Wednesday, January 30, 2013

DRY BED After Night One of The Great Experiment!!!

Dry bed after night #1 with youth diapers and washable under pad on Garrett's bed. Better yet, the pad wasn't wet, and that diaper was AWESOME!!! It held the urine with its larger area of absorbency!!!!
This is the end of the report!

One Happy Mom,

Tuesday, January 29, 2013

The Great Experiment Begins

This post is not about genetics, medical treatments or deep emotional issues. It is about one thing....... KEEPING GARRETT'S BED DRY AT NIGHT. So go no further if you don't want to know all about it!!!

The Great Experiment Begins!!!
Garrett is not able to use the toilet for bowel movements at all. He is pretty much potty trained for urine during the day as long as he is reminded to "go." But the night is another story. He urinates so much at night!! Yes, we have cut evening liquids. Granted, he is usually in bed about ten hours, but still, the kid urinates a LOT! I have tried waking him up at night and sitting him on the potty to urinate, but nothing ever happens. Some nights I change his diaper after midnight. So put a diaper on him at night, and that's all solved, right? BIG NO!!!!!!

Let me also mention that 6 out of every seven mornings, everything on Garrett's bed has to be washed. I have already given up using a flat sheet on top of him because he likes soft blankets, and one less sheet to launder almost daily is huge!!! But when he is wet in the morning, he has his mattress pad, his soft blanket, his fitted sheet and usually this monkey pillow/blanket thing he loves to sleep on all soaked and smelling badly. Because he has a full-size bed (so we can lay down with him when needed), it's a good bit of bedding, resulting in two loads of laundry for his bedding 6 days per week. And that's two loads daily before I can even think about getting to the rest of the family's wash!! And yes, we have a plastic mattress cover too.

Pull-ups are what his medical supply company recommended last year for nighttime, but they never worked. They are not designed for a large volume, and Garrett has little bird legs, especially his thighs, so the pull-ups gap terribly and then urine runs right onto the bed. So then we were sent the size 5 generic diapers by medical supply, and while that worked for volume about half the time, Garrett has outgrown then completely, so that's out. We started ordering these pads that adhere to the diaper on the inside, like a giant feminine napkin, but he fills that and then urine overflows all over the bed, causing more bulk causes more gapping at the thighs, and then the pee is totally bypassing the diaper. So the medical supply company recommended these disposable pads to also place under Garrett at night to catch excess urine. Sounded like a good plan, but they are really thin, move about the bed when Garrett moves, are too small in area, and are cheap plastic that wakes him when he moves around on them. One night last week, I taped two of them together and then onto the bed, and Garrett was a mess of tape and plastic the next morning.....and the bed was soaked. Strike out again!! Then three mornings ago I saw he must have gotten up in the middle of the night and COVERED his bed in the pads.....must have been six pads, but the bed was soaked and the pads were all over the place in the covers, completely dry. The largest size of Huggies Goodnights will likely fit okay for a month or so more, but then urine usually leaks around those also, and Medicaid will not cover them.

But tonight, tonight my life was changed forever!! I had called to ask the medical supply company for some washable pads to lay across the bed under Garrett. Sounded like it could work, maybe. I even had one of the service providers for Garrett's therapies tell me that I could get two washable pads per month. Each is 32 inches by 36 inches. She also said some parents sew two together so they lay across the bed onto the sides of the mattress and seem to stay in place that way. RaeAnn, Garrett's developmental therapist, got excited about that idea and also mentioned sewing Velcro to the sheets and the bottom of the pads to keep them in place....BRILLIANT!!!

But it gets better!! I drove to the supply office to pick up the two reusable pads and for at LEAST the 10th time in 20 months asked if there was any way to get a diaper product larger than baby diaper sizes but smaller than adult diapers. For the past almost two years, I have asked this every other month, and I have always been told that there is nothing between an adult small Depend-type under garment and a size 5 kids' diaper. But Miss Andrea (forever my hero!!!!) at the supply company said, "Why yes, we do have a youth diaper for waist sized 18 to 22 inches!" I almost cried. Literally, almost cried. My eyes welled-up with tears, and I almost hugged Andrea!!! She brought out a pack, and I opened it, and it was one of the most beautiful things I have ever seen and held in my bare hands. Seriously!! It has two waist tabs on each side and a HUGE area of absorbency both side to side and front to back! WOW!! But even better is that they are covered by Garrett's Medicaid. I say this is even better because many times with Medicaid, things that are a bit off the beaten path are not covered. So we could not get larger disposable pads to place under Garrett at night covered, for example. They cover one type, that's all. Now hold the phone here, because I do NOT want to sound the LEAST ungrateful for the supplies Medicaid covers for Garrett. I am thankful for each item, literally!!! And yes, we pay for lots of things it does not cover and have been doing so for years. In fact, none of this was covered at all in Louisiana before we moved to Idaho two and a half years ago. But this was a huge discovery. Now on the other hand, I am still not sure they no one could find these for me within the supply company before today. But that's water under the bridge and MANY loads of laundry that have been washed. Maybe I had to be desperate and sound extra-deranged to get someone to look for them. Today was MY DAY, people!! I also can still get the small under-pads, which I will, because every time Garrett has stool, it takes one or two of those to place him on to change (there is no way to describe his poops with words. You would have to change one.....but if there is one, there are usually 3-8 in a row within an hour, and the consistency is, well, it gets EVERYWHERE), and we can use them for back-up when he is sick at his tummy or we have no washable pads clean. He is no longer like a baby where you can change him on a little cute blanket or a towel to save the furniture or bed. It is vile, horrible stuff coming out of his little body, and we do NOT want that mixed into our laundry anymore than we already have it because of the clothes he soils when he poops through the diapers or pull-ups.

So I walked out of the medical supply store beaming with joy!!!! I felt I had graduated with my doctorate or won the Super Bowl or something. It was so exciting. Even better, Garrett wasn't quite asleep when I got home tonight after the pick-up of supplies and Ainslee's gymnastics. So I went in, showed him the new diapers, put a new diaper on him, and put one of the washable pads under him for the night. He was pretty excited since I had been telling him about the new under pads because any change can throw him for a loop. He was all smiles!

So tonight is the big night!! If all I have is one load of laundry....the pad and the blanket and maybe the monkey, in the morning, I will be a happy gal. Cut morning laundry in half!! Maybe then Grouchy will have some clean boxers!!!!

I almost cannot sleep tonight because I am so excited about these new finds!! Roll your eyes if you like, but you can't imagine (some of you can!) how this may have revolutionized my mornings and possibly Garrett's self esteem, and that's important also!!


Thursday, January 24, 2013

G.I. Appt, More Tests Ordered

We saw Garrett's pediatric G.I. specialist yesterday in Boise. First of all, I love this nurse practitioner he sees!! She is kind, listening, understanding, and very curious. She investigates Mitochondrial Disease on her own in her spare time and has even referred kiddos out who have ended up with Mito dx!!!!

So here's where we are:

1. Poop therapy is over. Garrett has gained the ability to properly use his pelvic floor muscles to the satisfaction of his physical therapist he has seen since October. However, even though his muscles are cooperating, no poop comes out on the toilet even with use of lots of laxatives to help him time the poop. Seems the laxatives no longer work on him. They don't even cause any cramping.

2. G.I. specialist has read lots on Mito and believes that we should hold off on any pressuring Garrett to poop on the toilet. She thinks there may be nerve damage or nerves not working properly that are causing things above the internal sphincter not to work. He has no control over this......and may never.

3. G.I. specialist has recommended some testing, and we will start with an MRI to rule out a tethered spinal cord. Likely that is not the issue, but she believes it is worth ruling-out. She thinks his poop issues may be like his ears....nerves not working properly. And if the nerves are shot, there isn't much we can do about it.

4. G.I. also wants us to see urology since Garrett has days of leaking urine all day and then still soaking his pants multiple times on one day, then going on the toilet fine for days. Since the MRI will be done under anesthesia, G.I. says she would like to see if urology would like to add on any testing in the nerve area for Garrett's issues with urine.

Looks like the MRI is currently scheduled for February 21 with the urology appointment on February 14. Lovely way to spend Valentine's Day. Sorry, I am grumpy!! Sort of how we spent New Year's Eve camped out on the floor of a small bathroom with Garrett hooked up to the poop therapy computer trying to time a poop for bedtime. Fail.

So I feel in my gut that we are about to give up on the whole poop deal. Or maybe I am hoping we can give up.....not on Garrett, but on pushing him to do something I truly do not think he has the ability to do.

I just would like us to have a focus. Or not. Let's either keep pushing these therapies weekly, taking him out of school, burning gas, spending one day per week out of pocket and get this toilet training done. But therapy said it's all they can do, and nothing has changed for pooping.

I am okay with someone telling us Garrett will just be in diapers forever for his stool. I really am. No,
I'm not. Well, I am from the point of Garrett needing to be let-up on if he cannot poop on demand ever. But it is a HUGE milestone give-up. Who am I kidding. My son is seven and a half and cannot poop on a toilet. Should have had more realistic hopes, I guess, but then I didn't want to "give up on him."

The reality keeps sinking in more deeply. Gosh I love this kid. I will change diapers forever, live inpatient with him should that time come, and give up every fiber of my being to keep him happy and healthy. But hearing of nerve loss and such is truly disconcerning. What's going on or NOT going on in his little body, and is this progression? It makes sense if he has nerve damage in his inner ear that he could have it in other areas. Simple.


Saturday, January 12, 2013

NuclearMitome Test Results

I will go out on a limb here and attach an image of the results portion of Garrett's mtDNA test results in the even they can help anyone else in any way. Bottom line is that there was no conclusive genetic explanation for mito, but Garrett is a carrier for 3 variants of genes with autosomal recessive disease inheritance. We have yet to see Dr. Saneto, and he is not getting the results until Monday morning. It will be very interesting to hear his take on this as these 3 variants are possible to create really scary disease if they are passed along. Needless to say, our two daughters will need testing before they begin a family AND will need counseling from a geneticist.

I will say that the little internet research to see what these variants can cause if they are present in disease are SCARY.

My question is whether, even though these variants "shouldn't" cause disease, COULD they somehow allow Garrett to be experiencing the symptoms he has??? I know, probably not. But it is still worth knowing!!!

So check it out if it interests you, and I am open to ideas, sharing, my opinion, etc., if you want to research or have an y experience with these variants with your testing!!


Tuesday, January 1, 2013

My First Polar Plunge! Burrrrrrr!

Today I embarked on a new adventure! A polar plunge to benefit Make-A-Wish Idaho. Garrett's wish of meeting Mickey Mouse and riding a train at Disney World became a reality this fall, and ever since we learned his wish was to be granted, Grouchy and I have wanted to try to repay our trip plus pay it forward for others. Well, today was the first fundraising event where we have raised money. Up to $500 just soliciting donations today!! We are so excited and thankful!!! We have taken Garrett to a fundraiser as a Wish Kid, but we were not the entity raising the money. I was not sure, with the recent very cold temperatures and snowfall, that I would feel comfortable driving up to the Plunge site, but as of last night, it was a GO!!! I had a few friends who expressed an interest in plunging with me, but their schedules didn't cooperate, so I called one very dear friend who I figured would not plunge but would hold my towel and take photos. My sweet Tass said yes, so we took off this morning to Lucky Peak Reservoir. It was snowing on our way, and temps were around the low teens. We arrived and were surprised how many other idiots were up for the challenge!! Case in point.....I am pictured below with some new friends:

This is a shot taken from the ladies' changing tent. Yes, there was a large, heated tent for us to use for getting undressed and dressed!

And here is my dear buddy Tass who later today, while shopping, bought a magnet for me that says: Friends don't let friends do stupid things....ALONE! How fitting!!!! She stood there and froze while watching the madness. It wasn't until the drive home she told me she helped several men get their shoes on as their hands were frozen stiff!!! She's amazing like that!!

I took a photo of Garrett to share with the Wish staff and to anyone who wanted to see an actual, real kiddo they were helping. I asked these first-time plungers why they were doing it. They said they thought it was a wonderful cause and a fun event, so they had raised money. So I asked them to have a photo made with my Garrett, and they did. Aren't these three girls beautiful!!

Today was fun! Everyone there was happy. The resounding farewell I heard was, "See you next year!" Many people only see each other there annually, and make it a point to high-five! There were a few people water skiing and wake-boarding. All ages were represented, and the event has a history of raising about $50,000 during this event. I find that impressive, and what a great way to kick off the new year!

If you would like to make a donation in Garrett's name, send a comment here, and I will send my address to you. Checks should be made payable to Make-A-Wish.

If anyone wants to join me next year, I would love to have a team!! It is truly an adventure, and no, it isn't THAT COLD......YES IT IS!! I went up to my chin, but next year I vow to go all the way......with a few friends for peer pressure!!!!!

THANK YOU AGAIN, Make-A-Wish Idaho!!!