Tuesday, May 4, 2010

Rest and Peace

So we had a good full day of rest and made it through dinner Saturday when the alarm went off again. This time, it dropped fast and wasn't coming back up... It went into the 70s, and I got it back up to 80, but it was holding steady. I was fishing around her mouth and top of her throat with the catheter and couldn't get anything so I went into her nose. All of a sudden, light red blood came out with her mucous and I freaked. I mean, I held it together until I got her back up into the 90s, but was emotionally, physically, and spiritually exhausted. How much more of this am I going to have to endure? Why can't Skylar be a healthy little girl?! I called the pulmonologist on her cell phone to make sure the blood wasn't a really bad sign and that we were okay staying at home. She said that the nurses typically are aggressive and probably irritated the membranes and I probably just scraped the already sensitive tissue and it should be fine. A sigh of relief, but my chest still hurt. In the same way that I hold my breath during really intense parts of a movie, I am pretty sure I hold my breath until I can get Skylar back up into the 90s...

Anyway, once she was on bi-pap that night, she did much better. We did her breathing treatments early the next morning and kept her on bi-pap a little longer than usual just to make sure she got a nice break and some good rest. Kyle returned Sunday afternoon and we went back home - Kyle driving, Reese on my lap in the front, Skylar laying down across the back seat and all of her equipment in tow. We are out-growing the blazer fast, hahaha! It was quite a site. She only dropped slightly on the way home (around 88-89) and a little suction held her over until we got home and could plug up the machines. Since then, I've been suctioning at least every hour (some hours it's every 5 - 10 minutes) during the day and that has prevented any further drops into the 70s... we still get an occasional drop into the 80s, but I can handle that. I have learned that her little contorted face is either from pooping or working up a mucous plug to her throat. I have also learned that 94 or below on the pulse ox means there is some mucous somewhere and I have to get it out. If I don't, it will just keep growing and cause a bigger drop when it moves back in front of her airway.

I've been doing some baby massage with her to prevent her muscles from turning to scar tissue, she still wears her splints at night to help her wrists, feet, and ankles, she tolerates her breathing treatments and chest therapy, and we somehow manage to have time to play a little bit during the day on top of her feeding routine. Being hooked up to the pulse ox constantly is a little restricting, but we're still figuring everything out - what works and what doesn't.

On a side note - if anything ever happens in Atlanta where there is a shortage of oxygen, everyone should come to our house! I think we have enough O2 to keep a small village alive!!! We have 7 smaller travel tanks, a concentrator, and a large O2 tank for home backup in case the power went out and the concentrator didn't work. It's pretty ridiculous. Skylar doesn't even use oxygen on a regular basis - it is just for emergency use only and I thought we would be ok with just the one small travel tank... Kyle and I joked around that we would start an Oxygen bar in our backyard by the garden to offset some of the medical bills, ha!

We're doing well though and have had some good family time this week. Kyle and I prayed at Skylar's crib-side last night together, shared a few tears, and are continuing to take things one day at a time, even though it's hard not to think of the future and what might happen. Thank you for the prayers and support. Peace.


  1. We prayed for ya'll together last night too! Ya'll keep taking it one day at a time. You guys are amazing!

  2. This is my first time and I just want to say Hello! and Hang in there, it does get "easier" or more manageable as time goes on. Although SMA is progressive, you as parents of a child with SMA are continually evolving, too. May God bless you and your little girl with the best health possible!

  3. Praying for you all the time!!!