Day Twelve

Friday March 23th, 2012

He is hurting this morning. wakes up at 6 and cant sleep cause of the pain. I ask the nurse for some meds for him and it takes 6 hrs and a shift change for someone to get him anything. Really pissed about that.

It is taking 4-5 pokes and 15 mins of screaming to get an IV started. I don't know how much more he can take. It is a terrible thing to watch. They are checking his blood every 4 hrs and he has band aids on every single finger now.

His blood clots too fast and most of the time they have to re poke him. I am really irritated, it seems like there should be a simpler way to do all of this. He is also starving and they will only give him ice chips for now. I don't like his nurse today she seems really insincere, her answers are text book ... robotic....rehearsed . I don't like her at all. I finally convince the her that something else needs to be done about the IVs and food situation.

After my hesitation, they decide to place a PICC line (a central line that goes from his arm all the way to the top of his heart.) I agree to it only if I can be there to talk him through it since he will be under a conscious sedation. They prep him for it, the Attending gives me the OK to stay but when the IV team comes they will not let me stay. I do wait till he is clearly out of it before I leave. I come back in 45 mins and he is screaming, and disoriented. I am really upset. They told me he would be fine, wouldn't know what was going on, wouldn't care that anything was happening. It was not the picture I expected when I returned. Kase told me later that he was crying because he was scared something bad was going to happen. He was terrified.

After the PICC line is placed they decide that they can care for him just the same on the surgical floor , over the next 10 hrs they reduce all stomach meds except Octritide, which is taken off slower then the other meds.

I did get to listen to rounds today I learn that he had a arterial bleed in his stomach, the ulcer had gotten so bad it grew into an artery. I don't understand why they didn't tell me that in the first place. It seems like the situation was much worst then the Dr in ST George had originally said. I don't know why they didn't just tell me that from the beginning.

They move us to the surgical floor in the evening and we stay up late laughing and talking. Justin left to St George to get Macie and McKai and bring them up to see Kase while he is feeling better. The room is much better on the surgical floor, lots of light, It feels happier here.

Day Ten

Weds March 21st, 2012

Less then 24 hrs on the good floor and he took a turn for the worse. Tonight Kase throws up at least 400 cc's of blood, heart-rate up, blood pressure down. They want to see how quick he is bleeding so they insert a G-tube down his stomach threw his nose. I have to sit there and watch his eyes fill with horror as they put the tube down his throat. I tell him he is OK, he can do this. "Just swallow, yes you can... you can swallow it."
He hates it, it feels weird.  I hate it too. It makes him look sicker then he is and it scares me. It sucks the stuff out of his stomach but most of it is not blood anymore. I really dont think he has much of his own blood left.  I sat in bed with him and hold him as they try to find another vain to start an IV. It hurts more and more to start the IVs and it makes my heart ache for him.

 They take us down to the PICU with me on the bed. All curled up around him, I wont leave his side tonight. I finally bawl, and bawl hard. Harder then I have during this whole process. I am not sure he is going to get better. I feel hopeless, I am sad for him. Scared for him.
He has 5 pumps and 4 IVs.

After things settle down and we have talked with more Drs and nurses and people I really don't want to see, Kase snuggles up on my shoulder and falls asleep. I hold him and sob. This really sucks.

Day Nine

Tuesday March 20th, 2012

They tell us today they want to move him up to the recovery area of the hospital, that is great news. It seems like the worry to get us here was just an extra step to make sure he had the best care and nothing more!

 They take him off of Octreotide, which is a medicine that slows down the blood to his stomach.

They also take out the IJ tube in his neck. They feel like he is in great shape and stable.

We move up to the surgical floor and are happy campers. Ashlie comes to visit agian. She took work off to come see Kase. She makes me laugh and I feel my energy start to return. We cant wait to be home, we are talking about going to a Jazz game friday night, eating junk food, and best of all going home.

Day Eight

Monday March 19th, 2012

Woke up at 6:00, Kase has been puking and it is blood. Lots of blood. He is sitting up and hurting. He pukes again and his heart rate is racing. He throws up 700 cc's of blood which is an entire stomach full. The nurses look nervous and someone comes in and tells me that things are going to get really serious. That he is losing too much blood and a lot of people are going to be rushing around. I sit on the bed and send out a couple texts to my Mom, Dad and Justin and just watch. A couple of the clients are nurses to help. Nice to see familiar faces. The give him meds, call a code purple, rush blood over.
He is crawling out of his skin, scared, disoriented. He calls for me and I sit with him and rub his hair and hold his hand. The Dr comes in and decides that he needs another surgery. They decide to do a scope down his throat to find and cauterize the suspected ulcer. He is stabilized and I call Mom and cry. Tell her what happens and she has already got work off to watch the babies, (so soo so thankful for my Mom's help). Call Dad and call Justin. Then I go back in his room, wait and keep a close eye on him. I ride back to the other hospital and sit with him in the OR. I get to kiss and tell him good bye. They wheel him back do the surgery, remove his drain and add a PICC line. There are talks of life flight and heading to Primary Children's Hospital. Surgery takes about 85 mins. We are told everything went well but that to be safe they would like to fly Kase up to Primary's because the hospital doesn't have a PEDS ICU. 

They didn't even know if they would let him in the ICU here, so he sits in the recovery for as long as possible.We were able to at least see him for awhile in the recovery .  He is sleepy and pale. They had to give him more blood in surgery.

I had Justin go get the kids, so I could say good bye. Macie is having a really hard time, she just collapsed in my arms and bawled for 30 mins. She wants us home, wants Kase not sick. This is breaking my heart.
I go back in the ICU, he looks so worn out and skinny. For whatever reason they didn't start a PICC line like they said. There is a line started in his neck called a IJ Line. They have to pull it back and he screams and sobs for an hour.


The life flight team arrives and prepares him to leave, they have to transport us to the airport via Ambulance (ride #3)

 Kase sleeps threw most of it

 By 630pm we were on the plane flying up to primary's. He had great nurses on the fight they were s fun to talk to and keep my mind off of things. I ended up finally falling asleep for 30 mins and woke up just in time to see the city before we landed :)

We were tranported via ambulance (#4) to Primary Childrens Hospital

 

 We landed, he was settled in his room by 8:30. I listened to the drs talk about his condition and learn that the ulcer was a really large one that wasn't cauterized but clipped and took along time to to stop the bleeding. Not sure why the Dr didnt just tell me that in the first place??

The rest of the night was uneventful. Justin drove up through a snow storm to be with us, It took 6 hrs instead of 4 to get up there. I am so glad he is here, I am emotional and physically drained.

Day Seven

Sunday March 18th, 2012

 

 They started a new IV today, Kase has such thick skin it is a miserable process.

 They are trying to stregthen his lungs because of all the laying down his body is becoming tired and losing its muscle density.

Kase did eat some solids...it was the best pasta ever.

Kase is weak and tired. Still in pain, still vomiting and diarrhea. Earlier in the day he stood up to go the bathroom, passed out and passed a lot of bloody poo.

They talk about a blood transfusion because he has lost a lot of blood. He got 2 bags of blood and 2 bags of plasma this evening and sleeps off and on on throughout the night. I laid in bed with him tonight, tickled his arms and just held him. I am sad he is not himself. He is quiet and sleeping a lot. It seems like its been longer then it should for him to get better. I hope we get to go home tomorrow.

Day Six

Saturday March 17th, 2012

He is feeling weak and light headed when he stands. He is in a lot of pain but it comes on sharp, fast and its gone. They are not sure what is going on but think that he might still have an infection.  He is taken back for a CAT scan to look at his belly and see if there is an infection. It came back looking normal with only a small amount of infection. Not sure why he is in pain still.

Grandpa Buxton came into and gave him a blessing. Hes been sleeping a lot today.

Day Five

Friday, March 16th 2012

Blue Angels came to visit and he told them he doesn't really like airplanes lol.

 He doesn't feel like walking and the throwing up is getting worst. They start a new IV because it seems the other one is going bad. He rolled over and told us he was sorry this was costing so much. sigh. What little boy even thinks  about that. bless his sick little heart.