Saturday, April 30, 2011

Still no answers.  It has gotten to the point where they have just gone down the list of every test they could send off and still everything came back negative.  The only symptoms he is having are fevers and diarrhea.  The next step now are more invasive tests.  Because of the diarrhea they are scheduling him for a colonoscopy on Tuesday.  If they cant see anything then they will do an echo of his heart, but instead of the regular test they would send a scope down his throat and look at the right chambers of his heart.  If those come back negative and he is still having high fevers then they will have to do the CT with contrast and a full body MRI.  What was supposed to be a one day stay has turned into a long confusing one.  But I have learned to accept that things just never go as planned with Skyler.


Sky is struggling right now to say the least.  He cries (well screams) everyday that he wants to go home.  This is such a different stay than the last.  Last time he really wasnt with it to even care that he was in the hospital.   This time he is very aware that he doesnt want to be here.  He gets very angry when a nurse or doctor comes in and wants to listen to him or get anywhere close to him.  He has just had enough and I cant blame him.  He needs to be home and thats what I am trying to make happen right now.  I actually talked to the attending today to send us home.  We have been here for over two weeks now and we still dont know anything.  The things they are doing for him here I can do at home.  I would have to give him 4 different antibiotics and antifungals through his central line throughout the day and night but at least I would be doing it, not two different nurses everyday that dont know him.  I still have a very hard time letting the nurses touch his line.  We could come up once a day to draw labs and cultures if needed. Plus he wouldnt be exposed to all the viruses one can catch being at a hospital, he wouldnt have to be in bed most of the day getting break down,  instead he would be at home walking around and exercising his legs. The main reason right now though is to maintain his sanity.  Hopefully they will send us home tomorrow.

They had to give him a blood transfusion yesterday because his hematocrit was low.  I am so grateful to those have donated blood products.  I wish they could see that it really does save lives.  I wish this donor could see the 4 year old little boy that was so pale and tired and weak before he recieved his transfusion.  I wish they could see that THEIR blood brought color back to him, gave him energy, brought his heart rate down and his oxygen level up.  Thank you.


This picture is cute and sad at the same time.  I love when he cuddles with his stuffed animals to go to sleep, but even when he is sleeping he has that worried, distressed look on his face.

9 comments:

ana said...

Have they tested for intestinal parasites? That is something that wouldn't respond to antibiotics. Just a thought, hope it helps. I pray for Skyler every night, he is such a brave little boy, and you are an amazing mom.

lea said...

I have a friend who was in a similiar situation...she ended up insisting they let them take her home. They cant refuse you. Your the mom. My friend had to sign a special form, but she said she knew it was what was best for her daughters sanity. She needed to be home.
Anyway...that was a long way of saying you need to trust your gut, and do what you think is best for Skyler. We will keep you all in our prayers! Good Luck!!

nsudburyfam said...

Could the diarrhea be from the antibiotics? Kaidan always had a super hard time with those. I hope you get to go home-you are an amazing mom and it would be good for both of you to have a break.

Chelsea said...

I'm so sorry Crystal! I'm do glad you put your foot down and asked to go home. You know what's best and YOU will give him the best care he needs. Home will be so good for him! We love you guys!

cjmom said...

We are fasting for both you and Skyler today.

Erin & Kace said...

We are praying for you and Skyler!

kate said...

I am wondering too if the antibiotics are causing the diarrhea. I am not a pediatric nurse, but in med-surge I had many a patient that had diarrhea after IV antibiotics. Also-is it possible that one of the chemo are causing the fever. If everything is coming back negative-could it be a reaction to a med and not necessarily an infection? Same thing- I have given medications that have caused high fevers, 104 and up, and the was no infection. I'm with you on sending Skyler home. For his sanity and happiness and health. Most of his tests seem like they could be done as outpatient, and you definitely can give him all his meds-the less people that contact him while his counts are low, the less chance for introduction of further infection.

Jenny said...

I'm sure that it is easier said than done, but would it be possible for him to have all of his procedures in a different room or at least away from his bed? I'm wondering if he would be able to relax more if he had a place at the hospital where he knew nobody would be poking him and he could just relax.

Anonymous said...

oh crystal, I am so sorry, the picture of skyler is just heartbreaking,,, no little one should ever have to go thru this, I pray that the fevers end,

skyler, you stay strong sweet boy!!

zachs mom