Day Two

Today we met with the lung doctor, neurologist, and got a pic line put in. Dr. Brenda Wong is the neurologist, also the best person to go to for sma children. She has cared for children from all over the world. She was telling me stories about SMA TYPE 1 patients who go to college and live successful lives. ((aiden is type 1 sma also.)) One girl is now 21 and in college. She said it really is up to how you take care of the children. She says it takes a strong person to take care of an SMA child, they require an IMMENSE amount of daily care.
Right now, Aiden is not very strong due to his pnemonia. It is going to take quit awhile for him to recover from it. In the mean time, they are trying him on a cough machine, a bipap machine..that is just a mask they put over there nose to blow pressure into there lungs. That machine is used to keep there lungs open and make it easier for him to breath. We also got a pic line put in. That is a line that goes under the skin down into one of his main veins. This is where they will put his iv fluids and draw blood from. That was the best part of the day for me, they will not have to poke him for a temporary iv anymore, or draw blood work. His poor baby feet are all cut up from all the other needles.
Another part of the SMA treatment is there nutrition needs. At Toledo Hospital, they were using a high canon nasal flow. That would push air into his lungs and belly. While he was on the nose air as i like to call it, they stopped his feedings because they were afraid he would reflex. If he would reflex by chance, the fluids that come up could get stuck in his lungs and he could catch pnemonia or even choke. There are soo many risks with this stupid disease!!! So today they explain to us that SMA babies need to maintaine a healthy weight. Keeping enough weight on will help them have more energy to use there muscles more. It was will also keep them stronger for longer. But on the other hand, they cant let them gain tooo much weight. Then they begin having trouble breathing and so on.--sooo basically for us, aiden is not gaining enough weight. he has skin pockets by his arm pit. its very sad to see. So the plan is to have him use the bipap machine at night while he is sleeping, wake him up every few hours for his cough machine and to deep suction him, and to get him up to 40 ML of formula an hour. Hopefully he will gain some weight back soon...

That is pretty much all the medical stuff we learned today..on the other hand..aiden is breathing very heavy..they are hoping that the bipap machine will help him slow down and not feel like he needs to work as hard to breath. He has been on the machine almost all day and hasn't slowed very much. I guess only time will tell. Jeff and I are doing okay. The stupid nurses and such only let 2 people in the rooms with u. I also brought kate with me so that i would not have to stay alone while jeff goes back home this week to work. We spent a decent amount of the day stressed out. It hurts us to see our little guy in such pain, just to keep breathing, hopefully tomorrow will bring good news.. we are staying at the ronald mcdonald house for the night!! hopefully we will get some sleep tonight :) it feels good to be out of the hospital vibe for awhile..i feel horrible for aiden sense he has to stay there for awhile..thank youu again everyone for all your support