Well about 13 days in to our Hi CY treatment I sat down with the Social Worker (as stated below) and reviewed everything we're about to do and everything we're about to need. One major thing was the housing we are required to move to after the hospital.
They set us up on a tour of the housing and we did the walkthrough with two of the managers of the foundation that the housing falls under. Little did we know and we weren't told until almost 2 weeks in to it that insurance does not cover the housing but we are still required to live in the housing. So I asked how much the housing is and it's $600 a month. Well.........not a bill we had planned for nor do we have a budget for. AWESOME! Just when you cancel cable to try to cut down to cover medical needs another bill 3x the amount lands on your door! I'm still working on all the co-pays and getting those paid. I believe we are now at around $3,000 in co-pays needing to be paid for the first half of the year. I was able to get a quite a bit paid with her earlier Team Haven support.
Since there is no assistance for a ROHHAD child we really have no one to call or ask for help from. And the Cancer foundation that had sent us gas cards and grocery cards was now out of business due to the economy. We are trying to get assistance from other Cancer organizations but since no one is really donating they don't really have anything to give.
Then this past Tuesday I spent 2 hours with our in home care nurse. She did the "parent orientation" package with me. Reviewed all of Haven's supplies that are used with cleaning and changing the dressing of the central line. We reviewed the medications that she is on and if I understand how to administer them when in the house. Personally, I still don't like cleaning the line and changing the dressing. I'm still scared to do the Heparin flush. I don't like it. I get very nervous. So I really prefer Kris to do this.
Haven has slept much better the past 3 nights now. Only a couple of hours of yelling and then it's silent. We're still dealing with diarhea and extreme fatigue. I would think after almost 3 weeks of diarhea she'd be done!
oh....and I'm completely and utterly sick of eating turkey sandwiches. I can't stand another turkey sandwich. I have decided there will be a year long ban of deli meats in my house once we get home. Lean Cuisines are no better.....but what do you do when trapped? Spend $20 a meal in the cafeteria or eat another damn turkey sandwich!
Thank you to everyone for checking in on our baby. Some exciting news: My 5 year old can do a 300 pc puzzle all by herself! I'm now getting her 500 pc. :)