Today, I talked with the surgeon and two of the nurse practioners to get the scoop on the heart catheterization and the game plan.
As I mentioned yesterday, the pressures in Caleb's lungs were too high. We do not know why. Normally, they start out high in newborns and decrease with time. We don't know if his are high because there are problems with his lungs, if they are high because of the shunt or maybe they are high because his body has never been stable long enough for them to go down. While this is not an unheard of problem, it needs to be fixed before he can have the next surgery.
There were no other reported problems with his heart like leaky valves, weak squeeze, etc. That is good news.
After the catheterization, everyone thinks that the shunt is too big. Now, our job is to get Caleb to grow so he will need more blood going to his lungs. He grows and the shunt doesn't, so at some point, it should be the right size and then start to get too small. When it starts to get too small, they will perform another catheterization and if the pressures have dropped, they will perform the next surgery.
The game plan now is as follows (in order):
1) Start feeding him breast milk at a rate of 3 mL/hour and increase to 20 mL/hour over the course of a few days. His current source of nutrition (TPN and lipids) will be reduced as the breast milk is increased, but he will still receive enough nutrition for real growth. If he tolerates this, they will add formula to fortify the breast milk again. This process was started this morning. Caleb is being fed directly to his stomach. Unfortunately, 3 mL/hour does not eliminate his growling belly, but when the volume is increased, he should have a feeling of being full. Hopefully, this will greatly reduce his present fussiness.
2) Start the new medication to try to reduce the pulmonary pressure. The medicine they use is Viagra. It makes the blood flow better through your lungs as well as to other places. They are hoping to start this on Friday. The dosing will be increased slowly to make sure it does not "cause a sudden drop in blood pressure" as the commercials warn.
3) Switch back to oral diuretics and blood pressure medicine. This will not start until the first two items are all set.
4) Wean off the high flow air.
5) Go home and grow until the shunt becomes too small.
They expect the first four steps to take at least a month. Hopefully, we can keep him growing the entire time and when it comes time to wean off the high flow air, his additional size and strength will allow him to be successful.
In the last week, we have seen real growth and an increase in strength. Caleb has grown in length. I am not sure how much, but it is becoming noticeable. Because his weight has not kept up with his length, he is very thin and looks like a worm.
He is also getting stronger. He turns his head side to side, kicks his legs and grabs anything he can catch, requiring you to pry his fingers away. He has bounced back from a pretty substantial blood loss in a really short time. The nurse practioner was impressed by how good he looked this morning.
Now that we have a game plan and have already started, it is much easier to face the days ahead. It is not really even that frustrating that we had already completed Steps 1 and 3 before we had our big backslide. Hopefully, the two weeks that have passed since the backslide and the three weeks ahead before we try weaning off the high flow will give him the strength he needs to finally get over the hump.