IVIG Infusion Archives - Page 171 of 181

I was completely overwhelmed

I'm was feeling a bit overwhelmed this afternoon. When Lizze left with her Mom on Friday afternoon, my grandpa was still in the hospital but doing much better. The boys were doing great-ish and we were looking forward to our guy time. Unfortunately, things didn't go as planned. The boys and I had a blast watching Flight of the Navigator. All was well until bedtime when Emmett's occasional cough got worse and he couldn't sleep. It was a long-ass night. Emmett woke up coughing, hacking and running a fever. We made it through the night but didn't get much sleep. I was exhausted and not in a place to cope with much more. That's right about the time Gavin began having problems. He was having really bad reflux, which isn't…

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June 9, 2018

Emmett John / My thoughts

Poor Emmett is not doing well

It was a long night and I'm exhausted. Emmett is definitely sick and he's getting worse as time goes on. It began as an infrequent cough but now it's a fever and a cough. The cough is constant and dry. I don't think it's necessary to get him to the doctor as this is probably a cold but I'll be keeping a close eye on him.

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June 9, 2018

Guy Time / My thoughts

I had the coolest experience with my kids tonight

I mentioned previously that it's a guys weekend because Lizze is out of town with her Mom. It's weird without her here but it's healthy for everyone to get a break from everyone at times. The boys and I ran a few errands before heading to the park. Unfortunately, between Emmett not feeling well and an outdoor wedding, our plans reverted to getting ice cream before heading back home. Here's the really cool part. We were trying to decide on a movie to watch together and I insisted it be something they've not seen before. I wanted them to try something different and maybe learn something new. As we were trying to decide and going through trailer after trailer, something popped into my head. Out of nowhere, Flight of the…

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June 9, 2018

Guy Time / My thoughts

It’s going to be a guys weekend

Gavin's infusion finally finished, which is a good thing but the process has completely wiped him out. Currently, he's sleeping but I'm hoping he'll be up shortly. The boys and I are having a guys weekend because Lizze is on an out of town trip with her Mom. Everyone wants to go to the park and I'm totally game. With all the unexpected expenses over the last 30 days, I simply can't afford anything like going to a movie or taking them out to dinner. That's okay though because we're going to have fun regardless. I know the boys want to go Pokémon hunting and perhaps I'll let them do that while we go on a two mile walk. I'm super excited to have guy time with the boys. The…

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June 8, 2018

Gavin / IVIG Infusion / My thoughts

Gavin’s IVIG infusion is NOT going well today

Gavin's been undergoing his IVIG infusion for over five hours now and it's still not done. This is not a good thing because he's getting extremely anxious and understandably so. This usually comes down to needle placement and because there's only so many locations in his belly to place both needles and because there have been roughly 5,826 total needle sticks into his belly thus far, scar tissue is a problem. I suspect scar tissue is the leading cause of today's complications. As a result, what should take roughly an hour is dragging out into almost six hours. There's nothing we can do but let it run its course. The IVIG Infusions are absolutely crucial to Gavin's survival. We can't just write it off because it's taking too long. Hopefully,…

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June 8, 2018

My thoughts

I’m grateful for a decent night’s sleep

I slept really well last night. I feel like I'm in a much better place than I was when I went to bed. I'm still overwhelmed by everything going on and no amount of sleep is going to fix that. Acknowledging the reality of where I'm at isn't mean to be taken as a negative thing. I try very hard to live in reality, meaning when things are bad, I recognize that things are bad and don't try to spin things. For me personally, dealing with the reality of something, whether it be a positive or negative reality, helps me to maintain balance and perspective. I'm grateful for a decent night's sleep because I don't always get those and know many others out there don't either. I'm also grateful to…

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June 8, 2018

My thoughts

I’m giving up on today and hoping for better tomorrow

I feel like I'm completely drowning tonight. Nothing is going right and I'm absolutely crumbling under the pressure. I try very hard to remain positive and not give into dispair but dispair has won out tonight. I have nothing left and I give up. Hopefully, a decent night's sleep will help me find a better place by morning. Too many people are counting on me and letting them down is simply not an option. I have to figure things out and do better.

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June 7, 2018

Gavin / My thoughts

It’s getting harder not to worry

I'm not sure what's going on with Gavin lately but he's sleeping a lot more during the day. Our initial thought is that it's medication related because the Clozapine can make him sleepy. What's sorta countering that theory is that Gavin was on 800mg per day for years and years. He was never really sleepy like this, even on that high of a dose. About a year or so ago, his dose was cut in half and he now takes 200mg in the morning and 200mg at night. There was no appreciable difference in sedation when the dose was lowered. Out of nowhere however, he's now having to take two naps a day. It seems odd that this now a problem when nothing has changed in well over a year.…

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June 7, 2018