Day Nineteen

I am in St George for the weekend. There are newborns and families I can put off....and I am running out of money. I hate leaving him at the hospital. It is the worst feeling. I hugged and kissed him so many times he got mad at me :)

He got a sponge bath from his favorite nurse today :) shes pretty awesome...dishes out a lot of sass. That is good for Kase. He needs someone to joke around with.

 More video games today.

It has been nice to come home, to see the other kids, to feel semi normal for a bit. Dad and Penny have been with the kids this week.  Ellen last week, my Mom and Shayla and Bekah in between. Everyone has helped so much more then I ever expected. It has given us time to both be up there helping Kase. When I got home there was a huge poster on the wall and his bed is covered in presents and letters. It made me cry. I hope he comes home soon.

The Moved him up to the Medical floor again. That is a good sign!

Day Eighteen

Thursday March 29th, 2012

The reason I have not had a complete meltdown ....

My sister Ashlie. She brings us food, and brings something fun for Kase EVERY SINGLE DAY.

She rides her bike and takes Trax up to see us EVERYDAY. She has sat and cried along with me and Kase, she has tried to keep Kases spirits up even though everyday he is more weak, more sad, more tired.

No words. I just love her.

Day Seventeen

Weds March 28th, 2012

Another 6:00 am episode of throwing up blood. I am tired. It seems like he starts to get better and then he's right back to being sick again. Every time it gets worst, his body stresses out more, he loses more blood, gets weaker. I don't really understand why there is not another solution. Why going in and cauterizing the ulcers isn't helping.

They took him back for another surgery around noon. This will be number four or five. I cant even remember now. We are getting desensitised to surgeries and the ICU.

I have some time to goof off and laugh in his bed before they take him back.There is a sweet couple with a newborn baby getting ready for surgery and I immediately feel guilty for being inconsiderate and loud.

 I sit in the waiting room for 45 mins before we hear he is done. They do nothing this time in his stomach even though there is a HUGE hematoma (pretty much a pocket of blood) in his stomach. They feel like it is healing and they don't want to make things worst. Im frustrated.

Kase comes out of the anesthesia OK, Because he has been losing so much blood, they have used something different to put him under and it is scary to watch him wake up, he is so drugged. His eyes roll back in his head, and wont focus on anything. They have him back in a diaper aka the hospital astronaut pants. He is not happy about being in those or being back in the PICU when he wakes up.

Day Sixteen

Tuesday March 27th, 2012

The bribe for sitting in a chair instead of the bed all day long....video games :)

Day Fifteen

Monday March, 26th 2012

I woke up thinking about the antibiotic that Kase has been on since his first surgery on his appendix.  In my half awake thoughts I wondered if it was the culprit to all the ulcers. I spent all morning searching for rare side effects to Zyson and sure enough I found what I was looking for. 1.5 % of kids had bleeding ulcers. Rare yes, but so is Kases situation. I asked the Attending what she thought about taking him off of it and she thought it was worth a shot. She also said she would talk to the Drs about decreasing everything he is on. It seems ridiculous to pump him full of drugs, 3 are ones that are counteracting another drug for an infection they are not sure he has. I really like her, she seems better for Kases situation.


 He was given permission to take small sips of water, he overdid it and barfed it all up BUT it wasn't blood so that is better then nothing.

Me and Ash got to help with the cleaning of his Picc line today...the nurse had us wear masks for sanity reasons....I felt all official.

Kase also got up and walked for the first time in a week.

One of the worst parts about being in the ICU is seeing all the sick kids and worst off babies. Most are sicker then Kase and a lot of them don't have parents to sit with them. I have wanted to just sneak in and hold babies the whole time we have been here. :(

Day Fourteen

Sunday March 25th, 2012

I am glad the kids were able to see him for awhile because early this morning Kase woke up first with a mild fever but then started throwing up blood. They kept him stable and ordered more blood. Someone was in his room every 15 mins checking his vitals. His CRITS were down and they were concerned. I asked several times why they hadn't gone in and looked at his again. Obviously the problem has not been fixed, hes been here almost a week. Each person I talked to blew me off and I got so irritated with one Dr I rolled my eyes and turned my back to ignore him while he is talking with me. There are so many different teams working on him, not one person has followed his case from day one, I feel like I am the only one that is keeping things straight. I have had it. I am frustrated with the situation, everyone seems to just wait for him to get sicker. I finally fall back asleep for 20 mins and Dad comes, shortly after Ash and Derek come. The team recommends starting another IV. I am livid, tired of them poking him, tired of IV's going bad, of them not being able to find a vein, tired of holding him while he cries in pain. I reluctantly agree only because they have so much going in to help him right now and he does need another line. I hold him as they dig around his arm for an excruciating 5 mins, Ash and Derek leave the room it is so bad. They walk into the lobby and bawl. He turns to me and says..."I just want to go hoooome, I don't want to do this anymore" I totally understand. I hold him and cry. The IV team brings in a ultrasound and they try another spot. It takes less then a minute to get that IV in. Glad it is over, angry they didn't bring it in the beginning when I have said over and over he is a hard poke.

Finally someone listens to me about going into scope and they get him ready for another surgery. By 2:00 pm he is back in the OR, I have some quiet time to cry and pray. Which is rare for me. I plead for some kind of result, improvement, for them to figure this out, to find out why he is bleeding so much. Grandma Allred walks into the waiting room and they don't even recognize me. I'm tired, swollen eyed, and drained. The surgery takes 1.5 hrs and when the Dr comes in he has pictures to show us. There are ulcers EVERYWHERE in his stomach, and covering his small intestine also. He cauterizes as many as he can.

I walk in with Dad and Justin and I just start to bawl. He is curled up on his side sleeping, the tube is still down his nose to his stomach. He has two more IVs in one arm, the PICC line in the other. He looks so sick. I don't know how much more he can handle. Justin brings in Penny, then Ash and Derek. I go out and say good bye to Macie and Mac. She cries and cries just like before. I miss being home with all my kids. I haven't seen Kambrie for 2 weeks. This is hard on us all. I break down. I lay my head down on his bed and bawl. I am ready for this all to be over.

Day Thirteen

Saturday March 24th, 2012

He got up this morning and into the shower today. He just sat on the chair and let the shower hit his back for 30 mins. Like everything else it was the the BEST shower ever. :) and it took care of the serious bedhead he was having

They also started him on TPN and Lipids which is his food for right now until they can find the source of the bleeding and let his stomach heal. Yeah for food! It has been two weeks without anything...glad to have something in his body again!!

The PICC line looks decent and we havent had problems with IV'S since. It is a relief to not hear him cry about them.

 

Great Grandma and Grandpa Buxton came to see him they brought him a cute little Easter basket with Easter eggs filled treats. Ooops they didn't know he cant eat anything.

There was also a soccer ball, that was handed over to McKai. Macie and Mac came into see him and we tried to have a fun little day in his new room. They sure miss him. Kase is feeling a little yucky but is really in a great mood, smiling and happy to be out of the PICU!