Some days when I sit down to write these posts I don't even know where to start. Today is one of those days. So much has happened in the last couple of days and I am still trying to wrap my head around the direction we are going. The last few days have been a little overwhelming for me and so this post will be another catch up post.
Monday - Madden is 8 weeks old! Happy birthday little prince!
This day already seems to far away for me to remember what happened. All I can really remember is that Madden spiked a fever and cultures from everywhere were sent again. He was given a number of PRN's of morphine and adivan for discomfort and agitation. Blood pressure continued to be a problem. I took the evening shift cause Rocky had been away over the weekend. When I saw Madden I cried, every time I looked at him I cried. He wasn't looking like himself anymore. He was so puffy and looked so uncomfortable. I didn't end up staying as long as I had planned because all I could do was sit there and cry.
Yesterday was a whirlwind of a day I got to the bedside as the nurse was giving Madden fluid to treat his low pressures. This worked for about 5 minutes and then his pressures dropped again. So more fluid was given. They ended up having to give him fluid 4 times in about an hour to get his pressures up. As they were giving Madden fluid you could literally see his stomach and his face get puffier. He seemed to be getting the fluid and third spacing it instead of using it where his body needs it - his organs. Babies usually third space when they are very sick, it happens because their vessels become leaky. After the blood pressure was under control a stomach ultrasound and xray were ordered to see why Madden's belly is so distended - looking for infection or air etc. It just seems to be fluid. Madden is in a tough place because his organs - heart, brain, kidneys etc. - all need fluid because they are getting dehydrated but Madden is also very fluid overloaded and puffy because the fluid that is being given he isn't using. At the same time Madden was having blood pressure issues, he was also dropping his heart rate into the 70s and 80s. The nurse couldn't feel his pulses well and people started to gather around the bed. I had to leave. I called Rocky hyperventalating and told him he needed to get to the hospital. I went back into the room after about 15 minutes and Madden's heart rate was back up and he was doing a bit better. All in all it was a rough day for Madden.
Tuesdays are also the day where all the cardiologists and cardiac surgeons meet to discuss the "cases". Madden was a big topic of converstion at this meeting. The intensivists in the unit feel like Madden isn't moving forward and the time has come for an intervention. The problem is that Madden is still less than birth weight and is now eight plus weeks old. He isn't as old, as big or as healthy as they would like him to be for this surgery. Which makes the surgery high risk. However, they still think the time has come for Madden to get "some help" medically.
After the cardiac meeting the surgeon came and met with us and told us that he is planning on going in and repairing the two holes that Madden has in the center of his heart. Which means they will be going the route of a two ventricle heart. He also told us that for this to happen he needed to get some more information on how big Madden's left ventricle really is. The MRI that he had done previoulsy showed that his LV measured 22...the norm is 40 - 60. However, he thinks that the ventricle is bigger its just being squished by the right ventricle. He wants to have another echo done tomorrow, a 3D and a 2D to get the pictures required to know if this is going to work. He also plans to do the surgery on Saturday or potentiall Friday if he can fit him in. Friday is Kaelin's 11th birthday.
We then sat down with Madden's two primary doctor's at different times. They both feel that Madden needs this surgery and this is the best chance that Madden has at a healthy life. The surgery is high risk because of how small he is and the fact that his anatomy is so different. There is a potential that his heart can not function like the rest of ours and this surgery will put him in a very bad place. Our primary who is a cardiologist believes that this is the right path for him and that the surgery should work. If it doesnt work he does not think Madden's anatomy would support a single ventricle heart so our only option would be a transplant. Our intensivist who is an anesthetiologist is actually on in Peds OR this weekend and will be with Madden through his surgery. He has become close with Rocky and truly wants the best for our baby. He looked at us during out meeting and said "you know I will treat Madden like he is my own boy and I will bring him back to you". To know that someone who truly cares about Madden will be with him through this next open heart surgery is a very comforting feeling in a very uncomfortable situation.
In my heart I beleive that this is what Madden needs. He has struggled so much along the way that they anticpate him to get very sick after the surgery. I know the first 48 hours after surgery will be rough but I believe that after those 48 hours are past, Madden is going to start on his path to becoming a happy and healthy little boy. We will get our baby home one day.
Madden you have proven yourself to be a little fighter. You will get through this and one day we will get to welcome you home! Keep being strong my sweet baby. We love you as big as the sky! xox
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