Thursday, February 28, 2013

Three Months Old Today

I am down in Little Rock, Arkansas visiting Jack. He is having a hard time. When I got here Tuesday night Tierney called me. She was at the hospital and wanted to tell me that Jack was back on oxygen. When I got there the nurse said hat he stopped breathing and required a long intervention. They had to put him on oxygen after because his oxygen saturation was remaining low. He was on 40% oxygen which is really high for him.

When I saw Jack the next morning he was off the oxygen. I saw able to speak to the doctor. He told me that they had tried to take Jack off his caffeine. He gets caffeine for stimulation. It helps his heart rate and his breathing. They took him off that and about two days later he had that huge episode.

The doctor told me that he felt Jack would be on a heart monitor and caffeine for 4  to 6 months.  He said that his reflux is so serious that he thinks he will need surgery. He believes Jack needs a surgery called a nissen fundoplication. In this surgery they wrap the upper part of the stomach around the esophagus. This is a pretty extreme measure and is only for infants with life threatening reflux, which   Jack has. The reflux threatens his breathing and he has a huge risk of aspiration. He actually sounds pretty raspy to me now and he has a bit of a cough. There is a possibility this was caused by a small aspiration. He does not have a fever, so that is good.

They do not do this surgery at Baptist Medical in Little Rock, Arkansas. Jack would need to be moved. The doctor called Columbia Presbyterian in New York, NY to see if they would take Jack. We are hoping that my insurance will pay for his transfer since he has a medical need for it. It is possible that they may say there are closer places where they can do the surgery. Columbia Presbyterian is about an hour away from my home, but I am sure I will be able to get there pretty frequently. Apparently they have surgeons who operate on tiny babies all the time.

They still do not know why Jack stops breathing. It has become less frequent but it still happens. Some of it is related to the reflux but some is not. I was holding him when he had his feed via the transpyloric tube (into his intestine). At one point he had a huge reflux and since there was suction right the I was able to handle that. Then he was sleeping name and stopped breathing. The monitor went off and all he nurses came in. He resounded to stimulation and started breathing again.

I realize that Jack is not ready to come home. His medical needs are so great that there is no way I can care for him there. I know I can do a lot of the medical things but the truth is he wouldn't be able to have my eyes off him long enough for me to go to the bathroom much less sleep.

There are a few good things to report. Jack had an echocardiogram and his PDA has closed. He will not need any surgery to close it because it did it on his own. He also had his eyes checked while I was here and they are looking pretty good. He still has some immature blood vessels but he no longer has retinopathy of prematurity. It has corrected itself. He still needs to be checked but it is looking good.

So, despite being 3 months old today Jack still has a long way to go. It is a bit overwhelming to say the least. There is nothing I can do and that makes it worse. I prefer to be doing something to take care of the problem. For know I am hoping he can get his transfer to NYC . Maybe the surgery will make a big difference for him.

Thanks everyone for all the  good thoughts and prayers!

Thursday, February 14, 2013

Happy Valentine's Day!

Jack is doing pretty good. He has not has as many heart rate drops, but he has had a few. He has been bringing his heart rate up by himself though.

He is still eating via the trans pyloric tube (TPT) which feeds him into his intestine. Today they tried him on a bit by bottle. He took 20 cc and did not spit it back up. That is a huge milestone for Jack. I am hoping he can continue with that. He has to be able to drink from a bottle in order to come home. He is still on oxygen but it is down to two liters per minute.

I was planning to have Jack transported to a hospital that is right near our house. When I initially spoke to the air ambulance company they gave me a "ballpark" estimate of between $10K and $12K. That is a ton of money but I figured it would be worth it to have him nearby. I have since asked them for an actual estimate and it came back at $24,845. Hugely different. They said that was because they would have to bring a plane to the area and because none of it will be covered. They had originally thought some of it might be. I tried another company and they are coming in at about $17K.

Baptist Medical, where Jack currently is, advises me that they think he will be in for at least a few more weeks. But, they said he is really starting to do great and his release to home date will be coming sooner than we know it. I think it is a waste to spend all that money to move him when he might only be in another week or two after the move.

Jack still has issues but nothing like he was having. When he first went on the oscillator it was not looking like he would survive. Then later he went through a period where he was getting resuscitated 5 to 8 times a day. That was very scary and it was not looking good for Jack. I am so happy that it really looks like he has turned a corner. He still has lung issues. His little face is all swollen from the steroids. His reflux is really bad. He still has retinopathy of prematurity (ROP) and will likely need surgery for that. He still has a hole in his heart (PDA) but it is very small and they think it might close on its own.

In order to get out of the hospital he has to be over 1950 grams. He is waaaayyyyy over that. He has to maintain his body temperature in an open crib. He does that. He has to feed from a bottle. He is working on that. He has to be free of apneas and bradys (As and Bs, that is stopping breathing and heart rate drops). He is doing much better with this. He is not free of them yet but he is doing so much better with it. I am hoping he will be free of them soon. He needs to be off oxygen. He is working on this. They have tried to wean him off it and he has not done well. He is on a very low oxygen percentage. He is on about 22% oxygen. Room air is 21% oxygen. His does blow in with a bit of pressure though. I am hoping he will get off that soon.

I am sorry that he is going to have to stay in Arkansas until he is discharged to home. The hospital is a high level NICU and the nurses are great, but I wanted him close to home. I am going down there on 2/26. I can't wait to see him. He will turn 3 months old while I am there with him. I hope the weather is ok here and that I can fly out. We have had a bunch of snow lately and that messes everything up. 

Happy Valentine's Day!!!

Monday, February 11, 2013

Doing Better

Jack is doing a lot better. He has had less heart rate drops. Some days he doesn't have any at all. Last night they actually gave him 5cc of formula by mouth. He had a very low flow nipple and he liked the bottle. He has very bad reflux so they couldn't give him more than that. He is still getting most of his feeds through the TPT (trans pyloric tube). That bypasses his stomach and feeds him directly into his intestine. He should be feeding by mouth by now, but he is not.

The nurse informed me that he has really bad reflux and I should expect an exceptionally colicky baby. Julianna was pretty bad in that respect as well. I know preemies are especially bad with that and Jack was very premature.

Jack is actually considered medically stable enough to be transported to NY. However, we just got over two feet of snow here so all the airports were closed. I am spending a tremendous time today making phone calls to try to get everything set up. When I call my insurance company they just switch me all around to different extensions. I already know the air ambulance is not covered. I am looking to have them say that his hospital stay here in NY is covered. Calling the insurance company is a good way to kill a day.

I really hope I can get this whole thing figured out so I can get him moved close to home.

In other things, Julianna and I had a great time playing in the snow. We went sleigh riding, built a large "snow sister" as Julianna calls her and went snowshoeing with my friend Cathy and all the dogs.

Thanks for all the prayers and good thoughts for Jack!!!

Friday, February 1, 2013

Tough Going

Jack has been having a tough time. His breathing stops for no known reason. That causes his heart rate to drop. All the monitors go off, the nurses run in and they have to resuscitate him. There are times when he needs a significant amount of intervention to come out of it.

They though this was happening because of reflux so they stopped feeding him into his stomach. The difficulties still continued. They decided to transfer him over to Children's Hospital, also in Little Rock, Arkansas, for a fluoroscopy of his airway. I have not yet received the official results of this test yet, but the doctor who did the test told the nurse that it looks normaly

The other possibility is that there is some type of neurological problem that is causing it. They think it could be that his brain is just not giving him the signal to breathe.

There is also the possibility that there will never be a known cause and the issues will resolve on their own. The nurse told me that this sometimes does happen and it just stops. Obviously this is what I am hoping for.

I have not been able to go down to Arkansas to see Jack because I have a pretty bad cold and cough. They would never let me in to see him and I would never risk his health and the health of all the other babies in there. I am going to set up a trip for about 10 days from now. I figure by then I should be completely better. I hope Jack's problems resolve by then too. They told me there is no way he can be transferred now. He is too unstable.

Thanks for all the help, prayers and good wishes!!!