Here goes with an update:
First of all - God is so incredibly good - He is faithful. I received an e-mail later Tuesday night from our doctor. Our insurance agreed to keep the hours at 16 through the end of December. They are requesting some additional documentation from the agencies of when he's on the ventilator and how much he needs suctioned. It makes me nervous because he's on the vent. less now than ever (with no naps now in the afternoon), but his suctioning actually has been more of late. He had a cold a few weeks ago and ever since then he leaks copious amounts of secretions out of his trach. Maybe it's the weather? Who knows. I am working on trying to get a contingency plan in place; we may have a few other options. I'm also looking at how many hours can we manage with if it's less after the first of the year, so we're not blind-sided if they cut again and this time don't reinstate them. We shall see. For now I feel like I can breathe again...and I'm so thankful for all of your prayers.
Now to cover why we're talking about ditropan again. Yesterday Toby had the full nine yards of bladder testing: (here is a recap of what each test does)
Renal ultrasound: ultrasound of his kidneys
VCUG: this is where they fill the bladder with a barium type substance in fluoroscopy and watch to see whether he has reflux up to the kidneys and what the bladder neck looks like (is it leaking or holding the urine in the bladder)
Urodynamics testing: this is where they hook up different electrical wires and also fill up the bladder with saline this time to see what the pressures in the bladder are.
Results:
Renal ultrasound: everything looks good.
VCUG: he doesn't have reflux. They were especially looking for the leaking this time because he has had that significant change in his bladder in the last few months. It used to be that he was dry mostly in between caths, and now he's not at all. Our cath volumes are very low (75-100) compared to before (250-350). Of course during the test, he didn't leak at all. BUT, even though clinically he didn't show leakage, he is leaking. On a good note - his bladder capacity is still excellent - it holds A LOT.
Urodynamics testing: this is where they hook up different electrical wires and also fill up the bladder with saline this time to see what the pressures in the bladder are.
Results:
Renal ultrasound: everything looks good.
VCUG: he doesn't have reflux. They were especially looking for the leaking this time because he has had that significant change in his bladder in the last few months. It used to be that he was dry mostly in between caths, and now he's not at all. Our cath volumes are very low (75-100) compared to before (250-350). Of course during the test, he didn't leak at all. BUT, even though clinically he didn't show leakage, he is leaking. On a good note - his bladder capacity is still excellent - it holds A LOT.
Surprise! - the radiologist also said that Toby has left his dysplasia meaning his hip is out of place. This is common in kids with myelo, but no one has ever told me this. Nice? huh. I don't think it changes anything - doubt they'll do surgery on it, but it's definitely something to ask about at Myelo Clinic in a few weeks.
Urodynamics: There was a distinct difference in the bladder pressures in Toby's bladder this time from being off the ditropan. It used to be that they would get high when he had about 250 ml in his bladder, now they got high around 120 ml, which means he definitely needs to be on the ditropan for now. The higher pressures mean the bladder overworks and then the bladder wall thickens. You want the bladder to be a smooth - not overworked muscle.
So, what does it all mean?
Urodynamics: There was a distinct difference in the bladder pressures in Toby's bladder this time from being off the ditropan. It used to be that they would get high when he had about 250 ml in his bladder, now they got high around 120 ml, which means he definitely needs to be on the ditropan for now. The higher pressures mean the bladder overworks and then the bladder wall thickens. You want the bladder to be a smooth - not overworked muscle.
So, what does it all mean?
Toby is going back on the ditropan. To be completely honest, I never really saw a difference off of it. He still gets sweaty, his cheeks and legs still get blotchy when he overworks himself (which leads me to believe that this is completely tied to autonomic issues in his body from his Chiari II Malformation).
We also discussed in depth the MACE and Mitrofanoff surgeries. It appears he will not need a bladder augmentation - it's big enough and holds a lot of urine. But, he will probably need the bladder neck tightened or even closed off so he won't still leak. The point of the MACE and Monti for short is to be dry clean and independent. Dr. J (whom I just love) - the urologist and I discussed at length the different between the cecostomy and the MACE to manage bowel continence. He tends to like the cecostomy better, but is willing to do the MACE for Toby because that seems to be the way we are leaning.
I'm still a little bit on the fence between the MACE and cecostomy, but am so glad to have a doctor that is willing to work with us and make the best choice for Toby. With each appointment and discussion I feel more at peace with the decision to move forward with this. I also understand the differences better, the methods of how the different procedures are done (which I won't bore you with now). Toby wants to be independent with cathing, he asks to cath himself, but sitting up in his wheelchair he can't see anything to do it himself. This would allow for that.
So, when's surgery? Not sure yet - because I need the orthopedic doctor to look at Toby's back. I think his scoliosis is getting worse. When Toby sits on the floor his rib cage sticks out horribly - his spine is very curved. I want to make sure he's not going to need rod surgery in the next 6 months-1 year before we choose to do the MACE and Monti. We'll talk more about this at Myelo Clinic with the Ortho Surgeon.
Last, but not least - Toby is going to have another sedated MRI of his brain/spine, everything either in Sept. or beginning of October. We are still seeing his eye gaze issues, nystagmus, looking out of the corner to see things, etc. The neurosurgeon wants to cover all basis (looking at syrinx, tethered cord, etc.) just to make sure the ETV is working, etc.
Whew - that is a lot of updates, but they are things that I've been processing for awhile, but haven't wanted to mention. Figured it was time to talk about all these different aspects.
P.S. Bruce is the one that thought up the saying "ditro" from a pan...because when we have pancakes for breakfast - his saying is "cakes from a pan", so we have thought of all kinds of different words we can say that are "from a pan". Just our humor in every day life! :)
We also discussed in depth the MACE and Mitrofanoff surgeries. It appears he will not need a bladder augmentation - it's big enough and holds a lot of urine. But, he will probably need the bladder neck tightened or even closed off so he won't still leak. The point of the MACE and Monti for short is to be dry clean and independent. Dr. J (whom I just love) - the urologist and I discussed at length the different between the cecostomy and the MACE to manage bowel continence. He tends to like the cecostomy better, but is willing to do the MACE for Toby because that seems to be the way we are leaning.
I'm still a little bit on the fence between the MACE and cecostomy, but am so glad to have a doctor that is willing to work with us and make the best choice for Toby. With each appointment and discussion I feel more at peace with the decision to move forward with this. I also understand the differences better, the methods of how the different procedures are done (which I won't bore you with now). Toby wants to be independent with cathing, he asks to cath himself, but sitting up in his wheelchair he can't see anything to do it himself. This would allow for that.
So, when's surgery? Not sure yet - because I need the orthopedic doctor to look at Toby's back. I think his scoliosis is getting worse. When Toby sits on the floor his rib cage sticks out horribly - his spine is very curved. I want to make sure he's not going to need rod surgery in the next 6 months-1 year before we choose to do the MACE and Monti. We'll talk more about this at Myelo Clinic with the Ortho Surgeon.
Last, but not least - Toby is going to have another sedated MRI of his brain/spine, everything either in Sept. or beginning of October. We are still seeing his eye gaze issues, nystagmus, looking out of the corner to see things, etc. The neurosurgeon wants to cover all basis (looking at syrinx, tethered cord, etc.) just to make sure the ETV is working, etc.
Whew - that is a lot of updates, but they are things that I've been processing for awhile, but haven't wanted to mention. Figured it was time to talk about all these different aspects.
P.S. Bruce is the one that thought up the saying "ditro" from a pan...because when we have pancakes for breakfast - his saying is "cakes from a pan", so we have thought of all kinds of different words we can say that are "from a pan". Just our humor in every day life! :)
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