Friday, September 23, 2011

Update

So, I had promised to update you on Wildman and I am just now finding the time.  This month has been a very "medical" month and it looks as though it will continue into next month. I should warn you that, while I have not gotten very graphic, some may be uncomfortable with my descriptions of one of Wildman's issues.

Feeling trapped in the fish bowl of medical issues!
Wildman was seeing specialists for two different issues.  The first issue, and simplest, was a murmur in his heart.  About 2 years ago, after first moving to town, we went to see the pediatrician for a cold/allergies that Wildman had.  The doctor heard the murmur (the first time I had ever been told of a murmur) and made note of it.  He said that many times when kids are sick, they can get a murmur, so we were to just listen for it.  Over the past 2 years, the murmur has come and gone, which worried the doctor.  After a previous visit this summer, the doctor stated that, at Wildman's 4 year old well visit, he would listen and determine if Wildman should see a cardiologist.  That visit came and it was decided we should see the cardiologist, so we decided to travel the hour to see the specialist so we could get in more quickly. 

The appointment took almost the full 3 hours we were told it would.  He had an EKG and, based on those results and the results of the doctor listening to his heart, he had a cardiac ultrasound.  That ultrasound has got to be one of the longest ultrasounds I have ever been part of.  Good thing that they had a movie playing, but Wildman is so inquisitive.  He was trying to find out about what they were seeing and he just kept being told to watch the movie.  That really upset me.  Why not answer his simple questions?  Anyway, after everything, it was determined that he has 2 murmurs.  One is more prominent when he is sitting and the other is more prominent when he is laying down.  We were told that they are innocent murmurs.  They won't get worse and, many times, they go away with age.  This was a definite relief!

The second medical issue is a little more personal.  I am only writing about it because I had never heard of any issues and it wasn't until another mother had a similar question posted on the Instinctual Mamas Facebook page that I felt I should write about it.  Starting in May, about a month or two after starting Wildman on cloth diapers at night, he would wake up in the morning saying his penis hurt.  This happened, off and on until the end of May.  We had gone to see Kung Fu Panda II and my husband took Wildman to the bathroom.  It was at this time that my husband noticed that there was blood coming from his penis.  We called the pediatrician and got an appointment.  This would be the first of many.

At the first appointment, we were told that this could be something normal.  That, due to it being summertime, some boys can get sores on their genitals.  We were to not let Wildman take baths, only showers, and to dab after urinating.  We did these things.  Wildman would still wake up in pain in the morning and there was still blood a few times a week.  When we called back, we got an appointment with the Nurse Practitioner.  At this time there was a white sore that would sometimes appear on the end.  She did an exam and recommended we treat it as a fungal infection.  To do a lotion regiment 3 times a day of an anti-fungal cream, anti-itch cream and triple antibiotic.  These did nothing!  So, we called again.  We are now at the end of June. 


4 year old boys don't like waiting for an answer 
At this next call, the Nurse Practitioner recommended we go have a cultural swab.  We had that done and it came back as a bacterial infection, so we started a 14 day regimen of antibiotics.  The blood seemed to stop, but the pain was still there.  I was still using the cloth diapers, making sure to strip them.  No doctor seemed to think they were the issue.  Then, a few weeks after the antibiotics stopped, the blood started again.  Once again we called the pediatrician, but they didn't know what else to do.  They recommended we see a urologist.  So, Wildman saw a urologist on August 31.  They examined for a stricture and then decided to try an antibiotic cream specific to the bacteria that had been found on the previous swab.  We got the cream and the bleeding got worse.  We used the cream for a week because I wanted to give it a chance to work, but finally I called to see if this would be normal.  We were told to stop the cream.  The urologist then felt it would be best to have us see a pediatric urologist.  It is amazing how long it can take to get an appointment.  You would think blood may speed up the process, but no. 

So, we were first scheduled at the same hospital that Wildman

The appointment didn't get moved up any.  It will actually be Oct. 6.  Wildman will have a renal/bladder ultrasound and then a VCUG.  I was told they do 2-3 of these a day and that there is a special team whose sole purpose is to entertain Wildman during the tests.  One of the tests is invasive and she said they will have a lights show and other things going on so he doesn't have to focus on the test.  After the test, we immediately get to meet with the doctor, who would also be the surgeon if surgery is necessary.

So, that has been our medical adventure so far.  In addition to those things, Wildman had one other doctor visit.  Wildman first saw the urologist on August 31 and the cardiologist on September 2.   We had a well-visit for Sweet Pea on September 1.  The evening of August 31, Wildman was helping me bake and went to smell a container that had about 10 drops of scented oil in it.  He bumped it and got the oil in his eyes.  He wouldn't let us wash them out, so off to the ER we went.  I thought having to watch a lumbar puncture being performed on Sweet Pea at 27 days was hard.  Try watching them hold down your little one to irrigate his eyes until the entire saline bag is empty.  We are ready to be done with doctors.  I know our insurance must be hating us, but the hospitals and doctors must be loving us.

So, sorry this is so long.  I wish I knew who the other mother was who had a son with pain in the morning so I could discuss more with her.  I am glad that we decided to keep being persistent instead of just letting it be at "being a summer thing".  Just one more reason I love listening to my Mommy Intuition!

3 comments:

  1. Hey! I am so sorry to hear about your son's medical problems, poor guy! I wanted to let you know that my son has a condition, he has a mitral valve leak that will need surgery to fix, so I am familiar with having heart scares! A murmur is just a sound, it is not indicative of a hole or any other problems. I'm really glad to hear that his EKG came back ok. Did they put him on any type of activity restriction?

    I really hope things turn out well with his penis tests as well! Did they tell you why he would get a sore on the tip of his penis if it is a renal or a bladder problem? That poor little guy, please let me know if I can do anything, and keep us updated! :)

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  2. Just from my medical background, I knew that a murmur was normally not something to worry about. It was how the doctor started to act about it. Plus, we didn't want there to be anything more and not investigate further. I would hate to have him play a sport later on and something happen. How old is your son? How long will he have to wait until surgery? Wildman has had surgery before, nothing as serious, and it can definitely be stressful.

    No one knows why there would be the sore. The children's hospital still thinks it could be a stricture, even though the urologist had ruled that out. The also want to see if the urethra has a reflux that could be causing urine to go back into the kidneys and damaging them, which could also lead to the blood.

    Thank you again for the thoughts!

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  3. My little guy is 2, he will need the surgery somewhere between 3 and 5, depending on how quickly it gets worse and how fast he gains weight. He's really little, only 23 pounds. It sounds like Wildman has really been through a lot in his short time! He's such a trooper, and he's got a great mom! :)

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