It has been a rough few days. Lisa got sick and the 3 other girls have followed, Lisa described our home as “puke city”. Madeline has another lung infection now, which is making it a little more difficult for her to exchange oxygen leading to more (and deeper desat episodes). Some of these are accompanied with dangerous drops in her heart rate as well.
Seems likely that Madeline will have surgery soon on her partially paralyzed diaphragm, although there still is no plan as to who will do it or when will it get done. The ventilator is doing a good job of keeping her lungs fully inflated so the desat episodes are not likely a result of her diaphragm not working, but rather a result of decreased use of diuretics (they throw her sodium levels off) and her new lung infection which is getting her congested.
And to add to all of this we have a big audio show this weekend. We have been real busy and preparations are under way to get everything in order for the weekend long show and the two after show parties we are having at Soundings. Every year I feel we are not quite prepared for the show, and this year, with Madeline, I feel even less prepared.
This morning Lisa was here as Madeline had a desat episode accompanied by drop in heart rate. Madeline’s heart rate dropped to 40, her saturation levels dropped down to 40’s, she was blue. Lisa tolerated it very well considering she was crying. Sara bagged Madeline back using quick short breathes, long breaths with the bag only cause her stats to plummet.
A short while ago a respiratory tech came in with some tubing and said “did they tell you about the nebulizer medicine we are going to give her?”. I said no, he said they had confirmed the lung infection and he had some medicine he would administer through her vent tube and bagging. Madeline was sleeping peacefully and hadn’t desatted at all since the morning. He hooked up the tubing, turned on air to the bag, and began long slow bagging.
I watched as Madeline’s sats dropped from 85 down to the high 20’s and her heart rate dropped from 140 down to the high 30’s. I wanted to yell, but he was a trained professional, and before I could Sara was already in the room. “What are you doing?” she asked, and then she quickly instructed the RT on the proper bagging method for Madeline and slowly she came back around.
This was my limit…the point that I just curled up and cried for a while. I am amazed how strong God has made us in the face of all of this, but this was a little more than I could do. Sara came in with some tissue and ice water and we talked. She is amazing, she has such a calming effect, not only with Lisa and I but also with Madeline. I am worried about what would happen to Madeline if Sara were not around.
I am now forbidden to go home on account of sick kids, so I’m gonna spend the night at the hospital. Somehow I have to get home, changed, and back to the audio show for last minute setup early in the morning. Please pray a lot for Madeline and all of us, we really need it now to get through the weekend. Pray also for Michael, he is back here for a procedure to balloon his aorta. Pray that goes well. And as Molly prays every night, pray for all the mommies and babies to be healthy.
In the strength of Jesus,
Shanker & Lisa.