Unfortunately, the side effects have already kicked in. He started to vomit and have tummy troubles last night. We didn't expect side effects so quickly because last time it was a while before the sickness kicked in. Ezra is receiving a different chemo regime this time, so we guess we need to shed expectations of what it will be like.
Ezra is still having some pain from his line, but requiring less pain meds. He made it through his first dressing change yesterday. Very traumatic - think screaming, kicking child in pain with an open wound that can get infected and a line that could pull out of his chest. As a wise man once told us: dressing changes take years off your life. Just call us octogenarians.
The bad news is that over the next two days, Ezra will have to endure 4 dressing changes. He will be receiving a drug for the next two days that is excreted from the skin. The dressing has to be changed twice a day to prevent very serious skin irritation and rash. He also has to bathe twice a day. No easy task for a little boy who doesn't feel well.
Otherwise, Ezra has been enjoying being reunited with his primary nurses who took excellent care of him last year, and the other staff who make this process a little easier to go through. He did a little punching with the karate guy today and has been playing on his mat when he's feeling up to it.
Doubtful that this first shabbos in the hospital will bring any peace. The electric candles are ready to go (and Ezra is ready to swipe them for lighting his pretend dynamite and rocket engines). We will have all of your kind messages and heartfelt prayers in mind this shabbos.
We are jumping in - no looking back - our enormous leap of faith.
Robin,
ReplyDeleteI am so sorry. That is so heartbreaking to hear about those dressing changes (we had a picc line and I thought those were hard so I can only imagine what it is for central line). It must take all of your strength to put on your brave face and console Ezra. It's also so good to hear that he is still playing- let's pray for a lot more playfulness. Do you guys have an amazon wish list? Would love to send him something that he would enjoy. Can you tell me what preconditioning drugs he is on now. I will also pray for minimal side effects. Hang in there! So many os us are praying for you.
Sending prayers and support to you. I hope you feel and draw on the love and courage of all our ancestors and extended family. We are with you
ReplyDeleteWe are heartbroken to hear of the difficulties but so so hopeful this will be it! Stay strong for your little warrior and know there are a lot of people who love you right behind you.
ReplyDeleteI am so sorry to hear about the difficulties you are facing. I wish Ezra a complete and speedy recovery and for your strength . I m glad he is still playful and hope that continues.
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