((((((HUGS TO ALL))))))
HE'S COMING HOME TOMORROW!!!
I waited all day for the ID doc to show up to give the orders for the Zosyn at home, so we could get the paperwork in process. He didn't show. But he did call tonight about 9:30 to let me know that he's writing up the orders for Jon's discharge tomorrow.
The feeding pump and formula are already in place for delivery tomorrow. In the morning, the IV pump will be ordered along with the Zosyn, and all of that should arrive at our house in the morning. Jon's home health nurse will be here about 1:00 or 2:00, so that's our goal.
I also talked to his HH nurse tonight, and she assured me that everything will be just fine, and we won't have any problems with the IV. She will train us. Jon will need to finish the course of Zosyn, which means he has 6 days left at home on it. Please pray with us that Jon will not pull out his PICC line!
Jon slept today for 12 HOURS! At 3 a.m., Jim asked the nurse to give him Ativan, and within 45 minutes, Jon was asleep. He woke at 3:45 this afternoon. During the entire 12 hours, his vitals were excellent. He needed that blood transfusion, obviously.
I met with the nutritionist this morning, and she provided me with a complete breakdown of his food and water requirements, so we know exactly how much to give Jon. No over or under hydrating.
I also met with the neuro, who suggested an increase in one of Jon's seizure meds (Depakote), with which I agree. He told me that he had asked the ICU pharmacist about the nasal Versed as a rescue drug for Jon's seizure, but the pharmacist wasn't sure whether that drug would be available to the public. It may just be a drug that only paramedics can use. That's absurd, if that is the case. Because that drug saved Jon's life, and we waited a long time for the paramedics to arrive, get in the house, assess Jon and give him the Versed. He was seizing and dying that whole time. If we had Versed here, that wouldn't have happened.
Jon's pulmo doc suggested another change in Jon's trache this morning to Jim. Unfortunately, the doc left for the day, so we have to re-address this in the morning. Jon's current trache is the same one he had for 14 months, without any problems. If we change to a cuffed trache, it can't be plugged, which means Jon won't be able to speak. That is unacceptable and contrary to Jon's quality of life. I don't know why the doc can't make up his mind. The only time Jon has been on oxygen at home is last Monday during his seizure. I'm hoping we can both get on the same page tomorrow.
We are just thrilled that Jon is coming home, while at the same time a tad bit nervous about learning the IV. We feel fairly comfortable with the pump feeding, as Michael was on the pump.
Jim will stay at the hospital with Jon in the morning, so that I can do some much needed housekeeping, and get Jon's room all set up for the new equipment.
I hope that I have a moment tomorrow to go to the Towers ICU to tell Roslyn that I'm leaving with Jon and give her another hug.
Thank you all so much for your love, prayers, and support during this crisis. I know that God hears our prayers, and that He intercedes on Jon's behalf.
I am so grateful to be bringing our boy home.
We Love You!
God Bless You!
Love & Light,