Now on to Day 2 in MN

Hi guys,


Some thing’s to add to last night’s update (now that I’ve gotten a bit of rest).

Forgot to tell you that Mike had asked Dr. Whitley what he thought when he first say Trey, letting him know that we are “holding onto strings”. Dr. Whitley said (quote) that he was very excited when he first saw Trey in the hall and that he looked like a healthy, happy little boy. My first thought was, this is great news (treat the patient not the symptoms). Mike felt like he had been drowning is a sea of despair and that Dr. Whitley just threw him a life jacket (something to hold to).


The neuro physiologist we are about to meet is the leading expert in MPS related disorders and how they affect the brain. Again, we are in good hands. To add to this and to confirm it again today, we feel so much more “normal” here. People have actually heard of MPS VI, we don’t have to explain from the beginning to every different specialist we see about Trey and his disorder. Not only do they know about MPS conditions, they are leading experts in the field. We are definitely in the right place



Dr. Whitley has only seen 3 MSD patients; Trey would only be his 4th. This doctor is however, extremely well versed on this and every other MPS disorder. He knows precisely how to describe each of them and the scientific details of each.

To add to Drake’s “queasiness” from giving blood yesterday, he wasn’t sure and thought that he may have to give more due to the fact that the phlebotomist that drew his blood used a different colored vial than the rest of ours. It was for one of the tests they are performing on all four of us. He was so worried that he may have to get re-pricked to fill the correct colored vial. Luckily for all of us, everything was going to work out fine. Dr. Whitley stayed downstairs with us during this procedure and was able to confirm that this would be okay because it was him, personally that would be running the test from that particular vial.


We felt like we were give the royal treatment all day yesterday having “the man” himself walk us around and introduce our family to all involved with Trey’s health. Every single person was gracious to meet us and gave us a warm welcome (all commented on how nice the weather was where we were from –haha).



After a long day for all of us, we decided to treat the boys to a few hours at the Mall of America ~ particularly, Nickelodeon Universe. Because we had arrived so late, it was “happy hours” there. We were able to purchase wrist bands for unlimited rides at a fraction of the price. We practically felt like we were the only ones there = no waiting in lines! All three of the boys had a great time and justifiably deserved it. Did I tell you in yesterday’s email that during our long meeting with Dr. Whitley Drake and Broc entertained themselves in the room next door and were absolutely perfect, while Trey took a cat nap in the room with Mike and I? We didn’t hear a peep out of any them the entire time! They really did “earn” Nick Universe They can’t wait to tell everyone the big, scary rides they went on all by themselves and that I was way too afraid to put one foot on.

Now on to Day 2 in MN



Mike, Drake and Broc drove Trey and I to the hospital for Treys infusion this morning. Trey and I had already reached our room, looked out the window and right below our window was Mike and I boys getting into the car. Trey knocked on the window from above, Drake heard us and they all waived at each other for the longest time. It was so cute how much the Drake and Broc care for Trey and how much Trey loves his big brothers. After the long and sweet goodbye, Mike drove the boys to the city of Hinkley where they met Auntie. Hinkley is half way to Granny’s house where the boys will stay until we pick them up after the week’s appointment’s are over. They all had breakfast together (Aunties’ Mike was with her too) then Mike turned around to drive back another 2 hours to the University to pick up Trey and I from the infusion.



About the infusion, the room was an actual room with a door, a restroom and even a shower – just like a recovery room after labor. The privacy was immeasurable! Dr. Whitley wanted to give Trey his infusion without any of his premeds (Tylenol and Benadryl). I can’t tell you how happy I was to hear this. You all know I am the type of mom that doesn’t first reach for the medicine bottle when the boys are sick. I hated to give the baby these medications week after week and worried so much about the long term side effects they would have on his liver. Trey was again the “perfect patient” and didn’t have a single adverse reaction ie; elevated temperature, rash, sweats. I hope we can relay this to the AZ doctors and make this part of his orders at St. Joes (IF we are even to continue the Naglazyme infusion’s). The nurses didn’t hook Trey up to any monitors they only took his vitals through out the infusion and visually checked him for any possible adverse reactions. In Arizona Mike and I worry every single time Trey’s “pulse sock” alarm’s. Most of the time the monitor goes off it’s nothing to worry about but it’s just the thought of the “what if” every time. I didn’t feel that once today. My “at ease” feelings obviously transcended to Trey too – even with out the Benadryl, he slept like a baby for more than two hours during today’s infusion. The nurses also showed us to the “kitchen” where we were able to help ourselves to drinks, crackers and toast. We always feel so uncomfortable asking the nurses at St. Joes to get us water, that this in it self was a very nice amenity, as random as it sounds.



Trey was a big boy and gave a nice adequate urine sample first thing this morning, before his infusion then gave quite a bit of blood to run a series of tests on after his infusion. We gave him lots of orange juice just in case but of course, “true to Trey”…he was just fine.



After the babies infusion with perfect timing Mike arrived in our room. I was so happy he got to visually inspect the differences and meet the nice nursing staff. We love our nursing staff in Az but the expertise, familiarity with MPS and the amenities here are incomparable. Mike said is was like going from the NCAA to the NFL J The ladies kept talking about yesterdays visit and their meeting with our three boys and how cute they were. Trey was able to pick from a huge box of toys as we left for the day.



The rest of the day we walked around the campus then drove back to the hotel to have a nice relaxing night. Having dinner without Drake and Broc felt so incomplete~ I miss them already

Dr. Whitely called into Trey’s infusion room to talk over tomorrow’s schedule with me. As usual, he went over every procedure in detail, why he felt each was necessary, gave me the option of not having any one of them done, explained the risks of each and followed up with reiterating the expertise of all doctors involved in Trey’s care tomorrow. He gave me as long as it took and again asked that I call if I had any additional questions or if Mike wanted to go over any of this with him, since he wasn’t there. I am so impressed with this man’s professionalism and bed side manners and do I have to even say his knowledge in this field?!

Please keep our precious little man in your prayers tomorrow as he has a big day planned.



So here is tomorrow’s schedule;



Give urine first thing tomorrow morning, put on ice and bring to appointment



Arrive at main hospital at 10am



First they will put Trey under general anesthesia with a breathing tube down his throat into his lungs. Trey will be completely out and on a ventilator for about 3 hours.



Trey will have a Fibroblast (deep layers of skin - 1/8” diameter hole taken from his shoulder). Because they dig so deep, this will take about a week to heal.

Next a liver biopsy. Yes, he had one of these done at about 20 days old. We will get the results of Trey’s original liver biopsy from Dr. Notrika sent to Dr. Whitley to use to compare differences.

Then a MRI which will take pictures of Trey’s 1). head (brain), 2). neck to see if the structures around his spinal cord are compressing the neck 3). Abdomen to calculate the volume of the liver and spleen

And Finally a Spinal tap to measure the pressure in Trey’s brain. Dr. Whitley will perform this procedure. He will take a 1 ½” long needle in the center of Trey’s back between two bone’s and into the sack of fluid that encases the spinal cord to take a specimen of the fluid (a CSF) What Dr. Whitley is checking that Trey does not have a hydro cell. Finding a hydro cell would be very scary news .



We are so concerned about holding strong through the results of these tests but know we are in the best of best hands, trust these doctors and realize that this is the reason we are here… to get answers.

Love,,

Cami

p.s. the pictures will come when we return home and I can down load them to our computer…you know me I’ve take tons