The Road

The most memorable thing a doctor ever said to me when my degenerative disc disease was at it's worst was "emotional pain can manifest itself in physical ways".  This has played over and over in my head a million times over the past 4 days as I struggle to get up. 

Madilyn's vomiting got to the point on Monday that I couldn't take it anymore and I messaged our care team to request a placement check on her feeding tube.  That message escalated super quick into phone calls from them and 3 of our 17 specialists being involved... and off to the ER we went.  Can you imagine what it's like walking into a Children's Hospital emergency room with 40+ patients in the waiting room and multiple in line to check in and when they ask for her name and hear it you are immediately jumped in front of every single person there??  We heard "it's her.. get her stats and get her into a room..now"...  perks..yes... reality.. she's too fragile to have her exposed to all of that and she escalates so quickly it can be dangerous.  Their main concern was her shunt, it was never ours.  They did a quick brain MRI and shunt series x-rays and it looked fine.  The neuro doc came in and talked to us and it went from "we don't see an issue with the shunt"  to "I'm going to check something" to a nurse telling us they were admitting us under the hospitalist so all bases could be covered....  5 hours into this ER visit, Scott had just left and we were waiting for our escort to our room and it happened.... Madilyn coughed and started vomiting blood all over the place... everything stops at that moment.  I buzzed the nurse, she came in and went running out to get the doctor... they tested her vomit and it was definitely blood.  The transport upstairs was canceled and they had to figure out a new plan asap.  Come to find out we had weaned off of her omeprazole for reflux last summer and it was back with a vengeance.   Meds were started and we were admitted for IV fluids because she was dehydrated from all of the vomiting and her heartrate and blood pressure were through the roof. 

It was 1:30 am before we were brought to our room on W11... they had given her sleep meds at midnight in the ER but there's no sleeping when she's constantly being poked and checked.  Once we were in our room it starts all over again with the team on the floor.  Our inpatient stay did not start on a good note when the first thing the floor doc said was "it's probably just a mystery virus"... set this stressed out momma right off.  I told him that their years of "mystery viruses" were never that.. they were a formula allergy and nobody would listen to me and then it was Secondary Adrenal Insufficiency ... both of which almost killed her and nobody listened until I screamed and shouted and went toe to toe with doctors.  I told him that there is nothing wrong with her shunt and she does NOT have any fucking virus and that something has been escalating since early October and they needed to figure it out and that I didn't think that would happen inpatient.

We slept for only 2 hours that first night and then they came and woke her up again.... by the time the hospitalist team came for rounds and said it's probably just a virus I couldn't keep quiet... 6 doctors and 2 nurses in the room plus our Special Needs team NP and I piped up with "I call bullshit"...literally... talk about stunned heads turning... I told them exactly how I felt and why I felt that way and that I didn't think they'd solve anything there and that we have an upcoming appointment with Hematology on Tuesday because of some labs that were off (and have been trending more and more off for 3 years).  I've questioned some of those labs multiple times and always get told "It's not far out of the normal range" or "It's just Madilyn being Madilyn".... I'm so frustrated at this point that by 9 pm on night two I told the nurse to get the stupid GI doc and get us discharged because we were at the point that we'd be up for 40+ hours and her behaviors were escalating quickly which would just land us in more trouble.  By the time the doc came I had Madilyn sleeping in her stroller, which is a HUGE safety no-no there.  He couldn't and wouldn't discharge us because she was having some issues urinating and they couldn't figure out what was going on so in true sleep deprived mommy fashion I threatened to hurt anyone who touched or disturbed her or anyone who tried to make me put her in the bed.  Definitely not my best moment but he complied.  They only time they could do anything was if I hit the call button.  I did but only once at 1:10 am to tell them they had 10 minutes to check her vitals and get her another round of sleep meds (she was already connected to a continual pulse ox monitor so if anything bad happened we would know)... we were not bothered until 7:30 am when the Hospitalist woke me up.

I apologized immediately for my tirade the evening before and he immediately told me that he understood.  He said they saw how quickly she went from miserable to stable to going in the wrong direction because as soon as she was stable her anxiety and stress levels escalate quickly.  He said they had a lot of things to check on but knew they needed to get us out the door as quickly as possible. 

A few hours later when the docs were in the room the on-call Endocrine doc piped up that she had questions for me... after talking for a few minutes she said she had serious concerns about Madilyn's parathyroid and thyroid function.  Her body is consistently making too much calcium... and that is caused by the parathyroid malfunctioning.. she ordered tons of labs.  She also clearly stated that Madilyn's would be a genetic cause because she does NOT have the cancerous tumor that parathyroid problems typically start with.  Phew.... someone finally said it.... for over a month now we've had in the back of our brains that problem may be cancer of some type...

When you are referred to Hematology the way we were in November and see and appointment show up with the Oncology lab it makes your heart stop.  A typical child has a 1 in 4 chance of a cancer diagnosis... a child with a genetic abnormality has 4 times that risk and Madilyn has multiple genetic abnormalities.... for us it's never really been a case of "if" that most parents don't even think about.. it's always been a "when"....  for the moment we're breathing a little easier.  We'll find out more at our appointment on Tuesday and after all of her labs are done.

The road we are potentially on, if labs confirm it's her parathyroid, is not going to be easy at all... we already struggle with weight (and she's losing again), it causes issues with bone health, muscle weakness, vomiting, nausea, fatigue, kidney problems.... ugh ugh ugh... and there isn't much in the line of treatment and all of these things are escalated because of her adrenal insufficiency... it's going to be a rough road.. but it's a road and not another I don't know...

Now I have to stop the stress path I was on and lose the 10 pounds I've gained and take care of myself again.  I have to be at  my best in order to be what she needs.  I spent the majority of our 3 days at the hospital crying and yelling at someone... the yelling was necessary and the tears were pure frustration because nobody was listening... I'm learning to nap when she does.. the dishes and laundry can wait.. our sleep is very very erratic and has been for months.  I got my work shifts covered for a few days and am putting her and myself first.

I put this out there because I am physically hurting and I need to give my emotional pain life so my physical pain can go the fuck away.....  I don't really ask for prayers but we could really use some so maybe this path won't be quite as hard as it has the potential to be....

oh, and my very own pink fucking shoes should be delivered tomorrow...