was having a hard time breathing. They drew blood and did a chest x-ray and found out that Mom and Grandma Shari got him there just in time!!! If they would have waited any later it would have turned into pneumonia!!! Clint gave them a ride home yesterday and the minute she set him on the living room floor he was all giggles and soooooooooooo happy to be home. When daddy got home from work Luke was soooooooooo happy because he was there!!! He was all smiley and giggly. I got some adorable pictures and their on the picture page if you want to see them!!!
~Taylor :)
Friday, June 16, 2006 10:29 AM CDT
Hello peoples!!! Mom is way too busy to update, so... here I am!!! Luke is a wiggle monster, he loves to move around. You can hardly get his diaper on and he's halfway across the room!!! On Tuesday Luke went to Brainerd hospital because he was having a hard time breathing. They drew blood and did a chest x-ray and found out that Mom and Grandma Shari had got him there just in time!!! If they would have waited any later it would have turned into pneumonia!!! Clint gave them a ride home yesterday and the minute she set him on the livingroom floor he was all giggles and soooooooooooo happy to be home. When daddy got home from work Luke was soooooooooo happy because he was there!!! He was all smiley and giggly. I got some adorable pictures and their on the picture page if you want to see them!!!
~Taylor :)
Wednesday, December 14, 2005 0:08 AM CST
Well, once again, it's been a LONG time since I've updated. To all those who check this website and wait for new pictures, I am very sorry I'm so bad at that. Luke is doing good. He was a big birthday boy around here recently. He turned one the day after Thanksgiving. It's so hard to beleive he's a big one year old now! It came so fast! I wanted to have a big birthday bash for him so bad but my sensible side took over and I decided to keep his birthday kind of quiet, but very nice. With all the sicknesses floating around already this year I think it was for the best. We celebrated Luke's birthday along with big brother Josh's (who turned 15 the day after Luke's birthday) with the grandmas and grandpas and a visit from Auntie Laura, Uncle Rick and Luke's godmother Auntie Julie. Even though Luke wasn't able to actually eat his birthday cake, he did enjoy picking off the decorations and tasting the frosting. He even did a little dance when we all sang Happy Birthday to him. It was a good day for Luke.
Luke happens to be "healthy" now but he's already had his share of colds this winter. Seemed like as soon as school started, the cold season hit at our house and Luke was sick and coughing. So we've had some tough nights but only one hospital stay back in the beginning of September when he had some kind of nasty bacterial respiratory infection. We've had lots of follow ups at the University with the ENT, Pulmonary and GI docs since October. Luke underwent an Upper GI test in November to check for reflux once again because he has so many symptoms of it. Also, his laryngomalacia has not improved much since we left the NICU so reflux is the suspected cause. Nobody ever knows for sure. Well, the Upper GI showed that part of his stomach has popped through the Nissen (tightening around his stomach) and into his chest where it does NOT belong. I guess that kids with respiratory problems are more likely to get this from the extra pressure in the diaphragm and so forth. So he will be needing surgery to correct it in January or February. The doctor thinks that maybe this could be causing some of his continued problems. We can only hope and pray that this is the "magical" answer. Time will tell I guess.
Luke's last weight was 20 pds. 9 oz. which was about 3 weeks ago so I'm thinkin' he's about a 21 pounder now. He's not breakin' any records or anything for the fattest baby in town (his cousin Lauren has that record) but we're very happy with his growth. He's a nice solid little load.
Developmentally, he's still lagging behind, but I think it's to be expected at least until his medical status improves. He still can't sit on his own but is improving with weight bearing on his legs. He now likes to bounce a little in his excersaucer. His physical therapist still comes out once a week to put him through and hour-long workout. Nap-time always seems to come shortly after she leaves.
Luke also has a new nurse, who just so happens to be Auntie Laura. Luke qualified for home-nursing care so we got one of the best nurses in town - Laura! It's been great having her help out with Luke and a releif just having someone else who knows the routine and how to run the equipment. Having Laura come over, I've been able to get some Christmas shopping done, run Taylor to her dance class and I've even been able to get a full night of sleep at least once a week - PRICELESS! Not to mention Luke is the best smelling baby in the world with all the baths she gives him. He does enjoy his bathtime! I think Laura does too. She does an excellent job with him and we're so happy to have her.
One year ago today, Luke had his first surgery and stents put in his nose. How uncomfortable that must have been for him! He's been such a tough little guy and I'm so proud of him. Thinking back to that time makes me realize how far he's come and how blessed we are that things are turning out as well as they are.
Jon's been running like crazy for UPS during the Christmas rush and doing lots of laser work the rest of the time. The kids are good. Josh likes high school and did well in a bowling tournament on Sunday, Taylor got straight A's on her report card and is busy getting ready for her upcoming dance programs and Alex loves going to preschool with his cousins William and Mason and is looking forward to his birthday party on Friday at Chucky Cheese. And we're all looking forward to spending Christmas TOGETHER this year at HOME. How blessed we are.
God Bless and have a very Merry Christmas.
Shelly
Monday, August 8, 2005 11:46 AM CDT
AN UPDATE!!!
Luke is good. He will be 9 months old already on Aug. 25th. It's hard to beleive! He was 17 pds. 9 oz. last week, so he's growing like a weed now. He's been having a pretty good summer. He doesn't get out as much as a typical baby but I don't think the heat agrees with him much. Progress has been slow, but there's been a pattern of two steps forward and one step back. So I guess we're going in the right direction. He's not requiring as much oxygen as 2 months ago so hopefully that continues once the cold and flu season hits again.
We did have a little scare with Luke earlier this summer. He narrowly escaped having a tracheostomy after a visit to the University back in June. It was recommended after a pulmonologist there examined Luke and CT scan showed that the right side of Luke's heart was working extra hard due to his breathing. He recommended we stay and have the surgery done the very next day. This was kind-of shocking and out of the blue for us (even though the idea's been mentioned to us before) so we decided to go home and think it over first. Prior to that appointment Luke had been having episodes of gagging and discomfort every 3 hours due to his feedings. This was causing a lot of extra stress for Luke and his breathing and was the main reason for that stay at the University in the first place. While we were there Luke was started on continuous feedings with a pump which has been like a miracle for him. He gets smaller amounts of food all day long rather than a full feeding every 3 hours. He is so much happier and is really showing his true colors now. He's such a good baby. Because changing to continuous feeding has made such an improvement for Luke, we avoided the trach, for now anyway. The tricky part will be getting through this winter without one. Colds are pretty hard on him. But we've come to realize that having a trach wouldn't be the end of the world, IF that's what he needs. It would only be temporary, but if we can get him by without it - Great!
On a happier note, Luke is jabbering like crazy! He said his first word, Da-Da, and he says it over and over and over again. OK, maybe it's just baby-babble but it's sooo cute! We're getting to hear a lot of his voice now and sometimes he even likes to holler instead of talk. He's come a long way since the days in the NICU when we couldn't even hear a squeak of his voice come out when he cried. Needless to say we all look like idiots around here because every time you turn around one of us is talking jibber-jabber to inspire Luke to do the same. He also gives hugs. When you get close to him he grabs on to your clothes or arm and lifts up and squeezes into you with his whole body like he's giving you a big hug. It's so sweet. He's really starting to move around now too, not crawling, but lots of rolling around. I can lay him in one spot on the floor and two minutes later he's nowhere near that spot. And we wake up to him in some funny positions in the crib, leg hanging out the side or he's backwards. He still struggles with sitting up on his own, which they tell me is to be expected, but we're working on that everyday. He not big on being held or sitting up, even with help. He prefers to be on his back and he lets you know. He can entertain himself for hours on his back with his toys, but it's not great for his lungs or his development so it's a challenge getting him upright throughout the day. Physical Therapy comes once a week to help him out. Luke is just such a joy to have around and getting more and more fun everyday. We love him to peices around here - literally. We have to remind the kids (and ourselves) to back off and give him space once in a while.
Well, thanks for the continued prayers for Luke and don't forget to check out the new pictures on the picture page!
Monday, August 8, 2005 11:46 AM CDT
AN UPDATE!!!
Luke is good. He will be 9 months old already on Aug. 25th. It's hard to beleive! He was 17 pds. 9 oz. last week, so he's growing like a weed now. He has been having a pretty good summer. He doesn't get out as much as a typical baby but I don't think the heat agrees with him much. Progress has been slow, but there's been a pattern of two steps forward and one step back. So I guess we're going in the right direction. He's not requiring as much oxygen as 2 months ago so hopefully that continues once the cold and flu season hits again.
We had a little scare with Luke. He narrowly escaped having a tracheostomy after a visit to the University back in June. This was recommended after a pulmonologist there determined that the right side of Luke's heart was working harder due to his breathing. He recommended we stay and have it done the very next day. We decided to go home and think it over first. Prior to that appointment Luke had been having episodes of gagging and discomfort every 3 hours due to his feedings. This was causing a lot of stress for Luke and was the main reason for that stay at the University in the first place. While we were there we started Luke on continuous feedings with a pump which has been like a miracle for Luke. He now gets smaller amounts of food all day long rather than a full feeding every 3 hours. He is so much happier and is really showing his true colors now. He's such a good baby. Because changing to continuous feeding has made such an improvement for Luke, we don't need to to the trach, for now anyway. The tricky part will be getting through this winter without one. But we've come to realize that having a trach wouldn't be the end of the world, IF that's we he needs, and it would only be temporary, but if we can get him by without it - Wonderful!
On a happier note, Luke is talking like crazy! He said his first word, Da-Da, and he says it over and over and over again. OK, maybe it's just baby-babble but it's sooo cute! We're getting to hear a lot of his voice now and sometimes he even likes to holler instead of talk. He's come a long way since the days in the NICU when we couldn't even hear a squeak come out of him when he cried. Needless to say we all look like idiots around here because everytime you turn around one of us is talking baby-babble to inspire Luke to do the same. He's really starting to move around now too, not crawling, but lots of rolling around. I can lay him in one spot on the floor and two minutes later he's nowhere near that spot. And we wake up to him in some funny positions in the crib, leg hanging out the side or he's backwards. He still struggles with sitting up on his own, which is to be expected, but we're working on that everyday. He is just such a joy to have around and we love him to peices.
Well, thanks for the continued prayers for Luke and don't forget to check the new pictures on the picture page!
Sunday, May 1, 2005 7:38 AM CDT
It's been a really long time since I updated. Sorry about that. Luke is doing good.
First, we want to thank everyone who came to and helped with Luke's benefit dinner last Saturday. Jon and I were amazed at the awesome turn-out and how hard our family worked to put it all together. We will always be grateful not only for the support we received but for showing us how much everyone cares about Luke. We will never forget what a special day that was. Thank you.
Luke had a 2-day hospital stay in Brainerd last week because of bronchiolitis and probable RSV. We brought him to the ER last Thursday night because he had been coughing so much all day. When we got him there the ER doctor was a little panicked about Luke's breathing and talked about putting him on the ventilator. I was worried about that and didn't think he needed anything that extreme yet. I think the fact that he has laryngomalacia and breathes loud and hard threw her off a little. I told her she should call his regular doc in (who knows what Luke's typical breathing is like) before she did anything like that. So she called in his doc and he put a screaching hault to all the chaos that was going on. He ordered a nebulizer treatment for him and said that he should be left alone for a while so he could calm down. They had been trying to get an IV in him since we had walked in the door. I wasn't sure why since he has the g-tube and can get fluids and meds right through that. Luke's doctor even said he wasn't dehydrated or anything. The nebulizer worked pretty well for him. He calmed down and quit coughing so much. We were then admitted to the pediatric unit. He ran a low fever that first night. The next day he was already improved but we stayed one more night just to be sure. Saturday morning we were discharged. Just in time for Jon and I to make it to Luke's benefit supper. I'm so glad we were able to make that. It's too bad Luke couldn't be there to meet everyone but we didn't dare take a chance on exposing him to anything else.
Luke has had several doctor appointments since I last updated. He had another renal ultrasound which showed that the spot on his kidney is gone. In fact, they're not sure if it was ever there in the first place. Go figure. The joy of technology. But it was really great news. His kidneys are growing good and functioning great. He still has just a slight case of hydronephrosis (enlargement of the kidneys) which is cased from the kidney reflux (his urine backs up into his kidneys and then back down before he pees). He should outgrow this before he's 5 or so. If not he'll have to have surgery at some point. It can cause a lot of urinary tract infections, but it's a good sign that he hasn't gotten any infections since his NICU stay. That delays surgery if he needs it. He's on an antibiotic every day to prevent infections. They want to do another renal ultrasound in June just to be on the safe side.
We also had an appointment with the surgeon that put in his g-tube (for feedings) and did his Nissen (to prevent the esophogeal reflux that he had). The surgeon thought he looked great and was quite impressed with how much he had grown since he saw him last. He's grown so much that he's outgrowing his g-tube too. He'll have to get a new one put in soon. We'll be going sometime in May to have that done. It's not surgery or anything. Just a matter of popping it out and putting a new one in.
Luke also had a sedated hearing test done. Turns out he has no hearing loss whatsoever. Jon and I were pretty shocked. I think we expected to hear that he had at least some hearing loss. We were told it was common with choanal atresia. Also, he failed a few hearing test in the NICU and he can sleep through anything. He must just be used to noise from the NICU or else his own breathing might just be hard to hear past. Or maybe he just had fluid in his ears too. Either way, he CAN hear!!! He can't fake us out anymore.
We follow up with ENT doctor in May also. He'll check in his nose and make sure that's staying open (he seems to breathe just fine through his nose) and see if there's any improvement in his voicebox.
A lot of good news for the little Lukester. He weighs just over 12 pounds now. I think his weight gain might have slowed down a little from the cold. He still coughs once in a while and seems to cough more with feedings. Not sure why. Maybe getting his g-tube changed will help. He's still "talking" and making lots of sweet little noises. He's starting to grab for toys more and more and his hands fascinate him. We're still working on better head control but that's coming along pretty well now too. He has more tolerance for being held up over my shoulder. I think he realizes it's kind of fun to look around at everything that way. We just hope and pray that he continues to do as well as he has been since we brought him home.
Thanks for checking on Luke. I will try to be a better updater-er!
Shelly
Sunday, March 27, 2005 9:43 PM CST
Luke had a really good first Easter. I am so thankful that we were home to celebrate it with him. The Easter bunny was good to Luke and brought him a book with colorful animal pictures and bunny socks that light up. He also got a chocolate bunny but since he's not into sweets yet someone around here will have to help eat his. Don't think that'll be a problem. His brother Alex has no trouble in the candy department. Jon and the kids went to Joel and Robyn's for Easter dinner. Luke and I stayed home. We're just gonna give him another month or so before we take him out. Flu season should be about over by then and the weather should be pretty nice. My mom and dad came over for a late Easter dinner so Jon and the kids got to pig out twice. Luke is really starting to "talk" and coo a lot. We can hear a lot more of his voice now too. Hopefully that's a good sign that things are getting better in his voicebox. We brought Luke in for a checkup last Thursday. Everything is going good and he weighs 10 pds. 9 oz. He's starting to grow like a weed. He was due for his 4 month shots so he got those. He was more tired and fussy for a couple of days after and he ran a slight fever but he seems better now. Luke also got to hang out with his new little cousin Simon on Friday. They were very well-behaved, but just wait a couple of years! That little Simon is a cutie. Well, I hope everyone had a wonderful Easter! I know I couldn't be happier to be home for a holiday. God Bless!
Shelly
Saturday, March 19, 2005 10:45 PM CST
Luke is settling in nicely at home. He seems to like it here. He doesn't get poked and picked on at home. He enjoys all the attention he gets from his brothers and sister. We are starting to see more and more smiles out of Luke and he is really starting to coo and talk to us a lot. It's so cute. He's got his schedule down too. Mornings are the happy awake times, catnaps in the early afternoon, fussy time anywhere from 3-6:00, and then around 7 he's out for the night. That is until about 4-5 AM anyway. We just need to work on keeping him up until around 9 or 10:00 in the evening and we'll have it made. We still feed him about every 3 hours through his g-tube like we did in the hospital. We're not quite as strict about the time as they were there though. I try to feed him a little under 3 hours during the day that way I don't feel bad if he goes longer than 3 hours at night. Then I know he's getting enough. He usually doesn't make it past 4 hours without a feeding before he lets you know he's good and hungry. He still likes that pacifier which is great since he isn't used to sucking on a bottle for feedings. I have tried the bottle with him but it still isn't too successful. He sucks on it great but as soon as he gets a mouth full he panics like "What am I supposed to do with this?". Not sure if he has trouble swallowing because of his laryngomalacia and his breathing interferes or if he just doesn't get how to swallow since he's never had to. Time will tell I guess. I'm hoping that maybe he'll just do better when the time comes for cereal. That doesn't seem too far off. He found his tongue and is always sticking it out and moving it around. Looks funny. Seems like he's noticing his hands more too. He's always moving his hands around and feeling his blankets. He likes to clasp his fingers together. He does it just perfectly sometimes. It looks like he's praying. Unfortunately he got a cold last week so he's been coughing more and there's more green goobers in his nose, but he's handling it really well and it hasn't seemed to affect his breathing too much. All in all, I'd have to say he's a pretty happy little boy considering everything he's been through. He has his fussy times but I don't think any more than a couple of my other kids.
He had an appointment last week with his ENT doctor back at Fairview. The doc went in his nose and throat with a scope and said everything looked good and that his larynx even looked a little better than the last time he checked. I think the next time we go back to the University is on April 5th.
Thanks for checking in.
Saturday, February 26, 2005 9:09 PM CST
It's so good to be home!!! After all the waiting, Wednesday was our big day to come home.
Jon and I decided not to send Luke for surgery again. The ENT doctor came and talked to us on Tuesday and recommended waiting. He said Luke is a mild to moderate case of Laringomalacia (correct spelling this time), which is the voicebox problem, and if it were his baby he would wait and give him time to outgrow it, which they all do. Well, that was good enough for us. He is still having apnea episodes but he always pops himself out of it. No one's had to intervene. Hopefully as he outgrows the malacia he'll quit having apnea spells too.
We also found out that the spot on his kidney is still there and unchanged. They're still not sure if it's stones or calcium or something, so we're just going to follow up. His kidney function is good according to his lab results, so that's the most important thing. He is taking oral anitbiotics until Wednesday for the urinary tract infection he had, which is gone now. He'll need to still be on an antibiotic every day to prevent any other infections. He'll be prone to getting these since he has reflux in his kidneys. Also something most babies outgrow but it can take until age 5 before they do. If he hasn't outgrown it by then, they'll do surgery to fix the reflux problem. If he gets recurring infections, they'll do the surgery sooner.
We were sent home with tons of equipment. It's like our very own NICU around here and our house just ain't that big. Most of it we haven't needed, but we do rely a lot on the oximeter monitor. This tells us Luke's heartrate and oxygen saturation. Both of those go down when he has an apnea episode or if he's just breathing to shallow when he sleeps. The thing beeps a lot and is very annoying, but also a necessity for either of us to get any sleep. Any time his oxygen saturation is below 90 percent it beeps and when he sleeps sometimes we wonder if Luke's purposely keeping it at 89 percent just to keep us hoppin'. Any time he coughs Jon is right there standing over him with the blue bulb suctioner like it's some kind of weapon or something. I like to just watch him and see how well he can handle it on his own and then help if he needs it. But I guess it never hurts to be too cautious. He still sounds like he's got a bad cold but from what I've read that can last a while. And besides, it's just noise. Noise means breathing for him. It's when he's really quiet that I get nervous. And he does sound quiet sometimes. Especially when he's sleeping. That is definitely progress.
Luke is adjusting well to his new surroundings. He's getting lots of attention. He is really showing us some smiles since we've been home now too. He loves his crib mobile and follows the animals going around. The whole time he's watching he's moving his arms and kicking his legs. He looks like he's riding a bike. He gets so excited! It's going a lot better than I thought it would. Yes, he keeps us very busy but it's nothing we can't handle on our own. The kids are so happy to have him home. Josh and Taylor want to hold him all the time but we're a little germ-fearful right now. Alex is a little attention-needy but that's to be expected I guess. If he doesn't get his way, he buries his head in his hands and runs out of the room crying like a little drama queen. It's actually kind of funny and cute. But he doesn't hold anything against Luke, he really loves him and is proud to be the big brother. The kids have been a really big help. I really missed them!
We just want to say how grateful we are to everyone at Fairview who took such good care of Luke, especially his primary nurses Carla and Emily. They really cared for Luke beyond nursing and became close friends to us at what has been very difficult time. There was always comfort for us when Luke was in their hands. Thank you both so much!!! We're glad to be home but we will miss you. We hope you'll keep in touch.
It isn't the end of hospitals for us. There will be many follow ups with many specialist and doctors, starting next week, but that's OK as long as our family is together and Luke is getting better. I am just so happy we're home and all under one roof!
Please keep checking in for updates and pictures and don't forget to sign the guestbook. Luke loves to hear from everyone. Someday he'll know how many people love him and prayed for him when he really needed it and what a special little baby he was.
God bless you all.
Shelly
Thursday, February 24, 2005 11:34 PM CST
We are finally home... Thank you God and thank you all for your prayers that brought us here.
We've been busy but Luke's doing well and we will continue to update from home.
Shelly
Monday, February 21, 2005 11:41 PM CST
Hi everybody. I'm so sorry we haven't been updating very much lately. I spend most of my time cooped up in a little hospital room with Luke, but enjoying every minute of being closer to him. Luke decided to kick the IV out of his foot the other day. So, luckily we were close enough to the end of his antibiotics that they just switched him to oral antibiotics instead of poking him with a new IV. He's had enough pokes, so I was happy about that. Tomorrow we'll find out the results of the ultrasound he had done today to see if that "white spot" on his kidney has gone away or decreased in size. If not, then I don't know what's next. Also, he might be having surgery again on Wednesday. All these surgeries must just sound crazy to everybody, but he's still been having apnea and it's definitely because a flap in his larynx blocks his airway. We're going to talk to the ENT doctor tomorrow to decide whether or not Luke's going to have the surgery. We've heard that there are usually very good results afterward as far as the breathing and apnea and all that noise! Our only other option is to let him outgrow it. Not sure which way we'll go yet. I just pray we make the right decision for Luke. Other than all that, he's been doing good and has smiled a couple of times, which made our day! He's up to about 8 pds. 12 oz. now. I think he carries six of those pounds in his cheeks! Sorry I have not put any new pics on the website. I always used to do that at the Ronald McDonald house and now that we don't stay there I have to use this old computer in the parent lounge. Hope to be home soon and I'll be happy to post new pictures often. Oh yeah, Luke said to tell Auntie Kim thanks for visiting the other day. We'll try to get better at updating in the future. Thanks.
Shelly
Monday, February 14, 2005 5:18 PM CST
Hello,
Luke is now over 8lbs and looks very good. Luke is getting his antibiotics every eight hours, other than that and the ocasinal weighing he is left with his mom in the room. He has a pretty good temperment and sleeps about 15 to 17 hours a day. Craps alot and lets you know when he'd like to be changed in case you missed the sound of the explosion. If he is starting to go to sleep and see's any movement up close or far away he will POP his eye's open CRANK his head around and try to find you! We thought he gave us his first smile yesterday but were not sure I think he's playing mind games with his mother who has been trying to get one ever since the first time she held him. He likes to doze off into dream land and smile like crazy so we know he has it in him, just not for us yet. Well not much else to tell other than eating, changing, weighing, playing, oh and the best feeling in the world, Love..
Friday, February 11, 2005 10:47 AM CST
Well, we are still here. Surprise, surprise. I'm starting to think they all like Luke so much that they're never gonna let us out. So, here's what happened... Tuesday morning, we're getting ready to go home. Everybody's telling us today's the big day. Jon had just went out to buy a car seat since we hadn't brought ours from home yet and didn't want to drive 6 hours just to get it. I was starting to pack things up and I heard the docs and nurses in the hallway doing daily rounds. So I thought I would listen, like I usually do, to Luke's report. They started in with the usual medical jibber jabber when someone came up and said the lab had just reported some bacteria in Luke's urine culture. So, from there started all the apologies because we would have to stay at least 5-7 days to treat it with IV antibiotics. I was bummed about not being able to go home, but even more bummed about him having something else to deal with. Now, that 5-7 days has turned into 2-3 weeks, just to be on the safe side, so I am getting as comfortable as I can in the little hospital room with Luke and not counting on anything for sure at this point. The urine culture was done because they had done a kidney ultrasound that showed a "white spot" on one kidney. They were worried that it might be fungus so they started with some urine cultures. Well, a couple of days went by and no fungus, which is really good. Fungus is hard to treat. So, they figured it was safe for us to go home. Until the bacteria showed up. The bacteria is basically a urinary tract infection. It's better than fungus but we still have to stay. They're still not quite sure what the spot on his ultrasound is. I've heard it could be sludge, whatever that is, but it's nothing to worry much about. It could be stones, which could clear up with the antibiotics he's on. It could be calcium, but it doesn't look like that. Or it could be scar tissue, which from what I understand, wouldn't go away, but wouldn't affect the function of the kidneys a whole lot. It's a new spot because Luke had a kidney ultrasound in Jan. and it wasn't there. They are doing another ultrasound on the 22nd, which will be 2 weeks on antibiotics, to check the spot and see if it's decreasing or gone. If not, count on another week of antibiotics. Because Luke has reflux in his kidneys, he might be more suseptible to urinary tract infections. He will have to be on oral antibiotics at home until the reflux is gone. He should outgrow the reflux, most babies do. If not, then surgery. He wouldn't need this until he's older unless he has a lot of UTI infections before that. Luke's blood pressure still runs a little high, which was the reason for doing the ultrasound, because the kidneys regulate blood pressure. Not sure what to make of his blood pressure. We get a lot better blood pressure readings when he's sound asleep, so maybe they're just not accurate when he's awake and moving around. Or maybe it is higher when he's awake because he's aware that he's working hard to breathe again. Not sure, just guessing. He's still pretty congested and is a noisy breather off and on. But sometimes you can hardly hear him at all and his breathing sounds "normal". He just keeps us guessing. But on the bright side, it's been fun staying with him. I can lay with him on the bed and play with him more. He just loves attention. Jon and I are getting the hang of his feedings with the G-tube and all. It goes pretty well. He's up to 7 pds. 12 oz. now and they just increased his feedings. He gets fed every 3 hours. He goes through lots of diapers. He's quite the little pooper. I'm enjoying spending my days with him even if it's not at home, but I sure do miss my other kids and doing normal family stuff. Please just pray that nothing new comes up as we wait for the antibiotics to run their course and that they do the trick and kick the infection. We want to come home! Well, that was chapter 28 in the book of Luke. Thanks for all your prayers, keep em' coming.
Shelly
Monday, February 7, 2005 4:03 PM CST
Hello,
Yes you are correct, if I'm updating we must still be here. We should be on our way home tomorrow. Luke is doing well today and is still getting the "He's so cute" comments from the nurses. The Doc's tell us we will have to careful about germs with Luke for while. So everyone who comes to see Luke will have to pass MY twenty questions and inspection. Anyone who has been around someone sick or feels sick or even looks sick (sounds like everyone I know) will not be able come in the house. You are more than welcome to come and visit us thru our full length solid glass screen door, hey the nicer the day the longer we can visit. I will even set up a set of table and chairs with a coffee maker. Just bring your own water because everything is froze up outside. We can't wait to get home and see everyone, and spend some quality time with our whole family at home. Thanks again for everything, Jon
Saturday, February 5, 2005 10:11 AM CST
Hello,
Luke is doing very well, the word on the street is Luke will be checking out of here on Monday. Luke still has noisy breathing but can keep his numbers where they should be almost all the time. It will just take some time for him to grow out of the voice box thing, so I guess we will keep him! Now we can do more of the things that should be done with babies like dangling him by his feet and showing him wrestling moves. Thanks to everyone for there thoughts, prayers and gifts,
Jon
Wednesday, February 2, 2005 10:07 PM CST
Luke's surgery went really good today. The inside of his nose looked great so they didn't have to do anything there. His voice box is still swollen and they say it's a little immature, which means it's kind of floppy. It's called laryngual malaysa (excuse the spelling). They feel that all his problems are coming from this and also because he's not swallowing all his secretions yet. Over time this will gradually get better as he grows. We have already seen a lot of improvement in him. Tonight, Jon and I were in visiting him and he was so calm, just looking at us, so close to smiling too. You would never know he just had surgery this morning. His breathing is so nice and quiet when he's calm and we heard his voice again tonight. It's so cute. The discharge planner is getting things lined up for us to... (do I dare say it?)... go home. We are actually starting to beleive it now. Sounds like if he doesn't have any set-backs (we pray he doesn't) then maybe after this weekend we'll be going to the west wing. That's where I'll stay in a room with him all the time and pretty much be the one taking care of him. The nurses are always right outside the room in the hallway and he'll still be hooked up to monitors so they can still keep a close eye on how he's doing. It'll be a good transition for us before taking him home and going solo. We are both just so happy with how things are going right now. Looks like all the prayers for Luke have really helped him. We hope to come home soon!
Shelly
Tuesday, February 1, 2005 6:49 PM CST
We're so happy with how well Luke has been doing over this last week. Every day just seems to be better for him. They haven't had to catheter suction him in days and they only bulb suction him a couple of times a day. His apnea episodes seem to be getting less frequent and shorter. His weight is up to 7 pds. 6 oz. now. He sleeps quite a bit and is more happy and content when he is awake. And yesterday, we actually heard his voice! Maybe not everyone knows, but when he cries, his voice is hoarse so you can hardly hear him. This is from his voice box and vocal cords being swollen. Yesterday, while the ENT doctor was looking at him, he cried and we heard his cute little voice for the first time since he was born. Jon and I looked at each other with big eyes and Jon said, "Pack you're bags, we're going home!" Kidding, of course. The doctor just said, "I like that cry." But, the reason we met with the ENT doctor is because he's going to look at him again in the O.R. tomorrow. Primary reason is to look for a cause of the apnea he's been having, and to see how his voice box is looking. If necessary, he'll do a simple procedure on his voice box to open it up more. Also, he'll be looking inside his nose again to make sure the openings aren't narrowing at all. If they are, he'll fix that tomorrow. I really don't think he'll have to do anything with his nose. He seems to be breathing through it just fine. The problem seems to be lower in his airway. I just hope and pray that this doesn't set Luke back much. He's been doing so well. His surgery time is scheduled for 7:30 tomorrow morning so he'll get his last feeding tonight at midnight. He is NOT going to be happy about that. Tomorrow's another big day for Luke so please pray for him. Thank you all.
Shelly
Sunday, January 30, 2005 12:55 AM CST
Hi. Luke's last couple of days have been really good. Yesterday he was wide awake for a couple of hours. He was so happy and content and just loving all the attention we were giving him. His breathing seems easier too. He still has little apnea episodes, but I've been watching him and he only does it when he's sleeping. It usually happens when he's in that goofy state of sleep where babies flutter their eyes and smile and then frown and act like they're dreaming. Then, a minute later he'll be sound asleep, not doing it at all. So, to me, it seems like his apnea spells are more sleep-related than respiratory-related. Not sure if that's a good thing or a bad thing but I'm gonna run it by the doctor on Monday. I don't think the doctors realize that it doesn't happen when he's awake.
He's up to 7 pds. 2 oz. now so he's finally growing good. He's still newborn size but he's changing so much that he sure doesn't seem like a newborn anymore. He's so bright-eyed and content (when he wants to be). Grandma Shari is rocking him right now and he just fell asleep, so I think they're both enjoying that. He just got a full tummy so he might keep Grandma in that chair for a while! I'm enjoying having the kids here again this weekend. It's always hard to see them go back on Sunday though. I just keep hoping that maybe it's the last time they'll have to come visit us here. Even though the kids don't seem to mind coming. They think staying at the Ronald McDonald house is like a big vacation. There's definitely plenty for them to do here. Josh likes to try to kick everyone's butt at pool. I personally prefer to play Pac-Man in the arcade. We keep pretty busy between visiting with Luke and all the other things there are to do.
Thanks for your thoughts and prayers. New pictures soon to come!
Shelly
Friday, January 28, 2005 11:35 AM CST
Hi. Luke is doing well today. The echo they did on his heart yesterday showed that everything looks good and normal. Which is awesome but still leaves no answer as to what is causing his breathing issues. When I came in this morning he was a little fussy so I held him and he calmed right down. The only problem is, when he's calms down then sometimes he goes into having little episodes of no breathing until he catches himself and takes a big breath. The good thing is that he does catch himself on his own. Switching his position did seem to help so he didn't do it as much. Nobody's too sure what is causing it. It even has the doctor scratching his head a little bit. Next step is to get together with the ENT doctor who did his surgery to try to come up with a solution. Sounds like they might want to do another bronchoscopy to take a closer look at his airway. The only other thing they can think of is that it's something neurological, which the doctor doesn't seem to think it is, but they may have a neurologist take a look at him just to cover all the bases. They also say that he might just need more healing time since it's only been a week since his surgery. Hopefully that's the case and he doesn't have to go through anything more than he already has.
I'm really looking forward to having my kids come visit this weekend. Hopefully it's a good weekend for Luke too. I know Luke is looking forward to getting to see his Grandma Shari and Grandpa John too.
Just want to thank everyone for signing in Luke's guestbook. I printed off his guestbook so I'd have it for his scrapbook and I think I used a whole tree in the amount of paper it took. It's so encouraging to know that everyone is thinking of him and praying for him. Someday he'll be able to look back and see how many people love him.
Shelly
Thursday, January 27, 2005 3:49 PM CST
Hi everybody. Sorry it's been so long since I updated. Most of my time lately has been spent either with Luke or sleeping and I haven't been doing much else. I did manage to sneak home for a day to get some things ready for Luke at home. Still not sure when he gets to come home though. He still has some breathing issues going on and they're still trying to get to the bottom of it. They did a 12 hour study on Luke's breathing and how he exchanges gases in his body and it showed that he has episodes where his breathing pauses, and then he takes a big "catch-up" breath, which we already knew. I've seen him do it many times. All babies do this sometimes, but for Luke, they feel like there's some type of obstruction in his airway that's causing it. Yesterday morning they did a flouroscopy test on him (excuse my spelling) to see if he had weak trachea walls that sometimes collapse. The test showed he doesn't have this, which is great, but leaves us without an answer again. Next thing they want to do is another echocardiogram on his heart to look at his valves to make sure they're working right and that his breathing isn't taking a toll on his heart in any way. The doctor doesn't think this is likely but it's something they have to check for. They've been giving him nebulizer treatments to help break up the "goobers" and that seems to help. It's a possibility that he just needs a little more time too. The goobers do seem to be getting less and less everyday. And sometimes he sleeps so peaceful you wouldn't even know he had any breathing issues.
His feedings are going well with his new G-tube. He's pooping quite a bit though so he has a sore little butt right now. He now weighs about 6 pds. 14 oz. which isn't a real big weight gain since birth but considering everything he's been through, it's pretty normal. Hopefully now we can get him growing more which should also help his breathing. He still loves to suck and just about sucked my pinky off today. He's also been noticing that his hands are good to suck on. The other day he was smacking on his t-shirt sleeve. As soon as his breathing is easier for him I'm sure he'll be anxious to eat the right way.
Luke got to be held by his Grandpa Jim last night. I think he enjoyed it since he was out like a light the whole time. Grandpa Jim was a little tense, but I'm pretty sure he enjoyed it too. Luke hasn't been quite as fussy as he had been over the past week. He has more periods where he's awake and happy just looking around. His eyes are starting to turn dark brown and his eyelashes are getting long and curly. The nurses all melt over his big dark eyes when he's awake. Overall, he looks good and he seems to get a little better each day.
Thanks for checking in and please pray for easy breathing for Luke.
Sunday, January 23, 2005 7:31 PM CST
Hello everyone,
Luke has had a couple of very good days. He likes to wake up at about 3:00 am and stay up until 8 or 9am. So we have not been able to see his big bright eyes that much. He sleeps most of the day. He is up to full feedings now and doing very well with them. His breathing seems to be better and he is able to handle his secretions more and more every day. Thing are going very well,
Jon
Thursday, January 20, 2005 3:16 PM CST
See the journal history for today's update.
Thursday, January 20, 2005 2:21 PM CST
Well, surgery went good for Luke this morning. No complications, everything went just like it was supposed to. They tightened up the area where the esophogas and the stomach meet which will prevent any reflux from now on. This will let the irritation and swelling in his airway heal. He also had what's called a gastrostomy button put in. From the outside it looks like a little flap that you can open and close. There's a little hole in the button that leads into his stomach. You just attach a tube to the hole for feedings and when you're done, take the tube out and close the button. So, no more feeding tube down his throat. The button won't interfere with anything. He can still lay on his tummy and have regular baths. He probably won't even notice he has it. This is just a temporary thing for him until he gets up to full feedings by his mouth his and gets his respiratory issues under better control. Removal of it later on is pretty simple and it heals quickly so they would rather leave it in a little longer just to make sure he's done with it for sure. It sounds like they might try his first feeding with the button tomorrow night sometime. In the meantime he's just getting fluids.
While he was in surgery, the ENT doctor also took a look at him. He said his nasal passage still looked great and there was no scar tissue growth yet. He felt like this was a pretty good sign and it's quite possible he may not need any further surgeries for his nose. So that was great news!
Luke is still on the ventilator now. They will probably let him wake up more slowly and take him off of it tonight or tomorrow morning. In the meantime he gets a little morphine so the tube doesn't bother him too much.
Luke is such a good little trooper the way he's handled everything he's been through. I hope he has a speedy recovery so he can move on to doing "normal" baby things! I can't wait to see a happier, more relaxed little Luke.
Tuesday, January 18, 2005 3:09 PM CST
Luke was a little fussy this morning but they stopped his feedings at 6 AM for his upper GI test again. Didn't happen yesterday because they didn't stop his feeding in time for his appointment. So, Luke had the upper GI test done this morning. Turns out he does have "significant" reflux so this is probably causing his problems. He will be going for surgery again Thursday morning. Seems to be a weekly thing for him. The surgery is to help his reflux problem by tightening something up down by his stomach so he doesn't reflux so easily. Sorry for the lack of details, I just don't know how to explain it that well yet. I do know it's not an uncommon surgery down here and pretty low-risk. He will also have a GI feeding tube put in by his stomach at that time. This will make it so his upper airway is free and clear of tubes and feedings will be easier on him. We'll be able to get him home sooner and make sure he's getting all the milk he needs to grow good while he adjusts to feeding the right way at home. The tube will have to be surgically taken out when he doesn't need it anymore. I guess normal recovery time for the surgery is about a week but that's not taking into consideration his other respiratory issues (his goobers). And to think, when I was pregnant I made a list of baby supplies I needed and I didn't put a bulb suctioner on it because I thought, no, you never use those things very much. Little did I know I'd be having a goober-boy! It sounds like when we go home we'll be bringing a monitor with us so we can sleep at night without worries. (Don't think that will happen, even with the monitor) We have a class to train us for that on Friday. Even though we're not going home tomorrow or anything it's nice to hear them talk about "when we go home". Seems like they're talking about it more and more these days. I hope we're getting closer to the end of this little journey we're on. I'm ready to go home where I can have ALL my kids under one roof! Luke is sleeping pretty peacefully now so he's getting a good nap. Hopefully he's in a better mood when he wakes up. He does LOVE that pacifier. It's good to see there's no problem with his sucking ability. He practically devours it! Looks like I'm gonna have another binky-baby. Thanks for checking in. Please send some extra prayers for Luke the next few days so that all goes well for him.
Shelly
Sunday, January 16, 2005 2:52 PM CST
Looks like another good day for Luke today. As usual he was a little fussy this morning when we came. I held him for quite a while which calmed him down. He's been sucking a lot on his pacifier. When he accidentally pops it out he gets mad and searches for it by moving his head from side to side. He's able to suck on it for a long period of time now. Before, he would get too excited and couldn't catch his breath while sucking on it. Now he sucks on it for a while, then pauses and breathes through his nose, while keeping suction on the pacifier. His little peepers finally closed after calmly listening to his mom and dad talk to him for about an hour. He really seems to like daddy's baseball cap and the big square light fixture on the ceiling. We just checked on him and he's "sleeping like a baby". He looks just like Grandpa John when he's sleeping, the way he blows a little air out through his mouth each time he exhales. It's so cute. This is probably the most relaxed we have seen Luke and we're more relaxed too enjoying no monitors going off. Seems like the next step is to get him eating the right way. The way he handled his pacifier today, I don't think that will be too far off.
Tomorrow Luke will have an upper GI done to see if reflux is causing some problems for him and if so, how much he is refluxing. This will tell them how to treat the swelling in his voice box. It's a simple procedure and Luke probably won't even know they're doing it.
Things are really looking up the last few days and we are cautiously overjoyed! Thanks for all your thoughts and prayers.
Jon & Shelly
Saturday, January 15, 2005 2:39 PM CST
Well it seems that Luke's fussy time is in the morning. After a very peaceful evening last night, Luke decided he was going wake up in the middle of the night again. Seems to be a pattern with him. He was awake and happy off and on throughout the night. He had been up since this morning at around 7:00 testing the nurse's patients from time to time. At about 1:00 I laid him in his crib, he laid awake and looked around for almost an hour before he finally fell asleep. I think he liked looking at the sunny window in his new room.
The nurse just came in to get shelly to hold him, he woke up again. He slept alot the last couple days and is making up for it now, he is to the point where he is a little over tiered I think. Although it is nice to see his bright(but sleepy) eyes looking around. Luke is needing less suctioning the last couple days and hardly ever sets the alarms off lately. Hopefully this trend keeps up and this roller coaster is getting closer to the loading dock. It has been a busy week around here, there are alot of new parents faces. Thanks for remembering Luke in your thoughts and prayers, they help alot!
Friday, January 14, 2005 8:53 PM CST
Hello,
Luke had a very good day today. He looks very good and very cozy.
Jon
Thursday, January 13, 2005 7:47 PM CST
Hello all,
Luke's night was pretty good. He also had a good morning before surgery, besides the fact that he was hungry (they stopped feeding him at 4:30 AM for surgery). Last night they retreived a big goober from his nose and since then he has been doing better with his breathing. He went to surgery at about 12:00 and was out at about 12:45. He did very well and the Doc. said everything looks good. His voice box is still swollen but his nose is healing nicely from his last surgery a week ago. The swelling in his voice box could have been caused by the ventelator and/or all the suctioning he's had. Luke has been on the ventelator since he came out of surgery. They are giving him a chance to rest and catch up from surgery and the last couple of days before removing it tonight or tomorrow morning. The doctor said he thinks things are going well and he is just waiting for Luke to "turn the corner and take off", so are we!!!! It may take a little time for the voice box swelling to go down. The doctor thinks reflux could be the causing irritation to his voice box. Reflux is very common in most babies and they are going to check Luke's acidity in his reflux (reflux is when milk comes back up from the stomach). If his is acidic that could cause his voice box to stay irritated or swollen. With the swelling, it makes it more difficult for him to swallow and breathe through. All in all things look good and we just have to give it some more time.
Jon
Wednesday, January 12, 2005 4:14 PM CST
Hi. Sorry it's been a couple of days since I updated the journal. After a really good weekend, Luke's last couple of days have been a little tougher for him. For some reason his breathing has gotten more difficult and he has been needing more oxygen under his hood. Doctors aren't sure whether it's caused from nasal tissue regrowth, swollen voice box, reflux from his feedings or all the secretions he still has. Maybe a combination of everything? Poor little guy has a lot to deal with. Sooooo, the ENT(ear,nose,throat) doctor wants to take another look at him in surgery again tomorrow morning. He'll remove any tissue in his nose that might have grown back, if any, and check to see if he has any narrowing back there. If he finds any narrowing he will probably have to put stents back in his nose. Not exactly how we want it to go, but if that's what it takes for his airway to stay open then that's what it takes. He'll also take a good look at his larynx and see how the swelling looks. He warned us in the beginning that this is usually how it goes. He did say that we'll definitely get him there, it's just gonna take some time. If he doesn't find any major issues tomorrow with his airway, then we'll probably have to check deeper into this reflux thing. I guess a lot of babies have it, but combined with his other issues it could be causing his problems. We'll just have to see what tomorrow brings. His hemoglobin has been on the low side. They gave him some blood today, so he'll be good for tomorrow. I guess low hemoglobin can also cause higher oxygen needs, so I'm sure that doesn't help either.
On the brighter side, I talked to a former "NICU Mom" through the Parent to Parent program they have here. She told me her son's story and I told her Luke's. Then she told me how familiar Luke's story sounded. She has a friend who has 5-year old daughter who was born with bilateral choanal atresia, just like Luke. (Coincidence? I don't think so) I asked if her friend would be interested in giving me a call sometime and she thought she would. That night when I got back to the room, her friend had already left me a message. So I called her back and she told me her daughter's story. A lot of similarities. She said you would never know today, all she had been through when she was a baby. She's a healthy, happy little girl. That was so good to hear! I'm so grateful I was able to talk to her. She was really reassuring and she gave me a lot of good tips. I hope to keep in touch with her.
Thanks for checking in and please pray all goes good for Luke again tomorrow!
Sunday, January 9, 2005 8:57 PM CST
Luke is doing great. He seems to be getting a little better every day. Today he woke up around 7 AM and stayed up (other than a few catnaps) until around 3 PM. A little different than yesterday. Yesterday he slept almost all day. He was very happy looking at his stuffed animal friends and just waited to be talked to. He got lots of visitors today. Josh, Taylor and Alex came with Grandma and Grandpa Snyder and Dale and Ginny came with the Haman crew. Ginny got to witness Luke's wide-awake happy side but he started to get tired shortly after that and decided to sleep when everyone else was in to see him. He's doing well with his feedings and today I even nursed him a little bit. Then he zonked out and was still sleeping when we checked on him just a little while ago. He still sounds a little rattly but we are told that is to be expected and it may take a while for that to totally clear up. They are still needing to suction him sometimes but it's getting to be less each day. Next step will be to wean him from tube feeding to nursing or bottlefeeding. Today was the first step. Hopefully it will continue to go well. We are happy with how things have been going since Luke got his tubes out and it's been so much fun to see his big bright eyes looking up at us. That pretty much sums it up. I guess I better go visit with my other kids that I missed so much. Thanks John and Shari for bringing them here. Hopefully next time we'll visit you at home.
Thanks to everyone, once again, for all your thoughts and prayers.
P.S. - Hope your feeling better "Uncle Butch"!
Friday, January 7, 2005 11:18 AM CST
Hello,
Luke was taken off the vent this morning at about 9:30.
He is doing very well and breathing nicely. The respertory doctor says he can move air very well in and out. He also said his lungs are working great. He was awake and looking around when we came in at 9:45. The nurses said he was up all morning and wanted to get the tube out. He is sleeping now. Luke has a little learning experiance ahead of him on how to breathe and is doing very well at it. Then it will be time to eat today at about 1:00, we are not sure if his mom will feed him or by the tube. I think it depends on how he does over the next couple hours. He hasn't ate since yesterday morning. He is sucking on his upper lip so it is hard to get a nice picture of his handsome face. If you see a picture on here where it looks like he has no upper lip its because he ate it this morning... lol
Jon
Thursday, January 6, 2005 2:30 PM CST
Hello all,
Luke's surgery went well today and he is here back at the NICU. He is on the ventelator and resting nicely. They are going to let him rest today and wean him off the vent. The surgeon said "it went well and Luke is doing well". While the surgeon was doing the surgery he also looked at his vocal cords and breathing passage way all the way to his lungs with a scope, all looks good here also (thank goodness). His voice box is swollen which he said can be expected after all he has been through. They are giving him steroids to reduce this swelling. When they took the stents out of his nose some scar tissue had grown around the tubes where they entered in his throat which could explain his "spells" the last few days with keeping his oxygen level up. This was also expected and will probably happen again. They will look again in a couple weeks and see if they are staying open, most of the time this procedure needs to be done 3 to 4 times. Today or tomorrow Luke will be able to breathe through his nose without any form of aid or contraption for the first time.....
Thanks to everyone for all your support and prayers!
Jon and Shelly
Wednesday, January 5, 2005 4:43 PM CST
Well, tomorrow's the big day and I think Luke is very ready! The nurses all say that he's a very good-natured little baby to have tolerated the last 3 weeks with tubes stuck in his nose as well as he has. He's had an OK day today with a few more episodes where his oxygen level and heart rate dips down. I just hope that all this gets better after tomorrow. Everyone here seems to think it will so I'm counting on that! They did all his lab work today for his surgery tomorrow and everything looks great except that his hemoglobin is a little low, but they're not extremely concerned about it. He's always kind of been on the low side. He also moved next door, to a quieter room in the nursery today so he'll be able to rest and get better. He seems to like his new little corner. Luke was so cute today. He was sucking and smacking on his feeding tube. He's got the most adorable little mouth. He also likes his glow worm he got for Christmas. It lights up and has a cute face and he was really checking it out. Please pray that everything goes well for Luke tomorrow and over the next week. I think Luke, along with everybody else, is ready for him to come home. It is definitely long overdue. The more prayers - the better! Thank you all.
Monday, January 3, 2005 3:45 PM CST
Hello everyone,
Luke is having a very restful day, sleeping most of it away. We would like to say THANK YOU to all the nurses that have taken such good care of our son. The support and the skilled care that Luke has been given at Staples, St Cloud and here at Fairview has been the very best and we are so very grateful. There is no way that we can express our gratitude for the care Luke has received. We would also like to say THANK YOU to our family who has been more than supportive and helped us in so many ways such as taking such good care of our kids. We are waiting for Thursday to come so we can hopefully start the process of going home. Shelly says Luke looks extra handsome today and very kissable (dad thinks so too). We are getting very anxious to get home and enjoy our new bundle of joy with our family.
Jon
Sunday, January 2, 2005 7:30 PM CST
Hello everyone,
Luke was wide awake today for a few hours. He was held by his mom and was really checking her out. The nurses say they have seen him smile, and grandpa Jim said he was trying to talk (make noise anyway). When he was awake he looked around and was very content. Shelly was so happy to see him awake for hours and being content. Josh, Taylor and Grandpa and Grandma were all able to see him today. Shelly keeps bringing in toys and stuffed animals to put in his crib, pretty soon she will be sliding our bed in there! Mom, I slept in and didn't make it over for coffee, it's too quiet in the house at night when no-one is there but me and I can't get to sleep (self inflicted insomnia,(COFFEE). Everyone here seems to think that after Thursday Luke will get right to eating and on his way home!!!!!!!! It was so nice to have the kids here with us for the last week, their mom had really missed them, they just left this afternoon and their mother is already going thru withdrawels. I guess she will have to pay attention to me!!! (were not doin' that again) lol
We are feeling very blessed and as overjoyed as a person can feel while their 5 week old is in the ICU. Again it is nice to hear from everyone and thanks again for your thoughts and prayers. Jon
P.S. We took a bunch of pic's the last few days and will post them as we can.
Friday, December 31, 2004 10:57 PM CST
Luke's day was very good. He rested most of the day with some occasional upset moments. I changed his diaper twice which he almost seemed to enjoy. He was very alert and didn't get mad at me at all. He loves to wait until I get a clean diaper under him and then he decides to go again. He grunted and turned red in the face as he pooped in the third clean diaper I had just put on him. I held him for over an hour tonight. Josh, Taylor and Alex all got to wish him a Happy New Year's Eve. Jon came back tonight so he got see Luke too. Alex loves to visit with Luke and never wants to leave the nursery. He found a little boy doll he carries around here and calls Luke. Luke is looking forward to seeing Grandma Renee and Grandpa Jim tomorrow. Hopefully the New Year will be good for Luke and all of us as we look forward to bringing him home. Thanks for checking in and we wish everyone a very Happy New Year!
Thursday, December 30, 2004 10:24 PM CST
Luke's been doing good the last couple of days. Yesterday was a pretty quiet day. Today, Grandma Shari, Uncle Clint, Auntie Kim and Tammy came to visit. He was awake most of the time and even showed them how mad he can get. He got to be held by Grandma Shari for the first time today. I'm sure he's anxious for the next time Grandma comes to visit. He promised he wouldn't get so mad next time. After we all left the hospital he fell sound asleep and has been resting peacefully all evening. Posing for all those pictures must have been hard work. He'll have to get used to that. I don't think the picture taking is going to stop anytime soon. Thank you guys for visiting. It's nice to get company down here.
Well, one week from today the tubes come out of Luke's nose. I hope and pray after all goes well and he can clear the gunk out of his airway and eat normally after that. Then we'll be on our way home! Thanks for checking in and please keep the prayers coming for Luke. He's still got a big step ahead of him. Oh yeah, Luke said to say hi to daddy and he misses him.
Tuesday, December 28, 2004 7:43 PM CST
Hi everybody. Luke is having another good day today. I spent most of the day with him at the hospital. I held him for a long time again. He was pretty happy most of the time. He kept his heart rate and oxygen level up better today than the last couple of days. Not as many "spells". They're still suctioning big, thick "goobers" out of his nose and stents (I'm tired of saying mucous). Jon and the kids came later in the afternoon. They each take their turns and go in to see Luke. When Josh and Alex saw him tonight, Luke had the hiccups. Alex thought that was funny. Alex also got to take a picture of Luke. We'll probably just get a picture back of his ear or something. He's wearing some of his own clothes now. I brought in some of his little premie sleepers to wear before he gets too big for them. Yesterday he had on his car sleeper from Kim and Clint and today he's got on his Tigger sleeper from Robyn and Joel. And yes, I'm going through lots of film. I just have to start developing some of pictures now. I don't get anywhere too far these days but back and forth to the hospital. I've been taking some pictures with our new digital camera but so far we haven't been able to download any of the pictures on these computers here, so we're working on that. Then we'll be able to get some new pictures on the website too. Once again, thanks for visiting. Luke appreciates it. (And his mommy and daddy too.) A special hello to all my co-workers in Staples who I haven't seen in what seems like forever. I miss you guys and thanks for all your thoughts and prayers. Sending lots of love.
Shelly
Luke is doing well today. They are going to keep his feedings where they are at for a few days because everything is working out fine. When his brothers and sisters saw him this afternoon he was awake and looking around. Josh and Taylor were able to see how red his face gets when he cries. Alex took Luke's picture and did not call him "she" today! We are all doing fine and hope everyone else is also. Alex is making himself at home here and everyone can hear him coming in the halls. We miss home and cannot wait to bring Luke home and relax. I don't think I will be able to relax until he is 3 years old or so, but I am that way with all the kids. (Jon)
Monday, December 27, 2004 8:25 PM CST
We are all at the hospital tonight visiting Luke. We just came out of the nursery and he looks great. He is resting very well and his breathing sounds nice and quiet. I held him for quite a while earlier today. The kids really enjoy being able to see him now too. Alex is just tall enough to look through the crib bars and get a good look at him. When he first sees him he says, "Ooooh, she's so cute!" He hasn't quite got the he/she thing down yet. Well, there's nothing much to report tonight, except that Luke is losing his hair quite fast now. He's starting to have the little old man look with no hair on top of his head. We're just counting down the days now until the 6th. Hopefully all will go better for him after the stents come out. Thanks for checking in on Luke and God Bless.
Uncle Butch, good luck with your surgery tomorrow. I'm sure it will go well. Our thoughts and prayers go out to you for a speedy recovery.
Sunday, December 26, 2004 10:58 PM CST
I feel pretty good after visiting Luke tonight. When we got there he was wide awake with big bright eyes again just calmly looking around. That's so much fun to see. Then I held him for a while and he fell asleep. He seems to breathe easier when he's on his side so that's how I held him. He's such a nice little bundle.
Santa came to visit Luke in the hospital over Christmas and brought him a soft fleece blankie and a couple of toys. I held him with his new blankie today and he seems to like it. Luke also got lots of nice Christmas presents back at home. I can't wait for him to be able to use all his cute new things.
Before we left the nursery tonight we talked to the resident doctor about these "spells" that he's had, with his breathing and all. She was very reassuring that this goes along with what he's had done, that it's all part of the process and that we're lucky in a sense that Luke is just "hanging out" now, as she called it, waiting for the stents to come out so he can breathe easier, start eating the right way and go home. Music to my ears! I guess we have to just try to relax a bit. It just helps to have that reassurance every so often.
Thanks again to everyone for signing in and sending Luke your thoughts and prayers. We love to hear from you all.
We hope everyone's Christmas was as blessed as ours was.
Sunday, December 26, 2004 11:41 AM CST
Hello everyone, Luke had a good night and is doing well this morning. Yesterday he had a couple "spells" where it gets a little hard for him to breath because mucas gets built up around the tubes in his nose where they enter his throat. When he cries he produces more saliva and has a harder time keeping his airway clear, so they want him to stay calm and then he does fine. Shelly is holding him right now and Josh is in there with them, Taylor's next and anxious. Hope everyone had a nice Christmas. Jan 6 is the target date for removing the stents from his nose. Thank you all for your holiday wish's and prayers.
Jon
Thursday, December 23, 2004 11:58 PM CST
I just saw Luke and he was sleeping very sound. His breathing was nice and easy, he looks very peaceful. He had a good day today, the doc said that his nose piece will come out around the 6th of Jan. Today Luke's weight was 6lbs 6oz. Merry Christmas and Thank you to all for your prayers.
Jon
Wednesday, December 22, 2004 10:57 PM CST
If you've never visited Luke's website before, you can read his full story, dated Dec. 17th, in the journal history.
Luke had a pretty good day today. His feeding is going well. He hasn't been spitting up at all. He is getting continuous milk now through the tube. He seems to tolerate that better than feedings every 3 hours like before. I wonder how mad he'll get the first time he has a hungry tummy since he's used to always having food in his tummy now. They increased how much they're giving him twice today and took him completely off the IV fluids he was getting. So now there's a few less tubes hooked up to him. He weighs about 6 pds. 3 1/2 oz. now. If all keeps going well he can get his IV taken out of his foot in a couple of days. That'll be another less thing attached to his little body. Holding him is going to get a whole lot easier without so many tubes and attachments.
He still has a lot of mucous coming up through his nose and mouth and he still sounds like he's got a bad cold. He's been coughing more and more which helps loosen it up. They tell me this is caused from the stents in his nose and he has at least another week and a half left with them in. Poor little guy's going to be so sick of being suctioned by then. He gets pretty ticked off when they do it but it helps him a lot. I held him for a couple of hours today. He slept a lot so it was a pretty restful day for him which is what he needs to get better.
Thanks to everybody for signing the guestbook. Don't be afraid to sign in again if you visit. I love to read all your messages. It's good to know how many people care about our little guy. Thank you Tracy for the beautiful poem. You guys must know that I love poems. I printed them to put above his crib. And tomorrow is Mom's birthday, so Happy Birthday Mom! I love you and thanks for everything you do for all of us.
Tuesday, December 21, 2004 5:16 PM CST
If you've never visited Luke's website before, check out the journal history for his full story. Also, you can check out some new pictures I just added today. They're pretty cute.
Luke is doing good today. His breathing sounds quieter to me and he doesn't seem to have quite as many secretions. I held him for about an hour or so first thing this morning. He sure likes to be held. I can't say I mind it too much either. He does breathe a little shallow sometimes which will cause the oxygen moniter to beep but it always comes back up like it should, and that's what they watch for. Even if he yawns or stretches the monitor beeps so I'm getting pretty used to that. They tell me if we were hooked up to monitors all the time, we'd be beeping sometimes too. They are feeding him continuously now through the tube and that is going well so far. He hasn't been spitting up at all. Then I went to have some lunch and when I came back he was wide awake, just looking around. I've never seen him with such big bright eyes. So I started talking to him and he was looking right at me. He was so alert. He seems like he's growing and changing already. Today is just his due date and he'll already be one month old on Christmas day. Beleive it or not, the time is flying. Then I held him again and that took care of his big bright eyes. Back to sleep he went. I held him for about 2 more hours. When I left this evening he was still happy as can be.
Thanks to everyone for signing his guestbook. I really enjoy reading it. Your thoughts and prayers are really appreciated and I know that they help Luke a lot. Thanks, Shari, for the pretty poem you wrote. It's so sweet.
Monday, December 20, 2004 11:14 PM CST
If you've never visited Luke's website before, click on "read journal history" and read his whole story from the entry I typed on Dec. 17th.
Monday, December 20, 2004 9:14 AM CST
I was going give an update every day, but I'm already slacking off. Luke is doing well, but he is still battling a lot of mucous and secretions in his airway, which the nurses suction out for him. This causes him to get a little upset, but for the most part he rests pretty well. We've been told that this is just part of his recovery process. They have also temporarily stopped his feedings, as of yesterday. He was spitting up some, which is caused by all the secretions, so they're going to start him off today again with less at a time so he can handle it better. He is still getting fluids that provide calories and fat so he still gets something when he's not getting milk. They keep him under a hood that provides some humidity for him, but it's just room air he breathes. They don't need to give him any oxygen. The Ear, Nose and Throat doctor that did his surgery should be stopping by today to check on Luke. So we'll see what he has to say.
As far as the rest of us, Jon and I drove back to Wadena yesterday to celebrate Alex's birthday and get a few things done at home. This is the first time I've been home in two weeks. It's good to see the kids and be here. We finally decorated our tree last night. I'll keep it up until the end of January if I have to, even if there's no needles left on it. Alex got his new ride-in firetruck that he's been wanting sooooo bad. He's pretty happy with that. I'll spend most of the day here and head back this evening. I hope to come back again on Christmas Eve for the night if all is still going well. Then maybe we'll bring the kids back with us Christmas Day since they're off from school now for a while. We've been staying at the Ronald McDonald house, which is such a nice place. The kids love it because there's so many fun things for them to do there. It's so great to have a place like that to stay at while we're in the cities. We feel pretty lucky after staying there and seeing what other kids and their families are going through. So make sure you save those pop tabs, it really goes to a good cause.
Thanks for checking in and please keep sending Luke your prayers.
Friday, December 17, 2004 10:35 PM CST
I just created this website for Luke today. I'll try to summarize the past 3 weeks the best I can. I could probably write a book, but I'll try not to.
Luke was born on 11-25-04, Thanksgiving morning, at around 12:50 AM. He came about 4 weeks early. He weighed 5 pds. 4 oz, and had lots of dark hair. We heard a couple of good cries right after he was born and we could see him wiggling his little arms and legs around. Shortly after, we could see he was starting to struggle to breathe. They were working with him in the corner of the room, suctioning his nose and mouth and looking him over. I held him for just a little bit and I could tell he was working hard to breathe. They brought him to the nursery where they put him under an oxygen hood to help him out. He did OK with this for a few hours, but I didn't feel very comfortable with how well he was doing. We took him out of the oxygen hood once to hold him and his oxygen level dropped. I asked the doctor if maybe we should think about sending him to St. Cloud and he agreed that that was a good idea. The St. Cloud medical team came by helicopter to pick him up. They assessed him and almost considered not taking him back with them, but when they took off the hood his oxygen level dropped again. So they loaded up our little Luke and took him to the St. Cloud Hospital by helicopter. I was discharged from the hospital about half an hour later, and Jon and I left for St. Cloud. We got there sometime in the early afternoon. When we got up to the NICU where Luke was, we were met by the doctor who was with Luke in the helicopter. He told us that Luke had to be put on the ventilator right after they got there. Later, he met us in the waiting room with some more news. He told us that his white blood count was literally almost down to nothing, he heard a heart murmer and that they were going to do a chromosome test on him. Our hearts sank. We were totally in shock and couldn't beleive that this was happening - again! All we could think was that we were going to lose another baby. And this was just the first day.
Since then, things have been gradually looking up. They gave Luke some blood transfusions and started him on 3 different antibiotics to fight his infection. They weren't sure at first what kind of infection he had, but they eventually found out it was a strep infection. When they told us this, I remembered that I was tested for Group B Strep, something they routinely do, at my last doctor appointment the day before I went into labor. I called the clinic in Staples right away Monday morning to get my results. It turned out the results were positive. This means, that if the mom is a carrier of Group B Strep and not treated with antibiotics during labor, it can be passed to her baby through delivery. Mom doesn't get sick but baby does. This is what happened with Luke. I told the doctor in St. Cloud about my test results right away. They then knew exactly which antibiotic he needed. It was one of the three they were already giving him. He was checked for meningitis and pneumonia which are commonly caused by this strep infection. Luckily he had neither. He was able to fight off the infection in a few days. This showed us what a little fighter Luke is.
He was also treated in St. Cloud with medicine to close two valves in his heart which were causing his heart murmer. This is not uncommon in newborns, especially premies. The valves are now closed and he no longer has a murmer. His doctor in St. Cloud is also a pediatric cardiologist, so we feel pretty good about that.
He did well when he was on the ventilator, needing very little oxygen from it and doing most of the breathing on his own. So after 3 failed attempts to get him off of it, they decided to do a CT scan of his head to see if there was a blockage in his nasal passage. The scan showed that he had "bilateral choanal atresia", which means that his nasal passage was blocked by bone and soft tissue. In his case, one side was blocked completely by bone and the other side by bone and soft tissue. Babies are "nose breathers" by instinct for feeding purposes. The ventilator provided an oral airway for him and kept his mouth open since he couldn't breathe through his nose. They told us he would need surgery to fix this. We were just glad that it COULD be fixed. They considered doing the surgery in St. Cloud, but then decided it would be best to send him to Fairview University in Minneapolis. After spending 2 weeks in St. Cloud, the medical team from Fairview came to pick up Luke by ambulance. They let me ride in the ambulance with Luke and Jon followed behind. He had a good trip and stayed pretty calm the whole way there. We've been here for over a week now. Luke had his surgery on Wednesday, the 14th. The surgery lasted about 2 hours and went well. He has stents in his nose that he'll need to keep in for at least 3 weeks. The stents keep his new airholes open so they don't grow shut. Because this can happen, sometimes they do need to repeat the surgery. But we'll just take it step by step. The first day after surgery he slept a lot. The next day he seemed to be pretty sore. But the last couple of days, he seems more relaxed. He is also off the ventilator as of yesterday. He is doing well, breathing on his own and moving air through his nose. He still has quite a bit of mucous and secretions in his airway, which make him pretty mad and it makes it harder for him to breathe. He sounds like he's got a bad cold. They have to suction his airway quite often, but that helps him a out a lot. They keep a close eye on him and check his blood often to make sure everything is going good. He looks nice and pink and it's so good to see his mouth with no tubes and tape. He has the cutest little mouth. Hopefully this is the turning point for Luke and he is on his way to recovery and coming home. It might take some time yet, but that's OK as long as we're headed in the right direction.
So far Luke has made it through a life-threatening infection, a heart murmer, bleeding in his airway caused by irritation, a bad reaction to a drug, surgery, getting off the ventilator and a few other bumps in the road. He's been through numerous tests and scans to rule out other medical conditions. Through it all, he has shown us what a tough little man he is. He's given us many worries since his birth, to say the least, but that's nothing compared to the joy, hope and faith he's brought us.
Any extra prayers for Luke would be greatly appreciated by his mom and dad. Thanks.
Friday, December 17, 2004 2:22 PM CST
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