I am so grateful to be home. I am so grateful to have Mallorie home WITH me, and to be able to bring her into our bed last night, to allow for frequent position adjustments to keep her airway open, and to better judge her level of comfort and know when she was cold. I love being able to decide (AS IF I KNOW) when to try moving the doses of the med that calms agitation closer together, and when to space them out more. Basically, I am grateful for the chance to try to get a handle on the timing of meds and feedings, instead of depending on others to manage all of that. Mallorie is on more meds than ever, and the continuous feedings are not so workable at home. And she has lost weight and seems so thin, so I started thinking while awake during the night last night, that I wanted to start adding some pureed meat to her feedings, and oil, and things like that.
But I'm also sad and frightened right now. During Mallorie's hospitalization, I was the one who kept telling the doctors and nurses that I saw daily small changes in her, and that I believed she would "come back," after awhile. I got that from one of the neurology residents, Dr. Tran, who would point out positive changes to me EVERY time he came in, and say, "See? This changed (she was not having the obvious seizures anymore, or she was showing an ability to breathe with less support, or not running a fever)... That's a good change, right?" And I would have to agree. Once he said, "Her improvement may not be happening in leaps and bounds, but she is still improving."
So I took that from him, and internalized it. I would say to myself and to anyone who asked how I thought she was doing, that she is improving, and that she will recover, but just not necessarily overnight. I would say it to John and to the kids, too. No one ever disagreed with me at the hospital; Hannah and John did try to express doubt, but what was the point? Only time will tell. And I would say that if Mallorie had a broken leg (well, and if she walked), no one would expect her to put weight on the leg for a long while or to walk on it. She would be expected to rest the leg so the bone could fully recover. So I wanted most of all for Mallorie to be allowed to rest, so her brain could have the best chance to heal. Rest and a peaceful environment were hard to come by in a 2-bed PICU room filled with 3 beds, and family members and 3 times the number of people coming in and out of the room on rounds and for medications and respiratory treatments. The best day was when Dr. N, a PICU attending, finally wrote an order to give Ativan at once, instead of just "give PRN" so that the next doctor could come around and undo the order. And she got almost immediate relief, as the Ativan went into her IV line. And then when Mal's new neurologist said she should continue with something like that at home, I felt the weight of having to fight for her being lifted from my shoulders.
But coming home has been hard. Not all our meds were available, although the prescriptions had been faxed to the pharmacy a day early, and we have had to scramble to find elsewhere those which weren't compounded meds, and to wait until this evening to get ones that were. And she still doesn't recognize us or respond to us. She doesn't smile. For so long I feel like I'm the one who has been telling everyone that she will be the same, eventually, but just needs more time, but tonight I am the one who is crying and don't want the other kids to know. I truly believe that it wouldn't be a surprise at all for God to accomplish this. But each day that goes by without this happening, and being home with her like this, makes it all harder to be so sure.
I might as well say it right here: I don't need anyone to tell me I just don't have enough faith. I came across some printouts of emails I had sent out 2 years ago, while Mallorie was in the same PICU, and I was so worn-down. Even then, as bad and hopeless as it might have looked at times, God answered prayers for Mallorie, and protected her from unnecessary procedures that were being suggested to her. But this sentence that I had written 2 years ago really jumped out at me this time:
And she smiled in her sleep a few times just before we were heading off to go to sleep ... the first smiles we'd seen since surgery! That is the part I am missing today. This sweet smile, that we have all over our cell phones, our computer desktops, and that all of us keep sneaking peaks at.
(These are unfortunately all from my phone, as our house is a wreck and I only have time to take a short break to do this post.)
There are some children whose lives I follow through blogs who have lost some of the abilities they once had through events that happened during hospital stays, through errors. Even if mistakes happen, if you believe that those caring for your child listened, and really acted as if they believed your child mattered, you might cope better than if you think someone just would not listen or care. I am grateful to not have those emotions to deal with, as I know Mallorie received good care. It might have felt like a fight sometimes, but people listened. But I do understand better, today, the grieving that comes from having to cope with such changes in a child. How I pray that these losses are reversed for Mallorie, and that she smiles AT ME soon. But I understand a little more.
The Trisomy 18 Connection
1 month ago