I'm baaack! First of all, to all the people freaking out because I haven't been posting, Ben's OK. We're back home having been discharged (finally) on September 17th. It was a long haul (77 days straight), and Ben didn't make it any easier on himself, or on us for that matter. But our days in 8D are hopefully behind us. Now we just have to go to clinic on a regular basis (1-2 times a week) to check his blood and bio-chem levels, and Ben is still receiving IV immunoglobins over 4 hrs once a month. Most of Ben's nutrition, 8 different meds and most of his hydration is administered by us through his feeding tube - which Roger and I are now expert at replacing ourselves, as it has come out several times overnight. We've also become masters of the Kangaroo pump, through which his overnight feeds are run. So basically, our lives at home are back to normal. But what, you ask, happened in the last four months? Well, besides the replacement of Ben's last Broviac, two bouts with C-Difficile, unexplained temperature fluctuations and vomiting, the death of a child on the floor, and the terminal relapse two more - not much. As you can imagine, even a superhuman person such as myself needs to step away and take a break every once in a while. Actually, not long after Ben's birthday, I started informal sessions with the floor psychologist just to talk and vent - stuff which I had previously only done through this blog. Having hashed through everything once, I didn't really need or want to do it again, especially since the only time I had to write was at night when I was completely exhausted and unmotivated anyway.
Early August, the doctors finally decided that Broviacs and Benjamin do not mix. Broviac #5 was removed and replaced by a port-a-cath, which is essentially a port nestled under Ben's skin by his left clavicle. It is accessed by poking a needle through the skin, which is then secured with gauze and a dressing. Right now Ben just gets accessed for his once-a-week blood "donation". But once that tapers off, we can go a month with zero maintenance on the thing.
Our weekly hospital visits are a bit of a drag - not that we're complaining. But because Ben is post-transplant, we have to stay in an isolation room in the back. And although we're just there for routine stuff, the visits tend to last minimum 3-4 hours, what with all the waiting involved. Now you try to keep a very active toddler occupied & distracted in a small room for that long.
After 3 months of only being fed through the feeding tube, Ben is finally starting to eat a bit again. Unfortunately, until he is completely off the immunosuppressant drugs he is on a restricted bacteria diet, which makes finding foods that he is allowed to eat and that he also likes a challenge. Right now we are being indulgent & Ben is on a diet made up entirely of Doritos, pickles, yogurt and Cheerios.
We are getting back into a normal routine however. We were able to take Benjamin trick-or-treating for Halloween this year, which was so much fun. Unfortunately, he will have to miss most of the Christmas parties, but he will be going to the biggest one hosted by Leucan, the regional childhood cancer support group. So all in all, life is good. We are taking it one step at a time, but I don't see how Ben can't be cured. He is simply exhausting. It takes all my energy and then some to keep up with him, especially since now he has an older sibling to emulate. God forbid that Emily try to do something without Benjamin trying too.In other family news, I'm thrilled to announce that Emily & Ben will be cousins (& I'll be an aunt - yay!). My brother and sister-in-law are expecting their first child in late May. So far, everything has been fine, and we hope that trend continues for the duration of the pregnancy. Congrats, Dan & Courtney!
So that's it. We're all getting on with life, but the blog will not be abandoned. After all, Ben's not out of the woods yet. So please continue to check in periodically, & I'll try to post at least once a month.
