Day #3-MN

June 29, 2011
Today started out with a lot of fun and anticipation. Trey probably asked me 10 times what time it was, he was so excited to take the tour of the Metrodome before our day of doctors and tests started.
The tour was very interesting for Mike and I with all the facts that were given about the teams that have played in the dome along with the detail and video of the September 12, 2010 roof collapse. Trey had a tough time trying to figure out how that huge space of plywood and construction trucks could possibly be the Vikings football field. Ok so… what an old stadium.
It’s hard to imagine anything less than the Uof Phoenix Stadium where the Cardinals play in this day and age. Still, cool to see none the less. Trey was given a keepsake piece of the original dome/ roof and a Minnesota pin. We are very happy our hotel was so close to the field and to be here on a day when the tours were given.
Our first test of the day was a very successful audiology test in which Trey promised to do his best. Trey wanted Mike to go in the testing booth with him and even Mike agreed that Trey was very cooperative and followed all instructions given. Up until today we have yet to get an audiology test that any tech. thought Trey participated in enough to consider “usable” data.
During our first doctor appointment, we were told that Trey had a “mixed hearing” loss in both ears. His inner ear (sensory neural) is where his greatest loss was although he also has conductive (bone) hearing lossl which is why we were told he had a “mixed loss”. Trey is in the mild-moderate range of loss in which the doctor projected 30-50% of what Trey hears is garbled. Dr. Rimell (ped’s otolaryngology) informed us that both of Treys tubes are in place, that the one in his left ear was not functioning correctly but even still, both ears tested in the below average range. After a lot of questioning and giving situational examples to Dr. Rimell, the doctor recommended hearing aids and wrote us a prescription for a set. We were warned that hearing aids are not cheap and can run $1,500 per ear (not pair but ear). He advised us to do a lot of researching and even explained that although Trey really only has to wear them for school, he will most likely want to wear them 24/7. And lastly, Dr. Rimell told us that most children with this amount of loss do not do well in school and are even known to fail a grade. With that, he said to expect Trey to do much,much better in school and to anticipate one happy child when he realizes the benefit of hearing 100% of his surroundings.
Funny side note-Trey asked me to help him style his hair in a faux-hawk today. The funny part is he has gotten so many comments about how cool of a hairdo he has…he is eating this up!
A huge thank you to Auntie Missy and Mr. Brad for picking up the boys’ suitcase this morning. As luck would have it Missy and Brad are in town visiting Brad’s family and are headed to his parent’s cabin up North, 12 miles from Granny’s house. Now Drake and Broc don’t have to live in the one outfit they had with them (although I’m sure they will live in their bathing suits once they get their suitcase anyway). By the way, Uncle Steve and Camryn are still stuck in Phoenix and will never fly standby again on a holiday week…glad I didn’t choose to wait for them to bring the boys’ their clothes.
Echo-As soon as Trey saw that he was getting an Echocardiogram he says, “Is this the jelly?, I like this!” I could have sworn that he said the exact same thing last year. And how adorable is this? As we were listening to the beat of his heart Trey looks at me with the sweetest smile and asks if I hear his heart when all of the sudden the sound stops and Trey immediately looks up to me and says, “Mom, did he stop it?” with a smile I respond with, “No, Trey he just turned off the sound”. Trey and I exchange a look that I wish I could freeze in time…his innocence is so special. And being silly as Trey like to be, he asks if he could have his jelly (the gel they use on your skin when doing echo’s and ultrasounds) cold. The gentleman tells Trey to come back in the winter and he’ll be sure to get him cold jelly.

As my stomach is in complete knots awaiting the results from the Echo and anticipating the EKG, I get a text from my bestest friend saying that she is “holding my hand”…what perfect timing for such loving words.

The EKG is done and Trey requests that I do not take off the conductor sticky pads and will only allow nurse Connie because she has an orange smelling oil that is nicer than mommy using nothing and just ripping them off.

The results are in and Dr. Braunlin (peds cardiologist) gives us lots of good news;
-The function of Trey’s heart is normal
-His ejection fraction is 70% (anything above 50% is normal) and word for word “the best I’ve seen all day”-that includes non- MPS patients
-Lung pressure is normal
-Valves are normal
-No leaking
-No narrowing
Of course after hearing that Trey’s heart valves are “normal” Mike and I both question Dr. Braunlin. Last year in our face to face appointment following the EKG and Echo Dr. Braunlin reported that Trey had an “A+ organ” but when we returned home to read the interpretation of the tests, it said that Trey had mild thickening of his heart valves. I was a mess for a long, long time. Mike and I didn’t have the luxury of asking all the questions that came to mind (standing by ourselves with the letter in hand) as we would have had this news been told to us at our MN appointment. Because I didn’t know or understand exactly what this news meant for Trey, my mind began to think the worse…human nature. So this time you bet we had questions. Dr. Braunlin explained that reading the tests are subjective, that Trey’s readings look really good and that the tech said had he not known that Trey had MPS, he would never, ever know better by the looks of Trey’s heart. She said that once they know the patient has MPS they question, “normal, not normal, normal, not normal.” With that, Dr. Braunlin told us there was no need to schedule yearly appointments with her and that we would see her in two years!
With tears in my eyes, I hug Mike and then Trey and tell him I am so happy and he says he is so happy at me for saying that-doesn’t get better than that!
Dr. Braunlin talks to us about what she had learned about MPS in relation to Enzyme Replacement Therapy (ERT) and even showed us a medical article stating (with pictures) the astonishing benefits. She asked Mike and I if we had an MRI scheduled and said that the doctors are now recommending that an annual MRI be given to MPS patients to check the laxity of the head and neck…mental note to subtract the EKG and Echo and to add the MRI for next year.
Talking about the ERT for MPS IV, Dr. Braunlin asks again how Trey was misdiagnosed. As painful as it is relive, we know how important it is to let all doctors know so that just maybe we can prevent others from going through what Trey went through. Our story rings a bell…Dr. Braunliln says that Trey’s story has made a huge contribution to the protocol of diagnosing MPS disorders. That because of Trey’s misfortune, now when a child is diagnosed with an MPS disorder, the doctors are not to stop at that, they are to test for every MPS disorder to make certain they have the correct one. We leave with the ability to breathe normal…thank God for good news!

We were finished with the tests and appointments and it was still light out (doesn’t get dark until 8pm) so we decided to drive by the new University of Minnesota Golden Gophers Football Stadium. Trey refers to the Uof M as “his team”. He feels a connection to the team seeing the “Uof M” logo for years (after so many visits to his doctors here at the U) and had a huge interest in this field because he has watched it be built each time we visited. We parked in the stadium lot and walked the entire perimeter hoping it would be open or that we could get a good view of the field or even be able to take note of when they gave tours…maybe we’d be lucky enough to be in town and not have a doctor appointment when the tours were given. Mike mentioned that he had wished that we would run into an old man that would see us and Trey and let us in for a peek of the field.
No luck, but we did get a few pictures and as I could only imagine, Trey got to see the field up, top of Mike’s hands (pushing him as high as he could go for the best view).
We walked around the campus and then to our favorite sub place “Big 10” on Campus”. We were told that there was a portion of the football stadium that is always open to the public known as the “Hall of Fame” but that is may close earlier in the day. On our walk back to the car, we decided to see if we could find the “Hall of Fame” and if nothing else take note of the hours of operation…again, no luck. As we were headed back to the car I notice a man with a walkie- talkie and a lot of keys and asked him if he was the security guard and about this “Hall of Fame” area. Mike begins to tell him about Trey’s “connection” to the Uof M and wouldn’t ya know J.B. moved to Minnesota from California for his son’s heart condition and the reputation of the cardiologists at the Uof M. J.B. asked if we would like to tour the field, the coaches’ lounge and the players locker room? Are you kidding??? This is just (well almost) what Mike had wished for… things that only happen in the movies. Now that is a field!!!
And talk about player locker rooms…an amazing recruitment tool indeed…impressive to say the least! To top it off, J.B give’s Trey a Nerf Viking football of which he was tremendously happy to accept.

A long day, a fun day, a day filled with lots to take in but not too much for us to handle. Two days down, two days to go. Tomorrow is another nail biting day with a visit to the spine doctor…please keep Trey in your prayers for a straight spine, a straight spine, a straight spine.