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Life is finally getting back to our new normal and I thought I would send you all an update! Sorry I haven't been around for months but things got a little crazy here! Here is a little update on Bryson...
In November he came down with croup, I noticed he started having trouble breathing so I took him to the local hospital as its only 5 minutes away and it was a Sunday evening and thought he could be treated and we could be back home in a couple hours. Boy was I wrong!!! After them trying oral meds and a bunch of masks he was rushed by ambulance to the Children's hospital as nothing was working to open up his upper airways where we then ended up there for 42 days!! It took him a week to recover from the croup (3 weeks for it to fully disappear)as he needed the steroids 3 times and I lost count of the number of masks. We were supposed to go back in February to meet with the dietician and GI again as he has had a lot of trouble gaining weight. He had been on a really high fat diet and Pediasure Plus for a couple months without much success, I swear if it were up to him he would be anorexic! Every time he would get even the simplest cold he would drop a lot of weight so with him having croup he stopped eating all together. They inserted an NG tube which helped him gain some weight back but caused his reflux to be A LOT worse. He eventually started to projectile everything back up so we new a g-tube was really our only option. After meeting with ENT they found nothing wrong with him in that aspect, GI got more involved and they performed a Barium test which showed he had minimal reflux. We moved on to the 24hr PH probe test which they felt would be the final decision as to whether or not he would be a good candidate for a fundoplication as well. The results shocked us all.... Bryson was refluxing every 3.5 minutes on average, no wonder the poor kid never wanted to eat!!! He was then put on an emergency list for the surgery as he was going through about 2 NG tubes a day (he would throw them up through his mouth or nose) and he couldn't seem to keep anything down! The surgery was done mid December and they were able to do the whole thing as a laparoscopic surgery which was fantastic news. He recoverred really well and we were able to make it home for Christmas!! This was the best gift ever!! Having my baby home for the holidays and not sleeping on a chair-bed after 42 nights!!
Were home now and things are really starting to come together, he was down to 16.5 pounds and this morning we finally celebrated him hitting 20lbs!!! It definitely is more work but now we are in a good routine where he gets all his feeds in overnight and finally has more of an appetite during the day. In conclusion and after numerous test they feel the problem the whole time was that because he has severe IUGR and severe reflux his stomach was extremely small to begin with and because everytime it fills up he throws everything up, his stomach has never been able to grow/stretch properly. We are all hoping that with the g-tube and fundo we can eventually stretch his stomach to a regular size! Hes gained just over 3lbs in not even a month and a haft and seems so much happier!
Developmentally hes doing amazing... thank god! He had an early 18 month assessment during our stay and hes actually above his corrected age in all aspects. Hes putting 3 words together now, running around like crazy and cognitively understanding so much! We are having so much fun with him at this age!!
Sorry I wrote such a huge novel, hopefully it makes sense lol!! But, thought I would try to catch you all up and try to get back into things on here!
So all and all things have been crazy and stressful but my husband and I feel soooo relieved that we can actually relax now, no more fight to get every calorie possible into him, force feeding him and stressing every day trying to get food into him. Hes gaining amazing weight now and things are starting to really look up for him!!
Miss you ladies and sorry its been so long! I will try and post some pics soon!!
Oh my goodness, what a saga you've been through! I am so glad he was able to be home for Christmas, and that he's growing so well now! It makes such a difference when you can finally get answers about your child's health, doesn't it? I will be keeping my fingers crossed that he keeps growing and gaining weight--so glad to hear it's not impacting his development!