2 months old ♥

Saturday August 4th:
Happy 2 month Birthday Madden!

For the most part Madden had a very good day. He was settled, happy and alert. At about 4pm the RT's came in to do a tape change on his breathing tube this took a good 40 minutes and left us with one very upset baby. I got to the hospital around 5:30pm and Madden was STILL crying. The nurse had given him adivan, chlorol, morphine, tylenol and kedemene. I tried to settle him by talking to him but he was way too far past that point. His heart rate was high and his blood pressure was low. He was desat'ing and was very very uncomfortable. The nurse took his temperature  - 40.4. Not good. So cultures were taken from everywhere and sent to the lab. The doctors were also called into the room to see what was going on. By this time it is 7pm and he is still crying. Madden now has no blankets on and has cool cloths on his body and head to try to get his temp down.

Dr Aditia looks at me and says - what usually helps him when he is like this? Fluid. For some reason he needs the fluid. So Dr. Aditia gave him two doses of fluid. This does help to birng down his heartrate and bring up his pressures a bit. Then he asks me if we should transfuse him. His hemoglobin is only sitting arounf 97 and he does seem to be "happier" when he is at least in the 1teens. So I say yes and the nurse orders blood. He also wants to give him fentinol...which I am not really keen on but he says "we need to break the cycle and get him to relax" so more sedation is given.

Eventually the blood, fluid and sedation all kick in and Madden's numbers start to all settle out around 9:30pm. However this is WAY too long for him to have worked this hard. Dr Aditia sat down with me again to talk as I cried. I just don't get how such small things can make him so upset for so long. It's not normal. Normal babies don't do this. He reminds me that "normal" babies also don't have two huge holes in their heart. Because of Madden's anatomy his heart has to work 3x as hard as ours to do the job he needs it to do. When he gets agitated and his heart rate goes up it works so hard and expends so much energy that he can't recover on his own. He explaned it much better and in much more detail. We decided that Madden will get sedation prior to doing anything to Madden that has the potential to really make him angry. It's hard to accept that he needs this but it saves his body from the potential of much more sedation and over working his heart. The lesser of two evils I guess. It just makes me even more impatient for surgery day.

Madden we love you as big as the sky. xox