Christmas day. Noah's first Christmas. I dont know that I had really had time to think about my expectations for the day or maybe I just didnt have any. I never thought that all day long he would sleep and his breathing would be labored and he would be miserable. I havent seen Noah really joyful in awhile. I forget what it looks like.
He still had his fever (the one he had on Thursday)and I told Paul I just felt like I should call the doctor. Even if the doctor said there was nothing to do and he would be fine, I just had to call to get it documented. I didnt feel like dealing with them so I had Paul call. The doctor said the breathing treatments should have helped by now and we have done all we can at home and it was time to take him to the ER. I was so glad my gram was staying with us because it meant that Paul could go to the ER with me and maybe help or say something that they would finally listen to.
We got to the ER Christmas night. Time seems to fly by when you are in the ER. One hour seems like 2 minutes. The first doctor came in she was peppy and nice. I really liked her. She suggested a chest xray and maybe a ct scan. The older doctor perhaps her superior I dont know came in after. She stood there. She said Noahs bad breath was bed breath and nothing to be worried about(even though to me it smelled like rotten something), she said ct scans have too much radiation and that is too dangerous for him, insurance may not pay so no sense in keeping him overnight to observe, this is his first winter and he will grow out of it.
ARE YOU FREAKING KIDDING ME?! I dont care about money or insurance, thanks for making me feel like a bad mom for thinking about a ct, outgrow it seriously? If any other child came in that sick would they act like that? Or have they even considered his Trisomy 8? I left the room crying, I could not even look at that that...that woman! She left. She never did come back.
The first doctor came in with her replacement for the night. She ordered a ct scan and I just knew someone was praying for us. This doctor listened. The CT came back very bad. Noah has Mastoiditis. It is fluid in the Mastoids and ears. There can be fluid there but no infection but our little man has an infection. The infection can deteriorate the skull bone and that can be bad. We were admitted to the hospital. 7th floor this time.
The Ped(from the hospital) came in and spoke to Paul. We didnt get to bed until after 4am and I just couldnt get up to deal with more doctors right away. I did end up getting up bc someone had called. The ped was great. There were some things however that came very hard to hear. He talked about life expectancy with Trisomy 8 and how at some point we may decide or need to decide to take him off of everything and just keep him comfortable. But I think that is with a full Trisomy 8 which Noah is only a partial trisomy 8. And we are not there nor do I ever want to be there! He said that this in no way was our fault which brought us little comfort. He said that he is surprised no one found this, but this is what we need to do now. At least a month of IV antibiotics. At the very least 5 to 10 days here at the hospital. Then if they can get the infection under control they would put a pic line in and we would administer iv antibiotics at home. The doctor also said by looks Noah looks to be about 6 months old, by bone development he is looking like a 4 month old. He said Noahs soft spot hasnt even closed yet. I thought that odd no one had noticed before. So I guess he is a nine month old in a 6 month old outer body with a 4 month old inner body. He and the other doctor said we needed to see the DRG,diagnostic referral group, think HOUSE doctors only even more brilliant. the genetics, some kind of support person that can help us be at peace with our decisions, ENT and a few others I forget.
Next was ENT. They came in and examined him. They did this twice. The doctor said he had horrible ear infections and was surprised our regular ped didnt catch it. He said we need to have Noah get tubes in tomorrow and get the fluid out. So surgery was scheduled for tomorrow. Then he is thinking about another surgery in the near future for adenoids but says Noah is much too sick right now.
Paul is very upset that no one caught this for 2 months and it has now gotten so bad that had we listened to that stupid doctor last night and just let Noah out grow it we may not have gotten a chance to watch Noah grow. I am too tired to be so angry but I am sure it will come. I am just glad that I followed my gut and took him to doctor after doctor week after week and took him back and forth to the ER until someone finally listened.
There is a lot more going on but I am so tired I need rest. We are thankful for all the prayer and support from everyone last night. This is something very hard to deal with especially having to take care of 4 others at home, cook, clean and go to work.
Please continue to pray for our family, Noah, our girls and Paul and I.