Health update for Sam, Day 10

Alicia wanted to give an update based on her thoughts and I agree whole-heartedly. So, for today (and any time she wants) she is giving the update. Without further ado: 

I want to thank you all for being there with us. We have felt incredibly supported, and I think I can speak for Dan when I say we never would have handled the twists and turns of this week without your prayers.

We have already posted our happy pictures of the day...what a difference a week makes! I thought I would give you a medical update, which will include items to be in prayer about over the next few days:

1) They took Sam's blood tonight to test for allergies-we won't get those results back until after we leave the hospital. This is the first step in learning her entire allergy/asthmatic picture that has played a huge roll in all of this.

2) Sam has now passed 24 hours of being on "room air" instead of breathing on oxygen. I just want to cry I'm so happy!

3) She is back down to 4 treatments of CPT (chest pounding) from 6.

4) Her chest x-ray today showed some improvement in the right lung (where 1 lobe was affected), but honestly the left lung looks about the same. The real key is going to be her PFT numbers on Tuesday.

5) Also by Tuesday we should know culture results from what they pulled out of her lungs during the bronch. This is key because if they find something that hasn't been indicated until now, they will modify the type of antibiotics she is on.

6) They will slowly reduce her steroids all week, having her off of them by the 16 day mark.

7) Lastly, she started hypertonic saline this evening, which is very significant since this will be added to her daily regimen when we go home. CFers use hyptertonic saline to help thin those thick, sticky secretions in the lungs. The potential side affect (we have learned) is that it can aggravate the airways of those with asthma. Since Sam has kind of been in a 10-day asthma attack, they have not wanted to start her yet. As far as we can tell, the asthma side of this whole thing has finally gotten "in check" and now we can focus on the CF side. They have her on a low level dose to be careful, and her body accepted the first treatment with no problem.

Note from Dan: Up until about 10:00pm, things were swimming along. Unfortunately, we had to take action last night to help Sam stay healthy. Here is the update from Alicia.

Dan stayed with her last night, and even when we were saying goodnight on Facetime around 10 she started to cough a tiny bit. Her O2 dipped for a sec (the machine goes starts beeping at 88, so we heard that briefly), but then she was steady before going to sleep.

Around 11, things turned worse and for the next 2 hours or so she just kept dipping (even multiple times to the 70s where she has never been before), needed albuterol, and continued needing more and more O2. They finally got her settled down and by 3 or so she didn’t need oxygen at all.

Needless to say, this is disappointing. It’s not good news, but it also doesn’t mean we’re back at square one either. I’ve been reluctant to give her “entire picture” on FB because people tune out after the first few words. I’ve written it above for you fairly detailed. The quick version is that the positives are her lungs sound clear and her O2 levels are up (when they are up!). The negatives are that her left lung still looks pretty full and her PFTs are not where they should be. So it’s never one thing in particular, but all of these items as a whole that tell us where she is.

Most likely the cause of her dips are mucus plugs moving around. So you have to imagine these sticky globs different places. So one is in a particular airway, Sam coughs and moves it, and it happens to settle in an area that actually closes off an airway…then the O2 goes down. The good thing about the mucus moving would be to get it up and out, but she has a lot and it’s VERY sticky the dr said (even stickier than usual CF sticky) so it’s just moving to different spots.

The reason the “worst” symptoms are behind us is that it looks like on the whole they have the asthma side fixed. She basically just had a 10-day asthma attack, and if you’ve ever seen a child in one, you know it’s extremely scary, but once it’s under control it’s done. CF is much quieter…it doesn’t have the violent symptoms (at this age) that asthma has, but it also doesn’t like to be resolved as quickly either. That’s why kids with CF are on multiple preventative treatment daily. So now we deal with the CF side, where Sam looks (and feels) MUCH better, but it will be a little bit before we’re back to her medical baseline.

That was all meant to explain, not scare of confuse. I hope it did the trick!