This is a busy week for us. John has many appointments to prepare for his surgery on Monday June 16th. We are doing well and feeling good about what we are facing. John is handling everything very well.
Here is a little of what has been going on.
Procrit Injections - including finger pricks to monitor hemoglobin. John got his last of 3 shots on Monday (he had one a week) and never cried for one of them. This makes me proud and sad at the same time.
Dr. Fearon is hoping to build up John's blood supply so that he can "recycle and reuse" John's blood and avoid a transfusion during the surgery. Tate also donated to cover the boy just in case. It was a bit of a hastle to get both boys blood types done (I was shocked that Tate had no idea...from now on I will stay on him to donate more often), but we eventually found out they are both O positive. I was relieved. I was going to feel really guilty if I was the match and couldn't donate because I am pregnant. I am A positive so I wouldn't have worked for John anyway.
Thank you to the many sweet friends and family who have offered to donate blood for John's surgery. If I had been the match we would have turned to you all, but since Tate is John's match we are in good shape. But by all means, don't let me stop you from donating!! I think that would be a special act to honor John.
Back to the Procrit, we had to fight insurance on this one, but finally worked it out. Can I just say how difficult those punks make everything. I spend a good 10 hours a week figuring out how they are screwing us over after each and every appointment. And maybe another 3 hours a week fighting with them. We are hoping to work all the kinks out before the surgery but I am sure they will find a way to deny us as much as possible. As if we don't pay enough every single month. I do consider us lucky that we have insurance, I can't imagine how daunting all of this would be if we didn't. It just angers me how much money they are making from average people who hardly use insurance more than they spend on it...yet they try not to cover us for anything.
On that same note, we are keeping track of receipts and expenses for taxes. We had no idea when we set Tate's flex spending account what all we would need for this year!
We continue to get answers to our questions (at least one new one occurs every day, and this team is amazingly fine with that, even encourages it!) We met with Dr. Sacco, our neurosurgeon, today and LOVED him. He renews my hope in the humanity of the field of neurosurgery. He was wonderful and patient with my many questions and asked what I feel are the appropriate questions of John's situation. He was also very concerned with John's future psychosocial health as well as his parents which meant a lot to me. We met John's ENT on Tuesday and he was happy with how John is doing and feels good about moving forward with the surgery. We set up an appointment to meet with him in August to follow up on John's allergies and sleep apnea. We have a presurgical assessment appointment with John's pediatrician tomorrow and a whole slew of appointments Friday morning. This weekend we are hoping to take it easy and rest up for next week.
We have been working very hard to stay healthy - This has been one of my biggest fears, that John will get another sinus infection or a cold and the surgery will have to be postponed. Our pediatrician has gladly checked him over every time we run in for a Procrit shot and John has gotten a clean bill of health. Poor little man gets saline up his nose about 6 times a day...and I am now keeping him out of crowded kid situations for the remainder of the week. We are playing with our sweet pal Ava as much as possible so that John doesn't feel like a boy in a bubble.
And most importantly, we are trying to squeeze in as much fun as possible. Our vacation was a blast and our past few weeks at the neighborhood pool were great. This week we are mostly home bound while not at doctors appointments, but we are making fun with everyday household chores like cleaning out closets. Yesterday was luggage consolidation day and John had so much fun climbing in and out of suitcases and pulling and pushing the bags all through the house.
Thank you to everyone who has called, sent emails or snail mail letters to show your support for John and all of us. We are blessed by our friends and family and the many relationships we treasure. This has been quite a journey over the past 6 months and your support, love and prayers have carried us through. Please keep John and his surgeons in your prayers for Monday's surgery and the recovery to follow. He is a tough little man and we have incredible confidence in our surgeons, but the unknown always hangs over us. The surgery is to begin at 1:00 on Monday afternoon and last anywhere from 4 to 5 hours. We hope to be home by the end of the week, possibly as early as Wednesday if all goes well. I will do my best to update the blog as often as I can to keep you all up to date on what is going on.
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