Thursday, September 16, 2010
Thursday, September 16, 2010
Caleb in Bed
Caleb had a good night last night and a good day today. Today was a rest/settle out day and he did a good job. We rocked and snuggled for a good portion of the afternoon.
Today, I had a nice long talk with the nurse practioner. She spent about 45 minutes patiently answering all of my questions. Following are some of the high points.
Question: Why are Caleb's blood electrolytes always out of whack and why does he keep needing blood transfusions? Is there a problem with his blood?
Answer: His electrolytes are out of whack because of the diuretics. He is getting rid of more fluid than a normal baby would and the diuretics take some of the important substances out as well. He is needing transfusions because his body can't keep up with the amount of blood they are drawing to check his electrolytes. No problems that can't be fine tuned.
Question: Are his lungs and diaphragm functioning properly?
Answer: The diaphragm is functioning like they had hoped. The left side is staying down and the right side is moving properly. He has some fluid in his lungs, but not a level they are worried about.
Question: How is his heart functioning?
Answer: The left ventricle is squeezing properly. There are a few valves with small leaks, but nothing that is terribly worrisome. The shunt looks good.
Question: Where are we going now?
Answer: We are currently tweaking diuretics and blood pressure medications. His heart works better when his body is "dry". His kidneys like his body "wet" so they hold onto fluid. We have to find the balance where his kidneys and heart are both happy. We also have to find the proper dosage for switching his diuretics from IV to oral. Oral medications are absorbed by the body less effectively, so we are switching one dose to oral and waiting a day or two to see the effects. We are making only very small changes to his respiratory support and no changes to his feeding so we can better identify the effects of changing the diuretics and heart medications.
The nurse practioner was very open and honest with me. She said that because Caleb likes to make a bid deal out of small changes, we are moving cautiously ahead. She said that he may make up his mind that he wants to go home when his diuretics are balanced and shoot forward or he may get out of balance and send us back to the PCTU. I have seen more than one baby come back to the PCTU, so I knew that was a possibility. The shooting forward part was kind of surprising to me and a delightful possibility. I am certainly not counting on it, but knowing it is a possibility made me feel great.
Because all of our progress is in Caleb's court, no one has any idea how long it will take. I hope he does not think that he will be able to single-handedly control the actions of our entire family forever.