Mark started his day at the dental clinic. After arriving 20 minutes late..Thanks to the truck driver who can't follow directions, and went down Storrow Drive!! I swear that happens once of week. There are only 300 signs that say no trucks low clearance.
When we finally arrived to Children's the nice lady behind the desk rips my head off for being late. Well let's just say that set my tone for the conversation we had! Before you knew it we were in meeting with the doctor. This was after the receptionist told me he wouldn't be able to take Mark. Today we finally met an amazing dentist at Children's. It only took 10 years to find one! This appointment was key for transplant. After Mark has his transplant he will not be able to see the dentist for 1 year or so. Mark did an amazing job with this new dentist. He has always been orally defensive. He can't handle a lot of texture and gags/chokes a ton. I wish I was a bit more educated about this issue when he was a baby. I would have had the therapist work with him a bit more in that area! After Mark's first somewhat successful dental appointment in years the doctor and I talked. We decided it is still good to get him into the OR next week for him to be sure that there is nothing he missed. He didn't see any sign of infection but in this case it is better to be safe then sorry. This OR trip will give them a really good look and a chance to clean properly along with a set of X-rays. Normally I would not want him to go under, but the fact that we are not sure when he can get back to the dental clinic after transplant... I am okay with it.
After Mark's dental appointment we headed up to dialysis. Mark was excited to help Johanna set up for the party! He was able to decorate and hang out for a couple hours before treatment. He had so much fun! His treatment went pretty well today with minimal but enough interruptions. During treatment it was decided that Mark was cleared to go to the OR next week for his dental appointment. I also had a brief conversation with his nurse about everything going on. Normally monthly rounds would be tomorrow over the phone, but unfortunately I will not be available for that meeting. I have a meeting at Mark school at the same time. The number one concern at this is the infection in his line. The cultures keep coming back positive. This means the medication is not doing the job yet. Surprisingly Mark has not spiked fevers...of course that is great! He does seem a bit more tired and a little lower appetite. He has been receiving the oral/IV antibiotics. He has also this week having his line locked with antibiotic for 1 hour after treatment to try to get rid of any infection. After talking to Mark's nurse she said if the cultures come back positive again they will remove the catheter and put a new one in.
With the hopes of a June transplant this is not what I want to deal with! June transplant is only 8 weeks away...That is going to go by fast. If all goes well Mark will be cleared next week. I also have huge hopes that the donor will be cleared to start Boston appointments by the end of this week!
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| Chef Mark....He looks like he should be in a scary movie! |
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