On a good note... it looks like things are working their way out.
Sorry if that's too much :)
On the more sad side.. we found that Maggie has a partially collapsed lung.
It was her 3 month check-up with Dr. Swoboda today and so while we were up at the hospital we had an x-ray just to see what was going on in there.
Funny thing is, you wouldn't really expect a collapsed lung with the way things are and how she is acting. Apparently her lungs are trying all they can to compensate for this, because it's been collapsed for awhile, and her lungs are shifting. Feeling a little guilty again! I guess to make a defense for myself... she wasn't acting terrible. Nothing that we haven't seen before with her or with Jonas. Avoiding a hospital stay is our goal, because everyone is much more comfortable at home. Of course we know the point in which we aren't enough, we just didn't think we were at that point.
When we learned this news we had two options:
Just hearing the word intubate made me want to steer far far away from that choice.
2. Keep her at home, start Albuterol, and start a new medication Singular. All of these would hopefully help open her airway with us being very strict on cough assist. Then after the weekend we can see how things are.
So that is the option we are in right now. Hopefully nothing changes to force us into option one. Each day Maggie has been getting just a little bit better. She still is a happy girl, but just trying to get control of her extra secretions and yucky coughs.
The reason for starting Singular is to see if she has a reactive airway, similar to allergies. Using singular and albuterol are new to me, so if there are any good tips or advice others have would be wonderful to hear.
Anyway, I've always love/hated these 3 month visits. Because it always brings up change, tough decisions, having to accept again that she will never get better in the long wrong.
At least we can get better from this cold, right!
7 comments:
"... it always brings up change, tough decisions, having to accept again that she will never get better in the long run."
That just broke my heart for you. I'm so sorry. I hope the new meds work well for Maggie and you can stay out of the hospital!
Arrrg! We have always used albuterol for Lucy and it seems to work, I guess! We also used mucomyst to break down the mucus (we give that after the albuterol opens up her airways). Since mucomyst isn't made anymore we use a sodium chloride solution. I hope she gets better, we'll be checking up on you guys.
My daughter has asthma, and she is on Singular. And it has worked WONDERS! It is easy to mix if you get the powder form. And ask your dr. for samples, because it is a more expensive RX. We use albuterol as well. It is pretty easy, my daughter fought me with it at first, the taste is weird, but she it didn't take long before she cooperated for it.
Sorry to hear the Maggie has had a rough few weeks. I hope things start getting better fast!
I have Been checking in daily to see how your sweet Maggie has been recovering. Shes working hard to kick this! I have been so incredibly touched by your blog. You and your sweet family are in my daily prayers.
We would give our boys the albuterol treatment with the nebulizer connected in line with the bipap, to get the full effect. Worked better. Prayers your way.
-White's
We've been using Singulair (5mg-tablet that we dissolve first)for a few years now, along with liquid Zyrtec and Veramyst, for our 7-y/o son with SMA. The combination seems to work well for him. I hope your little girl feels better soon. I hope, too, that she would get used to wearing the bipap.
I am always thinking of you guys and praying for you. I know she is going to beat this quickly and we will be hearing about all the amazing things she can do soon.
Erin (Mathie) Berreth
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