The Knick Family: 06/01/2010

In the middle of the summer catch up blogs, I thought I'd better get you caught up on the medical side of things, cause lots has been going on.
We will start with Hayden, we have been wondering for awhile, whether he has something wrong with his bladder. With him having had Transverse Myelitis, I have seen in all my research, that the bladder, and bowels, are the first things to be affected. He is always wet, and even when I try every half hour, to get him on the potty chair, he is still wet in between. Now that he is 4 1/2, his neurologist finally got what we were saying, and sent us to an urologist. We had that appointment last Tuesday, up in Fargo, and they had him try to pee in a cup, which he did a little, but not very much. Then they scanned his bladder, which was still pretty full. So, his Dr. decided he wanted to do some further testing, which we did on Monday. First, we did an ultrasound of his kidneys, to make sure there was no damage to them. What they were worried about, is because the bladder seems to be mostly full all of the time, it would be putting pressure on the kidney's, and in turn, damaging them. Next we went to have a cystourethrogram, which is a procedure to check and see how he releases his urine. He had to be catheterised, and his bladder filled with a dye, and then they took continuous x-rays of how it was flowing out. Jeremy was right there with him, and I got to watch it all behind the door, so I got to actually see it all too! He maybe released half of it, if that, which wasn't great. With his bladder being filled to the max, he should have voided almost all of it. This is what we hear most times though (when he is on the potty), is just little bits at a time, so it was consistent with what we have seen.
With all of that, he did such a great job! Luckily, he was giving some nitrous, to clam him down a little, and make him loopy. He told dad, "we should do this all the time", when they were changing in the bathroom, so obviously he was loopy!
We got the results yesterday, and it was some good, and bad news. First, the kidneys are just fine, no damage to them. But they aren't quite sure yet what's going on with the bladder. There is defiantly something wrong, because he isn't voiding, which will eventually damage his kidneys. And there is a pocket, on his bladder, which doesn't need surgery yet, but could the future. This happened because of all of the added pressure of the urine, that isn't being released. There could be 2 things that it could be, one is permanent damage to the bladder, from his Transverse Myelitis, or, it could be dysfunctional voiding. Damage from the TM, would be something we couldn't do anything about, to make it better. And dysfunctional voiding, would still maybe mean cath-ing him 2x's a day, in order to help him learn how to push it all out. Plus, there could be a med, that could help relax his muscles, to allow him to pee. But that med can have some pretty nasty affects, and he would have to be monitored closely, to make sure he isn't retaining urine.
So with all of that, they wanted to send us down to the U of M, to see a specialist there, and we asked if there is anyway, we could just go to Mayo, since we have so many that we trust there. They seemed fine with that, so we are just waiting on a recommendation from Jaxon's Dr. and then we will get that all rolling.
I know that is a crazy amount of information for all of you, but this way, I maybe don't have to explain it so many times! I don't even know if it makes any sense, cause we are still trying to process it all out. It has been a little overwhelming, to say the least. Thinking about probably having to cath Hayden twice a day, seems impossible, on top of all we are dealing with already, with Jaxon. All we have been able to do, is give it all over to the One who knows, what we don't! He will give us the strength we need, and the ability to sort this all through, and deal with it! And this isn't surprising either, when you really think about what Hayden went through as a baby!
Jaxon has been having a couple of good weeks, which we have been so thankful for! He has been playing ball, and loving it! We can tell he is coming into another flare, so the timing of this has been great, cause we are almost done for the summer. He will be having a ton of appointments, the end of July, and starting his new meds. so we are praying that this new stuff, kicks this all right out of him! He has to go off of kineret (his shots), a few weeks before that, so he won't be feeling good, but then his body is all set for the new. We have been really trying to get him as healthy as we can, before the new med. so we know we have done everything we can! We haven't had the energy, or the know how, to do the more natural stuff, but we know we can't be wondering later, if that would have helped, so we are on it now! He is taking lots of good vitamins, and protein, is dairy, sugar, and red meat free, and we are keeping up with his stretches and other things. It feels like a whirl wind, just going grocery shopping, but we know it will be worth it. He's going off of sugar, because it promotes inflammation, dairy because of his stomach (which has been so bad, for so long, and is preventing him from absorbing anything), and red meat because it is hard to digest, and also has promotes inflammation. We will see how it all goes, but he is doing GREAT with it right now! How he can deal with all we are throwing at him, is beyond me, and only from God! But it is a great time to do it now, when he isn't in school.
So THERE you have IT! Lots of info, but that's what are lives look like, everyday. Thank you for all of the prayers and encouragement, we need it daily! Jeremy and I are really worn out, and feel like we can't breathe, but we will make it, and only with God! I have to keep reminding myself of that, because for the last few days, I am always on the verge of tears. But I know that God wants me, of course He doesn't want me hurting, or feeling overwhelmed, but to rely completely on Him. He never promised us that life would be easy, but He did promise to NEVER leave us, or give us more than we can handle!