It occurred to me as I watched Ty sliding down this giant slip-n-slide that getting strep in his picc line in May was a blessing in disguise. (He had to have it pulled out because of the strep) His summer would have been full of dressing changes, line care, baths with a saran wrapped arm, and water free activities. His activities would have been much more restricted if he still had a picc line in his arm, and the alternative (IV) has actually been better for him. Getting a pokie (normal IV) once or twice a month is much better than weekly dressing changes. He even looks forward to it a little bit now, he picked out his own pokie prize at the store the other day and is anxiously awaiting his trip to horsey doctor (PCMC) so he can finally have it. : ) We are hoping that he will get a port (central line that is under the skin unless accessed) put back in maybe in September if his lung fungus is cleared up at this next appointment. I've heard, but haven't confirmed with a doc, that they like the central line in because chemo burns the veins if it is administered repeatedly through them. So even though he mostly only needs an IV once a month now, a port will still be his best option so his veins don't get too damaged or whatever it does to them...I don't really know the correct terminology. And of course if he does end up in the hospital again, having a port in will certainly be better than IV's. We sure missed his port when he was hospitalized in April/May. But yahoo for an infected picc line!
I'm starting to sound like a parrot when I say he is mostly like a 'normal' kid now. It is hard for me to wrap my brain around it, and it is hard to explain how different it is to not be in survival mode anymore. Instead of keeping the laundry done in case Ty fevers and we end up in the hospital, I'm just doing the laundry cause it needs to be done. Instead of keeping two bags full of clothes, toiletries, and hospital activities in the car at all times, I have one bag in there that I keep getting stuff out of cause it has been so long since he has been hospitalized. Instead of constantly cleaning, sanitizing, washing hands, worrying about low blood counts, and possible fever, the house gets pretty messy, Ty gets dirty, plays with neighbor kids and cousins, and I forget to wash his hands sometimes before he eats! Yikes! Technically he does not have the immune system of a normal person, it is still suppressed a little bit, but when you are so careful for so long because he is in the danger zone, when he gets out of the danger zone and stays there for over 2 months it is easy to relax a little. It sort of feels like you are holding your breath...the longer we go with steady counts the less we are holding our breath. I still feel his head for fever out of habit in the morning and at night, and I still look him over for bruises and pale skin when he says 'momma I want you' which is his way of saying he doesn't feel 100%. Thoughts of what if's still creep in there sometimes, what if his counts tank again, what if he relapses, what if he ends up needing a bone marrow transplant, but I think about that stuff way less now and am slowly but surely getting myself in a better place as far as getting out of survival cancer rules your life mode and figuring out a new normal where medical stuff and being sanitary is a part of life, but doesn't rule it anymore.
There have been so many little blessings and blessings in disguise over the past year and a half. I wish my brain could remember them all so I could list a few more. I was reading back in April and May and thought perhaps that infection on his lip was a blessing in disguise because it may have been the thing that caused the fever that got us to the hospital in time to get a positive yeast culture back and get his infected port out before it caused more serious problems than it did. That had the potential to be a lot more serious than it was so I'm grateful for the way it all turned out, and very grateful for all of the medical people who cared for him in Pocatello and Utah. The doctors, nurses, cleaning staff, lab technicians, pharmacy people, ambulance guys, really, there were so many people who did everything right for him that made it possible to get that port out and get him recovered. It makes me nervous to have another port put in. Ugh, surgery, even though it is a simple procedure it still makes me nervous to send my little guy off with the anesthesiologist. Being away from Primary Children's for a month at a time sort of makes it harder to go back there, last time we were there I stood at those elevators in front of the giant 'fish tank' and all of those feelings of being there came back to me and I dreaded going up those elevators and hated being there. Not that it is a bad place, cause it isn't, it is an AWESOME hospital with awesome people who work there, but nobody wants to find out their own child needs to be treated there. So for a moment I wanted to run out and never return and pretend we had never been there. Ha! that sounds so dramatic, but it is how I felt at the time. Hopefully when we go Tuesday it will be uneventful. We are hoping and praying that his lung fungus has finally cleared up and that everything else is normal. He still has a cough, not sure what that is about. We have been so so blessed through all of this that sometimes I feel guilty and wonder how we got so lucky!!
I need to read back through all of my posts and remember the lessons I've learned and the blessings we have received so I don't start taking things for granted now that things have calmed down a little with Ty. I hope I don't seem ungrateful to all of the people who have helped us in so many ways big and small. I know I've missed writing thank you notes to many of you and I feel so indebted to so many people that the only way I know how to pay you all back is to pay it forward somehow. That is probably one of the reasons I am so passionate about finding ways to help other kids and families going through similar battles, I hope in some way our family can do for them what many of you have done for and are doing for us.
Whew! this was going to be a really short post about Ty's ability to play in the water and it looks like I went on and on forever. I'll update Tuesday after we get home from his clinic appointment. Bye for now, and thank you.