Morning Update – Nov. 12

Yesterday was another full day, but Megan had a lot of fun. Two of the things they added to her schedule were about fun. She did a child life visit and recreational therapy. The child life visit was in the play room and she made slime. Recreational therapy is also in the play room and she got to play some card games. Today she has music therapy and maybe will have an opportunity to play her clarinet.

When she got back for lunch we got her up in bed because her foot and ankle were swollen again. We alternated ice and heat on it for most of her 90 minute break. She was able to eat and take a “power nap” (her words).

They have also started scheduling sessions for Susan and I. So far it is mostly them asking us about Megan for the evaluations. Today we have the first steering committee meeting. This is where we will go over goals, timelines, and maybe get the first discharge plan.

After her scheduled events yesterday she came back to the room and Susan and I were supposed to go to a caregiver session with neuropsychology. We were working to get Megan into her bed comfortably before our session when someone came to see if Megan wanted to go to the playroom for the third time. She was already up in bed and her ankle was pretty swollen, so I thought she would want to just stay, but she was like, “Leave this room? I’m ready to go!” Had to get her shoe back on and she was out of here.

The neuropsychologist was there when that went down and said she was really impressed. Most kids wouldn’t have pushed to get out of bed after such a long day, but Megan is very motivated. She wants to go home.

Yesterday evening Megan asked about ECMO. She had heard us use the term and medical staff too. So I explained it to her.

If you aren’t familiar, ECMO is “ExtraCorporeal Membrane Oxygenation.” The first word means “outside the body” and the second two reference the method of oxygenating the blood. Basically a loop was put in through the largest vein and artery in either side of her groin. This let them pump blood through a machine that provided blood pressure and oxygen, effectively replacing the function of her heart and lungs.

I explained that this was required to keep her alive long enough for her heart and lungs to recover, but it also led to some added brain damage, that we’ve talked about, and loss of her leg.

Fortunately she is recovering remarkably well from the brain damage. The lost leg isn’t slowing her down much either.

Later, as she was getting into bed for the night, she was looking at her scars on her legs. She commented that the ECMO helped her, but cost a lot too. I was worried, but she smiled and did a scale with her hands. She said it weighed a lot, but not more than her life. Then she called the scars “my battle scars.” Just crying thinking of her smile when she said it. She is so brave.

Some folks have said Susan and I are doing so well. That is a facade. I break down every day. I fall apart and try to pick the pieces back up. I’m a hot mess.

Megan puts me to shame with her attitude. She is a mighty warrior and I’ve no doubt she won’t let anything hold her back.

Prayer Needs:

• Continued recovery
• Healing in her foot
• For her amazing attitude to carry on

Talitha cumi, and own your battle scars because you earned every one, valiant warrior.