Marvelous Monday

My eyes are darn near glued shut after such a crazy weekend, but it was amazing! So what am I thankful for this week? (Also ties in with dwarfism.) The word from the neurologist in Boston: NO sleep studies in the foreseeable future!

And then the whole Martinka family let out a collective sigh.

Many children (most) with achondroplasia have at least one sleep study in their life to monitor sleep apnea, or assess the risk of its development. For Addie, her first study showed both central and obstructive apneas. This meant that her brain was not operating properly while she slept- basically forgetting to kick back in and take a breath (although her oxygen saturation was still acceptable), and she also had some issues with adenoids and tonsils while she slept, blocking her breathing. I was nervous, but we went back 6 months later and ended up with a completely different story: fewer occurrences. Her doctor believed her system was maturing and she was growing into some of her features, so the decision to take tonsils and adenoids was delayed until we had one more study.

This past sleep study showed a near-normal level of sleep disruptions, except for instances of gasping. Thankfully, we will just keep an eye on the situation and report any serious differences. This is wonderful news to us, as it means no more sleep studies on the schedule, but it also means we have an answer as to why she wakes up in the middle of the night and cries and perhaps we can find ways to help her soothe back to sleep (but we really love having her come to bed… shame on us!). As I’ve stated before: knowledge is power. As a parent this is so true. The more we know about our children, the better we can diffuse a situation like disturbed sleep.

So, this last sleep study threw me for a loop. The drive was uneventful as usual, with our arrival time coinciding with Addie’s usual dinner time. So we ate, sitting in a chair together. It was a fine dinner… but Addie was suspicious the whole time. When a tech walked into the room, I lit up! The same angel who made our last sleep study a dream was standing before me. But what was she saying? …that she was working the NICU that night. Blessed babies down there, for sure. The tech we had was fine, but not wonderful, and really needed to give Addie a bit more bedside manner while attaching the leads- she was freaked out- to say the least!

*TIP* I dressed and took out my contacts before Addie was hooked up so that I could have all the light and make all the noise I needed to. I plugged in my charger, made sure my water was in a reachable place and put my snack out (but hidden from Addie) so that everything I needed was out of a zipped bag.

Once my little mama was all linked up, she cried and gagged so hard I thought she would vomit, and she begged to be snuggled. I cradled her in my arms with her chest heaving against my own and her tears soaking my shoulder. When the tech suggested placing the cannula in her nose while she was awake, I literally scoffed. There was just no way in hell those two sensors were getting near her face. As I gently laid her down, the tech said he would be back soon to try and hook it up.

Every half hour from 11pm to 3am someone came into the room… even our favorite tech came up from NICU to try and attach the cannula that seemed to be eluding everyone else. Finally, it was in- and the sensor below was there, too! My sweet lady went on dreaming for a couple more hours before someone came in (a different tech) to rouse her and let us go. When the tech came in, I hopped up and got dressed myself- the lights were up super bright without warning, so I wanted to be ready for Addie to get up, too. *TIP* I had worn the same shirt to bed and just threw on my jeans, a cardigan, slip on shoes and glasses. I brushed my teeth and tightened my ponytail and was ready for the day… or the drive home to shower. This 3 minute routine made me available to Addie immediately- throwing everything in my bag and ready to be there for whatever my girl needed.

I was, to be honest, disappointed in Boston Children’s this visit- and I filled out my review as such. The tech who came to unhook Addie told me they had no hats (which is not true, we have always been given a hat) and literally woke her by rolling her over, not-so-gently, which terrified her. I picked up my screaming toddler and again, wrapped her up in my arms and let her cry. She was so startled she was near shaking. I asked if we would sponge her off, and the tech said no, just a bath when you get home. I wanted to cry, myself. I quickly dressed Addie in the comfy clothes I’d brought for her and huddled her close.

As we left, me smiling through gritted teeth, Addie kissed my nose and plopped her head down on my shoulder. We took a selfie I would like to title Getting the Heck Out!

 

*TIP* Get your parking validated the night before your stay! We were leaving before the front desk was fully staffed, and had to go back to the Emergency Room entrance for parking validation- I wish the woman who checked us in had reminded me the night before, but it was what it was. We headed home where our requested breakfast of “brefast bamitos” (breakfast burritos) were being prepared by Dave.

So… without a sponge bath and hair all a mess, how did we move on? Here’s how to get your day back:
1. Take off the stickies with rubbing alcohol on a cotton pad. Remember the leads on the legs, neck, face, belly and ribs all leave residue.
2. Run a warm bath with Aveeno Soothing Oatmeal bath… it’s perfect to rehydrate the skin and relax after the night.
3. Soak the scalp with MediTech No-Rinse Shampoo & Body Cleanser With Aloe Vera Gel. I was given a bottle from my favorite tech after the last sleep study we had. It’s usually used on bedridden patients- so most hospitals will have something similar. Working it in, the hair will soften and the glue will loosen.
4. In the bath rinse hair, then shampoo (massage hair a bit longer than usual) and condition (we used Ology, which I swear by!).

After your bath, take a nap, enjoy some snuggles and when you wake up- the memory of leads and hospital stays will be long gone!

An LP child certainly has an interesting life with so much being the same and some not so much, as other children. It takes a strong child and parent team to get through those studies, but even the bad ones don’t have to stay that way. Advocating for what your child needs (to nurse, to be held, to not have a cannula while awake, etc.) can make it a better experience… that, and a nice warm bath afterwards!

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And finally my random tidbit… I am still on some kind of high from this weekend’s Listen to Your Mother in Providence. I never imagined an experience like this, a sisterhood forged so quickly and with such a bonding power, as I experienced. There is so much I want to say, but no way to calm my thoughts and get it all out yet. I just wanted to thank everyone who was able to come and all the well wishes! I think it was a fabulous cast- and am so proud to have been a part of it! What a whirlwind Mother’s Day… hope your’s was a blast!

Have a wonderful week, Reader!!!

XO