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The last Friday of clinic... For all the families in our program at Cincinnati Friday was the day we were all waiting for. By that time treatments had been established, tests completed, blood work done, etc etc...now it was time to meet with the doctors and get "the rest of the story"....
For some families that would be surgical planning, for some medical management, for others it would mean new unknown diagnosis, or just a pat on the back saying all is well, keep on keeping on.
The appointments with the colorectal team ran very very late for us... 2 hours late in fact. This made us super duper late for our urology meetings which in hindsight turned out to be much more significant for us.
As I write, I know that this is more therapeutic and thought organizing for me, than any value it will bring to the readers....but sometimes my "pen" is my outlet, and that proves true tonight.
For Shea and Simon, I will say that the colorectal team was very helpful. They helped me problem solve and tweak the management plans i already had in place, to make them more reliable and to keep the boys insides in better shape. I'm coming home with a program for each boy that is a bit more time intensive, but overall gets the job done better and with much milder and natural ingredients...
Since shea's goal will eventually be to help me, and then become independent with this program, He will have the malone surgery done in the future. There is not a rush for this to happen, and we will do it in Cincinnati when the urological surgery happens.
By the time we made it to uro almost 3 hours late, when they were holding shop open for us...it was the recipe for a perfect storm. 2 boys hanging in there pretty well, but still punchy and restless from a full day of hospital sitting, a very tired mommy who still had a 10 hour drive that night, teaching on some new medical procedures then add in some very unexpected news, and wham.... watch out a crier! Just the way i wanted to start my long journey home after 5 pm! ( enter stage right, dunkin donuts pre drive large black iced coffee w carmel swirl to soothe my soul :)... my current addiction.
Shea's story is that he is most certainly a candidate for urological surgery, likely sometime in 2015. It will be some combination of bladder augmentation, mitrofanoff ( stoma directly to bladder near the belly button ) and bladder neck tightening. Before the complex team can know exactly how to proceed with shea, we have to start 3 to 4 months of medication therapy and catheterization every 4 hours. This is to get the bladder as relaxed and spasm free as possible in order to safely go ahead with the operations. None of this was a big surprise.... infact it's why we went to Cinci in the first place. They have tons of experience operating on kids even younger than shea, and working hand in hand with the other teams so that everything is coordinated, hopefully in one shot. I felt like we finally had this ball rolling, and it wasn't just a "someday, somehow" thought any longer.
Simon's story was much different. It involved a great deal of surprise and unexpected changes which took me quite off guard, and made for an emotional roller coaster to be racing through my head as I tried to get education and training from the team. It all happened so fast and furious that I really walked out of there with my head spinning. It seems that at home there were certain tests that were not administered in the last 3 years, and also certain equipment that rochester lacks, so complete data wouldn't have been present even if testing had been up to date and current. To summarize, simon's bladder was surprisingly even smaller than shea's, had higher pressures, and more spasming. The team presented his case, and told me our new job was to control this as best as possible in order to prevent kidney damage. It was no longer a case of checking the kidneys once a year to make sure they looked healthy. It is now a case of "manage this problem now to avoid the kidney damage that will occur if you don't". So, in addition to Shea, Simon now also has to start medication daily and catheterization every 4 hours.
Neither are allowed to use the restroom in the traditional way to empty their bladders, as this is when pressures peak the most. Wow... unteaching this to a child who we've worked so long and hard with to master these skills...sigh
The next steps are to return to cincinnati in 3 to 4 months for a short trip to retest urological pressures etc, to see how much progress we've made. We are in frequent communication with the clinic via phone, email, uro journals etc to adjust our routine and medication dosages so that we can get the best possible results. At this time we may start to do surgery planning for shea, and for simon it will be the first step in determining what our future plan of care will be... medical management, verses surgery.
Another surprise I received was about recovery time. I had not been aware that with bladder augmentation you have to stay hospitalized for 2 to 3 weeks. That in itself will be a tricky feet to plan and carry out. Also about a month after the malone and mitrofanoff are done, we will return to have "hardware" removed.
So we are embarking on a busy busy year ahead. I'm happy at what this will bring for shea's future with independence and confidence. I'm so thankful we got this help we needed for simon, even though i mourn a further loss of "normalcy" for him.
Our current phase is one of figuring out how the heck i'm going to do all of this. I have had to resort to daily check lists to keep me on track. With medical items alone....injections, pills, liquids, meds for 3/4 kids, up to 4 times per day, GI routines 4 times a week, catheterizations every 4 hours, i'm not quite sure how we will sustain this rate of "nursing" in our home. Getting organized and in a routine will be essential. I'm praying that I can keep up with the non nursing parts of motherhood, although i struggled with that even before these additions were made :)! I pray that we can avoid missing out on fun and activities for the kids because of the time that all of these things take.
I do feel overwhelmed, but i also feel honored. Honored to care for my children, and honored to know their life is full of value and potential. Honored to know their life now is so much different than it could have been... thankful to God for our blessings, and this crazy, overwhelming wonderful family.
Again I will say, if you've made it to the end of this incredibly long post, you deserve extra credit! I will take any prayers that you can send our way.
To my husband, thank you for being a shoulder to cry on "a few" times since we've been home, and thank you for all you do around our home, and for our family. Hang in there!! We can do it.
Our october is winding down... Pastor Appreciation Month, Down Syndrome, Spina Bifida and Dyslexia awareness month, and PT month... as i have said...we are so aware it hurts! Ha Ha...
I will leave you with this link... Orphan sunday is soon approaching. When I think of where my children came from, and where they may be today.... it is Gods way of giving me strength to carry on. God would probably also think it would be a good idea for me to stop writing and go to bed! So here it is... my heart... please watch....
to watch...just click...
Shea's story is that he is most certainly a candidate for urological surgery, likely sometime in 2015. It will be some combination of bladder augmentation, mitrofanoff ( stoma directly to bladder near the belly button ) and bladder neck tightening. Before the complex team can know exactly how to proceed with shea, we have to start 3 to 4 months of medication therapy and catheterization every 4 hours. This is to get the bladder as relaxed and spasm free as possible in order to safely go ahead with the operations. None of this was a big surprise.... infact it's why we went to Cinci in the first place. They have tons of experience operating on kids even younger than shea, and working hand in hand with the other teams so that everything is coordinated, hopefully in one shot. I felt like we finally had this ball rolling, and it wasn't just a "someday, somehow" thought any longer.
Simon's story was much different. It involved a great deal of surprise and unexpected changes which took me quite off guard, and made for an emotional roller coaster to be racing through my head as I tried to get education and training from the team. It all happened so fast and furious that I really walked out of there with my head spinning. It seems that at home there were certain tests that were not administered in the last 3 years, and also certain equipment that rochester lacks, so complete data wouldn't have been present even if testing had been up to date and current. To summarize, simon's bladder was surprisingly even smaller than shea's, had higher pressures, and more spasming. The team presented his case, and told me our new job was to control this as best as possible in order to prevent kidney damage. It was no longer a case of checking the kidneys once a year to make sure they looked healthy. It is now a case of "manage this problem now to avoid the kidney damage that will occur if you don't". So, in addition to Shea, Simon now also has to start medication daily and catheterization every 4 hours.
Neither are allowed to use the restroom in the traditional way to empty their bladders, as this is when pressures peak the most. Wow... unteaching this to a child who we've worked so long and hard with to master these skills...sigh
The next steps are to return to cincinnati in 3 to 4 months for a short trip to retest urological pressures etc, to see how much progress we've made. We are in frequent communication with the clinic via phone, email, uro journals etc to adjust our routine and medication dosages so that we can get the best possible results. At this time we may start to do surgery planning for shea, and for simon it will be the first step in determining what our future plan of care will be... medical management, verses surgery.
Another surprise I received was about recovery time. I had not been aware that with bladder augmentation you have to stay hospitalized for 2 to 3 weeks. That in itself will be a tricky feet to plan and carry out. Also about a month after the malone and mitrofanoff are done, we will return to have "hardware" removed.
So we are embarking on a busy busy year ahead. I'm happy at what this will bring for shea's future with independence and confidence. I'm so thankful we got this help we needed for simon, even though i mourn a further loss of "normalcy" for him.
Our current phase is one of figuring out how the heck i'm going to do all of this. I have had to resort to daily check lists to keep me on track. With medical items alone....injections, pills, liquids, meds for 3/4 kids, up to 4 times per day, GI routines 4 times a week, catheterizations every 4 hours, i'm not quite sure how we will sustain this rate of "nursing" in our home. Getting organized and in a routine will be essential. I'm praying that I can keep up with the non nursing parts of motherhood, although i struggled with that even before these additions were made :)! I pray that we can avoid missing out on fun and activities for the kids because of the time that all of these things take.
I do feel overwhelmed, but i also feel honored. Honored to care for my children, and honored to know their life is full of value and potential. Honored to know their life now is so much different than it could have been... thankful to God for our blessings, and this crazy, overwhelming wonderful family.
Again I will say, if you've made it to the end of this incredibly long post, you deserve extra credit! I will take any prayers that you can send our way.
To my husband, thank you for being a shoulder to cry on "a few" times since we've been home, and thank you for all you do around our home, and for our family. Hang in there!! We can do it.
Our october is winding down... Pastor Appreciation Month, Down Syndrome, Spina Bifida and Dyslexia awareness month, and PT month... as i have said...we are so aware it hurts! Ha Ha...
I will leave you with this link... Orphan sunday is soon approaching. When I think of where my children came from, and where they may be today.... it is Gods way of giving me strength to carry on. God would probably also think it would be a good idea for me to stop writing and go to bed! So here it is... my heart... please watch....
to watch...just click...
Thanks so much for sharing. I've been wondering. I know those "surprises" all too well...it's about to make you throw in the towel. Hang in there! Get help if you can with anything you can think of to relieve a little stress. I'm praying for you!
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