Monday, August 28, 2006

Another "brilliant" move . . .


by the decision-makers. Jack's Vancomycin ("vanc") levels are too high based on blood work they drew yesterday. Because of this, the "decision-makers" decide to change the times Jack gets vanc from every 12 hours to every 18. Sounds good in theory, but the reality is that Jack will need infusions of vanc (which take over an hour) in the middle of the night at times. Funny thing is, we NEED to sleep sometime!! Mark and I are both running on empty and now they want us to get up in the middle of the night for several hours to give him his vanc (which he probably doesn't even need, but that's another story). Fact is, they could have just reduced the volume of vanc and solved the problem that way. So, tomorrow I will plead my case to the ID docs in St. Louis (who are the decision-makers) and suggest that they take into account that Mark and I both work full-time, have three other children plus Jack to care for and we don't have night nursing ... so could they please get out their little calculators and figure out a new dosage and keep it at every 12 hours. Wish me luck - I'm not optimistic that they will accommodate my request, but, it can't hurt to ask.

At the request of one of our supporters, I've included a picture of Jack and his sibs from yesterday. Jack is so happy to be back home surrounded by all that is familiar to him. He is still a bit apprehensive, not sure if this is really "it" and he is home to stay. I'm sure it will take him awhile to trust us again.

Time to take apart Jack's bed ... we are getting a hospital bed delivered tomorrow, which will make life much easier on all of us, especially Jack.

Good night to all ...

7 comments:

kathy hawley said...

Thanks for the picture. They are alll so beautiful. Hang in there, any day now things will be back to "normal".
Love,
Kathy

Anonymous said...

Jack and his sibs appear very happy that he is home! I hope you can get the vanc routine you are suggesting. I hope the "Red Man Syndrome" has slowed for him. That's so miserable on top of everything else he's had to endure.

Blessings,

Dawna

Kerry said...

Yay! There's no place like home...there's no place like home....

We love pictures Ann! Keep them comin'.

Much love from rainy, dreary New Jersey,

Kerry

Kristy & Nathan said...

I'm so glad he is home safely! He looks happy as a clam to be home with his brother and sisters! WHat a relief. I hope things go well for the 6 months of movement restriction...Go Jack!

Anonymous said...

Ann -

Beautiful photos - he does seem happy to be home.

A hospital bed does help, but I hope your state allows more than manual cranks. They say "hospital bed" but mean a bed that bends - not the nice ones in the hospital. DOn't be too disappointed :)

When Will had a broviac we did IV antibiotics daily too. We were able to get a schedule that works. Every 18 hours only means every-other-night. If Jack gets red-man's (like Will does), running faster is not a good idea. I hope you find a solution.

I hope I'm not too negative. I am so glad for Jack that he is home and comfortable. We went on vaca last week and when we came home Will has just smiling and so happy to be in his environment. That was just a week, so I can imagine how Jack must be feeling after being away for a month.

- betty (from trach boards)

Anonymous said...

I'm so glad to see him home. I hope you've gotten the vanc routine you wanted and that you've gotten some sleep.
give jack a kissy for us

Love,
Luke & Sarah

Cindy said...

Super picture of the kids:-)