Moving on Up... Again...

Well, after spending Sunday night in CVICU, Caden was moved back up to 3W early afternoon on Monday. We are so thankful for the nurse he had overnight in CVICU because she understood how much we wanted to get Caden back up to the amount of food he was getting before the last surgery. One of the things keeping us here is that they need to see that Caden is gaining weight every day. It's awfully hard to do that when they stop his feeds all the time for this or that. He was without food from 3 am – 11 pm on Sunday. So, between 11 pm and 6 am, his nurse took him from 10 mls/hour of continuous feeding to 50 mls of bolus feeding every three hours. I don't think all nurses would have been this proactive and we really appreciate that she made that a priority during her shift. Caden also had a fair amount of pain following his procedure. I'm sure he felt it more simply because he wasn't anesthetized for so long afterward as in previous surgeries so he woke up sooner and could feel the pain. She did a great job at managing his pain with Tylenol overnight as well.

After the surgery, the surgeons wanted Caden to have a five-day round of two antibiotics prophylactically to prevent any kind of infection from the procedure. They began giving them through the peripheral IV in Caden's left foot. However, by Monday morning, that IV had gone bad. The surgeons had specifically said that if the IV went bad, they could switch the antibiotics from IV to g-tube so he wouldn't have to get poked again for another IV. Cardiac babies are typically very hard sticks when it comes to IV's, lab draws, etc. So we were glad they said he wouldn't have to have another IV. However, when the time came and his IV went bad, the doctors in CVIUC decided that even though the surgeons said it was okay to switch him over to oral antibiotics, they still wanted him to get them via IV. Greg argued with them about this but they wouldn't budge.

Greg asked for a specialist to do the poke because Caden is such a hard stick. One of the CVICU fellows came to do it because I guess he spent a year as a phlebotomist doing just this and he was confident he could get it. Unfortunately he poked him twice and was unable to do it. The first poke started out good and looked like it would be a good vein, but then it blew. The second poke ended up in the arterial line which doesn't work for a PIV. So he said he wouldn't poke him anymore but brought in someone from vascular access to get one in. She used an ultrasound machine to find some good vein candidates. She was confident one of the two good ones she found would work but ended up not being able to get either one. As a last resort, she tried a very small vein in his leg and was finally successful. However because it is so small, they don't think it is going to last very long so that's frustrating!

One of the other things they want an IV for is t administer a contrast solution they can follow in a CT scan. The attending from third floor wanted to do a CT in order to determine the status of Caden's pulmonary system. She wanted to see if he truly has pulmonary hypertension or not and this will be a good tool to accomplish that. But they will probably need another IV on a bigger vein because they might not be able to do the contrast on such a small vein. One of the most aggravating things is that after we got back up to 3W, I was telling the nurse practitioner that the IV was in a small vein and wondered if that would work for CT. She said she didn't know for sure. But a little while later she came back and told me that in order to “save the IV”, they were going to switch his antibiotics from IV to oral. This is EXACTLY what the surgeons had said they could do but the other doctors in CVICU opposed. So, after being tortured and having five sticks to get one IV that they probably won't use for the CT, they have decided he can have oral antibiotics after all. SO frustrating!

We are really happy Caden is back up on third floor. Unfortunately the only bed available is in the intermediate ICU even though Caden doesn't need that level of care. And, this room has four beds in it and is much noisier than the last bed we had on third floor. It's also harder for us to take over the care because of space issues and trying to find where everything is. In the other room we had been in, we were able to settle in and we had all the supplies we needed within easy reach. So it's another adjustment for us. We're hoping they will be able to move him into another room as soon as a bed opens up.

In the meantime, the nurse practitioner is working on ordering all the supplies we need for going home in regards to the g-tube feedings, medications, etc. We are going to be talking to the pharmacy about the medications and getting a supply of that before we leave the hospital. And, the OT is going to start working with Caden on Tuesday on starting to drink from a bottle. Because he has a voice again, that means his vocal cords are working. But to learn to drink from a bottle requires stamina and strength which he hasn't had the opportunity to develop. And he needs to be able to coordinate the breathe-suck-swallow cycle. So, even if he is able to take some food by mouth, it may be several weeks before the g-tube can come out. Once he is able to drink from a bottle, we will probably start his feeds that way and then finish them through the g-tube when he gets tired. We will be working with an OT when we return home who specializes in feeding therapy.

That is where we are at right now. We will see what today holds. We hope to really focus and push the doctors in regards to discharge date. We are so done with being here and want to be home as soon as possible! Please pray that they are able to wean Caden off the oxygen so we don't have to bring him home on that. Please pray that he gains weight every day. And please pray that with increasing the volume of his feeds that all his medications will stay balanced and he will not have too much fluid in his body.