A Check on Some Minor Swelling

This morning we took Greyson over to St. John's to have an ultrasound on what I am calling "mini buddy" for lack of a better name. We noticed some swelling starting on Sunday morning and have been taking pictures of it since then. I sent Dr. Jiang an email at noon yesterday and he responded within 15 minutes. By 2pm he had talked with me on the phone, through email, and text. He called our pediatrician and the pharmacy and got Greyson lined up to have the ultrasound this morning at 7:30am and prescribed an antibiotic.
Greyson did a great job at the ultrasound and let the technician do her job with very little fussing. Think he thought her screen was a TV just for him again. On our way home from the appointment (9:00am) Michael and I were making bets on how quickly we would hear from someone - Michael bet 11am and I said 10:15am. Dr. Jiang had the results called us back by 9:15am. Wow, he is amazing - he is all about keeping lines of communication open. We are so lucky to have great doctors like him on Greyson's team.
So all is well. There are some cysts filling up with fluid (always a possibility) but nothing major now so no need to do anything. We will see Dr. Jiang when we take Greyson back to KC for his compression garment fitting most likely next week. Looking forward to seeing how they helps with the swelling in his chest but also in his hand and arm. Pictures to come.
Brooke

Another Friday, Another Appointment

Michael and I are starting to think we might need a timeshare in KC. Looks like we will be coming back in a week or two for another set of visits. Good thng is that we always have a yummy lunch and do some shopping.

Today Dr. Jiang took out the second tube. It wasn't working properly anymore so it was doing no good. We hope that the drainage subsides and all will be well. We talked with him about Greyson having sclero in May or after summer to possibly treat another large cyst or two. Besides that, all is well.

The second appointment was with PT/OT to measure him for a compression vest/sleeve and glove. It will be custom made and should be here in a week or two. If it fits he will get another and will wear them 24/7 (that's why we will get 2). We ordered one in blue tie-die and can get them in about any color we would like. They will have to replace it every couple of months since he will just keep growing.
Someday Greyson will get to pick the colors. Hopefully this will help with the swelling/drainage issues he has especially in his right arm.

All in all a good visit with docs again. Will update as things progress. Happy weekend.
Brooke

9 Month Check-Up

We took Greyson to see the pediatrician today for his 9 month check up. The appointment went great with only one surprise.....he didn't have to get any immunizations.... YIPEEE! The doctor was very pleased with Greyson's growth and development. His hemaglobin was a bit low but we already knew that since he had it checked last Friday. It is on the rise so we are not overly concerned about it now. So here are the stats:
Weight: 30th percentile - 19 lbs. 8 oz (with dressings and drains)
Height: 40th percentile - 28 inches
Head Circumference: 25th percentile - 44.5 cm
Besides this, things have been almost normal; you wouldn't think that he had surgery a little over a week and a half ago except for the dressing changes each morning (I am getting pretty good with the wrapping - even Dr. Jiang said it was very nice) and having to change out the drain tubes twice a day. The drainage was at it's highest on Friday and Saturday but seems to be slowing a bit now and isn't it near as red as it was. Very happy to see that.
We have another appointment with Dr. Jiang on Friday at 11am. I plan to update you all after that. Keep your fingers crossed that the drainage continues to get slower and slower each day. Once it's almost stopped he will take the drains out.
Hoping for no more snow ;-)
Brooke

1st Check Up - No Surprises

I say 1st because as we learn with each new meeting with the doctors, Greyson will be a patient with them for some time to come.

Dr. Jiang met us at the desk when we got there to check the drains and let us know we would be having blood work done. We then went to the room for the complete check-up. He was pleased with the incision and did say there was quite a bit of drainage but that it was not excessive. We talked about what to expect with the site in the coming weeks and we made plans to see him next Friday. The drains will stay in for a few weeks possibly and the swelling will continue to go down. The blood work was all good and the results of the tissue biopsy were good as well. Basically we will keep doing what we have been doing and hopefully the drainage will stop soon. It is really hard to keep a 9 month old from playing with the tubes and bulbs he thinks they are a new toy.

The best part of the day was returning the car bed. Greyson seemed to like the regular car seat but did let us know that he can melt down in the car seat as well. Better go, we are in the car and it has started snowing again. Better to have 4 eyes on the road than two.

Stay warm,
Brooke

Snowed In

Like most people in this area, we got about 20 inches of snow over the last 36 hours and are currently snowed in. Michael is out shoveling the driveway to to get the truck out as we speak - getting his workout for the week I think. Greyson has an appointment tomorrow in KC for follow up but if the roads aren't clear we will put it off until Friday or Monday. We talked to Dr. Jiang today about how Greyson is progressing and he is happy. We even emailed him some pictures of the drains so he could make sure they are doing well and he replied back very quickly. It is so nice having such great doctors!!! Greyson continues to only have pain meds at night and less than was originally prescribed. He is so happy and playful only crying when we make him sit or lay down instead of standing (which is what he always wants to do).

Stay safe!
Brooke