Wednesday, September 7, 2011

Long awaited update

I know that it has been quite a while since my last post and I do apologize. There were a few things that made me wait so long. The main one being that I wasn't feeling so hot. I let stress get the best of me and was extremely nauseated all weekend. No matter how well you think you can handle things, you don't always do that well. So I will pick up where I left off, just to give you an idea of what's been going on.

Friday, Jason left around mid-morning to go home and take care of a few things. Let's be realistic, it would be nice if every day things could come to a halt when you're in the middle of something so serious, but they don't. Tropical storm Lee was on it's way and we had a few things to pick up. (we knew it wouldn't be anything too serious, but they were expecting a lot of rain and heavy winds) He had business to take care of with work.. Bills and mail to pick up, etc.

Now, since Parker's delivery, the pediatric nephrologist had been out of town. When do you think he will come back and want to meet with us? Of course, it's the one time when Jason isn't with me. So, I go upstairs and meet with him and we talked for a long time about everything ARPKD means for Parker. Of course, this is the first time I meet this doctor, so he has yet to find out about my semi-OCD tendencies and all the research I've already done. The final conclusion of the meeting was that we would wait through the labor day weekend and see how Parker did. They would decide on Tuesday (yesterday) whether they were doing surgery or not. I am crushed and by myself! Here we are again talking about surgery. I thought we had left this hurdle in the dust last week, since all of his labs were doing so good, but apparently not.

Saturday, the weather started to deteriorate and we were now going to be stuck in the hotel for a few days waiting it out. Jason says he now knows what it feels like to be put in an old folks home. He said he just hopes those people have a big window to look out of like we did.

Between Saturday and now many things have changed. Parker had to be put on blood pressure medicine (we knew this was possible), a shot to produce red blood cells, and a stronger diasylate. He was able to be taken off of the vent, and he did very well with that. He was put on a comfort flow canula and he held his own. It made him really mad at first, but he eventually got over it.

So, Tuesday comes around and the long awaited decision of surgery is made. On Friday September 9, he will have surgery. He will only be two weeks old, and my little man is already facing major surgery! I know it is what's best for him, but it still scares the daylights out of me. We do not know, yet, if they are taking out one or both of the kidneys. We will find out definitely tomorrow. There are several different doctors working as a team to make the decision that is best for Parker.

After surgery, the main goal is to get Parker back off of the ventilator and onto a dialysis schedule. Yes, you read correctly. I did say "back off of the vent". He has to be reintubated for surgery. They do not expect it to take long for him to be taken off of it this time, since he's already been able to tolerate breathing without it before. Hopefully, 1-2 weeks after surgery we will be moved to Children's hospital, which is only 10 minutes away from ), where we can begin dialysis training. Once we begin dialysis training it should only be 3-4 weeks (fingers crossed) until we can bring the little man home.

So at least now we have a plan of action and a long term goal. Please keep him in your prayers. The next week will be so tough for him.

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  1. Thank u for the update. We are sending the word that "He bore our griefs & carried our sorrows & by His (Jesus) stripes we (Parker) are healed. Isaiah 53:4

  2. My name is Cindy DuBois. I used to be a Lirette. We graduated together from South Terrebonne. We are also related through your dad and my mom. Your mom knows me and can explain the relation. I'm following your story and can semi-relate. My daughter has had two open heart surgeries to replace two valves. Her first surgery was as 3 weeks. It is very scary but doctors have amazed us on the things they can do today. I know you are finding out that babies are much stronger than we are. We know how financially draining the situation is. I will be contributing to both benefits and tryig to get my family involved as well. After all, technically you are family. Good luck and we are praying for y'all.