The Spring Break from Hell

It was a ROUGH week!!!!  Molly was sick the entire week before Spring Break and we were planning on driving to Disney World over the break.  I pretty much twisted my husband’s arm and told him we were going on vacation whether he liked it or not.  We haven’t been on a family vacation since last summer because it’s so incredibly difficult for our son.  That’s another story for another day though because we still haven’t been on a family vacation since last summer.  My daughter had some virus and her temperature was close to 104ºF, so we ended up canceling our Disney World trip because she just couldn’t shake it in enough time to make us feel comfortable taking her out of town.  Little did I know, that was a blessing in disguise.

How could a canceled trip to Disney World be a blessing in disguise you ask?  LICE!!!!  Spring Break Monday – Molly was still running a fever.  Spring Break Tuesday – Brian wasn’t feeling well and was lying down in his room trying to take a nap.  I have to stay with Brian 24/7 unless he is sleeping, so I was sitting on the floor in his room when Molly came in to get some cuddles from me.  She was lying in my lap and I was playing with her hair when I saw a bug crawling around in her hair.  I thought it was a flea and was a bit startled to see it crawling around her scalp.  By son’s service dog, Bonnie, had fleas one time last year, so I didn’t think much about it.  I was just irritated at the thought of a flea problem again.  Well I kept looking and saw more “fleas” crawling around but I started thinking about one thing Molly had mentioned the week before.  One of her friends in class had been scratching their head, and I connected those two things and immediately realized she had lice.

 

Brian at Vanderbilt

Brian at Vanderbilt

 

LICE!  It’s such a stigma and I had only heard whispered conversations about it before.  You hear of someone’s child having it and you whisper talk about it because you’re afraid if you say it too loud you may “catch it” yourself.  Previous to finding it in Molly’s hair, my information about lice was extremely limited.  I heard all the tales of having to bag up every stuffed animal, pillow, and blanket for weeks at a time (totally false information by the way).  I heard it was impossible to get rid of and kept coming back like the plague.  Well lets just say I had an entire week at home to educate myself on the subject and I’ll have to blog about that another time to help break the stigma and educate parents on the actual facts of lice.

Finding lice in Molly’s hair was disheartening, but what was even worse was realizing our ENTIRE family had lice!  By the way, another myth is that dogs can get lice from humans.  Totally false!  Lice ONLY infest human hair (thank goodness)!  I sent my husband to the store to get supplies to treat our family.  As he headed out the door, I was googling so I could tell him what to buy besides RID kits.  Mayonnaise, Olive Oil, trash bags, new brushes, shower caps, new pillows, and some other items.  This was before I educated myself on how to get rid of lice from the professionals.  He came home and only bought one RID kit, so I headed back to the store and bought more supplies.  All in all, we spent about $200.

I decided it would be too hard to get Brian to sit still while I combed for eggs, so I cut his hair to 1/4″.  We then spent the rest of the night washing tons of laundry and combing through each others’ hair.  After my husband spent a few minutes combing through my hair and finding only a few “eggs”, or what we thought were the eggs, he said I was fine.  Hahahahaha!  Not quite!  At that moment I decided Molly and I would make appointments to get our hair professionally treated and contacted “The Lice Place” the next day to make appointments.

Spring Break Wednesday – Molly and I had our hair treated for 1 1/2 hours each to get all the lice and eggs removed.  Remember the night before we had treated our hair with RID, well they still found 4 eggs in my hair and a plethora of eggs and lice in Molly’s hair.  Brian is still feeling bad and is napping almost every day.

Spring Break Thursday – Brian has been dealing with constipation his entire life, but recently more so because he’s had to be admitted to Monroe Carell Jr. Children’s Hospital at Vanderbilt two times now to have an NG tube placed to clean out fecal impactions.  The most recent was a 3 day hospital stay where it took SIX attempts to get a NG tube in him (one of those times he ripped it out before we could get the arm braces on) to pump an enormous amount of GoLYTELY down his nose into his stomach in hopes of breaking up the hardened stool.  Since his last hospitalization, we have been giving him daily capfuls of Miralax (to draw water into the bowels and soften the stool) and nightly Senna tablets (to stimulate the nerve endings in the colon and rectum which makes the muscles contract to help move the stool out of the body).  He has been on Miralax for so many years and I had heard some adverse information from parents, that I asked his gastroenterologist if we could switch to something else.  She switched him to Lactulose, but it hasn’t been working well at all.  This could be because he was already getting impacted again.  I called his GI and talked to the nurse about how concerned I was with his straining, constipation and lack of urinating.  She ordered an abdominal xray and I took him to have it done in Madison.

Spring Break Friday –  Molly and I went back for a recheck at “The Lice Place” (their treatment includes two visits) to confirm that all the lice and eggs were really gone.  Thankfully they were!  When all was said and done, I spent $500 there on our treatment and buying individual nit combs, shampoo, combing mousse and mint deterrent spray.  Yes…..$700 to get rid of lice, but it was worth every penny because there is no way I would have been able to get all the lice and eggs out of Molly’s hair as well as they did.  I invested in the bigger plan which includes a 30 day guarantee that if lice return they will remove them for free (even if all family members aren’t treated there), plus a lifetime of free hair checks.

At the end of the day, I heard back from the GI nurse at Vanderbilt about Brian’s abdominal x-ray.  Brian was indeed full of stool all throughout his intestines and would need to be cleaned out.  Unfortunately since we had the x-ray done in Madison, Vanderbilt only received the radiologist’s notes and not the actual image.  I was concerned that his blockage may be on the right-hand side like before, which is too far up for an enema to reach.  The plan was to work on the clean-out over the weekend.  We started by giving him an enema.  I knew how much pain he must have been in when he gladly laid down for me to give it to him. :(

Spring Break Saturday –  We started the clean-out on Brian by mixing a capful of Miralax with a juice box.  Unfortunately we are never able to get Brian to consume enough fluids to clean himself out, which is why he’s always had to be admitted to the hospital for a NG tube.  We were able to get him to consume a few capfuls of Miralax, but not enough.  That night we gave him another enema and were able to get some more stool out, but it still wasn’t enough.  At this point he was also retaining urine and I was getting worried.

Spring Break Sunday – Sunday morning we continued with the Miralax clean-out, but at this point he had gone over 24 hours without urinating.  I decided to drive him up to Vanderbilt to take him to the ER.  I asked him if he wanted to go to the hospital to feel better, and he said yes.  He then asked to go to the hospital on his communication device, and that confirmed my gut feeling that I needed to take him.

It’s a two hour drive for us, so I called the on-call gastroenterologist on the way to explain the situation and let them know we were coming.  The GI was so concerned with the amount of time he’d gone without urinating, that she told me to go to the local ER immediately.  I calmly explained to her that he wasn’t dehydrated and that this has been occurring for over a year now.  It’s just slowly gotten much worse.  I also explained that we have had some less than stellar trips to our local ER, and I knew the care he would receive at Vanderbilt would be better.  She was not happy with me going against her advice, but my goal was to get the best healthcare for my son.

When we arrived, the ER wasn’t busy at all and we were taken right back to a room.  We met with the ER doctor and caught him up on the current situation and Brian’s history.  He ordered an abdominal x-ray to see if the enemas and Miralax had been successful in cleaning Brian out.  The x-ray still showed a large amount of stool all throughout his intestines, so he ordered a milk and molasses enema.  Now the fun was about to begin……..

Picture this……

It’s like I’m trying to lasso a bucking bronco with the intention of lying it on the ground to put milk and molasses up his backside, all the while holding him down to keep it inside!  Ha!

When we finally got Brian on the table and got the milk and molasses enema inside him (by this point all of the hospital staff had quickly backed away from the hospital bed and I’m lying with my upper body across Brian pinning him to the bed to “try” and keep the fluid inside him as long as possible), I noticed how everyone quickly and simultaneously backed away from the bed.  They told me to try and keep him lying on the bed for 5 minutes so the enema could work as effectively as possible.  I just looked at them with this crazy expression on my face and started laughing…….5 minutes?!?!?!

Brian immediately wanted to get up and go to the toilet (because that’s how we do the fleet enemas at home), but I was trying to convince him that he needed to stay on the table.  Timers work well for Brian because he can see that there is a physical end to the task he’s being asked to complete.  I started a 5 minute timer on my phone and showed it to him.  The wonderful hospital staff (they really were great with him!!) quickly exited the room (I’m sure for privacy….ha!  Certainly not to avoid the explosion that was about to occur!!).

Brian looks at me desperate to get up (I’m with you little man!), but I keep talking to him telling him he has to stay there as long as possible……Then it happens!!  The explosion that occurred with 4 minutes left on our timer.  Fluid spills off the bed and lands on my flip flops (UGH!) and I’m about to get him off the bed when it all of a sudden occurred to me that I had to collect a urine sample so we could check for a urinary tract infection.  Unfortunately the collection cup was sitting about 3 feet out of my reach.  So as fluid is going everywhere, I leap sideways to get the collection cup, while trying to contain all the bodily fluids on the sheets.  I use my left elbow to keep Brian’s pull-up covering the flow and use my right hand to open up the collection cup.  I expertly (if I do say so myself) maneuver everything so I can catch the urine, put the lid on, remove Brian’s pull-up and get him to the toilet without making too much of a mess.

At this point I’m so stoked that I remained level-headed enough to collect urine, that I’m practically doing a happy dance as I’m looking down at my splattered feet and flip flops.  Someone came in and gave me soap and washcloths to wash Brian while they changed all the sheets on the bed (I’ll be singing that lady’s praises forever).  At that point, Brian had gone 28 hours without urinating and I was so relieved that he wouldn’t have to get a catheter!

I talked to the ER physician and we decided that I would take Brian home and continue a rigorous clean-out schedule, and follow up with a pediatric urologist, as well as Brian’s pediatric gastroenterologist.

We are back to using Senna nightly and Miralax daily in hopes of finishing the clean-out.  We went to see a local pediatric urologist, but they were so concerned (at first) with Brian going over 24 hours without urinating that they fit him in with the nurse practitioner the day after we called.  Brian had a renal ultrasound (thanks to the assistance of Versed) this past Wednesday.  We were scheduled to see the doctor the following day, but his office called and canceled the appointment because the doctor refused to see us saying he only saw surgical candidate patients.  I am beyond irritated with this local urologist and office staff because I made multiple requests to follow up with the urologist and was told I could only see the nurse practitioner.  I have NOTHING against nurse practitioners, I promise.  I see a nurse practitioner myself instead of a doctor, and I absolutely love her.  My problem is that when I as a parent am asking to see a specialist (who Brian should have seen in the first place but they wanted to get us in as quickly as possible) for my son, and am refused not once, but 4 times, there is a serious problem!  I will NEVER stop advocating for my son, EVER!

I have a child with a genetic duplication that less than 200 people in the world have……actually, make that 1.  Brian’s 16p11.2 duplication is larger than the other individuals in the Simons VIP study, and actually only comes close to matching one other person in the genetic database.  There is rarely a specialist that knows much about his 16p11.2 duplication.  After traveling to Golisano Children’s Hospital in Rochester, NY when we were stationed at Ft. Drum, I became accustomed to traveling to the best specialists for Brian’s care.  Nothing has changed since moving to Huntsville.  I make the 2 hour trip to Vanderbilt to take Brian to see his team of specialists because they are equipped to give him the best care.  Brian was born in Wiesbaden, Germany, and when I flew home to visit family in Huntsville during his first year and a half of life, I would drive down to UAB to take him to see specialists.  TMy little man has seen more specialists in his life than you could ever imagine, so when a local urologist refuses to see him, you can bet your ass I’m taking him to Vanderbilt!

Brian now has an appointment with the Chief of Pediatric Urology at Vanderbilt in one week.  His gastroenterologist has also referred him to another gastroenterologist in their practice that specializes in motility so we can discuss his chronic constipation and fecal impactions.

It was the spring break from hell…….but life is starting to settle down and we’re getting the medical help Brian needs to try and figure out what is going on with his body…….if only he could speak and tell us how he was feeling…….

NEVER NEVER NEVER stop advocating for yourself or your special-needs child!!!!!  If you aren’t happy with the treatment you’re getting, go somewhere else.  NEVER settle!!!

 

 

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