Heaviness

This afternoon Noah had an appointment with his urologist.  The meeting can be neatly summed up as follows - Noah was talking with Dr. T and asked him what his name was.  Dr. T smiled and said that he might be the only one of Noah's doctors who is unfamiliar enough that Noah doesn't know his name.  "After all," he said, "I'm not a main doctor - I'm more in the perimeter."  Then, getting much more serious, he said that this was likely to change very soon.

We've known for a while that Noah's disease was starting to affect his bladder.  Like with everything else mito touches, there's no good way to get a timeline or solid expectations.  We had noticed that Noah is now incapable of urinating at will.  Before the loss of his gut in January and his subsequent downhill spiral, he was totally potty trained.  After January, he needed to be in diapers because he was so often too tired/weak/hurting to  make it to the bathroom, BUT if we took him to the bathroom (or brought his bedside commode to him), he was perfectly capable and willing to go potty.  We knew from his VCUG that he wasn't emptying his bladder completely, but hoped that increasing his oxytrol dose would help.

A while back, we needed to get a urine specimen from Noah, so I sat him on his commode. He was unable to urinate and grew pretty distressed.  It took more than 20 minutes for him to produce.  I chalked it up to bad timing/an off day, but when we needed another specimen a few weeks later, the same thing happened.  Every time we take him to the bathroom, he sits in frustration, unable to urinate.

The same thing happened at the urology office today.  He sincerely claimed that he did not have to go, that he "didn't have an peepee," etc. and was unable to go even after sitting for quite a while.  I need to emphasize that this is not behavioral - he is upset that he can't go.  He simply is no longer in control of his bladder and does not even seem to be aware that he needs to go.  After our failed attempt, the nurse ultrasounded his bladder - it had almost 300 cc's of urine in it. (well over one cup of fluid).  This is a pretty full bladder for his size and should have definitely triggered a need to urinate.

The bottom line is that mito has sunk its teeth into Noah's bladder pretty firmly.  His narcotics may be contributing, but we saw this problem before he was taking much in the way of pain meds.


We need a safe way of keeping Noah's bladder emptied appropriately.  Failure to do so can lead to bladder infections, kidney damage, etc.  There are several escalated steps we can try.

1.  We are discontinuing his oxytrol patch.  (He's thrilled about that!)  It's slightly possible that this patch, given to help with leaking, is causing this opposite problem.
2. The next step would be trying various drugs, but - you guessed it - they are oral/liquid drugs that aren't safe for home IV use.  There's another we could give IV, but it would need continuous infusion via yet another pump and might not even be compatible with his TPN.
3.  Since we have to skip step 2, the next step would be botox injections into his bladder sphincter.  This would not give him bladder control, but it could relax the sphincter enough that he empties his bladder sooner rather than later, and that he empties it fully. This would be done under anesthesia and would require a hospital stay of a couple of days.  Dr. T said that it's usually outpatient, but that "No one wants to do anything outpatient with Noah at this point because of all of his issues."  Lovely.  He'll need a continuous catheter for a few days after the procedure, which will need to be repeated every 3 months or so IF it works.
4.  If the botox doesn't work, we'll have some hard decisions to make.  He can have a sphincter ablation, where they surgically destroy the bladder sphincter.  He would be permanently and 100% incontinent at this point and he would "leak" urine all of the time as it entered his bladder.  Any and all urine specimens would need to be taken via catheter from that point on. 
5. The other 2 options are far more dangerous and come with higher risks.  He could have a surgical opening made between his bladder and his abdomen.  All urine would "leak" out into a diaper or into a urostomy bag.  The other option is probably not even a real possibility - a piece of his small intestine would be used to create a tunneled opening from his bladder to his abdomen.  It would be made in such a way that it would not leak, and we would use a catheter to empty his bladder via this tunnel a few times a day.  This would allow him to be dry, wear big boy undies, etc., BUT it's not a great option for him.  The best way to make this tunnel is with his appendix  . . . but he doesn't have one.  Next best is to use colon . . . but his is friable and damaged.  Cutting into his intestines is just not a great option and at this point is simply too dangerous to consider.

This whole thing is heartbreaking.  I hate the fact that another body system is being attacked so mercilessly, and I hate that even this small dignity of "big boy undies" is most certainly forever out of reach for Noah.  I was tidying in my room the other day and found an unopened package of Superman undies I'd bought him on eBay and tucked into a drawer for a surprise right before he got so sick in January.  Even before today's confirmation, I broke down and cried when I saw them, knowing that Noah would probably never get to use them.  I hate the fact that everything we do has such a domino effect - his mito attacks his bladder, but his pain meds make it worse.  Drugs that could help can't be given because the mito destroyed his gut.  The whole problem opens him up to life threatening infections, kidney damage, and more - and requires invasive treatments which can lead to problems of their own.  I came away from that office wanting to run away somewhere and rock and hold Noah and never, ever let go for anything. 

When I was a little girl, I always sort of assumed my life would take a predictable course.  I'd graduate from high school, go to college, get married, have children, and raise a family.  I just assumed that all of this action would take place before I was 30, and when I looked ahead, it seemed like there was a thick wall of mist at my 30'th birthday.  I just couldn't see past that wall, and when I did turn thirty (complete with college degree, loving husband, and baby #5 on the way), I was kind of scared.  Somehow it felt like I was stepping off into the great unknown and I could no longer imagine what course my life would take. 

Looking forward at losing Noah feels the same way.  When I have to think about it, it is like a wall of dark, black mist.  I can't see past it.  I can hardly imagine life after that day and cannot wrap my mind around the other side of the mist.  All I know is that Jesus is on the other side of that dark wall.  He's there.  I don't want to cross that milestone EVER, but there is comfort in knowing He'll be there.   Today He reminded me of something - He's here on this side of that wall, and He'll be there on the other side of that wall, but He's also IN the wall.  He's in the midst of the mist.  Today, when it felt like the mist was reaching out with its cold dark tentacles, He was there.  Honestly, this doesn't make it hurt any less, but it brings comfort with the pain.  It's the difference between a child falling down and crying alone versus the child who is scooped up and lovingly held until she stops crying.

In mostly unrelated business, there was a strongly worded and very negative comment left on my last blog post.  I dislike conflict and drama, and don't like it when drama is brought to this blog.  As easy as it would be to get defensive or to just dismiss the comment, Proverbs 15:5 says that "He that regardeth reproof is prudent."  When faced with criticism, I try to take a little time to mull it over and pray - even if the criticism was mean-spirited or unwarranted, there may be truth in it that I would miss if I didn't consider it.  Having said that, I discussed the comment and my last post with Jeff and with my mom, and I still believe that my writing was clear and truthful.  Because this comment was made publicly on this blog, I also feel that it is most appropriate to answer it here (had it come via email, I would have responded that way.)  I'm doing so beneath my signature so that those who didn't read the comment in the first place don't need to read past all it to be sure they got the full update.

I'm thankful that my last post was a blessing to most of you.  I've had a lot of requests for permission to link to the post - I don't ever mind links to this blog as long as they are of a supportive nature!

Blessings,
Kate

Lexy,

The written word is not always the best way to communicate, and it would undoubtedly be easier to be clear in person.  Since that can't happen, please understand that I mean all of this sincerely and am not trying to be harsh or snarky.

It might be a good idea for you to re-read my post just one more time.  You may have been tired or in a hurry when you read it as you seemed to have misunderstood or missed several things that I said.

I didn't say that I am overwhelmed by parenting my children.  Believe me, parenting and homeschooling is a joy.  I said that sometimes I get overwhelmed.  This was said in the context of explaining that I am very much like every other mom.  Special needs moms are often credited with some sort of extra strength which we simply don't have.  What I do goes far, far beyond parenting.  Noah's medical needs are very involved right now.  This is taxing not just physically but emotionally and there are times that it all feels like so much.  I do not stay overwhelmed, however, nor do I typically feel that way.

You have every right to a different perspective, and to feel differently about receiving help than we do.  First, I am thankful (and hope you are too) that you've apparently never been in anything resembling my shoes.  If you had, chances are you'd understand.  Second, with only one exception (gas), Jeff and I have done and provided everything on that list and more - that is to say, we've done it for others when we had the means to help.  It is very, very uncomfortable to change from being the giver to being the receiver, but we also had to realize that it would be a sort of false pride to turn away sincere offers of needed help.  We still do anything we can to help those around us that are hurting.

No, I don't go around asking my friends for gift cards - never have, never will.  I've never blogged saying, "Please send gift cards." I've never said that I need them or must have them (and the paypal button was only placed on our site after repeated requests from readers that we do so). What I DID say is that specific offers of specific help are easier to accept than general "let me know if I can do something" offers.  When someone - anyone -  is going through something catastrophic, there are many ways to help, but those on the outside may not know the kinds of things that do help.  I don't feel that listing those ways was inappropriate, and I made of point of saying,
"I hope that this is helpful, and I hope that you'll use this to bless other people who are going through a loss, impending loss, or difficult season in life.  I've spoken to enough other mothers of sick children to know that the feelings I expressed above are pretty universal!" 
and
"I'm not saying that to solicit these things."

My children DO help, as does my husband.  I am very, very blessed in that regard.  Our "nursing help" is one hour, two times a week.  (Yep, two hours a week.)  Our sweet CNA gives Noah a bath on those two days but does not have time for anything more.  We do have nurses in our house a LOT, but they aren't here to provide "help."  They are here doing assessments - it's kinda like taking Noah to the doctor but it happens here at home.  These visits require my time and attention, and while they are needed and good, they are not what you might think of in terms of nursing "help."

Even though  my children and husband and CNA are helpful, all the help in the world doesn't change the fact that there have been times that the thoughtful gestures of others have lightened our load.  There are many days like today, when we come home heartsick and far later than expected from a far harder and longer visit than expected, or when Noah takes a sudden and unexpected turn for the worse, or when he has some kind of emergency, etc.  If we need to grab pb&j sandwiches on nights like that, we'll certainly survive (and be thankful for the provision of the food in our pantry!), but when someone steps in on a day like that and offers to help in a concrete way, it is an amazing blessing. 

This is why, even though I listed many different ways to help (from taking the time to ask how we are, to being available to talk, to offering to be a listening ear for the children, to coming to help at the house), I also mentioned ways to help that do involve money.  It would be silly not to mention those things and it would be dishonest to pretend that occasional meals, etc. wouldn't be a blessing to  ANY family going through a crisis.  Sure, moms with only healthy children have hard days (I had plenty before Noah), but it's very fair to say that my hard days NOW don't even remotely compare to what I considered hard days before Noah.  We've made it through many hundreds of hard days and many dozens of VERY hard days without any help.  There have been other hard days when someone's kindness has allowed us to decompress with a fun family activity, or order take-out, or even treat ourselves to a Starbucks coffee when leaving for another miserably early doctor's appointment.  It's not always easy to be honest about how things like that help, but I am pretty sure that ANYONE you know who is going through something terrible would also appreciate gestures like that.

As far as the number of children we have . . . well, Lexy, that one is just plain off limits. They are blessings and gifts, and the loss of any of them would not make this road any easier to travel.  The privilege of spending my days with these beloved ones is not what makes my life difficult. I do not "expect" anyone to help us right now and I would not "expect" anyone to help us if I did not have Noah.  Let me be perfectly plain:  I would give everything I own, every dream I've ever had, every friend, every hope, every everything to make my little boy well again.  Don't you dare imply otherwise.  To ask what I would do if I had 8 healthy children is cruel and inappropriate.  I only wish I could know what that life would be like.  From where I'm standing, it sounds like Christmas every day.

My church is very precious and supportive. Feelings of isolation aren't due to being alone or ignored.  It's from going through a gigantic, life-changing experience to which few people can relate, no matter how well meaning they are, and about which people are often silent for fear of saying the wrong thing.  I tried to make that clear in my post.

We've been blessed many times by the kindness of others.  We don't deserve it, we don't expect it, we don't demand it, and we haven't earned it, but we're always humbly thankful for it.  My intentions in writing that part of that post was to share universally helpful ways that readers could reach out to those whom they know personally and minister to them in practical ways.  (See my quote above).  It wasn't about me.

I think I've covered everything, but as I explained in my main post, I'm pretty sad and soul-weary today.  If I missed something, or misinterpreted something, or if you feel that you need to discuss this further, please feel free to email me.  By the same token (and I do not mean this unkindly), if my blog is such an offense, please feel free not to read it.  There are many other blogs that you may find less offensive, and many other families who could use your prayers.

Blessings,
Kate