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Wednesday, August 14, 2013

Walkin' and Talkin'

Parker had a great day in therapy today!  He took several steps in a row without too much support and I caught it (or at least most of it) on video. 

He does get around wherever he wants to go in his gait trainer but that offers quite a bit of support and he doesn't usually take steps the correct way.  However, today he did wonderful and we are so proud.  GOOD JOB PARKER!!

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Friday, August 9, 2013

Parker's First Big Road Trip and MAYO Clinic

A few weeks ago, Parker was admitted to Children's Hospital with his first Urinary Tract Infection and an Upper Respiratory Infection.  We knew about the UTI prior to the hospitalization and had just started a new antibiotic for it when he started having respiratory problems.  We wasted no time and drove to Omaha as we feel the care and knowledge base is better there.  Since we caught everything early, he was only in the hospital for two days before getting to return home.  He did get pretty sick in that couple of days though and his fever got up to 105 degrees which was scary!


While in the hospital, Parker's Urologist did a consult at our request.  We knew Parker was at risk for UTI's because of his bilateral Vesicoureteral Reflux.  This is when Parker's ureters don't function as a one-way valve like they should and instead allow the urine to go back up into the kidney's which causes Hydronephrosis (enlargement of the kidneys).   Although he has the reflux issues, he had never had a UTI before which his Doctor's always seemed very pleased about so we weren't expecting to get a recommendation for surgery after just one UTI.  However, that's exactly what the Urologist recommended.

Due to some pretty significant inconsistencies in the Urologist's recommendations from one day to the next, his surgery recommendations and his bedside manner, we did not feel comfortable scheduling Parker for surgery without getting more information.  We decided to get a second opinion and the next closest pediatric Urologist that participates with our insurance was at MAYO Clinic in Rochester, MN.  So...we made an appointment and got ready for the biggest adventure Parker had ever had.

Somehow or another, Paul managed to get everything we needed packed tightly into our minivan.  It's crazy how much we had to pack.  We really had no idea how long we would be gone because we didn't know if Parker would be getting surgery or not during our visit so we prepared for it all.  It really looked like we were moving!


We left on Sunday, August 4th at noon and arrived at our hotel in Rochester at 9:30pm that evening.  We came up with some ingenious ways to keep Parker occupied during this long day.  Since we don't have a built in DVD player and Parker likes to throw things that are set in his lap, we tied the iPAD up to the hand holds in the van at just the right distance for him to see his movies.  He thought it was pretty great.


We stopped quite a few times including twice to change poopy diapers.  One of these times required us to take an exit in the middle of nowhere so we ended up changing his diaper on the side of the road right next to a corn field.  Good times, I'm telling you. 

After unloading the car and getting all of Parker's equipment set up we finally all got to bed around 12:30p.  We could've slept for an entire day but we had to get up bright and early because our first appointment was at 9:00a the next morning.

We were truly amazed by the size of MAYO.  It was a beautiful, well-maintained campus with huge buildings and very friendly staff.


We went up to the 19th floor up the main MAYO building and took a picture.  How beautiful!

We did manage to get where we needed to go for Parker's first appointment on Monday morning.  We spent a great deal of time with the Doctor's nurse who did a very thorough history and assessment on Parker.  Then the Doctor came in.  He did a better job of explaining Parker's diagnosis than anyone else had.  He said he agreed that Parker did need surgery but told us he would recommend the less invasive option.  He said the success rate was 70% whereas the more invasive, open procedure was closer to 90% but putting Parker through an open procedure would be a lot for him to go through and a much longer recovery time so we should try for the less invasive procedure first.

We felt like he really considered the benefits and risks of each procedure while considering Parker as a whole person.  Parker is a complicated little guy with much going on in many different areas of his body so the less invasive option was better in his case - maybe not everyone's case.   We appreciated that the Doctor considered all of this and were comfortable with his recommendations. The Doctor also made changes to Parker's prophylaxis medication by discontinuing the 2 antibiotics he is currently on and recommending 1 different one instead. 

The Urologist had recommended surgery but agreed with us that getting input from Neurosurgery would be helpful first.  We have received two very different opinions regards Parker's spinal cord.  The local Omaha Doctor says Parker has a tethered cord and would recommend surgery to try and correct it.  Due to my Mommy-gut feelings I decided to send his scans to a well-known Neuro-surgeon at Boston Children's Hospital a couple years ago.  He had the opposite opinion and said Parker doesn't appear to have a tethered cord and would not recommend surgery unless he had clinical symptoms (which he doesn't).  So...we've held off on surgery but wanted another opinion to make sure the spinal cord issues weren't playing a role in Parker's kidney/urological issues. 

Luckily, we were able to get in to see both Neurology and Neuro-surgery during our visit at MAYO.  We did have to wait a couple of days but we were OK with that. We were impressed with both of theses Doctor's and were especially grateful for the amount of time the Neurologist spent with us. She went over the MRI images with us and provided us with detailed explanations and education that no Doctor has ever done before.  It was really helpful and much appreciated.  The Neurologist even took the time to send Parker's scans to their pediatric radiologist to get another opinion.  All three of those Doctors agreed that Parker does NOT have a tethered spinal cord and would not recommend surgery.  He does have a cyst in his spinal cord but since he doesn't display any clinical symptoms that would suggest this is causing any problems, they would not recommend any surgical measures at this time.  They do recommend yearly MRI images to keep an eye on things but no other measures are necessary.

This was a huge relief for us and made us feel good that we held our ground and didn't agree to surgery with the local Neurosurgeon.  Since the spinal cord issues should not be causing any of the urological concerns we are free to proceed with scheduling the surgery with the MAYO Urologist.  Now I'm just waiting to find out the date for that but it should be within the next month or two.

When we weren't at MAYO Clinic for Parker's appointments, we kept busy doing other things.  We did watch a fair amount of HGTV since we don't have cable at home.  This has inspired me to want to put up a backsplash in our kitchen among many other household projects that I can add to our really long to-do list.  But other than that, we also drove around Rochester and took in the sights a bit.  It was a beautiful town with amazing architecture and a rich history.  We did visit the Plummer House which was built by one of the first MAYO Physicians and although we didn't get to tour the inside we did enjoy walking around the grounds.



 


We also drove by the Mayowood Mansion.  It was pretty remarkable to see but we chose not to take a tour because it is not yet handicap accessible so we couldn't take Parker's fancy stroller and his equipment.  We did enjoy walking around Silver Lake which is close to MAYO.  It had the cutest little bridges with a beautiful walking trail and flowers everywhere.  It was pretty but my allergies really flared up.




In addition, we celebrated Parker's 3rd birthday during our trip.  It wasn't ideal to have his birthday in a hotel away from family but we made do.  He opened up gifts...


and then went "swimming" for the FIRST time.  Taking a child with a trach to the swimming pool is scary.  However, there was nobody using the kids area of the pool in the hotel so I convinced Paul we could manage this adventure safely.  We just kept his trach covered and his upper body out of the water at all times and he had such a wonderful time!!

He loved splashing and having Daddy help him "jump" in and out of the water.  He even took several steps without us prompting him to do so when his legs were in the water.  We just need to figure out a safe way to do water therapy with him and I think he would take off!

On our last evening in Rochester, we went to a very large handicap accessible park.  Parker really enjoyed his time there and played on a lot of the equipment.  


On the way home, things went fairly smoothly except that Parker had a pretty big blow-out towards the beginning of our trip which required his shorts be thrown away as neither Paul or I wanted to clean them out.  Other than that, things went pretty smoothly.  We did stop several times again but did make better time on the way home than we did going there.

All in all it was a successful trip and I think we have decided to start seeing both Urology and Neurosurgery at MAYO versus continuing with those specialists locally.  Seeing top-notch physicians with good bed side manner at a world-renowned facility gives a person great peace of mind and we feel more comfortable proceeding with them from here on out...even if that does mean more crazy road trips in the future.

Also, I want to say a special Thank You to my brother (John), my parents, Paul's parents, Paul's sister (Taryne), and Paul's aunt (Kathy) for watching Alexa this week.  She had a wonderful time with all of you and feels extra special to have so many people to love her when Mommy and Daddy are gone.  We are one blessed family!!!