He's home tomorrow...

im not even sure where to start with this posting..i feel like im always complaining on this thing - it probably doesnt uplift anyone!!?? well here it goes for today..
i left the house about 9am and headed off to the hospital..the caregiver was there viola ..sweet lady..also both of jons parents, scott, katie and seth were there as well...we did a LOT of training today - everyone felt good and positive about what they learned..
jon went and got his bladder scan done..they said he's not "leaking anything" so alrighty then - guess thats good..
after all the training..we decided to clear out jons room and get it all loaded up into the trunk of my car- which is now totally full but im WAY too tired to get it all out..so tonite it sits! after that jons family left..
i was CRAZY busy today - between constant phone calls..things going on at home..getting supplies, equipment, prescriptions, drugs...etc..its endless..getting all that ready so he could be discharged..the hospital sends you home with NOTHING- NO drugs of ANY KIND..its up to YOU to get the doctor to write the prescriptions then get the nurse to fax it over to walgreens..then up to YOu to drive over there pay and pick them up...i got to the walgreens here..i had the prescription for the REALLY heavy drugs..which they said "they didnt have any and would call another 24 hour walgreens"..so they did..they had some..but i was WAY TOO tired to drive CLEAR back to another part of town to get them..thats all i needed to have happen..fall asleep with some SERIOUS heavy narcotics in the car WHICH ARENT EVEN MINE!!! that would go over well with the police im SURE!!! so im just PRAYING nobody comes in needing those same 2 things i need to get tomorrow for jon..
we are still totally frustrated with jons pain thing..he's still been at a 8.5+ pretty much all day..they've REALLY lowered the nuerontin almost completely and up'd his lyrica alot...which sadly has done NOTHING for him..we keep waiting to see if the lyrica will do anything..but looks like its not doing anything..THEN on TOP of that we find out our insurance wont even PAY for the Lyrica anyway!! SO FRUSTRATING!!! i asked how much at walgreens it would cost..250 dollars!!! and the insurance ALSO will not pay for lovenox..which is a blood thinner..thats another 200 something..they said that sometimes you can have the doctor request and authorize it and the insurance will pay for it..which i THOUGHT is what had happened today anyway..but now seeing that jons not responding to lyrica anyway - we may just have to change things around anyway..i believe we did figure out a way to work around the lovenox as well..to have the insurance pay for that too..
so as far as the pain management goes..they were "paged"..and the doctor "was suppose to give them a heads up"..but WHO KNOWS if any of that even happened..we told them we WERENT leaving tomorrow UNLESS pain management CAME in and TALKED to jon personally...this is out of control now...there's no sense in having him on something thats not effective and the insurance wont pay for anyway..
we had this agency that sent me a caregiver to be trained today..while she is a very sweet lady...it wasnt a good match..sadly..lets just say i wouldn't feel comfortable leaving her along here with jon..she couldnt do the transfers very well..and she had trouble doing other things..so i asked jon (thinking maybe it was just me!) and he felt the same way..so we called the agency back and asked to have someone else..he siad that "usually they have a male caregiver for quad patients"..i said "in no way was i going to have a male caregiver living in my house with 4 little girls while my husband is there in NO shape or form able to protect me"..i wasnt ABOUT to have that happen!! the agency asked "well what about a live out male giver"..i said something.i wasnt willing to compromise my family in any kind of situation like that..you just have to be careful these days!!! so they called back and said they have ANOTHER girl..her name is heidi..she is 20 -30 years old..so we'll see..but im TERRIFIED about having a caregiver..not having one but just FINDING one!!! i REALLY need someone who is capable for 24 hours atleast for the first week so i can figure out what exactly my needs are going to be..i have NO IDEA!! anyway - just pray for me that something works out..
tomorrow the plan is for me and jons family to meet at the hospital around 10amish..and then we'll see how long it takes to check him out..it will be a good day..he's excited to be home in a controlled enviornment where nurses wont FORGET to give him his medications..that things will run smoother..everything hopefully will be better...
well im SOOOO tired now..i feel like i just need to sleep for 2 days straight..im overwhelmed with everything thats going on..im frustrated that jons in such great pain and not getting better..i feel incredibly guilty that i havent even seen becca since YESTERDAY morning for 3 minutes..the older girls ive seen only 5 minutes in the morning before they are off to school..i still need to find some sort of outpatient therapy place for jon..i need to solidify a plan for some sort of caregiver for jon..after the first week..what i will do after that...figuring out something for my younger 2 girls during the day when im so crazy busy with jon..alright enough of the negative stuff!!
tonite was SO special for me..jon was in his chair..we finished prayer..and i was heading out..i went to give him a hug..and to my SURPRISE he hugged me back!!! and he squeezed me a hug!!! it was SOOOO wonderful!!! i of course was TOTALLY crying!!! i FINALLLLLY felt normal for once...its so hard because when i hold his hand..he cant even feel it...thats so hard for me..and him too..but to feel a hug from him was everything to me..it was just awesome..
okay well now im crying AGAIN..so its time for me to end and get to bed..tomorrow and the rest of my life is going to be even harder..time to say a good prayer and hit the sack..