Here it is, 10:19pm on Friday and I’m so tired. Sarah is almost asleep and this is the earliest I’ve had a chance to go to bed. But, some big things happened today and I need to tell you. I was pretending to be a cheerleader doing a cheer and I knocked her water over. It hit the floor just right and water went flying across the room. What a mess, but it really didn’t matter because she had such a good day! We redid her schedule to lighten it up and take a little pressure off, but it ended up just packed. She was so weary tonight.
She met with her doctors several times, behavioral health, music therapy, occupational therapy, child life, had several glucose tests, questioned her feeding schedule, had her drain tube pulled, took two hefty walks, sat in a chair most of the day, sent a couple of texts and was amazed at herself for pushing further than she thought she could. All the while I sat in awe of what I was seeing.
It seems her PLE symptoms are settling down just a bit. Her protein levels are higher. Her magnesium, calcium and potassium is all higher. Her kidneys are working a little better but have quite a ways to go. She smiled more today so much so it began hurting her steroid swollen cheeks.
After consulting with the surgeons, her transplant cardiologist felt her last remaining drain tube should come out. The collection bulb at the end of the tube looks like a grenade and that what I call it. “Better empty that thing or it’s going to blow”. It just hangs and bounces off her leg when she walks. This morning she got up to go to the bathroom forgetting about it. It was stuck under the blanket and when she stood up it pulled on the tube site on her belly. It must of hurt. The concern is that the potential for becoming infected by leaving it in is greater than the remaining fluid build up. So there is the physical reason for pulling it but there is also the psychological reason. She doesn’t have to worry about carrying it around or having it pull on her when it’s full. There is a real awareness of being free.
Pre-transplant she had PLE related fluid build up in her belly and legs. We are hoping that clears up as time goes on but it is still happening now. Some of the fluid will drain for a while from the incision where the drain tube was. As that hole heals she may get uncomfortable as her body gets used to the fluid build up again. If it becomes too much for her they will tap the fluid out when she’s under for her heart cath next week.
Several of her supplement meds are being reduced as she is doing better. The weaning of the oxycodone finished today and so far so good. Her albumin (protein) infusions are being cut it half as well. When her PLE flairs up her intestines swell and essential proteins and nutrients are sloughed. With her numbers up the docs are seeing if she can hold her own.
Wednesday morning her oxygen was set at 4 liters per hour and when it was turned down the oxygen saturation in her blood would drop to the mid 80s. She was doing better that night so it was turned down to 3. Yesterday she was satting in the high 90s so we turned it down to 2 and she stayed in the low 90s. This morning she asked to have it turned down again to 1.5 and tonight she was staying in the mid 90s. This is a big deal. It’s like a wind tunnel in your nose and this progress gave her relief and again was a mental signal to her things are getting better.
Julie came this afternoon and we were able to play a partial game of Skip-Bo. It was nice being together. I was nicer to watch Julie be amazed at how different things are from when she left last Monday. Unbelievable progress. Here’s her thoughts…
This is so amazing. Sarah truly is a new girl. She has changed so much since I left her last Monday. I saw her take off on our walk tonight at a pretty good pace. I was the oxygen tank driver and she actually left without me! We had a good, long walk where she went twice as far as she had committed to, and only held a hand the last quarter of the way. She does so much on her own now–standing up from and sitting down in the chair, getting in and out of bed, and my only job in the bathroom now is to make sure she’s ok. Guess I’m mostly here for emotional support now. Her hands are much less shaky. She spent more time on her computer today and actually wanted to play a card game tonight. I think one of the greatest things I witnessed today though was when her daddy did or said something silly, and she laughed! It was so quiet, I would have missed it if I hadn’t been watching her. She laughed so hard her chest hurt. I grabbed her a pillow to hug to support her breastbone, and she laughed some more. Her whole face smiled, her shoulders shook, and she laughed so hard she almost cried. Oh, how I loved seeing that. It almost made me cry, too. Steve kept telling me how much better she was getting, but seeing her with my own eyes and holding her in my own arms manifested God’s love and miracles to me all over again.