Day 5 Updates

Let me just start out by saying I was very frustrated yesterday. Alyson stopped eating by bottle and would have nothing to do with it!!! She wouldn't even take her binky so the nurse looked in her mouth to see if she had sores which she didn't. The nurse also tried to wake her up in the middle of the night for every feeding and one time Alyson got really upset she was being woken up. Her formula increased to 27cal so I didn't know if that was the reason she stopped taking anything orally. Alyson is doing pretty good right now but the nurse wanted to see what we could do to get her to eat again. I kept thinking what changed.....was she in pain, was she getting too much, was the calories too high? I found out that she was only given pain medication once that day and twice the day before so I thought she might have been in too much pain to eat. I wanted Alyson to have it constantly because how could she not be in pain after having major heart surgery just days before so the nurse scheduled her pain medication every 4 hours. This morning after having pain medication all day long the day before she still didn't want to eat. They decreased one feeding o 24cal and that made no difference either. I thought maybe she liked the pre-packaged formula better that was already mixed. Theoretically the powder and liquid formula should be the same but it looks different so the nurse said to give it a try (it is back down to 22cal formula). The first feeding with it she ate 2 ounces and the next two feedings she ate a little over 1 ounce. It's not eating everything by bottle like she did before but definitely an improvement from the day before where she didn't want to eat anything. She is currently scheduled to eat 3 ounces every 3 hours so hopefully her body will get used to that volume and schedule so she will start feeling hungry enough to eat all of her bottle.

She is on .5 liters of oxygen and they don't want her to go below that for at least a few weeks post-op until her body regulates after the Glenn surgery. She had an echocardiogram on Friday and they saw decreased function in her left ventricle so they started her on a new medication and increased the amount of Enalapril (another medication) she is supposed to get. They said that the left ventricle not performing 100% isn't "common" but it does happen. Her pacing wires were taken out yesterday too so the only thing she has left on her body is the External Jugular line in her neck her an IV so they have one readily available. That will not come out until discharge or it won't work anymore.

Today they noticed that her heart was having a different rhythm than it had in previous days so they decided to do a 12 lead EKG today to see what was going on. They stopped the new medication because it could be interfering with her Amiodarone and will just watch her over the next couple of days. Nothing else really is a concern to them except they want to work on her eating by bottle again. She has gained weight though so she is just a few ounces shy of 12 pounds! Unless something happens, we are looking at this week for her to come home.