Sunday, July 31, 2011
We moved down to a regular room on the "kidney floor" where we will make our home for the rest of our stay here. Its nice to have our own bathroom and a little more peace and quiet than in the ICU. The plan is to do a dialysis around 6am in the morning and we will pray that all goes well with that. This is not going to be a speedy recovery. It is a slow boat, but we just hope to see the numbers move in the right direction. An increase in blood platelets as well as him peeing would be really GOOD signs. Those would be signs that his kidneys are working. We have been told it could be days or even weeks before we see these, but we are of course, hoping for those positive signs SOONER rather than later.
As I type this, Kanyon is eating a little bit of grilled cheese and applesauce and even a bite of chicken nugget. This is the first real food in a week, so we are excited! They are allowing him to drink water because he is so thirsty. However, since we are having to watch our fluids, he is on a very restricted fluid intake. We are glad to see him eating and drinking! This will keep him from having to go on TPN (an IV fluid that replaces food).
He will have a blood draw this evening and it will give us info and set us up for what we hope to accomplish tomorrow. As long as nothing major changes, I'll wait and update again tomorrow after the treatment.
I know I keep saying this, but THANK YOU. This support makes ALL the difference. I really think this experience would be absolutely unbearable without such incredible support. You are literally holding us up through a very very tough time. We don't feel alone and that makes all the difference.
Saturday, July 30, 2011
Sent from my iPhone
He is back in the ICU room and they will do the first dialysis treatment within the next 3 hrs. Please pray that this goes smoothly. While it's routine for the people here and a common procedure for them, it is still serious and involves a lot of his organs and functions. It is quite a balancing act especially these first few treatments. It will be a short, 90 min treatment and he will work his way up to 3 hr treatments. I'm new to the nephrology world so we are learning as we go here. From what I understand, our main goal is to get rid of the built up fluids that he has acquired the last 2 days. We need thus to be successful so that fluid doesn't build up in his lungs and cause pneumonia. The dialysis team is here in the room getting set up so we should be able to start within the next 1-1 1/2 hrs. Because of the change in location for the port they did not place a central line.
Pray that he tolerates this well and that his pain is under control. There is a lot going on here so we can't possibly explain how much your comments, calls, emails, texts, and faithful prayers mean to us. We know GOD has the power to heal and we are begging him for just that. We, again, are amazed thankful for modern medicine! We know all these good things are blessings from GOD. Thank you for doing what you do so well in supporting us praying for us and going above and beyond to love us.
On another note our attending ICU Dr walked in and he's a friend from ACU!! Saying prayers with you Dr is a good feeling.
On ANOTHER NOTE I'm doing this from my phone so I am choosing not to worry about spelling and punctuation! Kinda like when I misspelled dialysis throughout my whole post earlier today.
Hopefully I can keep the blog going. Again, thank you.
OK Everyone here I am in an attepmt to get the word out and keep everyone posted on our Grand Kanyon. Here is what has happened so far:
Kanyon had (what we thought was) Shelliga, a stomach bacteria. It was bad and hit him pretty hard, but we just thought he would get overt it. By thursday he had stopped drinking fluids so we felt like he was dehydrated so we ended up going to the ER to get rehydrated. We planned on a simple night in the hospital, but as we al know, that is not what happened. Even with the bags of fluid, his kindey levels were still not improving. We spent the day Friday hoping to see those levels improve and that he would pee! Neither of those things happened so the decision was made to go ahead and go to Dallas. He needed to be in and ICU and seen by a specialist. It was then that we found out that it was actually E Coli not Shelliga. He is now diagnosed as having HUS which is a syndrome refferring to kidney/blood damage......thanks to the E Coli "bug" and the toxins it released, one of which was the Shelliga which is why his cultures came back showing that bacteria.
To make matters even more interesting, during the day Thursday he had an episode of high heart rate and shivering. He has done this before, but it had been a year and we thought we were over all of those things. The up side to this was that we were in a hospital so they could run and EKG (to check his heart) and and EEG (seizures) while the "episode" was happening. The EKG was normal, but the EEG did show some irregular activity, but its not clear whether or not it was an actual seizure. With his history of brain injury and CP, his brain is already "irritated" in that area so it probably got more irritated when his body was under so much stress. So....that is that. Now that its over, it is not really a priority as far as figuring anything out. We will follow up with some Drs, but we aren't too concerned about it now.
OK back to the kidneys. They FINALLY came to longview to bring us to Dallas. Kanyon and I flew on the jet/plane and Kory drove to Dallas. Quinn is with my parents in Paris. We arrived here in Dallas at Children's around 2 am and havne't really stopped since.
So, this is where we are now: He just recived some platelets because his platlet count has been low. He is ready for a procedure this morning to place a cathetar/port in his abdomen. This will be where they will do the dialysis. They are also putting in a central line to help with fluids, blood draws, and nutrition. This procedure will take maybe an hour and he will be sedated. Our big hope here is that the abdominal placement is successful. If for some reason, it doesn't work, they will have to do it in a vein in his neck. NOT COOL. We need to catch this break. We need the abdomen to work. They will start dialysis today and that will be the beginnign of relief for his body. The process of dialysis will help rid his body of the toxens that have built up since his kidneys have stopped functioning. Generally speaking, this is a successful plan and they said 95-99% of kids have no other complications or any long term dialysis needs. We are praying we fall into that %! We are also hoping to see his platlet counts and some other numbers improve and they feel sure that they will once this whole thing gets started.
The kicker here is that its not a quick thing. We thought it was....we were thinking days,maybe a week. They told us today to plan on being here a month. WHAT????!!! We haven't had much time to process that so we will have to go back to the drawing board and figure out how this is gonna work for us. They told us the BEST case is 2 weeks, but to plan on a month. SOOOOO interesting. We'll get a plan one way or another.
As far as Kanyon, he is being such a trooper. He is lethargic, but will talk some and interact when he perks up. He hasn't had much sleep since the last 2 nights we've been in an ER/moving rooms or transporting in plane to Dallas. He is patient and tolerant of most things, but he is DONE being stuck with needles. It is heart breaking and I am to the point where I feel like neither one of us can take another stick. Here at Children's they are pros with the little veins, so that has been better, but it is still rough. His arms are COVERED with pokes, but he is doing so good. He turns on the charm and manages to woo his nurses/Drs, etc. We look forward to seeing that spark back in his eyes.
He is a sick boy. This infection has done a number on his body, so please pray that we can get it under control and get his kidneys working again and get rid of the HUS! I am in a fog to say the least, but I felt the need to inform the troops. Pardon the incoherent thoughts and typeos. I'm in a hurry. Thank you so much. It is incredible that within minutes of all of this happening our friends and family surounded us. We are familiar with this feeling as we've felt it many times before, but it never gets old. We are beyond blessed. Thank you for prayers. I'll do my best to keep the blog updated one way or another. I hope this makes sense and is somewhat clear.
Thank you for your prayers. We love you all!
Wednesday, July 27, 2011
It was a great week of laughing, talking, eating, playing, working, with AWESOME weather and EVEN BETTER FAMILY!!