Tuesday, June 5, 2012

June 5, Day +19

Sorry I haven't been posting, the last few days have been difficult and blurry. Unfortunately, we don't have any good news to report...we are getting admitted today due to a fever. He received more platelets on Monday but despite all the transfusions, his platelet counts are still very low and his little body is bruised all over. He is in so much pain that my normal cuddly son does not want to be touched, not even on his feet. He has also been suffering from a combination of a hemerroid along with an internal tear or abcess, the pain from the bottom is excruciating for him, he cannot walk and we spent the past 2 days laying down watching netflix and a little light reading. His energy level is very low, doesn't have an appetite and he is overall feeling very crummy. He just received his first dose of morphine for the pain and is now sleeping. There isn't really any sign of engraftment yet, all of his counts are just really low. We were really hoping for some sort of upward movement in his counts. The good news is that because his counts are so low, the tear or abcess doesn't have anything to grow on, so we are lucky in that regard because it could have been worse and turned into a really bad infection. Right now, it seems as though we are one step ahead of the storm-but then again he does have this lingering fever... The nurse just came in and now gave him some FLAGYL, an antibiotic for any sign of infection in his gut. He will need to have another blood transfusion and some other kind of broad spectrum antibiotic. I wish that we had been giving him colace the entire time that we were here, it may have possibly prevented all of this pain for him. Our friend Andrew is still in I.C.U. The doctors have told them that the next few days are critical for his survival. He is sedated now since he is intubated and still fighting his pneumonia. He has some signs of VOD, where the tiny blood vessels around his liver are not working, and is awaiting approval from insurance to receive a trial drug that may help with this issue. PLEASE pray for Andrew and his family-I can't even begin to imagine the anguish that they are going through-it must be sheer torture. Connor asks about Andrew daily and is so worried about him and feels terrible that he has been stuck in the hospital for so long. Sorry we don't have better news to share. We hope that things will turn around soon and are hopeful that it will soon. It is very difficult to stay optomistic and positive and patient when your child is suffering. And to make matters worse, the Kohl's house is closing on Friday so sometime this week we have to find time to pack (and we now have double the stuff that we came with due to all of your generous gifts) and move to the Ronald Mcdonald house in Lincoln Park where we will stay for 2 weeks and then we have to move again to the new Ronald Mcdonals house near the new hopsital. All of these moves are going to be difficult b/c Connor does not like change and he just got used to the Kohls house. Looking back, we were so naive- we thought that we would be able to go home after Friday and just go back and forth but it looks like our bumpy patch is just beginning and we may be here a lot longer.

8 comments:

Maggie said...

PLEASE PLEASE PLEASE, remember, I am here to help. Dont be afraid to ask!! I ask for your help ALL the time :-) And I'm sure you know, me a girl, will pack better than a man (Steve) :-p (love ya Steve!!) or Steve can stay w/ Connor and I can come help you. Just know I'm here!!

Anonymous said...

I really don't have any idea what words to use to express my ache for you guys....just know that we think about you and are praying for you. We will pray for Andrew too. I'm touched by Connor's compassion even as he is going through all his own stuff. He is a remarkable young man. hs

Unknown said...

My heart is breaking as I read this which can't come close to your emotions and feelings. I'm so sorry its getting harder rather than easier. Prayers always, that's a given. Anything I can do is a given also. Love you guys.

Anonymous said...

My heart hurts for you guys. I'm so sorry. Praying BIG prayers for you all...for healing, for peace, for strength.

Is there any way Josh can email Connor? Or should he just write him a note on here?

Love, Stacey Hartman

Tori said...

I have two hands and some spare luggage. May I help you pack?

What you are going through...I'm just so sorry.

Madeline says hi and sends Connor a hug. I'm sending one to you and Steve.
Tori

Karie Van Grinsven said...

Steph,
Just don't ask Steve to "cut the boxes" after the move...hopefully that brought a brief smile to your face. As I write this, it is with tears and yet as that thought entered my mind it did make me smile to myself. Praying that with the upcoming move/change that there is also change for the better for Connor. He can leave the bad things behind with the old hospital! You, Steve and Connor are in our thoughts every single day and we look forward to seeing you back across the street again, with Connor running up and down the sidewalk with his buddies.
Love, the Van Grinsvens

kathy said...

Praying and praying for both Connor and Andrew.

With all my heart,

Unknown said...

Constantly thinking of the three of you. Connor is so brave and although he is tired and weak right now, he will hopefully get his strength back soon. He is amazing: While he's sick, he's worried about his friend, Andrew?! All our best & stay strong Sue! Big hugs