I was able to post some pictures while we were in the hospital, but I have lots more. So I will do a post or two retelling this whole crazy story. By the way, we are doing great at home adjusting and getting back to our normal life!
Sunday, we spent the day at CDR for middle Sunday but had to leave early because QUINN started running a fever. So we headed home and the boys got good naps. Kanyon and I went to a birthday party Sunday night and he was feeling normal and having a BLAST! That night as we were putting him to bed he had a sort of yucky diaper. He has a pretty complicated "system" as far as that is concerned, but I will choose not to talk about it on the world wide web!! haha!! So Sunday night all the through the night he woke up cramping and having diarrhea. He got VERY LITTLE sleep. Between getting up with him and getting up to give Q his Motrin, I was up most of the night. By the next morning, Quinn's fever was still high and Kanyon was very lethargic and sleepy but his stomach cramps kept him from sleeping. It was very very painful. I called the Dr and was waiting for them to call me back. We weren't really worried because he was drinking a lot so we were hoping it was just a bug. By late morning, the diapers were VERY VERY bad...as in blood. Nothing but blood. Needless to say we headed to the Dr quicker than we expected. Luckily my aunt hadn't gone back to school yet, so she went with me to take them both to the Dr. Not sure what qsp had...just a little virus I guess. They cultured what they could from klp's diaper and started him on antibiotics. They gave me some for q in case he started having the same symptoms. We spent the rest of the day in the chair. All he did was lay in my lap or lay in the chair. It was the saddest thing I've ever seen. Q wasn't really feeling well either so in between changing diapers and clothes, I was holding one of them while the other one slept or just lay there.
This was what he did if I wasn't holding him
Q perked up after about 3 days but klp never did. I just kept waiting to see a sign of him getting better but it just wasn't happening. I talked to the Dr. and they said that the bacteria that the culture showed was Shigella and that it made kids really sick so they weren't surprised he was still feeling so bad. He was still drinking fine, so we felt comfortable with that. Every now and then he would ask to go swing so we would try that. This was usually the most alert he was and it was not very alert.
After about 3 days, the diarrhea slowed down but he still had no energy and felt horrible. At this point he hadn't really eaten all week so we were thinking maybe he was just weak from no food. He tried to eat a couple of times, but threw it up. Then, one morning, maybe wed. or thurs. q woke up dragging. I thought, "OH great. Now he's gonna get this"
This is what the scene was that morning:
NOT TYPICAL QUINN
klp tried to eat some applesause and kept down some but I could still tell he was a SICK BOY
Kory would call or email from work wanting an update.....I sent him this picture as our "morning report"
I tried to perk klp up by getting him to play basketball.....he lay on the floor and fell asleep.
INSERT GOOD NEWS HERE: Quinn never did get it. Not sure why he was dragging so much that morning. Maybe he just thought it was the cool thing to do. Thankfully, he didn't get the yuck.
At this point, maybe Wednesday, he was sleeping longer at night. The first 2-3 nights he was up every 15 min. cramping and crying. Since he started sleeping better at night, I was hoping he was getting better. Then Thursday came. He went from asking for drinks and drinking plenty to refusing to drink ANYTHING. And since the diarrhea let up, we could now tell that his diapers weren't wet at all. By the time KLP got home from work I was really worried. As I've mentioned before, our Pediatrician is the same Dr. that was klp's neonatologist in the hospital. He has literally been our Dr. since DAY 1. He is so kind and generous with his time. He had been checking in on us all week. When I talked to him Thursday, we decided we needed to head to the ER and get fluids. So...my aunt rescued us again. I put qsp to bed (which would end up being the last time I would see him for more than a week!) and she stayed at our house while we took klp to the ER. We were fully expecting to get a bag of fluids and come home. Maybe spend the night if he needed lots of fluid.
Here we are in the ER at probably 1-2 am. klp was a trooper and we weren't really super worried. We were mostly just thankful we live in a place where its that easy to get care for our sick boy. Other than his arms being covered in sticks and pokes, he was ok and gonna get better quick, wet thought.
Finally at about 2 am he crashed. They ended up moving us to a regular room around 3. They said his numbers showed that he was more dehydrated than we thought so he was going to need another round of fluids. I did the math on the amount they were giving him and how long it would take and I remember making the statement..."Well, this is going to turn out to be longer than we thought. We'll be here until at least 4 pm." hahaha little did I know.
The next few hours were really crazy. Numbers stayed really really REALLY OFF, lots of people NOT being able to get his veins to draw blood, lots of laying there by a sick boy, and throw in the high heartrate/ possible seizure spell complete with EEG and EKG, and we had a very busy day. By lunch time Friday we were pretty sure we were headed to Dallas. It was clear that his numbers weren't headed in the right direction and we needed to be somewhere where we could see a kidney specialist. Late that afternoon, our Dr. came back and had a funny look on his face. He said some things had changed. It was then that the culture we had done on Monday had completed and they called him to tell him that it was NOT shigella, it was E Coli! WHAAAAAT??!! It some ways it didn't change anything. Our plan would stay the same, but our Dr. felt like it helped make sense of what was going on. Previously, he couldn't figure out why Shigella was causing his kidney function to slow/stop and why his blood numbers were so off. BUT there is this thing called Hemolytic-Uremic Syndrome (HUS). He explained to us how it starts as E Coli, but the toxins work their way into the blood (causing low platelets, which causes the red blood cells to break down) and the kidneys (they quit working and the toxins build up in his body).....google it for more info. SOOOO that explained why all of his numbers looked the way they did. And just so you know, they were bad. His BUN (which is sort of tells you how much toxins are in his body was over 100....its supposed to be in the teens) his creatinin which is another kidney element they look at was as high as 5. its supposed to be .5 His platelet count was extremely low and that causes the cycle of breaking down the red blood cells. So between an incredible amount of toxin build up in his body plus low red blood cells, the poor boy had NO ENERGY. UGHH.
Though our ETD was 7pm, it was midnight before we left Longview. Kory went ahead and drove so he would be there when we got there. Children's sends their own transport team to come pick us up. We had done this dance once before when he was in the NICU here and had to have his heart and shunt surgery there in their NICU. So it was familiar but very different with a big boy. He handled it great and managed to talk a little and enjoy the lights.
We landed in Dallas around 1am the flight was seriously 30 min. (about what it took us to drive from the hospital to the Longview airport ) and then the ambulance took us over to Childrens. I am always impressed with their transport teams and was again this time. Here is klp on getting out of the jet.
We got settled in to his ICU room and Kory and I managed to sleep on the same couch/bed thing for a couple of hours. The IV team gave him his toy truck after he got his IV and he held on to it for days. He didn't have the energy to play with it, but he held on tight to it! The Dr.s started rounding early that morning (like 5am) so we could get him in and ready for the surgery. They flip flopped on the decision to do the catheter in his abdomen and did the one in his neck. I was fine with that since they know what they're doing. After that surgery he was pretty fussy and groggy but they wanted to do the first dialysis treatment ASAP so they got it going very quickly after the surgery.
Here he is (and you can see part of the machine) with is mask on. When they access that catheter, everyone in the room as to wear a mask. They have to use sterile procedures since the thing is a direct line to his blood and heart. Don't really wanna get that thing infected! He was very fussy and uncomfortable from the surgery and required a LOT of entertaining/soothing for the hour and a half treatment. But once it was over, he settled in and did Ok. He was asking to eat and drink, so they did't have to do TPN (IV nourishment). That was Saturday. We spent Saturday night in the ICU again and they moved us to a regular room Sunday morning/afternoon.
We fed him fries until he didn't want any more!
He was on fluid restriction because he still hadn't peed yet (YET) and they were trying to get fluid OFF of him. But he was SO THIRSTY. It was heartbreaking to have to take the straw away from him. He peed 24 hrs. after his first dialysis so each day his fluid restriction was less and less until he could drink as much as he wanted.
He was really sore and didn't even move much, but after a few days we were able to pick him up. He'd been asking to rock for several days, so we were glad when we finally could! Gram came in from Montana on Sunday night or was it Monday???? She spent the days with me at the hospital and was so much help and good company! Below is klp's attempt at a CHEESE smile.
Thursday night klp actually tried to play with a toy for the first time. I had not seen him make an intentional movement with his arms in DAAAAAYS. so we were happy! This was the toy!
more cuddles and songs with Gram
They usually came in our room to do the dialysis and he would just lay in his bed and sleep through the whole thing. But one day they took us to another room to do it. They made him wear this oxygen mask. He didn't need it, but they made him wear it. Not cool. Annoying. So I put it up on his forehead. Muuuch better.
We had so many wonderful visitors and I did not even come close to getting pictures of them all. Cousin Paige got to come hold him for a while. She is such a faithful friend (cousin) to Kanyon and our whole family.
Aunt Freida was so great. She and Uncle Richard were our home base. Susan stayed there (its her sister), they brought us food, visited, and several of their friends that we don't even know sent stuff and came by. They are so great.
Thursday night he wanted to play with another light toy so I let him. I was so happy he had the energy to play even if it was just pushing a button and staring! He didn't want to let it go. He was supposed to be going to bed, but instead our room looked like a disco club with the spinning lights. The light would stop as he would doze off, but then he would wake up and push the button again and the THE DISCO CLUB WAS OPEN!!! haha!! He finally fell asleep for good......His nights were full of people in and out doing stuff and early morning blood draws that really really REALLY made it hard to sleep good.
On Friday, Eric and Jean delivered the signs the high school youth group made us. Eric is the Youth minister and we do a lot with these high schoolers. Those kids are so sweet to Kanyon and Quinn and were so sweet to make these signs for his room. He was the talk of the hospital! They were impressed with the decor!! I took pictures of them...so great!!! some of them were hilarious.
I'll end this part with klp eating a french fry. He seriously ate them at every meal. The food there is good and according to klp, it all goes great with french fries!!