I have been meaning to update and have even got a few entries in the editing stages about fun things such as going to Disney, LTN walk and Halloween. However, I feel a vent coming on as my Mommy Signal is flashing like crazy due to things not going as well as usual. Sammy had another LP the day before Thanksgiving and it did not go as well as they usually do.
To be honest, the actual procedure was event free. We had the usual problem of Sammy's blood not coming back with the differential (the bit that tells the doctors what his ANC is - if his blood counts are high enough for him to have the chemo safely). We have been working on this issue for months and yet, even with doctors calling and emailing the lab, nothing has changed...Sammy's blood always has to be done by hand rather than the machine....baffling everyone!
Sammy needed a LOT of sleep medicine this time...he kept looking asleep and then waking up and panicking in case I wasn't there. He doesn't remember this, so I know he was heavily under the influence, but it was disconcerting to say the least. Finally he looked almost gone and I was ushered out so they could begin. The procedure took all of 12 minutes and then Sammy slept for about an hour afterwards which meant he finally lay down for the full time needed to avoid getting headaches etc. Things were looking good.
The next day was Thanksgiving and we had a wonderful day at Nana and Poppa's house with family. Sammy seemed to do really well and played with his brother and cousins as normally as any other kid. He was tired by the end of the long day, but who wasn't? Admittedly, Dr. Gill had given us the okay to hold off on his steroids and chemo until Friday so he could enjoy the holiday with family.
Thursday night the pain started. I was up most of the night with Sammy feeling strange and uncomfortable...like he was on steroids but he wasn't. Friday, he did start chemo and steroids and the pain and sickness progressively got worse. We called CHAM and Dr. Levy told us this was fairly normal after an LP and the steroids exacerbate it. We must have been lucky not to have had it so bad before. We were to treat with Codine for pain and call if things got worse.
Although Sammy certainly played with Jack and even had a play fight with Daddy, his ups and downs have been very dramatic and overall the pain day and night have been awful. Today we are watching closely and will call CHAM to see if we need to bring Sammy there in the morning. We think we will be told to wait it out and that it is just par for the course. I guess we have been very lucky recently...this was our standard day just a few months ago, now I am freaking out and feeling major panic...not that I didn't back then either, but I just got used to not panicking so much.
The worst has been the waiting for results from the LP due to the holidays and the recurring dreams of loosing Sam. I know my mind is both extremely fatigued from lack of sleep over the last 3 weeks (Brian had surgery so I've been the one doing all day and night duty), but also because I am anxious and probably over-thinking everything. We have had a very good run over the last couple of months, and my biggest fear is it all crumbling around us.
