Wednesday, November 12, 2008
"Toughness is in the soul and spirit,not the muscles."Alex Karras
Fatigue wins.Tonight I am absolutely exhausted.My turn at home and by the time I have done all that needs to be done,which is a ton,I have no reserve left.Morning arrives before I know it and I think that I sleep so hard in my own bed,that when I wake ,I don't remember dreaming.I actually cannot remember one dream that I have had over the course of the last two weeks.Miss Zoey was tired as well today.She did not nap yesterday and didn't give into sleep until ten o'clock last night so I think her tiny body was paying the price today.She still was full of smiles and kisses but her eyes were so heavy most of the day.Her g-tube has really taken a turn for the worse today.They decided to put her on Keflex,an antibiotic,for 10 days to be on the safe side.It is red and inflamed and very tender.She winces every time I have to fiddle a bit with it.Hopefully we will see some improvement over the next few days.Zoey also needed a platelet transfusion.Again, not because of super low numbers,hers are at 40,000,but mainly to keep her above 50,000 for her bone marrow biopsy on Friday.Speaking of which,I continue to be a bit uneasy about the unknowns associated with the procedure.I so hope that her blasts will be zero but I will have to mentally prepare myself if it turns out any less than what I hope.I just want her body to have a chance to recover adequately before Round Two.The doctor assured me that if blasts were present that it would be,in no way,an indication as to the ability to treat her Leukemia.Just an indicator of having to kick it up a notch to be certain we are on the right track.But no matter their words of encouragement,I still am kinda freaking out.Just a bit.Zoey's little roommate headed home.Sweet thing.I will miss her precious face,her tiny voice and her momma who tried to often no avail,to calm her fears and anxious heart.So much to carry for such a young life.Christopher went home as well.I told his mom I hoped I wouldn't see them again.She looked at me with this look and said "Well,you know we probably will be back."Christophers road has been long and far too difficult as well.And, unfortunately,a beautiful four year old has now become our new roommate.Another child and family filled with fear and uncertainty.That's the thing around here,the beds never stay empty for too long.Makes me so angry.And sad.I find myself doing these deep sighs every time I leave or enter the 4th floor.I feel this twinge and tingle go up my spine each time I walk on the elevator and ask someone which button they need me to press ..... and they often say 4.Nothing needs to be said after that.I called Mark within minutes of leaving the hospital and asked him if he knew how very much I hated Children's Hospital.The fact that I know the in's and outs of the place is something I really did not want to put in my knowledge base.But once again we are settling in to a new groove,our new normal and I know we can do this.I am angry we have to but I know we can do this.My confidence to wade through the crap continues to grow and that fact definitely scares the heck out of me.You know what happens when this family finds their comfy place don't you ?Life usually decides to turn it up a notch just to keep us on our toes.Tonight I pray for peace and strength.For Zoey,for me,for all of us.Peace to all of you as well and our sincere thanks as well for your faithful support and prayers as our journey,Zoey's journey continues.
*As I mentioned,Zoey has been fighting sleep during the day.It doesn't help that there is constant commotion in her room.Vital signs,meds,transfusions,feeds.You name it and they cram it in.She finally gave in to a short nap this afternoon.I couldn't resist this picture.She looked so peaceful.For that, we are thrilled.