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Oh my goodness, Ann Marie, sorry to hear Carter is having such a rough time.
I’ll be thinking of you all next week and hope the procedures all go well and you get some answers! You and David both are such strong and amazing parents!!We’re home!
Carter had all the scheduled procedures by all the docs. David and I took him up on Sunday night and stayed in a hotel near the Hospital as we were in for bad weather (we didn’t get any, BTW), and had our sitter stay over with Dylan. (Talk about no sleep the night before!) The procedures in total took approx. 1.5 hours, and the results were mixed.The GI said NO damage from reflux (YEAH!!!!!), so definitely not going back on meds, at least not yet. She took biopsies and will get back to us but said she thought everything looked good. I was a little relieved for selfish reasons, as when the pulmonologist brought up reflux, I was feeling like a bad mom that I hadn’t recognized it first. I know, so selfish. Ecstatic for Carter reflux is not an issue, but a bit relieved in my detection skills with the boys.The ENT took the tonsils/adenoids and fixed the tubes. She saw the same hourglass issue as the last time we did the laryngoscopy, but not as pronounced, so sounds like that is getting better as well. Our regular ENT was on vacation (LOVE HIM!), but when I saw her last week I felt very confident in her skills and her bedside manner and wanted everything done in one shot, so I was comfortable letting her do the surgery. She did great!The pulmonologist found that Carter has the airway of a newborn. It is not growing with him and it is why we are having these breathing problems. We are not sure why this is happening, but she is planning on scoping him every 6 months to monitor the growing and see if there is other intervention we need eventually, but not now, so that is good news, but keeping my fingers crossed it is going to start growing. His lungs as well are very small.After we went to recovery, Carter could not keep his sats up at all (pretty normal) but eventually got to the point they had to reintubate him. They admitted him to the pediatric ICU (we expected to stay over anyway, so not a big shock). Carter, my amazing fighter, on morphine and ativan to sedate him, fought back and extubated himself!!! He was trying to get off of the bed on all of these meds as the doctors were trying to hold him down and bag him because he still could not keep his sats up. I think had this been our first scare and first time on the monitor, I would have been a horrified parent in such distress, but I kind of found it funny as he was fighting so hard. I was SOOOOOOOO proud of him. He was ready to take them all on!!! As he would not let them intubate him, we gave him oxygen by blowby tube (spelling?). This is that big blue tube that most babies need after surgery for a bit to help keep their sats up, so we were familiar with it. I climbed in bed with him, held him down for quite a long time and kept the blowby to his face for quite a few hours until he started doing better and better. Then I only needed to give it to him when he dropped his sats and got tired, but by morning, he was doing great. He was eating and drinking, (I was SO amazed as Dylan was HORRIBLE after Tonsils and Adenoids) but then they told me they were giving him steroids overnight to make sure that they reduced swelling in the throat because of the multiple procedures and the re-intubation. David came up and relieved me and I took Dylan back home yesterday morning, and then David and Carter got discharged last night when they were convinced he would still eat and drink without the steroids in his system.All and all, good information and nice to see Carter fight. That always makes me feel like he will be OK because he wants to be OK! He is a little fussier today, (expected) but slept pretty well last night. We are all really tired and could use some sleep but doing pretty well.On a side note, not much bleeding at ALL with the T&A where Dylan bled a ton. The ENT told me it is a new way of going in and getting them out where they do much better and don’t bleed as much. After going through it both ways, I can tell you if your babies need this surgery, find a surgeon who is trained in this new way of cutting them out because Carter is doing SOOOOO much better than Dylan ever did, so I would only (if I had any more children to go through it, NOT!) have it done this way if we needed it done again. Sorry I don’t know what it is called and this sounds like a commercial, but I can not believe the difference in the two boys after this surgery. I think it was a blessing in disguise that our regular ENT was away because although I think he is an amazing doctor, I think he does the surgery the other way and this doctor who was very young (probably younger than myself, so I think she is very young
) did it the new way.Thanks all if you made it this far!!! You are an amazing bunch!!Ann Marie
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