Monday, May 1, 2017

Little M's Heart

We got up before the sun on Friday morning to get out the door for little M's heart cath. A friend drove us to the hospital (thanks John!), and we got settled in. We talked to the team, we built legos, and we discussed the plans for the day with her team.

Our girl was a little bit devoted to have to get an IV before she was sedated, but the general concensus was that if she could do the MRI without being sedated, they would get better pictures. So we did it...

The cath surgeon came to talk to us, and he went through his plan for the cath and stent placement with little M in detail. Then he asked is she had any questions, and she replied "No, I googled all the things about heart caths and stents."
He laughed and said "oh yeah? Maybe I should ask YOU the questions! How long is a stent?"
Little M said "about 24 millimeters. Almost an inch. I was surprised it was so long."
Dr K recovered, laughed, and said "ok then! You've got this!"


He was able to place a good sized stent in her left pulmonary artery, almost doubling the diameter of that! This is awesome for her, and when she outgrows this one (stents don't grow with you), it will be fairly easy to make this larger via another cath.


Our girl came out, and slept the day away. We tried to wake her several times, but she wasn't having it.
(Thanks Kelly, for hanging out with our other kids!)


Since she has to lay still post cath with her leg completely flat for six hours, it is just as well, and we let her sleep for a long time.

She finally woke up, and we got a little smile while she ate a popsicle before she went back to sleep.

Much later, when she was alert and eating more, the six hours had more than passed (we were going on nine hours), we decided to get her up to move around and use the restroom before bed.
She was doing so well, and we walked a loop around the hall before coming back to the bathroom. As soon as we walked in, little M said she felt sick to her stomach, and she got sick. Then she lifted her hospital gown...and there was blood pouring down her leg.

The pressure dressing on her cath site had been removed after six hours, which is standard. Normally, after this is removed, if all is well, you can typically go home, but we were staying the night for observation because of the stent placement.

I grabbed some toilet paper, and pressed it to the site, which was freely pumping blood, and ran to the door to call our nurse. As soon as the nurse came in she set the alarm, and we quickly had plenty of people surrounding our girl. They took her right back, and even though it seemed like forever, the bleeding was under control after about ten minutes, and a new pressure bandage was applied.
Little M lost a significant amount of blood, and was non-responsive by the time she was being wheeled back. She had a very low blood pressure throughout the night, and was given meds for that, as well as fluids, and some iron.



The next morning she was still pale and tired, but she was happy to sit and play in bed...



She got an echo to check her stent, and all looked well.




















She got an x-ray to check her lungs, and all checked out well.


We took her home Saturday!


Poor little M is still very weak, and tires SO easily, which is frustrating for her, since she wants to go back to school.


She has taken several naps today, and we will see how she does tomorrow. She lost so much blood, that I expect it will take a while before she is back to normal.

She has just started to show her regular sunny, happy personality today, and we've seen some real smiles, but our girl is also very fearful. She was awake and alert enough that she heard most of the conversation among the doctors and nurses working on her when she was bleeding.

She is afraid to go to the bathroom alone because she doesn't want to bleed to death, and she wants me to be close to her constantly.

She will get past this, I know, but if anyone has any good ideas, please share!


For now, we hold her close, we talk through fears, we love with everything we've got. And we are thankful...so thankful our girl is here with us to hold and love.


1 comment:

noname said...

What a brave girl! My only suggestion is that when she is feeling better, say in 2 weeks, look back on it and say "Wow, look how far you've come! You were so tired and weak but now look where you are! You got through all of that bad stuff!" That will help her know in the future that the bad times do indeed end. I learned it ten years ago when I had dry socket for a month... one day it dawned on me that the pain was gone and now I know I can get through anything. It may not be easy, but it will end. :-)