Sorry I Haven't Updated - Long and graphic, may be upsettng

Kirstenmumof3 wrote: I'm sorry everyone. I have logged on a few times, but then Spencer needs somethng and I don't get to post. It's been a whirlwind week as usual! I don't know where to even begin. Spencer has sores on his bum and his intestenal tract is all inflamed. He is not allowed to eat or drink and I can only give him water to rinse his mouth. He has had a fever now for 6 days, but the tylenol is helping to bring it down. One of the sores on the inside of his bum cheek keeps growing and the infection has spread from his butt cheeks to his testicles. They are very red and swollen. They have him on some very powerful antibiotics. And we have had every doctor come and see us. We have seen doctors from infectious desease, pedicatric surgeons, regular surgeons, plastic surgeons, the ICU team, the fellows, residents and chief of staff from heamotolgy and oncology, and they sent a nurse this morning from the burn unit to give suggestion on how to care for the wound on inside of his bum. They took a swab of the area and applied a polytopic ointment. Since they removed the Central Line on Wednesday, he had to have an IV started and by Thursday evening Spencer had 3 IV's going. 1 in his right arm and 2 in his left. By Thursday evening the IV in his right hand had stopped working and they had to try another one, so they put another one in the crock of his elbow. By Friday that one had blown and his whole arm was swollen. So they had to start an IV in his left foot. Friday they were very concerned about his oxygen and the infection that he was having and had the ICU team come and access him, but they felt that he was well enough and did not need to come to the ICU. Later that afternoon they put in a femoral line, because they needed more access. He is on too much medication, fluids, antibiotics and needs regular transfussions. Because he is so sick, they couldn't sedate him or put him under general anesthetic, so they used a local anesthetic to freeze the area and inserted the femoral line. As soon as he is well enough they are going to put in a pic line. He has had 2 CT scans to determine what is going on with his belly. It is very hard and destended. It's very hard for me to watch him moaning in his sleep in pain. He is on a hydramorphine drip and is using a pump to give himself a shot of morphine every 6 minutes as needed (up to a certain amount). He is also hooked up with an oxygen mask. But the good news in all of this is that his counts are going up and he is showng signs of grafting (accepting the new bone marrow). His poly count has to be 0.5 for 3 days before he can go to step down, but we have been told that because he is so sick that even if that does happen they will keep him in isolation.

CosmetologyMommy replied: I am so sorry about what is happening to your family. It seemes you are staying strong for everyone. You are in my prayers and my thoughts and I pray that everything gets better.

gr33n3y3z replied: Hang in there Kirsten
Lots of prayes your way hun and for Spencer

kimberley replied: oh hon, i am completely heart broken that you both are going through so much right now. focussing on the positive, i am glad that it seems he is accepting the marrow. that must be a huge relief. my prayers are still with you both.

amynicole21 replied: I'm so sorry, Kirsten

mckayleesmom replied: I will keep you all in my prayers. I hope this is over for you guys soon.

MyBrownEyedBoy replied: This is never an easy process to watch. I used to work in adult oncology and I can only imagine that it is numerous times worse to see your child go through all this. Hugs to you and hugs to Spencer. I hope this all begins to clear up soon.

mom21kid2dogs replied: For you and Spencer! Such great news about the grafting!! The rest sounds positively awful! Hope things turn around with his sores soon!

Jamison'smama replied: hugs and prayers

CantWait replied: I'm so sorry you guys, especially Spencer is going through all this. Continued prayers that he will recover quickly and fully.

CAMSMOM1 replied:

I'm so thankful for the good news. His body is accepting the new bone marrow!!! Yea!

I'm so sorry that he is having to go through so much pain. I can't even imagine being in his or your shoes. But I just thank God there is some light at the end of this tunnel, and his body is responding to the new bone marrow and his counts are going up. Continued prayers & hugs for your family.

Maddie&EthansMom replied: I, too am so glad to hear you end the update with some good news.

Heart broken is an understatement right now...I can't describe how sorry I am that you all have to go thru this. Life is so unfair.

Hang in there, hun

My3LilMonkeys replied:

mummy2girls replied: I am so sorry hun(((HUGS))) prayers still heading spencers way! and yours too of course!

jcc64 replied: Well, while it is difficult to hear about all of the pain and suffering Spencer's been enduring, it was certainly very uplifting to hear that it looks like he's accepting the marrow.
Kwym about listening to him moaning in his sleep. But it might help you to know that it's common to do that while taking all of the narcotics, especially the morphine, and it isn't necessarily an indication that he's feeling pain at that moment.
All in all, it's so much for any parent to bear witness to. Big hugs to you, you're doing great- and I'm certain your strength will help him tremendously in his recovery.

Edward's Mommy replied: It's good to hear that he's accepting the marrow. My prayers will continue for your strength and Spencer's recovery. Many many hugs to you and your family!!

MM'sMama replied: Poor little guy what a trooper. Hang in there honey you will both me in my thoughts and prayers. Pleaser let me know if you need anything.

kayla's mama replied: I am still praying for you and Spencer to stay strong during this time.

Yay, for the bone marrow

You are such a strong woman

Nina J replied: I will be praying for Spencer, you and your family.

jacobsmama replied: My whole church and family is praying for Spencer he is a strong boy and you are a great mother!

MamaJAM replied: My prayers continue to be with you all.

DansMom replied: Kirsten---I'm so sorry you are enduring this. I'm keeping Spencer in my thoughts and prayers. His little body is fighting so hard right now.

~Roo'sMama~ replied: ((((HUGS)))) Kirsten. I'm continuing to pray for Spencer. I'm glad to hear that his counts are going up at least and he's showing signs of accepting the bone marrow. I hope the surgery went well last night.

Sarah&Mackenzie replied: I feel so bad for Spencer having to go through this. I continue to keep Spencer, you and your family in my thoughts and prayers.

~~*Missi*~~ replied: ahhhh hun, i am so sorry. I don't know how you do it. You must be the strongest woman in the world to go thru this and remain so open so positive so strong for that little boy.
Spencer too, his strength and fight is amazing! he and you are true heros...

Focus on the positives. he is accepting the marrow!
You are continually in my thoughts and prayers (your family, you , spencer)

jem0622 replied: That was exhausting to read! Lots of HUGS, P&PT for Spencer!