Monday, August 11, 2014

The real tragedy

Just a little aside, before I go on to today's post. Tonight I heard about Robin William's passing and the first thing I thought was, "Oh no, I liked him"! But then to go on and read the outpour of emotion from people, people who watched his movies, not people who personally knew him. "It's a tragedy!" Ummm, maybe it's just because of the night we're having, but I just couldn't let this go! Watching your child suffer, gag and retch nonstop every few seconds, fighting to breathe and choking on her own saliva...THAT'S tragedy! Unable to walk, talk, sit, eat...unable to sit still or have any controlled movements whatsoever and can't even sleep half the time! THIS is the tragedy! Ugh. It's so hard, so so hard sometimes. Now on to my post...
I'm not sure how much Reagan slept last night! It was one of those extremely RARE nights that Mike and I got to bed before midnight and I think we both were out like lights! Reagan was wide awake and kicking around when I got up at 6:45am. I changed her and moved her to her chair and she was super sweet and all smiles. I got the feeling that maybe we were in for a really good day. She seemed fine all morning until right before speech, she made a couple of gaggy faces. She did OK for speech but then during OT she got very gaggy/retchy! Ugh, not again! After OT, she settled down a bit but as the day went on, the nausea came back with a vengeance. Tonight it was relentless. Nonstop gagging retching, where you have to hold a blanket in front of her face at all times because at any moment she could throw up all over the place (which she never did, but that was almost even worse)! She just kept making the mouth movements, curling her lips in as to try to cup the excess spit in her mouth...meanwhile she gags and chokes on that spit and goes precious moments holding her breath because she can't breathe past it! She crunches forward wiping her head back and forth on her legs (because I am holding her arms down to keep them out of her mouth and face). When she tries to lean her head back to rest, she gags again because the spit starts dripping down her throat. It's painful, painful to watch. And it's a vicious cycle that just wont end! I tried giving her Lortab and yes it did make her sleepy, but the nausea just kept on and she wasn't able to fall asleep. I don't know if it was the frustration or what, but then she started crying. A miserable, sad sad cry! I picked her up and held her but the crying continued and so did the nausea (although to a lesser extent while crying). I tried clonidine an hour or so later, but that didn't seem to help either. Finally 30min later, Mike picked her up and held her and she fell asleep on his shoulder. Unfortunately the transfer didn't go so smoothly and she was back awake and crying again. I broke out my last big gun...ibuprofen. I gave her a dose and not 5 min later, she was asleep. She definitely seems to be in pain! I'm sure just the pain in her throat alone (from all the retching) is enough to make someone cry! Please say some extra prayers tonight for my poor sweet girl! We just HAVE to come up with something to prevent her from going through this hell!

9 comments:

Anonymous said...

You don't know me, but I am a special education teacher at a Children's Treatment Centre in Canada. I love my job and I absolutely love my students with all of my heart. Somehow I came across your blog and I now read it faithfully because your sweet Reagan reminds me very much of many of my students. In following your blog I hoped to gain insight into a parent's perspective on the challenges and joys involved in raising and caring for a child with medical needs so that I can be as empathetic and supportive as I possibly can be to the parents of my students. Along the way, I have come to care a great deal for your sweet little girl and your family. I just thought I would reply tonight because I agree wholeheartedly with what you wrote about "tragedy". While the passing of Robin Williams is very sad, it is much sadder that there are children like Reagan suffering every single day and that you, as her parents, have to witness this suffering, often helplessly when even medical experts aren't sure what to do to help her. I just want you to know that your love for Reagan and Ryan is evident in every word that you write, and your determination to help Reagan live as fully as she possibly can is inspiring to me. You are clearly very devoted, determined, loving, special people. Never give up; there are undoubtedly many other silent readers like me who are cheering you on and supporting you from afar. I wish there was something I could do to help make your journey easier. At the very least, I will continue to try to raise awareness about mitochondrial disease and to promote inclusivity, equity, accessibility, as well as empathy towards parents and children dealing with similar situations. Hoping for a good night's sleep for all of you and for better days ahead!!!

Reagan Leigh said...

What a wonderful sweet comment! Thank you so much! And thank you for your dedication in working with kiddos like Reagan and spreading the word about Mitochondrial disease! Sometimes I feel as though I'm the only one that reads the blog (I use it often to go back and look at how Reagan responded to certain medications or formulas or the dates of procedures etc...), but it's nice to know that others learn from it as well!

Clarissa said...

I felt the same way... people love to get in on the "this is a tragedy and I am now grieving" thing over people they did not know or love, except from afar and only their acting (not even who they really were)... I always feel like those people obviously have not experienced real tragedy (and I don't wish it upon them) and they are very naive. I lost my mom when I was 21 after watching her suffer horribly for 5 years from brain cancer (very similar to what our girls go through), I lost my son mere hours after his birth, and I have watched Abigail suffer EVERY DAY for 7 and a half years as an innocent child... yes, we know what real tragedy is (yes, it could be worse, yes there are others who suffer more).. but an actor dying is not a tragedy for anyone except his own family who knew and loved him...
anyway.. I am SO sorry for the nastiness Reagan is going through... HATE the constant retching!! and all that comes with it!! Praying she got relief last night and that she is better today!

the grandma said...

What a blessing it was to hear from this reader! Please know that your kind words really helped my daughter. Tera is one of the strongest woman I know and I am so very proud that she is my daughter, however, I know there are days that are filled with despair. Thank you for bringing a little sunshine to not only our family, but the entire Mito community. :)

Anonymous said...

I am very glad now that I did choose to comment. I have been tempted before but I always felt a little uncomfortable, as if I was intruding into your private life. I understand that your blog is available to be read by the public, but that you probably also use it for very personal reasons. Anyway, please just know that in those days that are filled with despair, as your mom described them, along with your close friends and family, there are also people who care very much about your family who don't even know you. It is obvious how strong you are, but in your situation even the strongest of people would feel overwhelmed, exhausted, and discouraged. Keep fighting. You truly are an inspiration, and so is your beautiful daughter.

By the way, my name is Kellie and I live in Ontario, Canada. Hugs to you and your family!

Fernanda said...

Hello,
I came to your blog after looking for a special stroller fort my daughter... completely out of the blue. I became very interested because I have also an special child who has kabuky Syndrome. My daughter is only 4. She is very funtional but has a lot of issues due to her syndrome. I have to struglle every day with something new. She doesnt sleep well too and it is vey hard.
I couldnt agree more when you say about tragedy. There are a lot of diferentt kinds of tragedies. You and the other mom explained very well.
The tragedy of our own child is the worst of all.
I really hope that Regan can have better days, and you can get better sleep also.
Hope hearing from you.
My name is Fernanda Berretta, and I live in Rio de janeiro, Brazil. Sorry about my english.
Big hugs for you all...

Reagan Leigh said...

Thank you Fernanda! The lack of sleep is probably one of the most difficult things to deal with! ;) So glad to hear from you as well!

fernanda said...

I would like to send you a private mail just to check with you how is the life in Houston with na special child. My husband thinks about getting him transferred to work there but I am reaaly afraid of how to deal with therapies and treatments outside my city.
Would you mind help me ansering some questions?

Reagan Leigh said...

Absolutely! Houston has a great medical center, so your child will be well cared for. You can email me at babyreaganleigh@yahoo.com, I'll be looking for your email!