Wednesday, June 11, 2014

Maintenance-- One month in.

Watts' make-up lumbar puncture went well yesterday morning. We were first on the schedule, as the babies always are, so Watts and I arrived at the clinic at 7:40am and were down to the sedation suite by 8:20am. It's a crazy thing to hold your child as they are put to sleep... and to do it more than times than you can remember. It becomes routine in a sense and yet is still disturbing each and every time. Watts is usually fine up until the last 20-30 seconds before he loses consciousness, then he panics and cries. In a room of three doctors and a nurse, I usually sing to my boy as he drifts off. The team will be quiet until I lay him on the table and then they resume their comfortable chitchat as they work. With another kiss or two and a glance back at my tiny little man on such a big bed, I leave the room and sit outside the closed door. There is a waiting room down the hall but when I'm by myself I like my seat on the floor; if I'm quiet enough, I can hear the murmur of voices and the beep of the machines. It is comforting to this mama's heart.

Our doctor is soon out and says that everything went fine and that he should be waking up soon. A few minutes later the nurse opens the door for me and we stand by the bed and wait for Watts to wake up. The anesthesiologist yesterday made small talk with me and remembered that he did a bone marrow biopsy sedation for Watts about a year ago. I remark that we have come a long way since then...thank God. Watts moves his legs a bit and starts to wake. The sedation team gives the okay and I scoop him up and tuck his floppy body in the Ergo before making my way back up to clinic. Another sedation done.

I wonder how many times he's been sedated in the last year? 
Someday I'll have to look back and figure it out. 

Loopy Watts post-sedation...and rock'n his new tube!

The rest of the appointment went well yesterday. His counts are transfusions needed but his ANC is a bit high (at 2000) for where they want it during mainetance. In two weeks when we check his counts again he might have to have his chemo dose increased. They want his ANC to hover between 500 and 1500 and will be tweaking his dose if it doesn't stay in that range. Cough-wise, the doctor also decided to start Watts on some allergy medication to see if we can clear up his chronic cough. Weight-wise, his dropped a bit (which we learned prior to the sedation) so we made the decision to put the NG tube back in while he was asleep. Hopefully this will eliminate some stress around mealtimes and help us boost his nutrition a bit. For some framework, Watts' weight is somewhere around the 45%...which is great, but we want to make sure that he doesn't drop out of that range so that if he does get an infection at some point we have some 'wiggle-room' to play with. His height is around the 1-2%. He is wearing size 9-12 month clothes...the same size that he wore when he got sick over a year ago. Sweet little guy. We finally went and bought him some new shorts yesterday that don't swallow him up!

Overall, Watts looks great and the doctors are please with how well he is doing in treatment. It is crazy to only go to Brenner every 2-4 weeks (and we sorely miss the staff) but is also so good for Watts to start having more of a normal childhood.

Thank you for the continued prayers for our "Atts," as he calls himself.

No comments:

Post a Comment

Site Design By Designer Blogs