3 week cold

First off...Thank you all so much for your love and support with this upcoming baby! 

We are thrilled and so excited!

As I mentioned in my last post, Maggie had become sick and it only got worse from that weekend. 

We missed out on a family vacation to St. George with Whit's family and our house basically became a hospital. 

Before Mother's Day, Maggie woke up one morning with a very obvious stuffy nose. We had just gone though a month of something else bothering her so I was not in the mood to sit around and not know what this was that we were going to battle. Off to the pediatrician to find out that this was Rhinovirus (common cold). 

A little relieved it wasn't RSV or something worse we prepared to combat this at home. 

Spent the weekend thinking that it wasn't great, but surely it couldn't get worse. 

Geez, it might has well have been RSV with how hard this was for her! 

Every morning would be a fight for her to be stable and able to breathe. 

The moment you would take her off  her mask, she would desat into the 60's. So we would help her cough and when that wasn't really helping anymore, we would put her mask back on for a break. That would only last for a minute and she would be struggling to breath even while on her ventilator, so we would take it off and cough again! All the while she was so distraught and scared. I HATE seeing her like that! All I could do was to repeat the process until she would calm down and feel like she could breathe again. We normally do Albuterol treatments to help loosen up and mobilize whatever is stuck in her lungs, but this seemed to only exasperate these situations. It seemed to raise her heart rate so much that I think she was also having cardiac problems and anxiety with it. Every day we contemplated finally taking her to the hospital, but after the morning we would see a different little girl and think, "ok tomorrow has got to be the turning point"... By the end of the week I was at my breaking point!

I am so grateful for Whit who is amazing at keeping his cool, as I am about to breakdown to him on the phone. I am so grateful for all the medical tools we have at home, which allowed us to keep her at home. Even if we go to the hospital, we do all of Maggie's cares so being home is where we prefer. Her room turned into our PICU when for a week we literally stayed in her room all day and night. When Whit would get home, we would have a chance to gather everything and go out into the living room for a little while. 

I am also so grateful for my wonderful Visiting Teachers Sandra and Mary...and my sweet cousin Kim (who is my Relief Society Pres) to bring us some dinners. They were so appreciated!!!

Thankfully we finally did turn that corner, but colds linger.. and 3 weeks later we still aren't back to normal. A new normal could have come because of this, but we are still trying to get back to where we were. 

I don't think we've ever had a cold this bad..even with Jonas. This was emotionally and physically draining for all of us. I have always envisioned Maggie sticking around with us for a much longer time, but this sickness reminded me of the true reality of SMA. The reality that a common cold, a cold that healthy kids can easily function with, is so devastating to SMA kids. 

It's hard not to hide in your house all the time, but then we remember that we have to live to. 

To make our memories! 

 Movies, movies and more movies. We discovered some new favorites during this time. Aladdin, Beauty and the Beast..

 Megan, Maggie's sweet, sweet cousin stopped by one day to drop off balloons!

We love her!

 

  Being able to come off her mask and do a nebulizer was a huge step in the better direction.