posted
My church has been praying for you. Well, generically (descriptive rather than by name), since it's kinda odd to say "Can you pray for Papa Moose, Mama Squirrel and the mooselings?"
Sunday Mooselet had the blood in his stool. Well, he pooped on Monday (at the funeral, which is a little poetic in a very strange way), and no blood, so that's good. I wanted to see a second one with no blood before I got too relieved, lest one be a fluke. Three days later we're still waiting for the next one. When it does arrive, I'm guessing Mooselet ain't gonna be happy -- he already isn't, but he's had lots of juice today and a suppository, so hopefully we'll see something soon. Still not comfortable on that topic.
Monday was the meeting with the orthopedist. According to him, Mooselet looks great. His feet aren't perfect -- the talus still doesn't point exactly where one might hope, but it's well within a fairly normal range. For the time being, no more braces. He'll go see the doc again in six months, or earlier if things start to regress again (that won't be necessary, right? Right?).
Then there was this morning. I'll spare you all the details of our travel, and just start when the doc entered the room. He took out the ultrasound films and set the report aside -- he said he prefers to see the films first, so he doesn't go in biased. He noted the same things that the report stated, except he used the term "mild" hydronephrosis -- not mild to moderate. Moderate was never used. I felt kinda good about that.
He also said there's a reasonable chance that it doesn't mean anything. If the bladder was full, it could be entirely normal. If the bladder was empty, it still might be fine, but possibly not. But since the ultrasound was of the kidneys only, we don't know. So Mooselet gets another test -- an IVP.
Mama read up on this, though I'd appreciate hearing it in layman's terms from our local expert whenever she might have the time. The doc did say that he hadn't ordered the test before because of its unpleasantness, as well as the possibility that it wouldn't be necessary. Well, since he has requested tests in the past that were already quite unpleasant, that concerned us a bit.
Essentially they inject Mooselet with a dye, then take x-rays at various intervals over an hour or so, during which time he needs to remain still and unclothed on a cold x-ray table (and he already hates those for short periods of time). This really doesn't sound like something he's gonna like. However, it is still relatively non-invasive, so I'm sure things could be worse.
I tried to pry more info out of the doc regarding possible courses of action, but he wouldn't give me much -- he's still hoping it's a harmless issue. But he said that if the results of the IVP show more blockage, he might need to go back in and remove some more tissue. There was still no mention of ureteral reimplantation, though, at least not in those terms.
So we're still in a holding pattern. *sigh* Anyway, thank you again for letting me spill my problems here, and also for the continued prayers and thoughts. They don't need to stop or anything.
I'll just keep praying for good news that everything is over and he doesn't need any more treatments.
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quote:Anyway, thank you again for letting me spill my problems here, and also for the continued prayers and thoughts. They don't need to stop or anything.
And they won't. (((Mooses)))
Posts: 4534 | Registered: Jan 2003
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Papa, my mother had an IVP this past winter. It wasn't bad at all. They did give her a sedative beforehand, though. I don't know if that is an option for Mooselet, but it helped my mother to relax and keep still. They let her wear a gown, though.
One thing - insist on having an experienced nurse or tech inject the dye. The first one who tried to inject my mother couldn't get it with 3 tries. The doctor walked in to see what the holdup was and did the injecting himself.
Y'all continue to be in my thoughts and prayers.
Posts: 3037 | Registered: Jan 2002
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posted
I know when Bob was here, I had difficulty thinking while he was eating.
Oh, a little P.S. for the last update -- two good poops today, and he'll be remaining on antibiotics at least until the doc sees the results of the next test.
posted
Yay for Mooselet. He such a little trooper... um... you know. Anyways, I hope that means he's doing better. Papa Moose, I don't know you or your wonderful wife very well, but you are both in my thoughts. I can't imagine what you both are going through, but I know where you both gain strength from... each other. All I can say is keep on going.
*Hugs* to the Moose Family
Posts: 822 | Registered: Jul 2001
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posted
Eating is a loud and dangerous business demanding complete concentration. I'm surprised everyone here doesn't know that by now. Who raised you people anyway?
Posts: 22497 | Registered: Sep 2000
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Papa Moose, I'm so sorry for leaving you hanging. I've been dealing with a few "non-accidental trauma" (read: "child abuse") cases, and it soured me temporarily on my profession. ___________________________________________
Basically, hydronephrosis (or, "dilation of the kidneys") is secondary to reflux through the ureters.** The ureters are tubes that run from the kidneys to the bladder, and ideally they let all the urine into the bladder without permitting significant backflow. Unfortunately, sometimes they are faulty and permit pressure to go back up into the kidney, which sort of stretches, compresses, and damages the tissue, to any of a range of degrees.
Posterior urethral valves are remnants of tissue (the embryonic male equivalent of the hymen) which impede flow of urine into the bladder, thus causing pressure to build up behind them. These are relatively simple to remove, and they may be the tissue he referred to for possible removal. A PUV is located at the entrance of the ureter into the bladder -- it's like a one-way valve that is directed the wrong way.
Alternatively, there is sometimes a condition of hydroureter (or, "dilation of the ureter tube(s)") that is secondary to blockage of urine flow by a kidney stone, or due to some unknown cause. Sometimes the ureter(s) affected needs to be trimmed down lengthwise and reimplanted coming in at a different angle on the bladder. The change in site of implantation uses fluid mechanics to decrease the amount of fluid that can backup and cause pressure.
Think a malfunctioning ureter as a garden hose that runs from the bladder to the kidneys (i.e., the wrong way). Stretched up as a straight pipe, things go pretty fast up through to the kidneys. Add some curve and/or a kink, and the flow slows down or stops. The buildup of pressure here is good, because the pressure buildup stretches the bladder and causes the urge to urinate.
When the pressure on the bladder was relieved by letting urine backflow into the kidneys, the proper impulse to urinate didn't come as quickly (and the kidney doesn't have stretch receptors to trigger urination, so it served as a temporary pressure sink).
Make sense? Ask questions! I can find links or explain in different words. I'll keep looking for good sites.
**Terminology notes: the ureters are the tubes that lead from each kidney to the bladder. There are usually two. The urethra is the (usually single) tube that leads from the bladder to the outside, e.g. to the tip of the penis in boys.
XRays of these parts are generally ordered as a "KUB" view (kidneys, ureters, bladder).
The VCUG procedure is a "voiding" (watches radiopaque urine flow outward) "cysto" (means "from the bladder," like cystitis is inflammation of the bladder) "urethro" (through the urethra) "gram" (study) to rule out VUR, or "vesico" (also means "from the bladder") "ureteral" (back up through the ureters) "reflux" (the backwards flow part).
We usually use sedation for the VCUG, as it is uncomfortable. Often we use midazolam, which takes away some of the anxiety and adds some retrograde amnesia, so that most often the memory is hazy (or lost) from about 1/2 hour before the medication was first started.
posted
Hopefully nothing new until the next test -- not yet scheduled. We're still waiting for the referral. (Anything new before that test would be bad.) We will update when we know more, but thanks for thinking of us.
posted
*Update, though "downdate" is perhaps more apt*
Ok, for those curious, we got the results of Mooselet's most recent test. We're still waiting for approval from the medical group to make the appointment with the urologist, but hopefully that will happen this month. (Insert -- just got an e-mail from Mama, and the appointment is scheduled for 2/12, but we hope for a cancellation so we can move up. She's pretty unhappy about that, too -- she had to asterisk-out some words. Anyone who has met Mama knows how severe that is.) The highlights of the results:
quote:INDICATION: Hydronephrosis.
TECHNIQUE: After obtaining a scout film and following intravenous injection of 20 cc of Isovue 300, sequential images are obtained of the kidneys and collecting systems.
FINDINGS: There is symmetric and immediate visualization of the kidneys. They appear to be of normal size. The collecting systems are, however, abnormal with moderate hydronephrosis bilaterally. Megaureters are, however, identified to the bladder bilaterally. The bladder is irregular inferiorly due to prior surgery.
SUMMARY:
1. Marked ureteral dilatation with distention of the ureters from the kidneys to the bladder.
2. Moderate hydronephrosis.
3. Bladder deformity.
4. Chronic reflux +/- outlet obstruction is to be considered.
I don't know what all of it means, but I googled "megaureter," and wasn't exactly comforted by what I read. Probably the most frustrating thing is that many sites seem to indicate that problems like Mooselet has had can be diagnosed in utero, but apparently our ultrasounds were too rushed and so they weren't caught, which is why Mooselet (and Mama and I) went through the unexpected hell we did, rather than an a more expected purgatorial experience. But that's moot now, aside from the fact that I'm going to demand a far more thorough ultrasound for any future children.
The doc who did the test showed us the films, and the ureters were certainly noticeable. He said they were dilated so much that they essentially had the capacity of a second bladder. How this will affect potty training I don't know, but it's almost definitely the cause of the UTIs. The hydronephrosis was on both sides this time, so it may be enough of an issue to begin threatening the kidneys again, and it's possible (if not pretty much inevitable, if I might read between the lines) that surgery will be necessary again. *sob*
We'll keep you updated.
Oh, Mama mentioned something to me recently that I didn't know. After the last meeting with Mooselet's orthopedist, he said things were looking great. She heard him speaking into his little digirecorder, however, and it sounded to her like a repeat surgery might be necessary there, too. *sigh* When it rains, it pours, I guess. We'll try to stay optimistic there, too.
posted
I'm so sorry to hear that the news isn't great. I really admire the strength, courage, and optimism with which you guys are able to meet these challenges. I will continue to pray for you. *giant hug*
Posts: 5879 | Registered: Apr 2001
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You have Strength (yes, with a capital S), Meeses, and continue to be an inspiration to me. Not exactly a panacaea for what you are going through now, but I wanted you to know how I felt.
I'm hugging you and praying for you and sending you good thoughts.
Posts: 1545 | Registered: May 2002
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posted
Did little Mooselet have an IVP (is that the most recent report listed)? Or was that a report from some prior study?
We do IVPs (admittedly almost exclusively on adults) at Duke...we do plenty of VCUGs on peds patients, but I've not seen many IVPs ordered on the kids. Most of what we do in those cases are abdominal CT scans...but the IVPs, while not fun, aren't that bad either. The little guy shouldn't be too traumatized, after all the posts describing what he's already been through.
If prayers help, this little man's got a ton of people on his side pulling for him...
(CT, a quick question on the side: what hospital do you practice at, where sedation's commonly provided for VCUGs? I've asked for that several times at UNC and at Duke, but we rarely administer any sedation prior to beginning a study. CT sedates before most of their exams, but under normal fluoro the techs & radiologists just seem very opposed to it for whatever reason)
Posts: 148 | Registered: Aug 1999
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posted
I will continue prayers for your family. Hang in there. Medical things with our kids are the hardest. Don't overly worry about the Doc's dictation (talking in that recorder thing ) Those reports have to cover everything in today's sue happy world. If you are concerned you can mention that you were unsure about future surgery and can he clarify. Stay strong and have faith. I am sure the Lord has your family in his hands and is helping you.
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Papa Moose... you and Mama Squirrel amaze me. You are dealing with this AND a new baby. All I can do is add my support to the rest. Stay strong and full of love.
((((Mooselet and his wonderful family))))
Posts: 822 | Registered: Jul 2001
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I would like to add something to what has been said, but all I can say is you have my prayers and best wishes Mooselet.
Posts: 11895 | Registered: Apr 2002
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You see, I even want attention when I'm not around, hound that I am, but as long as you folks keep indicating that you care, I'll keep posting.
I've been pretty much unable to spend any time at Hatrack the past couple of days. Mooselet probably has the flu, but the doc didn't say for sure. What we do know is that Friday evening he started throwing up, and he was pretty much unable to stop (not constant vomiting, but repeated, dare I say it, ad nauseum). He couldn't even keep water down, and was vomiting bile because there simply wasn't anything else in his stomach. He also had some diarrhea, apparently, at some point during the night. I stayed in his room that night, so I could be on the spot quickly if/when he threw up, so between some six or seven separate times vomiting, I got maybe an hour of sleep.
We saw a doc on Saturday, who prescribed Phenergan (promethazine) to help keep him from throwing up (anything else we should know about this medicine, oh ye who know?). (Side note, which I found humorous, and I need humor to get through this. It's in suppository form, and because he's so small the dose needs to be half-strength. The humorous part is that the prescription says "1/2 suppository per rectum every 4 hours." Per rectum? Do they honestly have patients with more than one?) Anyway, we've only been able to give him water and diluted gatorade or apple juice, and only in small quantities. He doesn't really have the energy to cry, but whimpers pretty often when he's not sleeping. He's hungry, and we can't give him food.
["Too much information" section, skip if you wish]
In addition to helping him not throw up, apparently this medicine encourages the bowels to empty themselves entirely. During his sleep after the first 1/2 suppository, he had an unbelievable episode -- I went into his room while he was still asleep, and I could smell that something was wrong. Upon examination, his diaper looked as though someone had applied feces with a trowel, and done so over the entire inside surface, all the way from mid-back to bellybutton. It was also on his shirt, shorts, and sheets. We had to wake him up, wipe him down, then gave him another bath (he'd had one the night before, just before throwing up the first time). Between the vomiting and this, we went through five sets of sheets, two mattress covers, three towels, and several burp cloths, and the shirt we just threw out.
[/TMI]
So my mom was visiting during the past few days -- not quite the visit she was expecting or hoping for, really, but she's still glad she was here, as were we. I'm sure (in that optimistic everything-will-be-ok-eventually way) that Mooselet will be fine, but it's not pleasant for any of us. As usual, prayers are appreciated and welcome.
While I appreciate most the prayers for Mooselet, I could really use some myself. I've felt this before, but I forced myself to verbalize it this time both to my wife and my mother. The reality is that when Mooselet gets really sick like this (like the first time he went to the E.R.), I'm far more scared than I usually admit. I try to stay strong, especially for Mama, but the truth of the matter is that I fear that one of these times, Mooselet simply won't wake up. I'll sometimes wake up in the middle of the night, and I feel a need to go into his room to verify that he's still breathing.
It's not a problem I've had most any other time. Mama's never been that sick, at least not since I met her, and Superstation has been fine, too. I've never cared as much whether or not I die, except now for Mama and the kids' sake, and I've never had any anxiety about industrial accidents or car crashes, but a severely unhealthy child is nearly paralyzing to me.
Friday night, when he kept throwing up, I lay awake in his room wondering what I would say in a Hatrack post announcing that Mooselet died. It's a morbid thought, I know, but that's what I was thinking. Oh, and I don't know how many people here watch Joan of Arcadia, but we had recorded it on Friday and watched it yesterday afternoon, and I nearly lost it then, too. In case people haven't seen the episode, I'll say no more.
Anyway, I'm gonna go ahead and ask specifically for prayers on my behalf regarding this issue. I don't ask that often for things on my own behalf, I don't think, but this time I am. It's still sort of on others' behalf, since I'm a more pleasant person to be around when I'm not dwelling on death, but that's probably as much or more an after-the-fact justification as it is a reality.
A little good news in the mix -- any good public speaker* knows you're supposed to end on a high note -- we got his appointment at Children's Hospital moved up three weeks to January 22nd, so the anxiety and agony of not knowing won't be so prolonged.
Good heavens -- I'm sorry this was so long. Why do you people listen to me? Well, until next time....
--Pop
*As I was growing up in a relatively Christian environment, I remember a frequent question asked of me and others was what my/their favorite passage of scripture was, and I was surprised at how many people answered the "Sermon on the Mount." I'm sorry, but that is a downer of a speech. One of the things I remember about it is how it ends on such a dour note, and I would occasionally wonder how Jesus got the job he did, what with being such a poor public speaker.
Posts: 6213 | Registered: May 2001
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posted
2 and a half. The doc suggested the gatorade because Mooselet simply won't drink pedialyte. Of course, he doesn't much like the gatorade, either. The Phenargan are 12.5 mg, but he only gets half of that per dose. Is there a mixing issue between these things, and we shouldn't be giving him gatorade at all?
As a side note, the doc was originally going to give him another medicine that would (if I recall correctly) block his bowels -- probably to prevent what happened yesterday -- but because of his history decided against it.
(I always love it when you say something, because hearing from a doctor who I know cares, even one whom I've never met in person, means much more to me than whoever is on call at the emergency clinic.)
posted
I will continue to pray for Mooselet, and pray especially for you.
I hate being across the country when friends are sick. I want to be there and bring you guys dinner or help clean up so you can get some rest. I want to hold Mooselet and give you and Mama a hug.
Instead I’ll offer this (along with virtual hugs and real prayers) – did you know that the phrase “Fear not” or “Be not afraid” is repeated over 70 times in the Bible? Pick your favorite one and hold on tight.
I particularly like Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters I will be with you; and through the rivers, they shall not overwhelm you; when you walk though fire you shall not be burned, and the flame shall not consume you.”
You’re walking through fire, trying to be strong for your family, and though it feels like you’re being burned, I know you won’t burn up. You will have the strength you need.
Posts: 9866 | Registered: Apr 2002
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PapaMoose, I can't even think of Mooselet as "sick" having met him and seen how happy and lively he is. Knowing all the trouble he's had and is going through, I still can't picture him as ill. And yet I know how it must be eating you up inside, and MamaSquirrel too. You two are so strong in your relationship and in your faith, that I for one tend to think that you are by far the best parents Mooselet could have. If anyone could see him through this, you both can.
On the other hand, of course, you aren't super-human. And I send my prayers for you to be as strong as you need to be and for Mooselet to get well soon. And for MamaSquirrel and Superstation too. But mostly for you this time...
I wish I could be there to help. I'm not that keen on cleaning up explosive diarrhea, but I could at least try to help.
Glad your mom was there to lend a hand too.
Posts: 22497 | Registered: Sep 2000
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quote:We saw a doc on Saturday, who prescribed Phenergan (promethazine) to help keep him from throwing up (anything else we should know about this medicine, oh ye who know?).
It works well, but we generally do not use it for kids here. That doesn't mean you can't -- I've seen it usde in the ER -- but I'm not so familiar with it.
quote:The humorous part is that the prescription says "1/2 suppository per rectum every 4 hours." Per rectum? Do they honestly have patients with more than one?
*grin People have been known to take it by mouth; i.e., mistakenly eat it.
Prescriptions are rife with old Latin terms. To write a script, you include the name of the drug, the concentration, the amount to take, the route (PO = per orum, Latin for "by mouth"; PR = per rectum; IV = intravenous; IM = intramuscular; SC or sub-q = subcutaneous, or "under the skin"), how frequently to take it and for how long, and then how much for the pharmacist to dispense.
quote:Anyway, we've only been able to give him water and diluted gatorade or apple juice, and only in small quantities. He doesn't really have the energy to cry, but whimpers pretty often when he's not sleeping. He's hungry, and we can't give him food.
Gatorade is electrolyte-balanced for adults, and it isn't so good for children. the sodium/potassium concentrations are off. Have you tried pedialyte liquid or popsicles? (pedialyte = gatorade for the younger crowd).
Popsicles are good because they force you to take in the liquid slowly.
quote:In addition to helping him not throw up, apparently this medicine encourages the bowels to empty themselves entirely. During his sleep after the first 1/2 suppository, he had an unbelievable episode ...
Probably just the rectal stimulation of inserting a suppository. Any dilation of the GI tract stimulates further dlation farther down as well as contraction in the area before it. The muscles of the GI tract have a vast neural network of interconnections and feedback loops.
quote:I'm far more scared than I usually admit. I try to stay strong, especially for Mama, but the truth of the matter is that I fear that one of these times, Mooselet simply won't wake up. I'll sometimes wake up in the middle of the night, and I feel a need to go into his room to verify that he's still breathing.
The real problem is dehydration, and there are ways to take care of this. Would you like me to talk you through it? Would you like my phone number (you could call in the middle of the night)? I'd be happy to help in any way I can.
Posts: 14017 | Registered: May 2000
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quote:2 and a half. The doc suggested the gatorade because Mooselet simply won't drink pedialyte.
Was the doc a pediatrician, or was he family med / just ER? I'm not happy about giving gatorade to kids.
Pedialyte tastes nasty and salty. There are two good ways to get pedialyte into kids: first, use popsicles or freeze it yourself into a slushy mix and feed by spoon. Everything tastes better frozen. Also, you can mix it 1/2 & 1/2 with juice, instead of mixing juice with water. Try white grape juice instead of apple juice -- apple juice tends to promote diarrhea, as it has a substantial amount of pectin (a sugar that osmotically retains fluid in the GI tract).
quote:Is there a mixing issue between these things, and we shouldn't be giving him gatorade at all?
No mixing problem that I know of. If you can't get him to take
quote:As a side note, the doc was originally going to give him another medicine that would (if I recall correctly) block his bowels -- probably to prevent what happened yesterday -- but because of his history decided against it.
I think that's a good call. Where I trained, we never give anti-diarrhea agents to kids.
quote:I always love it when you say something, because hearing from a doctor who I know cares, even one whom I've never met in person, means much more to me than whoever is on call at the emergency clinic.
Delighted to help in any way I can. It makes the training having been worthwhile.
I'm serious about phone consults, any time.
Posts: 14017 | Registered: May 2000
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quote:No mixing problem that I know of. If you can't get him to take ...
Let me finish that thought. If you can't get him to take pedialyte at all, try some nice-tasting broth. Clear chicken or beef broth is relatively easy on the stomach, and you could probably mix the unflavored pedialyte with that to mask the taste.
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at Bob)![[Wink]](wink.gif)
) Those reports have to cover everything in today's sue happy world. If you are concerned you can mention that you were unsure about future surgery and can he clarify. Stay strong and have faith. I am sure the Lord has your family in his hands and is helping you.
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Also, you can mix it 1/2 & 1/2 with juice, instead of mixing juice with water. Try white grape juice instead of apple juice -- apple juice tends to promote diarrhea, as it has a substantial amount of pectin (a sugar that osmotically retains fluid in the GI tract).
