A Dream, A Fighter - Matthew (2)

"Date: Wed, 28 Jul 2010 00:38:09 -0300
Subject: Tuesday - are you sure that thing is plugged in?

Hello once again,
Last night after I sent the update I talked to Michelle again. She told me that Matthew's breathing was very laboured and he was having a hard time. This had been happening since about 1 pm yesterday. I didn't understand that in my conversation with her yesterday afternoon. When I talked to her last night they had discovered that his life support machine wasn't working. I'm very disturbed that it took them 5 hours or more to find this out. When they tried to take the breathing tube out last week Matthew was breathing just as hard. At that time they let it go on for 28 minutes before they decided he needed the tube again. They said that if he kept up that way he would be in a critical state. Yesterday he started breathing that way and it took until after 6 pm for them to realize this. They said that this never happens, etc. That was our adventure yesterday.
Part of Matthew's trouble yesterday was due to the situation I just described. His fever is still an issue, but he had a much better day today. He only had a slight fever at 7 am that didn't last long. They aren't sure why this happens each day.
Because of the issue with the life support yesterday Matthew tired himself out. They had to put him on full support as they did when we first arrived. This is best for him for the time being as he needs to rest and grow. He does need to get back to a place where he is breathing some on his own and then move to only pressure support as he was before the attempt to remove the tube. Doing some of the work himself will help to build the muscles used for breathing.
He had some blood in his urine today. The doctors are not overly concerned. They think it is attributed to all of the diuretic medication he has been given to make him pee high amounts. This can have some strain on the kidneys. They are going to watch this very closely and make sure it is nothing else. The doctors check some blood work regularly to monitor this. The number was quite high yesterday. It is supposed to be between 1-7 and it was at 50. They have decided to not automatically give a diuretic but only give it if he starts to retain liquid. They want to keep his liquid between +50 and -50. It is a very difficult balance with Matthew. He is getting too dry, but he cannot retain too much or his heart will have to work very hard and his lungs will not be able to function well.
This morning they weighed him and he gained around 3 oz. This was quite a surprise because of all of the energy he expelled yesterday when the machine was not working. This is great. He needs to continue that trend.
Michelle talked to the original cardiologist that did Matthew's first IWK echo, Dr Wong. He talked to her about the heart - the original reason why Matthew was brought to the IWK. He said that the condition, Pulmonary Atresia, is the most challenging heart defect that they work with. With Matthew's anatomy it is even more challenging than most. They are still waiting for Matthew to grow to determine when or IF they will be able to do surgery for his heart. He also pointed out to us that Matthew has really been through a lot and really "should not be here". He has surprised many doctors there. He said that even a small thing like a cold can be fatal for Matthew. This really puts things into perspective when we are praying.
I know that is a lot of info and these updates are never-ending, but we appreciate all of you who are on this journey with us. We appreciate your prayers and support during this time. Sometimes it feels like it is more than we can handle, but God is giving us the strength to carry on.
Thanks for reading", Mom & Dad

Please remember these folks as they travel through this.