Day 127

     Watching your child be put to sleep by anesthesia is difficult, no matter what.  Each time Katie goes for a Lumbar Puncture, she has a different anesthesiologist.  We had an issue yesterday with the anesthesiologist - we did not like his "style".  He came and spoke to us before hand, as they all do.  But when we went into the procedure room, he didn't say a word to us or Katie.  He just reached in from behind Katie and clamped the mask down on her face and held it there.  She was terrified!  I was horrified!  She was kicking and screaming and clawing at the mask.  All I had time to do was hold her and talk to her - quickly trying to explain what was happening and to "please don't be afraid".  I was SO angry at that man!  Scott and I walked out of the room shell shocked.  As the nurse escorted us to the waiting room, she asked, "are you guys okay?"  I didn't even know what to say!  I couldn't believe what had just happened.  I said to Scott, "That was the worst one yet.  That was horrible!"  He agreed, and he told me we will never allow that to happen again - and we won't!!  Katie may not remember it - but we always will! 
     Katie tolerated yesterday's treatment very well.  Her back was hurting and she had a tummy ache, but after a nap, she felt better.  We were able to go to dinner with my brother (Brent) and his family.  When we got home we had some troubles.  Katie's tummy started hurting again, so we gave her some anti-nausea medicine.  She did okay through the night - she was only up twice.
     They have loaded us up with things to do at home again.  Katie cries and screams, "I don't like it!  I don't like it!"  Yah...well, we don't like it either.  We have to give her two steroid pills in the morning and two at night.  Along with an antacid.  Then I am supposed to do mouth care with her three times a day.  Brush her teeth, use a mouthwash (that she isn't supposed to swallow) and then a yucky mouth medication that she is supposed to swish (and then swallow).  Three times a day?  Along with the other extremely bitter medication (steroids & antacid) twice a day?  With Katie, who won't take any medication at all, for any reason?  Are they kidding!?  So....the battle begins again.  And it is a battle with Katie - each time and every time - 5 times a day.  That makes ME want to cry!!!  I hate it as much as she hates it!  I am going to work my way into this mouth care thing, it is not totally necessary at this moment, but it soon will be, and the doctor wants her to be in the habit.  I get that, but I also get that I can only do so much all at once without totally making things completely awful for all of us here at home, all day long!  
     This phase will last between two and three months.  Scott reminded me of that last night.  He said it is going to be a HARD few months, but then this part will be done.  We just have to get through it.  Katie has grown some blond fuzz on her head and that will all fall out again during this phase.  The doctor said to expect her to start crashing some time in the beginning of April - meaning she won't make counts and may need a blood or platelet transfusion.  That is when she could get the mouth fungus or sores, etc...  They expect her to get really weak again, so I am making a weekly appointment for physical therapy.  All this plus the difficult side effects of the steroids.  I will definitely need to look for the small and simple things in life to enjoy during this time - because there is no "golden ticket" here! 
     Jacob De Jager said: "Boldly face disappointments and the pains that accompany them.  If you deny them or hide them from view, the chances are great that you will become worn out and fail" (New Era, March 1984, 7).  We will take it as it comes the next few months.  I am not very good at rolling with the punches - but I am going to try and roll. =)  So...I am now going to go and crush up some steroid pills and try and find a bite of something I can "hide" it in.  Chocolate ice cream didn't do the trick yesterday...I think I will try to hide it in a bite of oatmeal this morning (with lots of brown sugar)....One yucky bite and the rest sweet.  Today I am glad Katie handled yesterday as well as she did.  That is a blessing!  Thank you for your prayers!