Today was one of those days where I just wanted to cry! Hannah describes her day as "her worse day ever." It wasn't her worse, but not a easy day for her when she woke up feeling horrible and it only got worse. It wasn't fun holding down a screaming, crying, kicking 7 year old with the help of 4 medical staff as we try and try and try to get a IV line started to pump these NASTY drugs in her body which are NOT helping controlling her disease. It tears at your heart when your child is screaming for help and begging "MOMMY, please help me, get me out of here and don't let them hurt me". I tried to hold back my tears as our favorite nurses do everything they can to get a IV started! Finally after 3 attempts-- We got it! Hannah was MAD at everyone, including her own Mom! She was upset, and simply not wanting to be at Shands today. She took awhile to calm down and accept she was hooked up to a pole, next to her brother who was also hooked up to a IV and we could NOT leave until all meds were finished! Thank goodness a young college volunteer was brave enough to sit with Hannah and watch a movie together!
|No Chemo shortage for Jake!|
Hannah's biggest complaint is her neck. What do you do for a neck? Yes- therapy would be lovely non-pharmaceutical start but insurance only approves 60 days of therapy. Didn't you know that PT and OT can provide therapy and 60 days magic happens for our JRA kids! NOT!!!! So frustrating--- and Shands has requested for additional visits, DENIED!! Md is scheduling Hannah for a MRI of her neck with sedation. During this sedation period- we're going to coordinate joint injections in Hannah's wrists. She has already warned me, "nobody is touching my wrists again with a needle". Hannah needs some relief in her fingers and wrists, so we made the decision to try another approach directly into the troubled wrist joints. So we'll be taking a closer look at her neck, injecting her wrists and increasing Actemra.
The day has come.....we are making the decision of inserting a foreign titanium object into my kids body which may cause infections and at risk for much more while giving them a break of needle pokes and re-pokes at least every 14 days! Adults that have had ports quickly say, "Yes, do it". But for our children it is much more complicated. This journey does not have an expiration date, we won't hear the bell ring after 6-12 months of treatment. There won't be a celebration party , ports removed and a thing of the past! If we choose to have a port surgically implanted under their skin directly into their central veins, it will be for the long haul. Which also means Jake & Hannah will outgrow their port and need it removed and another one replaced so it won't get displaced and cut off circulation in affected tissue. It can be dangerous due to high risk of infections and even blood clots can be common problem. It breaks my heart to make the decision for Jake & Hannah: No contact sports, no rough playing, no blows whatsoever to the chest area! I am once again taking away and robbing my kids from a childhood they so deserve, too! Then the nurse quickly reminded me, no 4-wheeling for Jake. I said, "what, he isn't going to stay off his 4-wheeler". Purchasing a chest protector is a option for Jake to wear. Yes- won't he be thrilled to hear mom remind him, "put your knee splints on, wrist splints and your chest protector". I can almost feel in my heart its the right thing to do for Hannah, but then how do I justify for Jake? I was told if they get any fevers then they must be taken to hospital and blood cultures drawn as the basic protocol. I laughed......Jake gets fevers several evenings a week as it is right now! Where's my magic wand? I do take all my worries and concerns and needs to God, but it still is not a easy decision!!
On a positive note, I followed my heart and am thrilled to have Jake & Hannah attend Sloan Siblings Academy. (Also known as, Hospital Homebound program.) Kids are thrilled to be home schooled and love it!! Homeschooling isn't for everyone , but it seems to be exactly what we needed this year! I'll blog soon and share my zillion reasons why I love homeschooling my children.
|Our new stomping grounds.....|
|A day at the Sloan Siblings Academy.|
|Hannah was wiped out, a long day!|
|Jake is just a grinning....focusing on TN!|