Go figure...it's bright and early on Saturday morning, the Sasshole is sleeping and I'm wide awake and have been for hours already. We woke to her feeding pump beeping away at 5:3.0 am and once it was turned off, meds given, diaper changed and Doc McStuffin playing on the TV she went right back to sleep and momma's wide awake now. I tried to go back to sleep but the smell of fresh brewed coffee and a million thoughts rolling around in my brain kept the sleep at bay. It's weird to have a quiet morning... mornings where we/I are awake before Madilyn. Thankfully they are becoming more normal than not.
We finally consented in June to have bone marrow testing done after much soul searching and hours upon hours of conversations. So many pros and cons... so many questions..... so much hope for answers and fear of none. When the results came in after weeks of waiting our Hematology Doctor called me and said "I have great news! Madilyn's bone marrow testing came back normal! But wait, I also have really bad news. Madilyn's bone marrow testing came back normal!" Great news considering she fully expected to find Multiple Myeloma cancer and really bad news because we have blood issues and zero source. Now we are left to possibly try treatments for symptoms and it's nothing but a guessing game....as always.
We've had massive issues that started last October after Madilyn was sick and they've just escalated since. They landed us inpatient in early March because Madilyn was so escalated that I couldn't bring her down. We've added Palliative care, Neurology and Pain Managment to our already extensive list of care providers just trying to make life more livable. We've tried Reiki and have added to our extensive list of medications trying to bring a little calm to our crazy life. We've done blood test after blood test and scan after scan trying to figure out what was going on. We've had our physical therapist note increased shakiness and muscle weakness, OT and Speech have both noted her increasing lack of ability to visually track and we've seen a definite decrease in her ability to focus on anything. The child that could sit for 30 minutes or more watching silly YouTube videos couldn't even focus long enough to get the foot rest up on the chair much less accomplish any task. She was on the never ending path of destruction, sleeplessness and so angry that I didn't even know what to do anymore. My mental health was hanging on by a thread. She's been caught in vicious migraine cycles, they diagnosed seizure like activity, Polycythemia, Disruptive Behavior Disorder, Anxiety, Insomnia and Anxiety to her already mile long list of diagnosis since March. Oh and don't forget the vomiting... it's ridiculous to say the least.
Through all of this I have said over and over and over... You are missing something.. I've said it to all of our new docs and old. I've said it to our Care Team a million times over.. I've cried, yelled and very calmly said.. you are missing something. Some of the roads it has taken us down have left me absolutely terrified that she was going to die... when my sister came in March she saw a very quickly declining child. My heart was so broken and my nerves completely fried. I was honestly afraid to be alone with Madilyn because she has to strength of a full grown man in her little tiny body and doesn't hesitate to let me know how angry she is. My friends have all been on-call to come running to the rescue.
Several weeks ago I was at my breaking point thinking about my husband getting ready to go back to work (he's a teacher) and I had this nagging gut feeling that I have given voice to multiple times. I reached out directly to our Endocrine doctor and asked the question... again..... could it be Madilyn's steroids causing the problem? I've experienced the rage that comes with high dose steroids multiple times when dealing with my Degenerative Disc Disease and what we were seeing from her always brought roid rage to mind. I've questioned it on numerous occasions and there has always been a million other things that had to be dealt with. A million other reasons that "could be the source of her issues". With a child like Madilyn providers more often than not have overlooked the simplest things due to her complexity. It's not the first time we've seen it and I'm sure it won't be the last. In the end we discovered that Madilyn's very necessary daily steroids were almost double the amount they should/could be.
As soon as our Endocrine doctor told me that I immediately started to wean her doses. It can/has to be a very slow process. Her adrenal glands do not produce much needed cortisol and the steroids replace that and keep her alive. Adrenal crisis can be fatal. Sometimes symptoms can mimic the symptoms that led to needing the high doses to start with. It's a tricky, complicated line we are walking and once again I am left to trusting my gut. I'm happy to say we saw immediate results. She's sleeping way better than momma is... she's no longer going in a million angry circles around the house slamming doors, drawers and anything else she can slam. Her focus is coming back and our PT noted zero.... yes, ZERO shakiness or muscle weakness this past week and the absolute best for me was the day my friend was over for an afternoon in the pool and she actually heard Madilyn giggling. We are seeing increasing glimpses of the happy, giggly little girl that we missed so incredibly much. Don't get me wrong, she's still an opinionated Sasshole and definitely wants her way BUT it's in a "typical child" sass kind of way instead of an angry, abusive old person kind of way.....I'm sure that analogy will offend someone but oh well, it is what it is... We are just over half way to our goal and we are very excited to see what life will be like once we get there!
Even with all of the continuing medical stuff with the Sasshole we have had the best summer ever. Thanks to some friends giving us a swimming pool and M receiving a HUGE playset from Make-a-Wish Wisconsin our back yard is turning into the oasis I wished for when we bought this house. All that's missing is the hot tub. We've had lots of pool days and lots of time with friends. It's all been much needed therapy for my soul. We may be playing in a blow up kiddie pool in the basement in January though because Madilyn thinks the pool should be part of every day life and it brings much needed calm to crazy days. My original plan was to put a hot tub in the basement but when you look at what the reality is of doing that it's definitely not in our budget... I have however already figured out where one will go in the backyard and I'm saving my pennies to pay for it... someday.....
In the middle of everything else we added a new GI doctor.... I was so sad to have to switch doctor's in the beginning but have quickly learned that sometimes fresh eyes are what we needed. We are super happy with M's weight and feed tolerance.... the GI doctor is happy with those too BUT she feels we shouldn't have to live with the volume of vomiting that has become our norm over the years. Uncontrolled, behavioral, stress induced... all of the above... We are going inpatient in mid-September to get a new feeding tube. She currently had a combined G/J tube. Part of it accesses her stomach and then there's a really long tube that goes through her stomach, into her intestines and down to her jejunum where she is fed. Our GI doc feels we'd see great improvement without that long tube. She feels that the majority of our vomiting is because that tube keep her pylorus (the opening from the stomach into her intestines) open and mostly blocked. The tube going through her stomach causes constant irritation so her body is constantly producing vomit and trying to reject the tube. So we are going in for a separate J-tube. She'll have 2 buttons on her stomach instead of one and after the initial hell of the surgery hopefully we'll see some much needed relief. I'd be a liar if I didn't say how hopeful and scared I am at the same time. Hopeful for relief and terrified of not getting any. Hopeful that the reward is bigger than the risk... only time will tell. We are also attempting to schedule the EEG to check for seizures that they wanted to us to attempt at home for while we are inpatient instead. I've gotten pretty good at the two procedures at once thing over the years so hopefully it works out and seizures are able to be ruled out.
In the meantime we are just living life and going shopping for the Sasshole... because every girl needs a million pairs of pink fucking shoes...🩰
You guys are truly amazing souls!
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