So Con did great yesterday, actually was insane, using his bed as a slide/jungle gym and mega blocks as a ball pit to slide into (very creative) colored like an insane person and generally acted like a very happy caged animal! We removed all meds and had approval for him to be deaccessed during the day. But his counts plummeted, the rise we saw Sunday was “fake” from the nuepogen, so we all knew the bottom was coming. I think it is safe to say it is probably here, he is a different kid today, not eating (but is asking for “chippee’s” so my friend Kristin brought pretzels) just wanting to lay on me and hug me. He slept until 2 pm, at which point I requested Ativan just to see if it would help since for the last couple days when he did not want to eat after his 9:30 dose he would eat something, not a lot, but enough to keep him off TPN. The head of the department is on this week, found the request a bit odd, but kudos to him for hearing me out and trying it. Well sure enough Con got the Ativan, and while the only solids he has had are two oyster crackers he has had 16 ounces of high calorie pediasure shakes, been up since he got it, done OT and play therapy, sitting up and even a little walking. So for Connor the Ativan is a miracle drug and he will continue on it during the day. The bad thing is he just got his first fever, we expected this as he is at zero and based on his last three cycles this is how he reacts to having a count of zero, so everyone springs into action, blood cultures, then antibiotics, them Tylenol within the time cultures were drawn and antibiotics went in he went from 101.9 to 100.1, so fever corrected itself. We gave tylenol anyways this, then a fellow strolls in (who I have never met, been on service since Sunday) and let’s me know he works with the attending on this week, so basically does not get that, that is not our doctor! Then proceeds to tell me because of the one fever we would be increasing Con’s fluids (meaning back to diaper changes every two hours and no rest for anyone). Well I go off on him, I say are you aware the fever corrected itself, that my son drank 16 ounces with in the last 3 hours, why on earth are we raising the fluids, and second why aren’t we treating the whole child,(explaining that diaper changes every 2 hours are good for no one, especially Connor who needs his rest!) do you even know his history?! He responds that he does not know Con’s history, so in my head I am thinking so the text book tells you to increase his fluids so you are marching in here telling me that is what we are going to do. Well he crossed the wrong moms path, I get that he went to medical school, and did a general pediatrics residency, which may have included 4 weeks in oncology and is now in his fellowship (which started in July, do these people really think I don’t research everyone who walks into this room?!) so is 2 months in, well I am 7 in, and what is on the line for me is my sons life, so I proceeded to walk him through our past 80 nights inpatient and all the time in between, how he reacts to antibiotics while on chemo, what the different antibiotics do and don’t do for him, how having no bone marrow causes fevers, how if he does not have a fever Con does not typically respond like others (in your textbook, didn’t say that but wanted to) and I was home with him at zero for 10 days our last cycle and gave him daily iv antibiotics, that I traveled to Boston with him basically at zero and gave him antibiotics while doing that, that while you may not have been here those 70 inpatient days and 90 days that consisted of the entire cycles those cycles taught us a lot about my son and they need to be used in how we treat him, and that waking him up every two hours for diaper changes after one fever seems the opposite of necessary, especially since clinically he is acting great, needless to say he went back out did his homework and fluids are not being raised. I will completely defer to doctors if the situation worsens, but come on, READ his chart before entering, in any other profession can you go into a meeting so unprepared with your client or customer?! Of course not, I really want to put a sign on the door don’t enter until you know Connor’s history!
In addition to this, Miss Claire Bear had a fever of 103 last night, it was gone after a dose of Tylenol and a visit to the ped showed nothing, but it came back tonight. This upsets me on so many levels first, that this is the highest fever she has ever had and I am not there to comfort her, or even make real time medical decisions, second that she had to miss both school and swimming today, she is not doing great in school or swimming and repition and structure and repetition is what she needs. I feel as if Casey and I have failed her as parents, we have had to put Connor first the last 7 months at her detriment (after both of them living in a micropreemie bubble for the first two years). We never could let her go to a group class, even something as simple as library for fear of her getting sick and putting Con at risk. The only times she sees other kids are completely controlled environments where we know no one is sick, so the only kids she has ever hung out with are my best friend Kristin’s kids and my cousin Lauren’s kids and Jimmy because nothing else has been safe. As a result she does not know how to be in a group of kids or follow adult instructions. I spent Connor’s entire nap yesterday calling places and researching instructor led classes for her to fill up her schedule a bit more, to do right by her and set her up for success, then she gets sick and the thin ice we are all skating in crumbles. Claire getting sick puts the whole support system at risk, it jeopardizes visits to the hospital that benefit everyone. So it has been a very rough couple days.
If anyone knows of someone who wants a full time nannying gig for these two crazies we are in the market, would take a lot of stress off to have Claire in her own home, will be a pretty good gig too, just Claire for a while, then both, with Claire going to school, then Con will start at Bedwell full time in March and Claire might even go to Bedwell too, so pretty good long term gig.