It's been a long few months since August when Ellie went off her seizure meds (fully - we weaned for 6 months). I thought she would NEVER sleep again and if you have been reading Ryn Tales for any length of time you know how I feel about sleep or the lack there of...
Sometimes too it's just one thing after another. Luckily, in our case, these have been necessary things that have led to better days today - a better present. Here is what happened.
The last week of August Ellie was fully off her seizure medication Depakote during that same time her Protonix (a proton pump inhibitor that she used for reflux) was late getting to us. Needless to say, our vacation to California was a sleepless one. We had fun, but it was exhausting because between the reflux and Ellie's newly med free brain, we were up a lot....which took some of the joy out of it for me...seeing Big Sur through sleep deprived eyes was a sad thing. I know that sounds like whining and it is. I had a different idea of how I wanted the trip to be, but the powers that be, in a constant effort to keep me humble, had other ideas.
We finally got the protonix - which is compounded during our last week in Los Angeles. We got home and school started the day after labor day and Ellie was still not sleeping and vomiting and for the next three Thursday's she would come home from school due to vomiting and fatigue and be sick all day Friday and then recover on Saturday. Or mostly recover - she was a bit pale and something was not right. She still wasn't sleeping and all I could think of inwardly at her brain was for the love of God please rewire yourself up something quick please! To add insult to injury, her g-tube site started to rapidly break down like it hasn't since she first got it at -1 month (preemie moms you know what I mean by that!). Her open, cracked weepy skin that would make her scream like I have never heard her when the acid from her stomach would hit it. It was horrible, really horrible.
After three weeks we started to figure it all out. Here are the major things that were happening
- As I wrote about here the Protonix was bad...I still have not sent it to the lab to find out. BUT she is off it completely - that is the good that came of the pharmacy screw up.
- The pool water at the school was making her very, very sick.
- She outgrew her g-tube! Which makes sense since she has had it for nearly 7 years.
- Last week Ellie was out all week with a tummy bug and fatigue but no fever.
Perfect storm don't ya think. Good times.
All of this added up to a whole lot of late nights and me having to push my work till the evenings when Dave came home and weekends and I am still behind schedule.
We are truly blessed though. Our next door neighbors are both nurses and we called upon them. She is the uber wound care nurse at Children's Hospital Boston and got us Mitrozole powder and when I sent her a picture of Ellie's g-tube site was able to eyeball right away that it was too small and that Ellie needed the next size up. We could not have picked better neighbors, truly. It took a couple of tries, even though, we went in and got it measured for the docs to get the proper size. But we did and it's finally healed (she writes on November 4 - which means Ellie suffered since August with this!). Sigh.
I am also very relieved that she is able to be off a compounded med. People are human, if you are on a compounded med long enough it's only a matter of time before the odds stack against you. And it may be a long time because Pharmacies have many measures to prevent such things - but I am glad to be out of that game altogether.
I realized this week that I have been happier than I have in months. So much is resolved. Mostly I am happy because Ellie is REALLY happy now. My little insomniac. Her seizure med free brain did readjust - she has slept through the night all this week....
She is also off the Protonix and is only now on Zantac and Myralax. That is a huge deal after having been on Cisipride, Depakote, Protonix, Zantac, Myralax last year at this time. It's progress. Ellie's smile is the biggest it has ever been. Her eyes are more aligned than they have been since that bad surgery. She has found her voice. She is only slightly tired these days because she did lose weight with all this going on. She is showing more normal signs of appetite, which is motivating her to try food by mouth once again. Though it's been so long she has forgotten how to eat. This is sad, but workable... Her appetite is not source of confusion because it is no longer accompanied by nausea. I had to totally change her diet to be able to compensate for the Protonix so now her diet is more varied and contains more power foods that will support her growth. Did I mention she is also in another growth spurt, one that is as much seen in cognitive gains as it is in physical size?
Wild, let's just do nothing by halves in life because that would be way too boring....
Things are moving in a good direction. The Nap has gone away and Ellie is just plain more present. She wakes up smiling and talking and communicating. She is initiating more signs. She gets bored more easily and is more open to new things. All good problems to have.
In the middle of September I was feeling very bad. There were other stressors too with work especially. All of it culminated into the breath being knocked out of me. I felt like my zest for life was being leached from me by worry, lack of sleep, more worry, and physical pain in my back and arms from holding Ellie at night so much. I thought this is what middle age must be. Now I see that my spirit is resilient. I am also profoundly aware that for better and worse my happiness is linked to Ellie's by an invisible yet unbreakable chord in a note that close to g. Not having felt such a tie like this to my own parents growing up, I am grateful for the experience. It's very grounding though heart rendering when the chips are down. Better to have the heart rendered than no heart at all.
These last three months of hell have been worth it to get us to now. It's weird because I feel excited again, like when I was pregnant with her. Every morning I wake up I can't wait to see her. It's nice to feel this way again. I don't know where hope comes from. It could just be the extra sleep. It probably has to do with the fact that Ellie is making so many gains and is finally out of pain. She is happy. She is all smiles and giggles and full of life and loving and snugly and silly and wanting to learn and thrilled to taste "cheesy noodles" and finding salad a hilarious thing to eat and doing great in the patterning skills that are teeing her up for algebra...
I am grateful for this renewed hope. I was worried I was going down a bitter road that was leading to the death of hope, heart and soul. It's the road that everyone assumes you are already headed down when you have a kid like Ellie. All that Holland stuff is just another way to say cloudy skies for life. Instead I have found a second wind. I feel the same kind of excitement a mother has before her baby is born. That feeling of knowing that there is new love on the way and it's going to change everything for the better. I have that deep understanding again that this love is the only thing that counts and is what makes everything else meaningful. I am there again and it feels good.