Joshua had to be admitted to the hospital because hospice could not manage him at home. I don't have time to write a full update right now, but here are the 2 status updates I put on Facebook:We're here, Joshua's port has been accessed & he's got IV fluids running as fast as they can get them in. His glucose was low (no surprise), but no other labs were ordered. I guess that's because he's on hospice, but I think I'm going to ask Dr. S to check things because I'd like to know if the lack of peeing is due to his kidneys shutting down (ie: he's going to die within days) or if it's due to dehydration/fentanyl increase. I'm emotionally wiped out & we just got here. Not the best way to begin an admission. This one should be very short, though. I haven't talked to Charley yet... haven't been able to reach him. Praying Joshua does not die today or tomorrow because I really don't want his last 24 hours on earth to have been these past 24 hours. It would be a horrible memory. I'm working on a blog post to explain what happened. Will link when I post it.
Labs showed Joshua's kidneys & liver are just fine. His glucose was lower than the finger stick showed, so he's getting a bolus of that in addition to saline. Hospice nurse came for a couple of hours, as did Dr. Sibley (who also brought flowers & a stuffed doggy for J). He's a modified code, meaning that if he goes into respiratory failure, he'll be put on a ventilator until Charley & the kids can get here, at which time we would do a 'peaceful extubation' & say goodbye. He is currently sleeping, satting at 94% with 3 liters/minute oxygen (blow-by). He hasn't thrown up since getting IV zofran.
Saturday, 23 July 2011
Friday, 22 July 2011
I have watched links "take off" on facebook but NEVER did I think one of those links would be about Joshua & my family. To be on the receiving end of so much prayer support & financially blessing right when my family needs it the most is mind-blowing. I keep trying to think of words as I type through these tears of thankfulness & I can't come up with *anything* that comes close to expressing what is in my heart.
To every single person who has posted about Joshua & my family, shared our caringbridge link, sent a donation to help us &/or offered words of kindness & sympathy & caring support, THANK YOU!!! God is amazing... there is no other way to put it... and I am utterly speechless at how so many people have joined forces to wrap my family in love as we do everything we can to prepare for the loss of our most-beloved Joshua.
Posted by Mommy to the A-Team at 17:04
Thursday, 21 July 2011
Kate's plea - posted on their Caringbridge blog on Wednesday, July 20, 2011:
This will be a tough post for me to write because it involves humbling myself, asking for help, and opening myself to potentially being insulted by people who misunderstand my motives. However, desperate times call for desperate measures, so here I go:
My family needs financial help. Charley needs to take a few weeks off work (via FMLA) & because we've had a very tough year already (114 days inpatient between Joshua & Bethany in the past 8 months), he has no sick leave or vacation time left, and we no longer have any financial reserves. This time off is not a "want"; it is most definitely a "need". For all of Joshua's life, Charley has worked a job that requires him to be gone 60+ hours per week, but provides excellent medical insurance. He has not gone to the hospital when Joshua has had surgeries because he has had to work. He's been a good provider for our family & has worked hard to ensure that Joshua is taken care of. Now, however, he is feeling completely overwhelmed with trying to simultaneously deal with working so many hours each week while coping with the knowledge that his son is dying. He is emotionally distraught. He has no down time to process any of this. He isn't able to be here when Joshua is awake to spend time with him. He & I have almost zero time together anymore & that is challenging our marriage at a time when we need each other the most.
This afternoon, I got home from taking Bethany & Hannah to the orthotist to get casted for their AFOs & David to the orthodontist to get his retainer (he got his braces off on Monday) right before Charley left for work. He asked if I would come talk to him for a minute while he got ready and when I sat down, he fell apart, telling me that he just can't do this anymore. "This" being working while dealing with Joshua's decline. He knows he can't quit & he wouldn't do that, but he is standing on the edge of a gaping hole & trying desperately to avoid falling in. I completely understand how he's feeling ~ there are days when I feel like I can't handle anything and all I have to do is take care of the kids, not leave home to go to a job for 12 hours & pretend that everything is fine! I understand that my husband feels he's missed out on so much of Joshua's life & he wants the chance to spend some time with his little boy before Joshua dies. But without his income, we couldn't make it, and without a way to cover his income, he can't take a leave of absence from work. He needs time off to regain his mental balance & to make some memories with Joshua before it's too late.
Many people have said to let them know if there is anything they can do to help. Now I have an answer for that offer. If you want to help in a tangible way during this very difficult time, please make a donation to my paypal account (firstname.lastname@example.org ~ if you click the "gift" tab, paypal won't take out any fees OR Use the ChipIn up on the right) to help us raise money so that Charley can take a short leave of absence from his job.
Through Joshua's 25 surgeries & hospitalizations & everything else he's gone through, I've never asked for help. I have never wanted anyone to accuse me of profiting from my child's medical condition and I don't want to be accused of that now. If the situation were not desperate, I would not be writing this post. It is, though, so I am. If you want to help, please send a gift through paypal. I will be grateful beyond anything I can put into words if you do.
Posted by Julia at 12:31