Thursday, September 23, 2010

... and one step back.

This morning when I got to the hospital, Caleb was back on the high flow air at 1 liter. This is the level we weaned off of yesterday. He started dropping around 1:00 am and they put him back on the flow at 2:00 am. I had called the hospital at 11:30 last night to check on him because I was worried that he might backslide. At least my lack of confidence was well-founded!

His chest x-ray looked fine this morning, his diuretics are still working well and his blood pressure is still fine. There was no heart or lung reason that they could pinpoint causing our problem. After a lengthy consultation between the nurse practioner and cardiologists, the nurse practioner recommended Caleb get a breathing treatment with steroids (basically the same treatment people with asthma have). He had two treatments and was taken off the high flow air again at 2:00 pm to see if things worked.

After his first treatment, his heart rate was down, his respiration rate was down and his oxygen saturation was up - all good things. The nurse practioner was excited, the treatments were making it easier for him to breathe. If this works, the problem may be in his throat or trachea due to the irritation from all of the intubations. When I left the hospital at 8:30, he was still looking great. The treatments will continue and we'll see how he is doing tomorrow morning. Walking into his hospital room each morning adds at least ten gray hairs to my head!

Today was another information gathering day for me. Questions just build up and then I need to spend some time with the nurse practioner to get my head on straight. Todays questions and answers are:

Question: Based on the information I am hearing, Caleb is not progressing as well as should be expected for a "normal" baby with this problem. Is this true?

Answer: Yes. The problems we are having getting him fine tuned and off high flow air are probably a result of his body not liking the size of the shunt. Caleb has Goldilocks Syndrome. The first shunt was too small, the second too big. His body is struggling to deal with it.

Question: How do we fix it?

Answer: Caleb will probably have the second surgery as soon as his body is strong enough to tolerate it well. It is anticipated that it will be when he is around three months old. Normally, the second surgery is performed between four and six months of age, when the baby grows out of the shunt. Caleb doesn't seem to deal with the shunt well at all, so it is not anticipated that he will grow into it. When the second surgery is performed, the blood from his superior vena cava (the vein carrying blood from the top part of his body) will be rerouted to go to his pulmonary artery, right to his lungs, bypassing the right side of his heart altogether. The shunt will be taken out of service at this point. This greatly reduces the load on his heart and provides a stable supply of blood to his lungs.

Question: What happens if we can't get off the high flow air?

Answer: We stay in the hospital until the next surgery.

Everyone here wants to get us home and they are working very hard to get it to work. The nurse practioner said that the babies do much better at home than in the hospital and they realize the strain that being in the hospital puts on the rest of the family. I was very glad to hear this is their thinking.

If Caleb does have to stay in the hospital, it is comforting to know that we are nearly halfway there now. As it is, we are only looking at probably six to eight weeks at home if they can do the surgery at three months of age. We will proceed one day at a time and deal with whatever comes our way!