Sunday, April 22, 2012

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.

Wednesday, April 18, 2012

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.

Tuesday, April 17, 2012

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.

Sunday, April 8, 2012

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 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. :(

Thursday, April 5, 2012

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.

Wednesday, April 4, 2012

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.

Tuesday, April 3, 2012

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.

Monday, April 2, 2012

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.