February 25 - Blood Work & Surgery Follow Up

February 25 - Blood Work & Surgery Follow Up

Today we had a surgery follow up appointment in Lebanon, so we talked to Dr. V's office about moving Levi's bi-weekly blood work to Lebanon as well so we didn't have to drive to Dover and then Lebanon. They agreed. :) His surgery follow up was at 10 and we wanted to get his blood work done prior to that, so we loaded up the car and left the house at 7am. Early morning! And to make it worse, our plan was to get up and get ready and then scoop Levi out of bed at 7, in his PJ's and put him right in the car, but he decided he didn't like that plan. And woke himself up at 6:30. We kept him in his PJ's for the drive anyways.

Driving to Lebanon.

The drive was long but otherwise unexciting. Slightly more traffic then normal, I think we actually hit rush hour instead of being after it. Levi did pretty good.

We got to Lebanon and got Levi dressed in the car before heading in to the hospital. We had heard two different things about where to go for blood work so there was a little scheduling mix up there that took a few minutes. But we finally got over to the right lab. Levi was not in a waiting mood at the lab, and there was quite the line ahead of him, so we had a few temper tantrums and melt downs. Finally it was his turn. The actual lab draw went as easy as usual. :) He got a snoopy band-aid. Dr. V said to call him 45-60 minutes after the draw to find out the results as he was expecting a possible infusion need. So we were happy that the time was started.

At this point we were getting very close to his Surgery follow up time. So we rushed upstairs. Levi wanted to go play so I waited in line to check him in while Jay and Levi played. When I got up to the counter, they started to get me all checked in and then said, "Dr. C (the Surgeon) isn't exactly sure how this appointment got scheduled, he doesn't normally see Port patients for a follow up. He said you can see him if you want to, but its not necessary". Are you kidding me?!?! We drove all the way to Lebanon for an appointment that didn't even need to be scheduled?!?! I was about ready to flip the handle bars. Jay and I decided that since we were already there the surgeon could see us.

Playing while waiting for Dr. C

We only waited a few minutes and then they called us in to see Dr. C. They did height and weight. I don't remember the exact numbers but they were definitely different then Tuesday, I believe it was something like 31lbs and 34.75 inches. It is so not an exact science to take the height and weight of a toddler. Dr. C came in and talked to us for a minute. He looked at Levi's incision and said that it was healing exactly how he would want it to. He also said that what we thought was a minor infection a few weeks back probably wasn't, and was instead just the white blood cells doing what they needed to do to dissolve the stitches. Interesting. One of Levi's stitches didn't dissolve it came out through instead (something Dr. C had told us was a possibility) so his scar isn't going to be completely straight, but instead have a little wobble in it. The whole appointment took less then 10 minutes.

Now we had more time to kill before we could call Dr. V for results. So we headed down to Molly's place to play.

Levi is up in the loft. He was so proud of himself for climbing all the way up and down by himself.

After it had been an hour after the labs we called Dr. V's office. We got Receptionist S, oh boy! At first I thought she was going to pull her usual and not let us talk to Dr. V, but then we found out that he was actually out of the office until 12. Apparently he didn't realize we were going to be there so early for blood work when he told us to call him. Now we have more time to kill. We decided to head to the cafe for a snack for Levi. (When in doubt feed him, Levi will almost always eat. :) ) We let Levi pick what he wanted, so he ended up with a hot dog, fruit, tomatoes, and chocolate milk. Yummy!!

Snack Time

Snack time wasn't long enough to kill all the time we had. So we started wondering the halls of the hospital waiting.

Hand rails are cool!! 

Look at all the people down there! 

It was getting close to noon and I figured that we could be calling his office soon. We were walking around and suddenly we ran into Dr. V. Talk about being at the right place at the right time. We have no idea where his actual office is, so it was truly lucky. Levi's platelet count is 180. Time for an infusion. However the clinic is closed on Monday's and Thursday's as on those day's the Pedi Hematology/Oncology clinic becomes the Pedi urology clinic. So we were scheduled for an infusion at 11:00 on Friday. We talked to Dr. V about the fact that we were just going to stay over in Lebanon so could we get in any earlier. He got us a slot at 7:30. We also talked about the fact that some of the results have come back from Switzerland. It is confirmed that Levi has USS (this was confirmed almost 2 months ago, but Switzerland reconfirmed). It was also confirmed that neither Jay or I do. A normal ADAMTS13 count is anything over 50. One of us is 56 and the other is 76. Due to privacy the study only reports family as patient A and patient B, so we don't know who is who, though we have our guesses. We also found out that multiple genes can cause USS, so Jay and I do not have to have the same bad gene to cause Levi to have this, and in fact we more then likely do not have the same bad one. Interesting.

Well now to settle in for a night in Lebanon. Gotta go find a place to stay and get Levi down for nap.