Well yesterday was a very long day to say the least. We started out at Plastic Surgery at 8:30AM. Dr S took a look at it and I also brought a picture before we took the black part off and he agreed it was definitely infected. He asked that when our primary receives the results to either fax it or bring it with us when we go. As far as Carson having another foreign body in there, he isn't sure if there is or if that is from the infection. So he has us coming back next week for another visit to see.
Then it was off to see Nancy. He loves his Nancy from Occupational Therapy. As usual, she played with him for a while. They had a lot of fun together. When we get over the infection, she is going to start working with him again on oral skills. More aggressive oral skills. We cannot let him get lazy from the NG tube which is apparently a common thing. So today we worked on Sensory skills and ended with a few oral. One last thing to report, Nancy is going to let him start swimming again in the pool every other week and I know that Carson will love that.
Then it was off to Special Care clinic. They were holding the monthly spinal bifia clinic and there were 18 kids scheduled. When I walked into this large waiting area, it was packed. Nancy came and got Carson again and took him to play for a while. After waiting for over an hour, we were finally called back. They did his weight first thing and he is down from 11.8 to 11.5. So of course there was some concern. After going through his long history of what has happened in just the last 2 weeks, Dr R decided that we were going to back down to 5 feeds again. She thought that maybe by him having increased feeds with more fluid that Carson wasn't absorbing it fast enough and just peeing it out instead. So the good news, I only have to get up once a night for that!! Her next step was she got on the phone and guess what??? Cardiologist seems to have a new patient opening for Carson next week!!!! Dr R is the best!! She pulled her strings and got us in next week instead of waiting until Feb 9th. Boy do I love her for that. Then we also have an appointment scheduled for Feb 24th with Pulmonary and she is working with Dr E's office to move it up as well. She wants to figure some things out before she gets to aggressive with Carson. If it happens to be a pulmonary or cardiac thing, she says we would need to work on his feeds differently. She doesn't want to mask a more serious problem with her treatment plan. So as far as the NG goes, we are going to handle that differently as well. But it will stay in place for now.
So as far as next week, we have 4 appointments for sure, and she is hoping Pulmonary works Carson in next week as well. So we may end up with 5 appointments.
Dr Tarvin's office just called and as of 11:52 AM, they confirmed that he does have staph on his chin. They told me to keep him on the Bactrim (SP?) until I hear from them tomorrow. This is something I didn't know, they put different antibiotics around the peatree dish and will see what medicine works best. So we may stay on what we have, or they may switch him tomorrow morning. She will also be able to tell me how bad the infection is and because it is in his head, it can end up being more serious because it can get into the blood stream and go to the brain. Can we catch a break here people???
And to make matters worse, I have finally picked up a really bad cold. So after everything yesterday, I came home and waited 45 minutes for Coltan and Cody to get off the bus to help me take care of Carson. Coltan was such a doll, he ended up putting two blankets on me because I can't stay warm. I'm hoping that this will pass quickly and that Carson (or Coltan and Cody for that matter) don't catch it.
Here are a few pictures from yesterday. This is Carson at 8:30AM pretending he is liking mornings.....that is what he gets for not going to sleep until 2:00AM. I gave him some fruit loops and apple juice and he ate his usual 5 bites and was done. Now we are having some fun. Look, I can see your belly button.
Book ~ "A Talent for Murder" (2024) Peter Swanson
11 hours ago
10 comments:
ahhh NUTS. So sorry about your cold and the staph. I feel your pain on both! Hopefully you will both feel better very soon. So glad that you don't have to wait until next month to go to the cardiologist. Loves...
I hope the cardio appointment works out! That is great news - he was having to wait too long before! I will say a little prayer for your cold. I am surprised that you haven't gotten sick before now - you have been going and going so much your body is probably run down. Try to get some rest!
I'm glad they got Cars on antibiotics already. I'm so glad they got the cardiology appointment moved up, that will tell a lot. Hopefully the cold goes away soon, Love Lacey and Jax
Sorry to hear about the staph, but glad to hear they are getting things going for you! We'll be in KC on the 28th for Chest CT!
Hope you have a great weekend!
Tell Carson we are still potty dancing for him!
Angela
I am glad that they were able to get Carson in sooner to see a cardiologist. Those SC doctors seem to know the trick to that.
I hope that the anitbiotics help kick that staph in the bud. And as for your cold...I hope that you can get better soon. I know that it is probably so hard to be sick and be a mom to three boys at the same time. I hope it is something that passes quickly!!!
Thinking of you all.
Wow, Kac...just got caught up on everything you are going through. I don't know how you do it, woman. You are one tough chick and a phenomenal mom. :) Still praying for you. I think, hopefully, our appts. at CMH will be decreasing soon, but we'll still figure out a time to get together now that the holiday season is over. Maybe sometime Joe and I can buzz down to church down in Lees Summit and meet up with you- we used to go to Lees Summit Community but it got to be a hike from here. :)
I'll try to post more, by the way... now that the holidays are over I should be better. Not everyone is a superwoman like you and can keep up with everything! :) hehe.
Take care, girl.
miss
By the way, about your comment about Jack looking like me- a lot of people are starting to say he looks like me now, it's pretty crazy. Some said that even at the beginning, but now it seems like everywhere I go, people are telling me that. It's so funny how kiddos change. It will be fun to watch him grow up! I see a lot of you in Carson, too.
By the way, would you mind sending me your recipe for mexican casserole? It sounded really good to me and I LOVE Mexican food.... :) (once we're off our diets I can make it!) haha.
Thanks!!
Hello
So sorry bout your cold and I can not believe that is Staph. I'm praying that it goes away quickly.
I have the boys this weekend and we have a game on Saturday at 1:30 so maybe, if you are feeling better, we can stop by so that all the boys can meet. Melana will be with her Daddy so that won't be fun for Carson, but maybe Coleson will play with him.
I left a longer comment a minute ago, but it didnt take I guess....why didnt you call and tell me about the Staph being positive.
Any word from THE PIG?
You just can't seem to catch a break now. :( He sure is a sweetie though. :)
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