Chad, Ally, Daxton, Logan and Cache: August 2009

Bag of blood from the transfussion

The famous sweatshirt

The first time home in 10 days... YAY!

Playing on the ground not attached to any machines.

Laying in bed... this is what he did most everyday.

He made us hold his cup to drink.

All the wires, bandages, and IVs.

Logan came to visit for dinner in her PJ's... that Aunt Heidi had her wear all day. :o)

Being Silly

These are the stink masks.

Coloring with Maesee.

Smiling cause Maesee came to visit.

Silly Orange Face

So where do I start? I've had this feeling for about a month that something was going to happen, nothing way bad, but just something. I always get these feelings and I trust them, but this feeling was different it was one where I knew I could do nothing to change it. I think back now and know there was no way I could ever imagine something like this ever happening to anyone, because first off, I had never heard of it.

It all started Sunday, July 26th. We had spent the weekend at the cabin with Clint, Danny and our family. It was a great weekend filled with lots of fishing, 4-wheeling, and playing. Sunday Dax kept saying he didn't feel well. We just thought he had to much junk food that weekend, so we went fishing and Dax would not fish. That is not like Dax, sick or not, Dax always wants to play and run around. So we decided to head back to the cabin. Before this Dax had already pooped his underwear twice that morning, so we got back to the cabin and he laid around. Then out of no where he threw up and was still pooping... so we headed home. He threw up in the car, and then we got home to a freezer full of meat and fish that had been left open. Great, we have a sick boy, no food, and it smells horrible.

The pooping kept coming into the night and at one point I was running to take him to the bathroom and bam, all the poop went down this leg... it was red. I was so scared we called the doctor and went to see them at 5:oo in the morning. The doctor said it was gastroenteritis virus and he would have it for 24 to 48 hours, but it passes easy...keep him away for others.
So we went home and Dax slept, pooped, and threw up all day. It felt like I had a newborn again, because he would not get out of my bed at all, I had to get him up. Logan was sad because she could not go in my room and I was so tired. So when Chad got home we decided to call the doctor again and made an appointment to see another doctor. At 8:00 that night (Monday, July 27th) we saw the other doctor, two doctor visits in 14 hours, and in that 14 hours Dax had lost 1 1/2 lbs, and would not walk at all. The doctor ordered labs, blood and stool, and we were lucky enough to get a stool when the doctor was still there... it was liquid, bloody poop (sorry this is so gross, but I want to make a blog book and need to remember the details). So we went to Davis Hospital to do labs and it took FOREVER... not a fan of Davis.

The next day was worse then the first day, he slept pooped, and threw up (not so much throw up). It was sad so sad. He was so limp, would not drink anything, and cried because his tummy hurt so bad. It was so sad to see him like that. He didn't even look like my little Dax anymore. He was so little you could see his tail bone, ribs, he had no belly, and sunk in eyes. We had another doctor appointment on Tuesday, July 28th, with his primary care doctor. Right when he walked in the room he said "oh no, this is not good" and went on to explain and few things to me. He said that we had to go the Primary Children's Hospital... now I was so scared.

I called Chad to come and get us to take us down to the hospital. Primary Children's was amazing from the moment we walked threw the emergency room doors. They took Dax and weighed him, and was talking to Chad while I checked in... no wait. We went the room and they checked Dax out, went over what had been happening, put him in a pull up (which he was so embarrassed about), and took labs (when I say labs through the rest of my story they are blood and stool). While we were in there waiting for more doctors who knew what to do, we knew Dax needed more then just a father's blessing. Just when we were about to call Rex (Megan's husband) in walked Fritz (Rex's uncle). He said Rex called him and said that Chad will need help with a blessing... it makes me want to cry writing it. Fritz works at Primary Children's Hospital so it all worked out great.

Just after that amazing blessing, the doctor came in and sent us to the 24 hours recover unit until they could decide what was wrong with Dax. At the end of Tuesday, we still had no clue what was wrong. They couldn't give him anything for the pain, they only gave him an IV for fluids... all we had were prayers. I stayed the night at the hospital and it was a long night. Thanks goodness Logan was in good hands with my mom.

Wednesday (7/29/09): Still the same with Dax... tons of doctors, labs, and IVs. Chad came back and the doctors said the he had e-coli and it had to run its course. So I headed home to shower, see Logan, and get new clothes for the night. I dropped Lo off at Brianne's to nap, so I could head back to the hospital, and that is a story in itself. She woke up early from her nap, was quiet as a mouse, and body painted herself with her poop. Bri cleaned up her poopy art all the while knowing I would do the same for her.
When I got back in the room there was this big ugly word on the white board Hemolytic Uremic Syndrome (HUS). The doctor didn't explain it very well at first, she just said that it was a bacteria that attacks the kidneys so he might have the have a blood transfusion and/or dialysis. So at this point she has not said how bad it is or what it does. It was scary... dialysis? What? Why? Blood transfusion... again, what? Why? No answers.
They moved us up to the 3rd floor for a longer stay then 24 hours. We had kidney doctors, residents, regular doctors, nurses, techs, visitors, etc. It was a busy second day. The kidney doctors then came in and explained what was going to happen. With the bacteria (HUS) there was no way to treat it so it just had to work its way out. They kept doing labs and Dax was so out of it he would thank the nurses when they drew his blood. All he did was sleep, poop and watch TV... it was a long day. Chad and I decided that we would switch up nights staying there so at least one of us could see Logan for a little bit during the day.

Thursday (7/30/09): By this day Dax had lost a total of five pounds. Even on IVs his sodium was way low, his blood platelets were 22 (when he went in they were at 360 & normal is 150 to 400), his HCT was 32 (normal is 34 to 40 when we went in it was high 48) BUN and CREA (how the kidneys are working) BUN 35 (normal 7 t0 18) when we went in it was 26, and his creatinine 1.68 (normal 0.23 to 0.61) when we went in it was 0.49. These are the labs they were focusing on the most.
By this day we knew most likely he was getting worse, not better, but still there was nothing we could do... it was so hard. My parents we supposed to be on their way to hike Kings Peak (my dad wanted to climb it before he turned 50), but they didn't. They will never know how grateful we were they stayed home. I needed them so much as did Logan, so thank you, thank you.

That night after a long day at the hospital, I stayed and my parents house. My mom stayed up with me and I remember just crying to her. It is so hard when there is nothing you can do and the only thing you can do is put your trust in the Lord. At this point I really thought he was not listening to my prayers or anyone else's for that matter. All I could think of was why me? Why us? Why Dax? Why, why, why?!! We honestly have been through a lot. That night as I got on my knees to pray it felt as I was hit in the head saying, "Why you? Because you can handle this. You should be grateful that your child will get over this and be okay. There are so many kids out there that have to stay so much longer, and go through so much more... that is why you." Why us? Why Dax? Wow, now I felt bad. From that moment I was not scared, I knew the doctors were there to help, and that the Lord really was listening to everyone... talk about trying your faith. Friday (7/31/09): His platelets had hit a low (15), and that meant a blood transfusion would be given at anytime. It was a 90-95% chance that he would have to have one, and so Chad and I were okay with it. He had plenty of visitors and everyone that came to see him brought him something, so thank you everyone so much. If he was not really in the mood to see people he would tell them to get out of the way if they blocked the TV. On this day Heidi (Chad's sister) also told us if we wanted she would come up and stay until Wednesday with Logan. She helped us out so much... she must have known we needed her, and her great laugh (I love it)!

Saturday (8/1/09): Heidi heads from St. George with Chad's cousin Jamie... thanks again. Another long day at the hospital with lots of labs. The labs were getting worse, which was a sign that the kidneys were not working like they should be. His creatinine was 3.61, way high, and BUN 81, also way high.

So let me explain what HUS is. It is a rare disorder that affects children most often under the age of five. Children have stomach pain, vomiting and very severe bloody diarrhea. They are very tired, pale, and irritable. The form of e-coli Dax got was the only one that infects the intestines and makes a poison, which gets into the blood. Blood flows to the kidneys, which filters waste materials and extra fluids from the blood. If the red blood cells are damaged, the kidneys have to work really hard to remove the waste and extra fluids. If the kidneys are not working well the urine/fluids can stay in the body and can cause high blood pressure. It can also pool in different places, like the hands or feet and cause swelling. How HUS is treated is that Dax had to stay in the hospital until they knew the kidneys were working well. A good, average hospital stay is 10-14 days. they had to monitor his blood pressure, temperature, and sodium. All these things, if not watched carefully, can cause seizures (scary huh). Dax during everything never stopped peeing, which is great. Blood replacement children with HUS lose lots of red blood cells, a condition called anemia. Dax's red blood cell count was watched really close, that was his Platelets which were at 13 and HCt which was 26, both very low.
He also got to take a bath after a week of not bathing... yay!

Sunday (8/2/09): Dax got a blood transfusion and it was neat how easy it was. The nurses has to monitor his blood pressure every five minutes, but the energy he got from it that afternoon... it was by no means a lot, but it was more than he had in a week. We also did a fast and prayer on this day. Thanks for all the prayers that went out for Dax... it really means a lot.

Monday (8/3/09): Same old, same old. By this time we were so ready to go home, but could not. They were not taking labs as often, but he still had e-coli in his body and was still room confined. It was long days of Dax being sick, bossy, mean and well we just felt bad for him so we let him be mean and bossy. What else did the poor kid have? At one point his heart rate monitor was going off and he said to Chad, "Chad, are you deaf? Turn that off! " It was way funny, and we got to the point that we would just turn it off.

Tuesday (8/4/09): Blood levels not doing the best, so would have to have another transfusion on Wednesday. My cousin Maesee (she is almost 7) came to visit and Dax was the most happy to see her. He sat up in bed, talked, laughed, colored and played with her. She is so cute... just like her mom. Thanks Brooke for those fun makers. On a side note... the nurse and doctor thought it was so funny that every time Dax pooped, me and him would wear a mask, because it stunk so bad.

Wednesday (8/5/09): Blood transfusion number two. Well, the other story was we were going to leave for a family reunion this day with my mom's family. So we canceled that and Heidi was also going to leave this day, but she was an angel and stayed. I think she might have thought i was crazy, because I cried when she told me she was staying until Saturday. Between, my parents, Heidi, and Bri I have no idea how we would have gotten through this with Logan.

Thursday (8/6/09): My Parents stayed home from another trip... THANK YOU, THANK YOU! It was hard at that this point for Dax because he could see other kids in the hall, and he had to stay in his room. It was sad, but on this day we got the news that if all his labs came back positive we could go home. Yippy, Yippy!

Friday (8/7/09): You can go home at noon... Dax throws up... nope, cant go home until later... come on?!!
Through this all I truly believe that the Lord and prayers were on our side, because Chad and I knew that we would never be to the point of dialysis... even if all the tests said different, and they did everyday. Luckily a few other tests they took to decide if he would need dialysis never changed and from the moment we walked in to the moment we left... he never stopped peeing.
Friday my mom, dad, Heidi, and Logan got Dax a welcome home sign and balloons. That night at Dax's request we had sushi and it was yummy. The End.