Saturday, June 20, 2009

Looks like we're finally turning a corner

Originally posted June 13, 2009

Wow, have we had a stressfull couple of days!
Last time I gave an update on our precious little son, was the day he had his surgery. Almost a week ago. It's not for not having anything to report, it's because things have been so scary and crazy and awful that I haven't gotten a chance to get on the computer. I know that when things were the worst was when I needed to rally everyone to pray, but I have had faith that people have continued to pray earnestly, even though you don't know the specifics.
Most scary was when we were waiting for Luke to come out of surgery when we could go in and see him. The surgeon's nurse came out and told us that Luke's heart had arrested in the elevator going up to his room. they couldn't shock him out of it, and so had to be put on a heart lung machine called ECMO. This machine did all the work of Luke's heart and lungs for him while he rested and started to recover from the shock of surgery and cardiac arrest. Luke was in arrest for 27 minutes. This seems like a really long time to me, but the nurses tell us that Luke was able to be put on ECMO lightening fast. This was able to happen because Dr. Mendeloff, Luke's surgeon, was in the next room preparing for his second case. God was with Luke, answering all of our prayers by making Dr. Mendeloff so near and available to save Luke's life for the second time that day.
We were told that one of the risks of ECMO is bleeding into the brain. They told us that if Luke began bleeding in his brain, they would have to take him off ECMO, and his heart would either have to work properly, or he would die. Before the surgery, Dr. Mendeloff told us that Luke would get much sicker after surgery before he got better. They told us when we saw him right afterward, we would see his chest still open (though covered with a skin-like membrane) to allow his heart room to swell, lots of new IV lines, he would look pale, and he would be cold to help his heart regulate his heart beat. I thought I was prepared. I wasn't. When I walked into his room, the first thing I saw was his IV tree. Luke had two IV poles by his bed and I counted 18 different medications being given to him at the same time. When I looked at my son, he looked dead. I would have thought he was if I couldn't hear his heart beat on the monitor. He was so pale and still. His body looked like he had been through a war. Like he had been chewed up and spit back out. He looked like a little doll chewed up by a dog and then sewn, taped, wired, and jerry rigged back together. I was in shock. I couldn't speak, all I could do was cry. It didn't even look like my little Lucas.
On Wednesday, the doctors were encouraged that his heart and lungs were doing well and had become strong enough to do the work on their own. God was again in the timing because we found out that morning that Luke had begun to bleed a small amount into his brain. We needed to take him off the machine, and he could not go back on because of the bleeding. We prayed that Luke could survive on his own. All throughout the day they weaned Luke from the machine and he did more and more of the work on his own. About 5:00 that evening they took him off completely and he did beautifully, in terms of his heart and lungs. That moment began a second critical period of 48 hours in which we waited to see if Luke could take what we are putting his heart through. David and I traded off shifts, allowing each to sleep a little while one of us was with him around the clock.
We were told that Luke would get sicker, but we only expected things to go wrong that were heart-related. We were wrong again. All kinds of things started to go wrong all over Luke's body. One of the down sides to the ECMO is instead of your body parts getting a pulsating flow of blood like they woud when your heart beats, they get a continual steady stream of blood. The kidneys really don't like this. So this pulse problem coupled with the 27 minutes of arrest on Monday caused Luke to go into kidney (renal) failure. He stopped making urine and doing other things that kidneys are supposed to do like regulate potassium and calcium levels and make red blood cells. Wednesday morning they told us that Luke would have to go on dialisis because his potassium levels were getting dangerous. So they again transformed his hosipital room into an operating suite (they did this when they took him of ECMO) and put in a dialisis catheter into his abdomen and started his dialisis treatments. Because of going on dialisis, Luke's fluid levels and body chemistry, primarily his glucose levels and blood pressure, are constantly out of whack.
Also Wednesday morning at 6:00 and 6:45, my mom and I witnessed Luke have two siezures. They don't know why he had these siezures, but it probably has to do with either the 27 minute arrest, the bleeding in the brain caused by ECMO, or both. They will do a Head CT later when Luke is stable enough to move to the CT lab.
Luke is also having trouble with the circulation in his right leg. They had an arterial line in his right foot, but somehow it caused a blockage in the veins of some kind, causing his leg to become engorged with blood. His leg has been purple from the knee down and incredibly swollen.
Wednesday was a nightmare, and I admit I had several moments when I wondered why we were putting him through so much. It was difficult for me to comprehend that his heart isn't the only thing we have to worry about. It's so incredibly frustrating to have things that are supposed to help him, like ECMO and dialasis, end up causing more and more problems for Luke to surmount.
Yesterday and today though, we feel that Luke has turned a corner. Instead of getting progressively worse, they seem to be getting better bit by bit. David and I arrived at the hospital this morning to meet the smiles of his cardiologist and his surgeon. They announced that he's making a little bit of urine now, the swelling in his body is going down, so they may be able to close his chest on Monday. They both were quite encouraged, which as you can imagine is quite a relief to David and me. His blood pressure is becoming more steady, and it looks like we have his chemistry levels under control for the time being. His little leg is even headed towards the right color, though it's still very swollen.
We've had an extremely long week, and the road will still be longer. We need to pray that function will return fully to Luke's kidneys, that his heart and lungs will continue to get stronger so we can get off of the pacemaker, and that God has protected Luke's brain from any damage in function through the 27 minute arrest and siezures. We need strength to keep going with Luke through this. I knew this was going to be very hard, but I didn't expect it to be THIS hard. I'm thankful that my mom and dad are still here to support us. They will go home on Monday. David's sister is getting married today, so David has gone for the day to see her get married. He'll return late tonight. Please pray that nothing critical happens while he's gone.
Thank you all for your continued prayers and support. We love you.
Rachael & David

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