High Maintenance

Keeping Dru "maintained" takes a lot of work. 

And a lot of people!!

Here is a rundown of our past week:

Thursday--Dru's belly is getting bigger by the day. She is accumulating fluid fairly quickly after her last tap, so I've been on the phone with the liver clinic, pharmacy and home health nurse to make a plan. Dr. Jensen wants us to receive albumin and lasix through her picc at home, to see if she gets some relief

Friday-- IHC pharmacy delivers Dru's TPN for the week. Another driver brings her albumen and lasix. Home health nurse is here for 2 hours to administer the IV. Then has to come back 2 hours later to reprogram the pumps for the new TPN formula

Saturday and Sunday--family days. Busy, but no nurses or calls from the hospital. 

Monday--our regularly scheduled clinic visit. Labs first

Then a visit with dr. Jensen. Where she throws up on me and herself. 

We talk about her belly and how big it is and decide to try the albumin/lasix combo one more time and switch up some of her diuretics. Our doctor was happy to see that the TPN is doing it's job and she is getting some fat stores back. We decide to cut back on the rate of pregestimil in her NG tube to keep her from throwing up so much-she threw up 3 more times today :(

Tuesday--occupational therapist comes to work with Dru on her sitting/playing, and her oral aversion.  no nurse visits, just phone calls to set up for tomorrow. Pharmacy delivers her  albumen and lasix. 

Wednesday--nurse comes to the house at noon to run her IV for 2 hours again. Dru slept the entire time. 

Thursday (today)-- took Dru to UVRMC for a blood draw to check her renal panel. We have to wait about 45 minutes for a nurse to come and draw from her picc line.

 Waiting is better than a poke and hearing Dru cry. 

Hurry home to receive delivery of another weeks worth of TPN, which is another new mix, so our nurse came back to reprogram the pumps again :)

Now waiting on the liver clinic to call back with lab results and let me know of the albumin/lasix is doing it's job or if we are scheduled for another belly tap tomorrow. 

All in all, Dru has been in such a great mood this week and I can't complain about being bored.  We do our best to keep up with baseball, football and school too. Needless to say, my house is neglected and freezer meals are my friend.