This happened on Wednesday:
Yes, Ben came home to continue his recovery surrounded by those he loves most. Indeed, I am referring to his guitar collection. Hahaha.
It was a mad scramble to get things ready for him in less then 24 hours. We had excellent care in VGH, but I did mention to the nurse upon departure that I can’t imagine what it must be like for those being suddenly and unceremoniously discharged from hospital if they aren’t of the personality to push back a bit and dig for information about how to best meet their needs at home.
Lucky for us, we have a wonderful friend who is an OT by profession and just an all round great person on the side. In less then a day she arranged for the delivery and set up of all sorts of equipment in our house such as:
This gives Ben the ability to get in and out of bed each day. And this:
Which gives Ben a reclining chair for comfort, when the dog hasn’t adopted it. (Don’t you just love Timmy’s sly smile here? He is taunting Ben.) In addition, we have a second wheel chair that folds up and can be put in the van, along with a wedge pillow to help Ben sit up and a bed rail to help him roll over. Ben has found that he doesn’t so much need the wheel chair in the picture after all, as he is able to get up and down the stairs to our bed, and he is finding that he can get himself off the couch, which he was concerned about before coming home. We are going to send this wheel chair back, I think.
As you can imagine, all this equipment doesn’t come cheap, and once again we are so, SO blessed with being surrounded by really wonderful people who care and work hard to get Ben what he needs. Our employer was nothing short of amazing (and I don’t actually say that lightly). Not only did they approve every piece of equipment he needed, but they waived their usual referral and just ‘okayed’ everything via email. If you are familiar with our organization, you will understand what a big deal that is – NO PAPERWORK!!! Then the supplier (mostly due to Paula’s working relationship with them, I’m sure) agreed to direct bill our employer instead of requesting the money up front. That also takes a lot of extra work off my shoulders, as I no longer have to do any running around to do or completion of paperwork, and I don’t have to wait 8 weeks for reimbursement. We are very grateful for this at a time when we are counting pennies and are happy to not have the additional burden of finding time to submit forms.
Ben came home with several prescriptions which we dropped at our usual pharmacy. One of them was for life sustaining injections of a form of Heparin to keep Ben from forming any more blood clots, which would not only require another hospital visit but would threaten his life as well. After 22 years each in our organization, we have gotten used to Cadillac Health Care and the benefit of being able to walk in and out of the pharmacy with all our prescriptions filled at no cost to us at all. So you can imagine our surprise when the pharmacy called back to inform us that this particular (and extremely necessary drug) was not covered by our plan. And, it costs $1130 / month. AND Ben may be on it for life.
Needless to say, that threw us into a brief panic, followed by some tears and a flurry of emails, followed by the offer of financial assistance by my parents yet again. (what would we ever do without those two AMAZING people, and seriously, how did we ever get so lucky???!! How we love you, Mom and Dad. There are no adequate words.)
In any case, the staff at work jumped in and helped out – contacting the specialist to determine if there was a different injectable blood thinner Ben could take that would be equally effective as the one she originally prescribed, but that is covered by our supplemental health care. In addition, the staff also contacted Ottawa immediately to ask them to review this drug and explain why it is not covered (although, that will probably take months, as those of you in ‘the know’ will have experienced yourselves in the past. lol). I really appreciated her efforts though.
At first the specialist responded that she did not believe she would recommend any other form of the medication for Ben, as the one she prescribed is specifically for those with impaired kidney function. However, later in the day she decided to issue another prescription for a different medication that needs to be injected twice daily (poor Ben – one extra needle a day) but that is covered under our plan. This medication still requires special approval for coverage, but the details of that is being taken care of by Health Services so we don’t have to get involved.
In the meantime, the specialist left 10 free injections at VGH for Ben to carry him through until this whole matter could be straightened out, so he will get the original prescribed injection for almost two weeks while approval is sought for the other twice daily medication. Never thought I’d be so happy for ‘free’ meds! That also buys us time to talk directly to Dr B and to the specialist to ask questions about the effectiveness of the ‘free’ injections vs the original prescribed medications. Obviously we don’t want to compromise Ben’s recovery, but …. $1130 / month? Ouch!!!
Ben is quickly beginning to regain some strength through proper diet at home. He is beginning to eat more and of course it is as organic as possible and no sugar other then what comes naturally in fruit. He still tires easily, and last night he slept from 8pm until 4am. It is hard on the kids to see him in this state, but I have explained that the surgery was very significant and it will take him time and good food to get back to ‘normal’. It makes me sad to see their faces when they talk about him.
Ben has a few weeks of recovery here where he needs a lot of care, and then we will be off for the next CT and meeting with the Oncologist. At some point within the next few weeks we will also meet with the surgeon, and on Monday Dr B will remove at least some of the staples in Ben’s stomach. So we will have a busy few weeks but they will be punctuated with some awesome times, like Zak crossing the stage to receive his diploma with 500 other grads, and then heading off to prom. I can’t wait to see him in his suit. Also, Jaime will be off to Kamloops for several days of intensive volleyball training, as she was selected to play in the Baden Cup. So was Raegan, although her age group remains in the Lower Mainland.
So, despite the setbacks and challenging times, I continue to be inspired by the kindness and generosity of others. There are more good times then bad.
Have a marvellous day, and hug your loved ones. xo
PS. Thanks to Nancy and Jeremy for the beautiful flowers!