On Monday, Dec. 16th we took Noah to see his pediatric GI. He said if he didn't see drastic improvement with his vomiting (frequency and severity) in one week then Noah needed to be admitted to the hospital.
On Friday, Dec. 20th we saw his pediatrician and I told him I didn't feel I could keep up with his vomiting anymore, that it was getting so much worse and I was worried about clearing his airway each time. I knew something was different and very wrong. The pediatrician said he could tell Noah wasn't his usual self and wanted us to go directly to the hospital from his office.
"Noah is back in the hospital. Hopefully they'll find some answers for us in the next few days. He's being really well taken care of and all his medical team has been great and really helped put us at ease. I'm thankful to have such a fantastic hospital this close to home."
|Dec 20: Being admitted.|
When we got Noah to the hospital (about an hour from home) I told his doctor we were relieved to have him there with a team of fantastic medical professionals who we could trust to take care of him. I told her it felt like a weight was literally lifted off my chest, and that I've been having panic and anxiety attacks for the last month. She explained that with as severe and scary as his vomiting has been that we were essentially EMTs 24 hours a day with no shift change ever. She explained that kind of extreme stress of having to respond to life threatening situations every few hours is difficult even for people trained to handle it. Daniel, Aurelia and I stayed with Noah until he was completely settled in, his nurse was familiar with all the things that comforted him best and Daniel rocked him to sleep. Once we had him laid down in his bed and comfortably asleep we drove back home (about an hour drive) for the night.
In the first hour we were there his nurse found his blood oxygen level was terribly low and she started him on oxygen. He was also seen by the head pediatrician and 3 residents. It was so good to have such well trained people being so vigilant with him.
Before driving up to see Noah in the morning on the 21st I called his nurse to see how his night was. While talking to her one of his doctors asked to speak with me. He took the phone and said, "We want to thank you for taking such good care of Noah. It's incredible how well he is doing given the circumstances. We really sincerely want to thank you for taking such good care of him." I of course started crying :) It was nice to have them recognize how hard we've been working for him even though at first glance he just looks emaciated. It's nice to know we really have done a good job for him.
"To explain why Noah is in the hospital:
Noah has been vomiting for as long as we've known him. He vomits every feeding and even all night and I don't mean "he spits up and I'm calling it vomit", I mean full on whole body heaving like only adults should have to do. So we and Noah have been dealing with horrifying, violent vomiting from a less than 5lb infant for several months. We know how to handle it and help him clear his airway and other than being extremely stressful we've been able to manage it. In the last week however his vomiting has gotten more violent and he's been turning blue and unable to clear his airway on his own, meaning I've had to do back blows and use a bulb syringe to get him breathing again. It got to the point I didn't feel we could safely handle his vomiting on our own anymore. I knew if he had an episode I wasn't able to correct then his life would be in danger.
For the last 6 weeks he has been stuck at right about 5lb, making no progress. On Monday we met with a pediatric GI who said Noah needed to make significant progress in one week or he needed to be admitted to the hospital. When we saw our pediatrician on Friday Noah had lost weight and was clearly miserable so the doctor said to take him directly to the hospital from his office.
So here we are and we are SO GLAD to be here. He is in FANTASTIC hands at [the hospital]. Within the first hour of having him admitted he was already seen by several doctors and his AMAZING nurse caught an issue we weren't aware of, his oxygen levels were constantly dropping to dangerous levels. He's on oxygen and had an NJ tube placed today. He likely won't be in the hospital very long but he'll be in there until he starts making real progress."
|Dec 21: Settled into his new room, sleeping.|
An NJ tube is just like the NG tube he had in the NICU (the one in his nose) but rather than going to his stomach it goes through his stomach and into his small intestine. The idea is that food gets put straight into his small intestine and isn't thrown up because it isn't in his stomach.
I was in the room, holding Noah's hand while they did the upper GI to place the NJ tube. I watched on the x-ray screen as they got the tube to the appropriate location and started the barium injection to see how formula moved through his system. As it came out it was supposed to move forward but his looked like it hit a wall and backed up into his stomach, then started refluxing up his esophagus. That is where they found a narrowing in his small intestine that they believed could explain his vomiting. The food couldn't get through!
In the next few days they continued doing abdominal x-rays and found what looked like a twist in his intestines. Essentially they had kind of spun around themselves in one spot and created a choke point where blood flow was being cut off and food couldn't get through. I think it was by Christmas Eve that an abdominal x-ray showed it resolved on it's own. If it hadn't they were prepared to do Christmas Day surgery to go in and correct it before that section of intestines was permanently damaged.
"We have an official diagnosis! From the IUGR support group I'm in we learned about Russell-Silver Syndrome, so when genetics at [the hospital] wanted to check him out again (they already had before we adopted him) we asked that they check for RSS. Today they told us he does have it. I'm happy because it gives us an explanation to tie together everything we've already seen in him. The best things to do for RSS are things we've already been doing for him (PT, OT, enteral feeding). This diagnosis likely just means he'll be delayed on physical milestones while he's growing up and have some other recurring medical issues. Because he got his diagnosis so early in life he'll have his best chance possible of growing to his full potential."
In the IUGR group I'm in on facebook someone had posted a picture of a toddler boy who looked JUST LIKE an older version of Noah. It looked like it could have been him. Then I saw one of the commenters said "He looks like he might be an RSS baby". So I looked up RSS which turned out to be Russell-Silver Syndrome and all the symptoms were Noah. Even the seemingly most random, odd things were things we saw in Noah. There are a lot of medical challenges that come with RSS and Noah has most of them, but now they can be explained, connected and can be addressed in the best way possible for him.
They actually tested him for Russell-Silver Syndrome back in September right before we adopted him. The test for RSS is one of those that took much longer to get back and they didn't have the results until about 5 weeks ago. When they got the results they were under his old name and they saw that at the time he had a pending adoption, so they didn't know who to contact and just dropped it. The geneticist was very apologetic and said he should have done more to track us down and let us know about the results.
|Dec 23: Traveling downstairs for a chest x-ray to figure out his rapid breathing and low oxygen levels. He loves going for special rides down the halls. Here he is staring up at the lights above him :)|
|Dec 23: X-Ray with an NJ tube|