Abby · Down syndrome

Recovery and Other Good Times

This isn’t going to be the story-telling post I wanted it to be. I promised a follow up to yesterday’s surgery story, but as Abby’s recovery is still ongoing, I don’t have the time to work this one out the way I would like. And honestly, there’s no real way to do justice to how much it meant to me to have my siblings come out to help with the surgery. Anways,  moving on…

Me and Abby playing while we waited

Abby came out of surgery groggy and uncomfortable. I scooped her up in my arms and put her on my chest, where she fell into a more comfortable sleep. As she slipped deeper into sleep, her oxygen saturation level (“sats”) dropped. The swelling from all the work done combined with her already weak lungs was making breathing difficult for her so they wheeled in- of all things- a gigantic tank of helium. They mixed the helium with oxygen to make it lighter- and thus, easier for her to get into her lungs. She was not happy with the mask, but as soon as her body could stop fighting to breathe, she fell back asleep.

I held her for a couple of hours until both my arms ached. I gave Lance the turn to hold her he had been waiting patiently for. She nuzzled into him in a way that only she could. Lance has a feeling about him that is very calming, and Abby is not immune. Knowing she was stable on the heliox and with her father, I slipped out to grab the boys from the bus and to get my oldest sister and youngest brother from the airport.

also, they're crazy.
also, they’re crazy.

There wasn’t the traffic I had planned for, so arrived to the airport early. My kids love the Providence Airport because there’s a large area they see as a running/wrestling arena. Knowing they’d be cooped up in a hospital for the next couple of hours, I let them have at it.  My brother was the first to arrive, and because I script better than my autistic son, I quoted Nemo and said, “Go on, jump on him!” They tore off towards him and almost took him down. Melanie came shortly after. When they both arrived, I instantly felt my stress level go down. I knew that I could now turn my focus just to Abby, because the boys would be well taken care of, and also would have a ton of fun.  I knew that eventually, too, I’d be able to get a break. The exhaustion that had already seeped into my bones had an end in sight.  I felt so loved.

It felt like home.

We went to the hospital where Abby had been doing well enough to get off the heliox and was awake and watching a show. We ate a quick dinner and I sent my siblings home with Lance to get the boys to bed.

Down syndrome, surgery
The morning after her surgery

Abby had slept most of the day after her surgery and wasn’t ready to go to sleep again until about 10. I had been up since before 5 and was completely exhausted. As soon as she was asleep, I tried to sleep as well. I’m telling you, I can totally see why sleep deprivation gets terrorists to talk. And “sleeping” at the hospital is a work in futility.  As soon as Abby started to drift off to sleep, again her sats would drop. Finally they called in the respiratory team who put her on blow by oxygen. Blow by is super great because you don’t have to deal with a mask or nasal canula, but doesn’t work if they turn their head away from the tube. So for the next couple of hours, every time Abby would turn her head, the alarms would go off and I’d have to wake up, move the oxygen to the other side, and then try to get to sleep again. Finally about midnight, I had started to drift off when the loudest high pitched SCREECH went off. It sounded like an industrial sized tea kettle had blown. It was the helium tank. Someone had left it ON with it still plugged in to the oxygen. I guess the pressure had been too much and it blew.  After that madness, I drifted off to sleep for about a half an hour when the nurse came in to have me give Abby her pain medicine.  Abby hates it, and it threw her into a full on rage. It took me another hour to calm her down. I started to drift off again, when the alarms next door went off and several nurses had to rush in to care for an infant. This went on for over an hour. It was 3am when I fell asleep again. The nurse came in at 4 for Abby’s next dose, which woke her up for good. I got in bed with Abby who literally clawed at my face until I finally woke up to play with her. Aside from giving her medicine,  Abby slept pretty well. The alarms and even the helium taking blowing didn’t wake her up- because she couldn’t hear them.

We had been warned several times that because of the need to thicken Abby’s fluids, there was an increased chance that she’d have to stay in the hospital for up to a week. But by noon the next day, she had proved that wouldn’t be the case and they released us at noon. My brother and sister came and got us and took me to my home that they had spent the morning thoroughly cleaning. It sparkled. It was the first of many awesome things they did while they were here.

Abby bouncedIn Newport, Rhode Island back like she bounces back from everything; she’s super tough. As long as she had medicine in her, she has mostly done just fine. This allowed for a fun almost-vacation week with my brother and sister.  We went to Newport, ate delicious seafood, shopped at kitschy stores, and, because I’m super classy, I even took them to our Goodwill store (It’s a Savers, but not everyone knows what that is).   We ate too much food, watched a ton of Duck Dynasty (oh my gosh, have you seen that show? It’s so dang funny) and played games. All of the sadness and anxiety I had been carrying around with me was lifted. I didn’t do a single dish while they were here. Melanie is as fast at cleaning up as I am lazy. Jamey spent more hours than I have the attention span to count chasing around Abby and playing with my boys.  Jamey watched Abby so Melanie and I could go to the little antique stores around here and Melanie watched the kids so that Lance, Jamey and I could go to Carter’s basketball game.

I mean…just kidding…it was super tough and all we did was care for Abby and had no fun whatsoever. (Just go with it, their spouses might be reading…)

Surgery, Down syndrome, baby


While we were at the game Abby had a rough spell, and I came home to find that Melanie had sung her to sleep:

Sisters, Down syndrome, help


This is Melanie duct taping my kids up in blankets so they could play “Houdini”:

duct tape houdini

And for your viewing PLEASURE, the greatest and best picture ever:

So sexy it hurts

It was so great having them here. The week went by too fast.  Abby is still recovering. She has her times. She also caught a little bit of a respiratory infection, so these last couple of days we’ve spent just snuggling on the couch and eating popsicles. There are worse things, I’m sure…

10 thoughts on “Recovery and Other Good Times

  1. Your family rocks! Seriously, give them my address.

    Glad that Abby is feeling better and that you all had a nice visit and got to go out for some fun. You needed it, friend.

  2. Ahh, the Prices are some good folk for sure. I’m pretty darn sure that Mel learned that super-fast-cleaning-up-before-you-can-even-think-about-it talent from Karen. Haha. But seriously, I’m so glad they could come lift your burdens if only for a little while.

  3. Oh my gosh I love your sister and brother! So happy they were able to be here for you all, and for everyone to be able to rally around Abby. Most of all I’m thrilled that she is doing ok. xoxo

  4. I am sorry, but did you say that your brother and sister cleaned?!?! Goodness, you are one lucky girl! Any tips on getting my brother (or hubby) to clean? Joking aside, it sounds like Miss Abby is a tough cookie and mama bear too. I am relieved that she is home and doing okay. I love the picture of your boys all taped up like a burrito (Houdini) and the last pic. Your brother and sister are a trip.

  5. So glad you had help. So….can I tell you a trick I learned in the hospital? When you are trying to sleep, ask the nurses to turn the alarm off in your room. They should have someone monitoring it all from the outside. So, if she moves, let the nurses come in and fuss with her oxygen or what not while YOU rest. It’s their job and in order to not be a zombie you need some rest. That’s what I told them last time we were there over night. “So, I NEED to sleep in order to function. Please silence the alarms in the room and come fix his oxygen if there is a problem in the middle of the night!” I then covered my head with a blanket and slept decent…for being in the hospital on a mini couch.

  6. I just had to say…I love the boys duct taped in a rolled blanket. Lol. My son with major sensory issues would probably love that just to calm down. Beats me having to sit on him all the time.

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