7/31/2008

Hospice - Don't Panic

I'm sure those of you who frequent Mashed Potatoes are wondering what the story is with hospice visiting Max. Well don't panic. The staff at the oncolgy clinic thought Max benefit emotionally from a break to all his trips to clinic. Currently he's going to clinic twice per week for blood labs, transfusions, doctor checks. His counts are always questionable so he also needs to wait around to see if a transfusion is neccessary. This alone can equate to 3-4 hours. Add to that a transfusion and he's there all day.

It's been 3-1/2+ years that Max has been going there and he's simply sick of it. We used to play games, read books, draw, watch movies, go to the school room or playroom. No more. He just sits on the bed and watches super mindless TV.

The goal is for the hospice nurse to draw Max's labs here at home and delivery them to clinic. If Max needs anything, clinic will call me and let me know when to bring him down. Could it really be that simple? I hope so! I think we're all looking forward to more time at home.

10 comments:

debsphotographs said...

i'm sorry...i didn't mean to panic anyone. i tried to be somewhat descriptive in my mashed potatoes note but it seems that maybe not enough. sorry about that. also, left you a VM about shooting today.
hugs,
deb

Anonymous said...

Love the gameplan and I'm with Max - little boys should never have to go to the hospital. Especially if I can get cake at home.
Neil

Will's Dad said...

I didn't realize how incredibly lucky we were (HA!) that our local VNA comes out to our house to draw Will's labs. It saves countless hours, countless trips, and certainly helps lessen the fighting and anxiety that come with hospital trips. It has been a remarkable thing for us and I hope that it goes just as well for Max. I just assumed this was standard procedure everywhere but was saddened (and selfishlly happy) to discover it is exceedingly rare. We'll never mover out of their coverage zone south of Boston.

Cari (DeJong) Nelson said...

I'm glad that you posted this message. When I originally read the post that mentioned hospice my tears instantly started flowing, even though I could tell by the way that Deb was writing about it that it wasn't as serious as it sounded. I just wasn't prepared to come across that word, and I guess it caught me (and apparently others as well) a little off guard.

It is great to hear how much of a help (and massive timesaver) hospice will be for Max and for your family. Three cheers for all of the bonus time the Mikulak family will be having together - chocolate cake all around! ;-D

Jen said...

yeah for max not having to visit clinic so often!

Anonymous said...

So happy to hear that hospice is going to lend a helping hand. Yea !! for Max, less clinic time and more family time. You can't beat that.

JT

Anonymous said...

Just wanted to tell you thank your for stopping by our site. I have read everything on the loniest hour page when we where first diagonsised. It helped. I haven't tackled the other one you sent me YET!! I am glad Max has to goto the doctor less now. That helps. We have a nurse that comes by and helps us out with a few things to. Well have a great weekend. Thanks for your thoughts and help. God Bless,
DeAnna, Adriana and Family
www.caringbridge.com/visit/adrianagunty

Brunskow said...

Ahhh - the home lab draw - yes, this will be much nicer. I often joked that the clinic decreased the "quality of life". I'm glad that you should have some extra hours each week with doing the home lab draws. I love all the photos you post - Max is such a beautiful child. Our prayers are with you all.

Paul and Nina Brunskow

Anonymous said...

"enjoy" your home time....yay! (and thanks for the clarification!)
smiles....Ms. Weitz

Angela said...

Hello...Im one of DebS contacts on flickr and saw her picture this morning of your sweet boy and fallowed here. Not that it really matters but Im in tears thinking of all the strength you must have as a mother and a family to go throught this the way you are! I will be praying for each of you on this long road!!!

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