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From: Anthony Tang We just met with Jack's nurse. After consultation with the Co-Director of Pediatric Hospice (our own Doctor is out of town), they both agree that Jack is in a comatose state. As I had explained/warned in our 8/13/08 and 8/14/08 blogs, his heart rate has risen to 180. His breathing has become irregular. Jack is also showing the preliminary signs of mottling. No purpling yet, but there are reddening areas. Having said all of this, I should add that--outside of a few difficult areas like Tuesday--Jack's been progressing through this Valley with an amazing amount of composure and peace. He's really calm and taking things one day at a time with grace. He clearly let us know when he didn't want any more food and was also quite clear when he didn't want any more water. He's been calling the shots and we've just been doing our best to listen and be responsive. Our nurse even told us that most families she's worked with (who've gone through similar, unavoidable circumstances) wish that theirs could've been as calm and smooth as Jack's has been. I'm just thankful that he's not in pain.
From: Katherine Tang How does one go about telling their child it's okay for him to let go? That he doesn't need to hold on for us? That we will love him forever and never forget him? Is there any conversation that is more difficult to have with their child?
From: Anthony Tang Sleep is a luxury we don't enjoy very often. Earlier this month, Jack developed a habit of waking up at 3am every morning forcing Katherine and I to tag team his care so that at least one of us had a little sanity the following day. On the hardest days, one of us would be up with Jack and the other would be lying in bed awake and sleepless. It's not that we didn't want to sleep; we did. However, sometimes the worries, the stress, the fears, the anxiety, the nightmares, and the grief would haunt us into limbo state of being neither awake nor asleep. We'd laugh about how waking up at 5am felt like we got to sleep in for the day. A couple weeks ago, Jack seemed particularly cuddly and wanted to fall asleep in our arms. If we put him to bed too early, he'd call for us to pick him back up until he could sleep. A few times, we think this was why he woke up at 3am... just so that we would hold him and help him rest. To be honest: we didn't mind too much. But, last week he changed again and seemed to have a hard time falling asleep with us, so we started putting him into bed and turning down the lights and checking in on him until he closed his eyes and relaxed. Tuesday night, he didn't fall asleep with us and it seemed to take an unusually long time for him to fall asleep in bed. Last night (Wed. night) was even worse. I mentioned below (in yesterday's blog) that Jack's eyes have glazed over from the seizure activity and that he just stares straight ahead. Well, I assumed that he'd fall asleep after we put him to bed. He didn't. He just kept his eyes wide open, staring. I got him back out of bed and gave him his Clonazepam medication, hoping it would help to relax him and let him close his eyes, rest, and sleep. It didn't. I thought that maybe the medication would work better if he was also in bed with the lights off. It didn't. I was so tired with my eyes crossing and my head bobbing that I just couldn't stay awake. I would go to bed and wake up in a little while to see how he was doing. I did, but when I woke up, Jack's eyes were still open. I didn't know what to do as I had exhausted all of my tools. I don't think, through the entire night, that Jack ever closed his eyes more than just a half blink. What could we do? We talked to his nurse today and asked her the hardest question for us yet: "Do you think Jack's entered into a... comatose state?" It seems that his poor little brain has had enough. We put gel drops in his eyes to keep them moist. Today, he kept his mouth shut pretty tight, but we were still able to get in six drops of water to wet his mouth. We hold him. We kiss him. We love him.
From: Anthony Tang Hey everyone. Please forgive me for taking an entire week to post Katherine's notes below. You will want to read it before reading this one. Anyway, as a continuation to Jack's teething story: both of his front top two teeth popped out indeed. Then, the gums actually covered them up again for two days until they popped back out. Now, the tips are fully exposed (like his bottom two). Because of his disease, we think that this is as far as they'll get (never dropping fully down), but we're still very happy that he got them. That's about it of his good news. Last Thursday or Friday, Jack kind of glazed over (due to increased seizure activity) and spends the vast majority of his days like that now. He has very little interaction with us. He doesn't cry much. From about 6 or 7am, he'll wake up and stare straight ahead (blinking quite rarely) until he falls asleep around 10 or 11pm in bed. Still fearing that he might choke on any water that we give him, we've just been giving him one or two drops of water at a time just to keep his mouth moist. Yesterday was horrible. Between 6am and 2:30pm, we had given him a 1/2 teaspoon of water (yes, one drop at a time), but at 2:30pm, he threw it all up. Then, over the next three hours, he threw up a total of eight times. I don't know where it all came from. Jack's hospice nurse thinks that his stomach is now rejecting the solution that carries his morphine medication. She wants us to watch him closely to see what happens to him the next time we give it. However, we're obviously only going to give it to him if he needs it. Thankfully, he kept down last night's and this morning's Clonazepam medication. I think that the most difficult news for me from this last week is that Jack's at the preliminary stages of forming bed sores... just like my dad had before he died. Because he has no more fat or muscle left to cushion his bones and because his skin is so thin and dry, bed sores are now a serious worry. Thankfully, his nurse caught the early warning signs. She put a medicated patch on his tail bone and we now cover his spine, shoulder blades and elbows with a vitamin A & D gel every night to moisten and strengthen his skin. (If only it smelled a little better...) Every time I hold Jack I remind him of how much we love him, of how proud we are of him, and how amazingly brave he is. I tell him that we will be with him every day of his life and that when it's time for him to leave that Jesus will be with him, so there won't be anything to fear or worry about. I tell him that his mommy and I will be okay too, that we'll miss him, but we know he'll have new adventures and experiences to live and we know that God has something else planned for us here before we can join him. He's not able to respond or to acknowledge me, but I know that he gets it. He knows I love him and I know he loves me.
From: Katherine Tang It's amazing that at a time like this, when, as my husband has said, it's like we're in Holy Week, but we don't know what day it is; when we're waiting with bated breath to see just how long Jack will be with us; that we are brought back to the subject of teething. Last night we found it amazing when for three hours, Jack was moving his tongue in and out as to tell us he was thirsty! So, like any parent desperate to quench their child's thirst, we gave him water. This is not unusual for him. He'll go through periods where he doesn't want anything to drink for days, then all of a sudden he'll have a day where he wants to drink nonstop until he falls asleep. Fast forward to this morning. His top two front teeth broke through! That whole time last night I assumed he was thirsty, and he was working his teeth out!! Luckily, he hasn't expressed any pain with the new teeth, so we hope they'll just continue to grow in. Happy Wednesday! Nice to have some good news for a change :) |
