Where do I begin.... Yesterday Justin slept almost the entire day. I am not sure if it was the meds, or his body had finally had enough or what. He was more lethargic, couldn't even chew food and we quickly found out that even swallowing was a very challenging task. He woke up at one point towards the late afternoon to go to the bathroom and asked for a drink of water. I brought him his water bottle. He took a sip and then sounds that no parent ever wants to hear came out of him. My son was literally drowning from a sip of water. He was trying to breathe and these gurgling sounds came from his little body as it slightly thrashed, fighting to breathe. FINALLY he caught his breath. He cried and coughed and coughed some more, but his cough was so weak, he couldn't clear the water out. He was still so tired and so weak. He just wanted to go to bed. We put him to bed at around 7pm.
Now, we haven't slept more than 4 hours in a row since his surgery. At midnight I woke up. Nothing! Not a peep. He was still asleep. I laid in bed praying for him, then I went downstairs, knelt beside his bed and prayed some more. I came back upstairs but couldn't sleep, so I went back downstairs to sit in his room and prayed some more. At about 1:30am I decided to come back upstairs. A little scared but trying to trust my big God. I fell asleep around 2:30 or so and about 3:30 JT woke up. I was a little happy he woke up. I went downstairs, gave him his next dose of medicine and he asked to go to the bathroom. I woke Jake up, we took him to the bathroom and back to bed he went. He was crying a little, still trying to cough out the water, still too weak to get it out. He wanted to wake for the day, I said next time he wakes up it could be for the day. He slept until almost 7:30am. (His normal post surgery wake up time has been between 4 and 4:30am) The sleep was a gift to him and a gift to both Jake and I. We were running on empty.
Today was a better day. I spent time in the morning encouraging him to take deep breathes which caused him to cough more. (parenting tip - when your kid swallows water at the pool, have them take deep breathes in, if they cough, they have water they need to get out, if they don't cough, they are fine!) Anyway, he did a great job trying to breath and coughing. He spoke today too. Audible words and coherent sentences. He even did an hour of school. This afternoon we went for a family walk, the warm TX air and the sunshine felt AMAZING! It wasn't a long walk, but it was perfect.
Tonight we are deciding what to do next. He still can't seem to drink water without choking on it. The medications are so heavy in the muscle relaxing area it's just hard for him to coordinate it all. We might go back on a thickener, he used it when he was little. It will be temporary, but at least we should be able to get fluids in him without him choking on them. We don't believe he is ready to pull back on the meds just yet. Last time we did was a disaster and we just want his little body to heal. So, prayers for wisdom in this area are greatly appreciated.
Please also pray for his nerve pain. The muscle spasms we anticipated aren't nearly as bad as the nerve pain we were not prepared for. He is really struggling with that. So much so, I had to call the doctor to ask for a refill of the prescription.
Thank you for walking this walk with us, thank you for joining us in prayer, for your support and love and encouragement.
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