Vascular Lesion Clinic

*Warning....LONG POST! I like to document these appointments for future reference.

Today, we took Gavin to Riley so he could be part of the vascular lesion clinic. The ride up went very well. We made great time and even stopped for a picnic lunch at a rest stop. We let Gavin play for a bit to stretch his legs. When we got there, we were running early. We kept Gavin busy playing games on a computer, taking wagon rides, looking at magazines, and playing with the toys. He did very well considering it was his nap time and we didn't get called until 45 minutes after our appointment time.

When we finally saw the doctors, our room was full! There were 5 doctors, 5 or 6 residents, nurses, plus us and Gavin. He was such a good boy! He hid from them at first because that is what he does all of the time when someone comes. He sat in the chair and let all of them touch him. He did whatever they asked and didn't make a peep. I was so proud of him!

I was super nervous for this appointment, but it was very productive. The doctors had reviewed his MRI from last year. One doctor (I'm not even sure of his name or specialty, but Brian thought he was from internal radiology) told us that Gavin had a Klippel-Trenaunay Syndrome (KTS). Basically, it means he has a large vein that goes from his foot to his pelvis. That explains why he has visible veins on his right foot and not his left. All of us have a small version of this as a fetus, but most of them go away. Gavin's did not. There are a lot of things that go with this, but basically they were trying to find out if it is “high flow” or “low flow”. The flow has to do with the blood flow and how much pressure it is putting on the vein. Based on that, treatment options can be decided. There was a lot of discussion. It was decided that for now, an ultrasound should be done to get a different look. The tricky part that is unique to Gavin is that the birthmark is often hotter than the rest of his skin and there are now white patches in the birthmark. The white patches are an indication of restriction, meaning he isn't getting proper blood flow.

Dr. Haggstrom ordered the ultrasound. Her nurse, Melissa, will be calling me at the end of the week to schedule it. Dr. H said if are any abnormalities at all, she will order another MRI. The ultrasound is going to be done at Riley. She also said that she wants to see us in 6 months, if not sooner. She doesn't feel comfortable waiting any longer than that.

During the appointment, I brought up the fact that he was recently referred to an ENT at Riley. They asked me who it was and when I said Dr. Matt, they said, “He's right here!” We were so happy to see him. I had called his office a few weeks ago to see if he was part of this clinic or if we could get in to see him today and they said he was on vacation.  They said he normally isn't a part of the clinic, but happened to be there this day.  Dr. Matt did a separate visit where he looked in his ears, nose, mouth, and felt around his throat. He said he could do a small scope today, but that he didn't think he would be able to see what he needed to see. He decided the surgical procedure needed to be done.  It is basically an exploratory surgery, but if they find something wrong and are able, they will fix it on the spot.  I can't remember the exact name, but it is what Dr. Wahle told me about and the reason for the referral to Riley in the first place. I didn't hesitate at all to sign the consent form because we had already prepared ourselves that it may need to be done. His office is going to call and set that up. We've requested that it happen on a Friday just in case anything goes wrong. It is expected to be a same day procedure, but after what happened last time, we want to give ourselves a cushion.

Because we saw Dr. Matt today, we are able to cancel the September 6^th appointment. We would have gone to that appointment and had to make another trip for the surgery. What a blessing! Our other random question had to do with potty training. Dr. Haggstrom didn't think that the vascular lesion had anything to do with that. We will try again soon and see what happens. We have many more Riley trips planned, so we will see when we can fit it in!

Overall, Brian and I left the appointment feeling like we were on a good path. We got some answers and have procedures lined out to learn more. Gavin is a puzzle and we are constantly finding pieces. The question is....how many pieces are there in his puzzle?



 Reading a pamphlet on discipline

 Too cute in the gown!