It has been quite a week for us as most of you know. I know a lot of you want more details so I'll try to sum it up. On Friday the 19th, Parker had a weight check at the Dr's office. I had no idea anything was wrong with him at that point. On the way home from the Dr., his apnea alarm went off while he was in the car seat. We weren't sure if this was a true alarm or not because the car seat is such a bad position for him. Late Friday night and Saturday morning feedings weren't going well and his breathing was more labored than usual. We decided to take him to the ER Saturday afternoon just to be cautious. Even though his bloodwork looked good his chest xray showed what looked like pneumonia so he was admitted. Parker's breathing continued to get worse and finding the right position for him was more and more difficult. His blood gasses also showed elevated carbon dioxide levels so they transferred us to Children's Hospital in Omaha.
I must say, we have learned way more in a week at Children's than the 8 weeks spent at St. Elizabeths. It seems we get a new diagnosis everyday but I am grateful he's finally in a place where he is getting the tests and treatments he needs to help best care for him. I never knew I would be a nurse when I grow up but it looks like I will be afterall. Since we've been at Children's, Parker has had a sleep study, swallow study, videoscope, x-rays, MRI's, bloodwork up the wazoo, kidney ultrasound, heart echo, and seen the genetics team, ENT, pulmonologist, plastics, surgeons, and had many other specialists consult. He's currently on a ventilator. It's been a whirlwind and we've learned so much about Parker's 6q deletion and the problems associated with it. I'm sorry my little guy has to endure all this but he is strong and determined and I feel we have to try to get him the best care and treatment we can.
There are a lot of different theories as to why Parker went downhill so quickly when we were maintaining quite well at home. The initial diagnosis of pneumonia has been dismissed. They tested him for just about everything there is to test for and everything came back negative. Their best guess is that it was a cold that just turned nasty, he aspirated, or his system just wore out after working so hard (or most likely a combination of all three).
The Dr's have really worked together as a team to make recommendations for Parker. It seemed like every study that was done showed how signifcant Parker's breathing troubles are. The sleep study (or nap study where he really didn't sleep well so results were likely even better than they would've been) showed that Parker's breathing was obstructed 60-70 times in 2 1/2 hours. The video scope showed that Parker has pharyngomalacia where part of his airway completely collapses during breathing. Although the specialists considered all of the options, it looked like a trach was the best way to go. We needed the results of the MRI to confirm and it showed that there really wasn't any other option. The downside to the MRI was that he had to be put under general anesthesia. They decided to intubate due to his obstructed airway and he wasn't able to successfully be extubated so he remains on the vent. They will keep him on the vent until Monday when he gets his surgery and then hopefully he'll be able to come off it somewhat quickly after.
The swallow study showed that Parker aspirates. They tried thickening the liquid and he still aspirated and he aspirated severely. So, they said we should no longer feed him orally. I must say out of everything we've heard (and we've heard a lot), this was the hardest for me to accept. We worked so hard to get Parker to the point where he could eat everything orally and he really enjoys eating so this was tough. But, I don't want to cause more problems down the road so this is what we'll have to do for now. Hopefully, there will be a time in the near future that he can eat by mouth again. We have the option of keeping a NG tube in or having a G button put in. After considering both, we have decided it will be better for Parker and for us to do a G-tube so he will have that placed during his surgery on Monday as well. And while they're at it, they are putting tubes in his ears and repairing his umbilical hernia. This sounds like a lot to me but we feel it's better to do it all at once rather than have to do another surgery in the near future.
There is a lot of other information we have found out but we're waiting on more testing and consults from specialists before we can fully grasp everything. We have learned that he is missing 92 genes on one of his 6th chromosomes. This sounds crazy but we were initially told it was a few hundred so this was a relief for us to hear. The more we find out, the more our little Parker amazes me. Or how amazing our God is and the power of prayer. Thank you all for keeping Parker and us in your prayers, I know it has gotten us this far and will be what continues to get us through!
Sunday, November 7, 2010
Parker has been smiling a lot lately and why not? He is...
- Breathing better (we're hoping to wean his 02 down a bit this coming week)
- Eating better (he is now taking in 600+ cc's per day)
- Gaining weight like a champ (he was 9 pounds 12 ounces on Friday)
- Appears to be hearing more (his hearing test showed moderate hearing loss in both ears but with possible fluid and his noisy breathing, the tests may have been skewed. He seems to be startling to more sounds than he was before so we're hopeful it's better than that.)
- Visually tracking things (faces, his mobile, bright colored objects),
- Getting stronger (he is getting more and more control of his head)
- Has been making cooing sounds (which I absolutely love)!!
I can hardly believe my little girl is 2! It just seems crazy. Everyone tells me to enjoy it when they're little because they grow up so fast and I'm beginning to realize just how true that is. It's amazing how much she has grown and changed. She surprises every day with how smart she is and she's quite funny too! These days Alexa's favorite things are: doing puzzles, listening and dancing to music, talking and learning new words, going shopping, cooking with Mommy, reading books, learning new things (colors, counting, words), giving hugs and kisses, Elmo, story time at the library, spending time with her grandparents, helping with Parker, going to the park and anything outside. Alexa also started gymnastics lessons this weekend which I think will be lots of fun! She is such a good girl and I am so blessed to have her as my daughter!
This year we had a very small birthday party with the grandparents and uncle John. We are still trying to limit visitors to help Parker stay healthy so maybe next year we'll have big bash again. We had Alexa's favorite: pizza, grapes, and Elmo cake. Could it get any better?
From exploring the pumpkin patch with uncle John & Mommy,
to painting the pumpkin she picked out,
playing in the leaves,
going for evening walks,
(Parker wasn't a fan of the bumps but we tried)
having picnics in the park,
dressing up Parker for Halloween,
wearing not 1 but 2 costumes,
and then going trick or treating for the first time...
I'd say Alexa has had a pretty fun fall so far!