So Con and I slept a total of 90 minutes last night, maybe. The hair falling out process is quite itchy so hard for him to get comfortable. Here is how a typical night in the hospital looks, lay down at 7:30/8, Con goes through his 9 step process of falling asleep, which while time consuming is adorable and makes you fall in love with him all over again. He needs hugs, then needs to hug you, then to pat your back, then you pat his, then waves hands in air watching them talking to himself softly, then repeats the first four steps, takes about 90 min putting him to sleep around 9/9:30. At 10 the bright light to hallway shines in as meds are given and vitals are taken, he awakes, can’t get comfortable, I hop in bed to comfort him, same happens at 11, at which time we get our 90 minutes of sleep because we have a break until 1 at which point his 11 am meds come down and I have to do the diaper change, this really awakes him, I am back in bed with him comforting, settles down by quarter of, but 2 am brings vitals, back up, then 4 is blood draws, same thing, oh and by this point we are both so pissed and awake that he is flinging his body around and the tubies get kinked so beeping ensues and nurse has to come in literally every 5 minutes to unkink and restart pump, by 10th time it is 5 am, Con is up for the day and would like to use his “cart”! He settles for iPad Mickey so mommy can lay a little longer. Now last night this really made me made, number 1 because mommy intuition told me he is fine and does not need all these interventions anymore, but number two because no doctors, not one came in here all day yesterday to see him, so I could not discuss this with them, and if he was not critical enough to see why the heck are we here?! We even got platelets and they never told me, unreal! Through being woken up I was crafting my email to Dr. G’s team to tell on them when in walks the nurse with amazing news, his white count is 2.6 and his ANC is 1.8, they are going to be very hard pressed to keep us here!!!! They have never ever had a kid recover from transplant so fast, in his prior chemo we would still be waiting a week for numbers like these! Issue is since no one came to talk to me yesterday we don’t have the plan for platelet maintenance worked out. Basically, I have not bored you all with all the transfusions we have needed over the last two weeks (a lot), they have become common place to us. Today he is getting red, and his platelets are at 30 (he got them yesterday and you transfuse anything below 30), and platelets are last to recover. So question becomes do we go in tomorrow if we go home for platelets, then will they come up on own and can we make it through weekend, or do we transfuse today, check on Friday? I am not a doctor, but these are questions a worrying mama wants to ask one, and Dr. G. Has been great at working with us on what works for us, so I will be demanding to talk to one today!
My little hero takes coloring very seriously and had a great time with OT yesterday: