Written 7 hours ago
Your services are required. :)
We were able to get a room downstairs at the Ronald McDonald (in house) House, and I insisted that Elizabeth go down there and sleep. For the first time a week, or however long we've been here, she did. She set her alarm for 2:30a and came up for us to switch, and I told her I was feeling good, loving the time with J-Dogg, and to go back and sleep. She did. He dozed off around 5a and when she came in the room this morning around 7:30a, I was snoring like 350 lb. WWF wrestler after a night of hard partying. I have never gone w/o sleep like this. I'm seeing life in a WHOLE new way. LOL.
OK, here's the latest, we need your prayers. We have noticed that all the times Joey stops breathing, are after and closely associated with sneezes, coughing, and yawns. Unless you are his parent, and sitting next to him and studying him like we do, you would just think he's "failing" the CPAP tests they do. Although, he's done pretty well overall. The neurology team was so positive yesterday and cannot believe his improvement, and began, like we were, thinking outside the box asking us if he sometimes has apnea at home. Does he breathe unusually deep, etc. We thought about it as objectively as we could, and have indeed seen him do that thing, where they take a huge breath and kind of shake upon "awakening" or realizing they need to breathe or whatever. He loves to take naps on the floor in front of the TV. So we help him lay down there, and we'll be watching TV over him, and HAVE seen him do that. We just thought it was him, and we are pretty sure he did that before all of this started. SO, they are willing to try extubating him based on our obvservations and his history. This would explain why he can breathe solid and textbook pattern, for like 4 hours, then they drain his tube (after coughing) and he holds his breath beyond the 45 seconds. Not to mention, his system has gotten used to the vent breathing for him, and evidently the body will sort of atrophy and grow to depend on the ventilator, get lazy kind of thing. SO, after our big meeting at 2p (all the medical teams are meeting with us to have round table discussion about our options and his "long term options and prognosis") they would like to try to pull the tube out. Another big factor in this decision is how incredibly unhappy he his. His is depressed. We have been playing worship music in the background, I've been looking at him non-stop so he knows he's not alone, Phineas and Ferb, talking about spending rediculous amount of money on Legos. Anything to get him to think about the great future God has for him, and that this is temporary and that we are going home soon, w/o a vent (saying all this in FAITH). I have never lied to my son and have taken some heat for this, you know little white lies you tell kids, etc. God shoots straight with us, we should do the same to our kids. My theory on this is that, if they learn they can't trust us, they grow up feeling like they can't trust what God said. Anyway, my point, when I tell him something, he knows I mean it. I keep looking him in the eye, telling him those things. We both believe it. All three of us, believe it.
So, we need TEAM JOEY to pray like never before. This is the biggest test of his life. He is so unhappy with tubes coming out of everywhere and for his own safety, when we're not around, they literally tie his hands down. He's so compliant. All last night he'd try to reach for something around his head, I'd freak out and grab his hand, and he'd ever so carefully try to not touch what I said, and gently itch his ear or cheek or whatever. He started to itch his port and I wigged, and he immediately stopped. He has always been so compliant and wanting to please us. He is such a good boy. So good.
Results of MRI probably before or at 2p meeting. This is a big day. BIG. We have so many people to thank. People that are working overtime so I can be here, the meals that have been coming in. Mitzi and Cari, that was amazing. We will formally thank all of them after today. Today has to go well. I believe he'll perk up, w/o the tubes in, the coughing and sneezing will stop. And this will really start a cascade of good things to come for him.
Pray like your life depended on it. His does. Believe. See him breathing. See him sitting up in his bed talking and putting Legos together. Have confidence it will happen (Heb.11) If all we ever do is walk around accepting whatever comes our way and believing what our eyes see, and not what COULD be, well, that doesn't take any faith at all. And there's no way that can be God's plan for us. Just exist in the world. Accept it as it. Bad stuff happens, just the way it is. Another statistic. Another victim, fallen to cancer. Not this time. Please help me. I can see a day where we have a huge reception or open house or whatever, and he is healthy and thanking all of you. Hugs and conversations, maybe when he's older, thanking every one of you who took an hour to pray, sent a note, brought a meal, or told someone that you know is a "prayer warrior" that could make a difference. Who believed we don't just have to take life as it hits us, get kicked around, or accept evil in the world. But he knows how many people are praying. And after all of this, I know he'll want to thank anyone that had a hand in his recovery. I hope this doesn't sound preachy or like I got it all figured out and am trying to convince you of something. Exactly the opposite actually. I am trying to "encourage myself in the Lord" and get psyched up for a big day. He's counting on me. Thanks for helping us. We sure need it. :) Also, hope this was somewhat coherent and clear (mud?). So tired.
Written 5 hours ago
He did it. Was so brave. Our RT said shes been intubated 4 or 5 times and being extubated is horrible. So proud of him and thankful to God and TEAM JOEY! More info coming. We're a mess. So happy. So many ppl to thank for getting us through. He has a lot of healing to do, don't stop praying. A lot of things they are concerned about as far as seizures, brain function, and as always, fighting this cancer. Milestone. He is so relieved to get that tube and harness off. There is some concern about brain damage after seizure. And he has to sustain respiration. So far so good. :)
Care group team meetings
Written 3 hours ago
Just talked to the attending regarding care group teams meeting. They seemed really surprised. He said well, the meeting was to discuss all other outcomes except this. "This is a best case scenario." They (head attending) called off the meeting provided we understood Joey's long term prognosis. I smiled and said Dr. Shih has been very forthcoming and direct about his opinion of Joey's long term odds. We got it. Dr. Shih has actually been our biggest advocate through all this explaining to PICU team that he evaluate him in hem/onc (after seizure) that it was unlikely the cancer was causing this, and that being closest to Joey and dealing kids w/medullo that have seizures, everybody needed to calm down; my words and impression. We really appreciate Dr. Shih's professionalism and tact and willingness to speak up to the other specialist teams. Neurology was terrific as well. Dr. Harris had the thought too, outside the box, that maybe Joey's specific breathing physiology and habits fall outside of the programmed parameters of the ventilator. Amazing piece if technology (vent) but it was saying Joey flat out can't breath on his own. An analysis of Joey right now, relaxed in his bed, rolling at a 20-30 breaths per minute, O2 at 100%, normal heart rate, would certainly seem to contradict that. We understand their perspective. We do. They have to speak to what they observe and what history and statistics suggest are predictors of outcomes. I'm just really glad God gets the final say.
Again thank you all for your prayers. We are so grateful we will be taking Joey home soon. Maybe Sat. Depends on how he does tonight breathing as far as getting his feeding tube going again. In the event they would need to intubate him again, he can't have anything in his system. So maybe tonight or morning start feeding then maybe take home sat or Sunday.
We'll let you know if there are any developments.