Day Thirty

What a great day! I got a text around 1pm from justin, they are releasing him! I hurried and finished my session in St George, packed up and headed to Salt Lake. I was so so so bumed I missed being there when they released him but i got to met up with them at the Jazz game. That was the goal we had set for Kase...Telling him that if he got out by a certain date we could go to a game, four games came and went and luckily he got out the day of  one!

He still looks so so pale but look how happy he is!

Mac was so focused on the game...he thought this game was pretty cool.

The handed out silly string in our sections and we got to have a huge silly string fight.

Beyond happy to have Kase out!

Macie mainly watched the people and the lights above her

Later Skater....

New Jersey and his very own basketball

We went back to the hotel and got fancy room service and watch TV till 1 am...we dont ever want to let him go!!

Day Twenty Five

It snowed today

This was the same veiw a week ago...

The Child Life Specialist brought him a bowl of snow. He was pretty happy.

I still hate looking at his cut. It breaks my heart.

 He sure loves using his pain med button.

Day Twenty Four

He was awake enough today to read the letters from his class. I sobbed. There were so many funny things but there was one from a really good friend in his class that I wanted to include it. I feel really lucky that he has such a great support system and such a fantastic classmates

 They have given him leggings to keep the blood circulating in his legs. very stylish.

Day Twenty Three

Im back in SLC with Kase, it kills me I had to work and not be up here with him. I couldn't hug him enough today!

He feels like crap. Really hot, so wet paper towels on the face makes me feel better, he sleeps like this all day :).

 Took a walk out to the patio with Ash today. Nice fresh air.

Really good to see him out of his bed... its hard for his eyes to adjust to the bright sunlight.

 First time he checked out his stitches.

Day Twenty-The bad day

Saturday, March 31st 2012

I get a call from the hospital early on today. It is the PICU nurse, Kase started throwing up blood again, throwing up a lot. She said he was in critical condition they had to give him blood and that they needed permission to operate. They don't know where Kases Dad is.  WHAT? I am sick to my stomach. I don't understand what is going on and why Justin would leave him alone in the hospital. The nurse explains everything again and lets me talk to the Dr. She tells me that they need to get Kase back into the ER right away, that he is not doing good. That they are afraid the artery is bleeding and they can not get it to clot. I give her the OK to operate on Kase, as ask to talk to him. His voice is shaky and I know he is scared. I tell him that it will be OK and that his Dad will be there when he wakes up. Tell him again THIS time they will fix the problem, to not be scared. That I love him. I keep my voice strong so he doesn't sense the fear that is now taking over my thoughts. I ask the Dr to please wait until his Dad is there before they take him back. She tells me again that they need to get him into surgery right now. Just then Justin walks in the room. I get off the phone and call my Mom and cry. Macie hears me and she is sobbing next to me. We are scared and I have no answers. I am emotionally drained, I want him to get better. I want him home. I am so sad for him, it kills me he had to go through all the commotion alone. I feel guilty, hate that I have to work, I want to be there with him.

We find out later they had to give him 4 units of blood, that is half his blood. He was bleeding to death.

They first go in with a scope to make sure that is the source of the bleeding, then they had to make an incision, cut threw his intestines to find the bleed. They stitched the artery closed, his intestine and his stomach back up . It took him longer to come out of surgery this time and he is in pain. He asked if they did the surgery already and if he can have water. Poor kid. I wish he could have water, wish he could eat food. It is pretty much out of it the whole night and net day thanks to his Morphine button. :)

I'm guessing recovery is going to be hard, esp considering he has been in a hospital bed for 3 weeks already and this time he has a 6 inch scare down the middle of his stomach.

I do feel like this time there is actually a solution, its been two weeks of hopelessness, no answers and now there is a direction. I am glad that they were slow to do a surgery but it seems it was almost too safe. I am crossing my fingers this works this time.

Happier Days

Being home is hard without him. He is my little Man. He helps take care of everything, reminds me that I am going the wrong way, is there for hugs and to crack me up! I hope he comes home soon. We all miss him!

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 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!

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.