Monday, March 02, 2009

Home alone

It hit us both at about 10:00 last night. Crap. This is all on us now. We've got no nurses checking him through the night, making sure he's safe & sound. Just us. Why did we push to get him home? GULP. Sleep was a bit fractured because our uneasiness at realizing that this isn't just diabetic care anymore, but a much deeper awareness of his frailty and needs.

The hospital sent us home with IV drip bags of the antibiotic and vials so that the local hospital could make more in case they didn't have any in stock. Keith took Jake at 10:00 last night to the St. Stephen hospital emerg and they hooked up his PICC line to a drip for 45 minutes. They went again early this morning - even before I awoke. What a guy.

I have spent the whole morning on phone trying to organize all of the care he'll need and touch bases with doctors and nurses. In speaking with his doctor this a.m. we found out that he's got 2 full weeks more of the antibiotic necessary, and not just 3 days... dang. That changed a lot. Instead of the 3 visits to hospital for the IV's they have set up an antibiotic pump that he'll carry with him in a pack. This will let him do school next week. Poor guy. Like diabetes isn't enough? I am so grateful though for the system in place that will allow him to continue on the meds without having to stay in hospital for that extended time.

The med isn't covered by our insurance and is sky high expensive. We found out that the extra-mural nurse program will be billed instead of us. This is such a gift. 2 weeks of dosing would have crushed our family financially. Social medicine at its finest. Jake's hospital stay, the surgeries & procedures and amazing medical care, even insured in the US would strap a family so deeply that it would take years to climb out of that kind of expense. Generosity and grace at it's most practical level. We are so very grateful.

So while we're "alone" in the 4-of-us sense, we are truly not alone. We are surrounded by friends and a community that is nurturing and supportive. Such a blessing. I read this quote this morning:

"A single arrow is easily broken, but not ten arrows in a bundle"

Japanese Proverb

This past month I have felt the support of our bundle - it has kept us going and in our fragile state from breaking. Thank you.

8 comments:

ragamuffin diva said...

Praying for all of you, sis.

storypeople said...

Those Japanese proverb inventors did good with that one, didn't they? I like knowing that it really IS all good. You take care of Jake's frailty and needs and your arrow bundle will take care of yours.

love and peace and endurance (I only added the endurance, because being an advocate can be prettttty darned tiring).

Danielle said...

Still praying for you all, Heidi! It's such a double-edged sword to be able to have Jake home at last, but to have to make sure that he still has everything he needs & I'm sure it wears the whole family thin. So I'm still praying...for his progress to continue, his health to keep improving, & for the family to find strength & peace amidst all the uncertainty & fragility. Love you all! ( :

Heidi Renee said...

Thank you all - we feel it. and yes, the endurance is needed - esp. tonight as he has his PICC line cleaned and changed - the gauze and adhesive got stuck and it took nearly an hour to get it undone. he's so brave. (way braver than mom was tonight!)

Stacy said...

Wow Heidi, I just came across your blog and want you to know I'm going to be praying blessings on you and your family.

I can remember when our twin boys were delivered almost 3 months premature, and after 11 weeks in the NICU, they came home and it was all on us. Nothing can prepare you for that feeling. It was certainly not our last time in the hospital with them, but everything did finally improved and we go to the other side of it.

I will definitely be praying that the other side of this will come for you soon

Awa said...

It is the first time I am leaving a comment on your blog.
I read your story and it touches me because it is so real. I know I don't have the words to express what I feel but I read the hope in your post, in spite of the tiredness and the worry.
That is real faith. Thank you for sharing and I'll be praying too.

Heidi Renee said...

Stacy & Awa - waking up to your comments this morning made my day. Thank you both so much for your encouragement. Hearing hope in my words means the world to me.

Jenell Williams Paris said...

I'm praying for you. I hope home can be a good, restful, healing place for you all to be, despite the medical care you have to manage. What a gift this blog will be for Jake to read someday.