Thursday, September 18, 2008

OT and Asthma update

Yesterday turned out to be a very exhausting day. We started out at 9:30 in the OT. Boy that sure seems more like playtime to me. We met with Nancy and she started by showing him pictures and then he would find that activity. The first one was the ball pit. He had fun at first but I don't think he liked the idea of not being able to plant his feet on anything. So after playing on that for a while, we went to the mat and played on the tire swing and then another swing to work on him balancing. He seemed to have a lot of fun. After that we went on and played with play-dough. Nance had placed beads in there and his job was to kneed the dough and find the beads. This was to work on his motor skills. After that we played a little basket ball and finally some cars. He pushed cars down a ramp. Insurance pays for this???? Anyways, it was all to help him in the long run. Nancy has also given me another phone number to another clinic and wants me to call and schedule him an appointment. I think it is called Behavioral Medicine. Right now that is all I'm going to say. We are going to be testing him for some possible disorders but I'm actually in denial right now to say the least. I have totally shut down with friends and family and I'm just waiting until I get a little more info before saying it. It isn't anything that is life threatening, just not ready to face it. (Denise and Amy, I have mentioned it to you).

So after that appointment we went up to Asthma Clinic. His appointment was at 1045 and we arrived a few minutes early. Well since Pulmonary had sent him an e-mail on checking his blood levels, he took forever coming in to see us while going over all of Carson's charts. He did warn me so I wasn't just sitting in the dark wondering. I do have to say that Dr Dowling has turned out to be one of my favorite Doctors there. He just seems to be very thorough and if it takes an extra 30 minutes for my appointment, oh well. So he came in and told me that he didn't feel to alarmed with his blood work and because he hasn't had a lot of flu, colds, things of that nature, he feels that all of our asthma related issues are from Carson's anatomy. Meaning, he is hopeful that once we get the tonsils, adenoids out, do the exploratory surgery, and ear tubes that Carson's asthma will be controlled better with just his preventive medicines. That was some positive news that I really needed. By this time it is already noon. My mother had called and said they were heading downtown and she was going to stop by to help me since Charlie wasn't there. Charlie had a meeting from 8-11 and I thought he was coming over after but I was wrong. So anyways, we talked about Carson's swallowing issues and a feeding tube was mentioned. I'm not in favor at this time because even though we do have slow weight gain, he is still able to swallow. I want him to eat and drink without choking but I don't want to distract him with a NG. I think it would reverse all the efforts. I think I would rather make a big decision like this after all of our surgeries and Behavior, Feeding and OT appointments. Carson isn't losing weight, just doesn't gain very well. Any opinions on this? I know some of you have children on NG's and would really like your input. It's not that I'm opposed, I just think we need to slow down a little and let me breath.

So then we talked about Carson's eczema. It isn't getting any better behind his knees, his legs and around his elbows. So he is taking him off of hydrocortizone (wouldn't you know it, I just filled that RX) and is going to try another ointment. I already gave it to CVS so I'm not sure what the name of it is. He wants Carson to have a real bath every night and lather him with this and then he wants me to soak him everyday for 10 minutes in the tub (preferably first thing in the morning, when I have SO much time) and then apply it again. He said that this particular ointment should only be applied to damp skin so it penetrates his skin better. Apparently dry skin doesn't allow the ointment to sink in.

We refilled his Singular and he wrote a script for chewable Zyrtec because his liquid over the counter that he has now, he chokes on every day. He only needs 1/2 teaspoon so he was going to write a script and see if the pharmacy can help me out. Otherwise, I will probably have to try to put a dab of the simply thick in his liquid which isn't convenient at all when a lot of times I'm giving him this medicine away from the house. So now we don't need to see Dr Downling until next year. He wants to take himself out of the loop for 4-6 months while all the other doctors are busy stepping on each others feet with plans.

Last but not least, we had to go down and get some blood work. Dr Dowling wanted to look at some numbers now that Carson is over two. He is also looking at the strider (I think that is what he called it, nurses, help me out if this is wrong) to make sure that his pneumonia shot took. So they call our name and the lab tech looks to be about 16. I asked if he had been doing this long and he said almost a year. That should have been my first flag. So Carson is sitting on my lap and the lab tech keeps pulling the needle in and out trying to find his vein. Carson all the while is screaming for his daddy? I finally told the lab tech that if he can't find the vein very soon, he would need to find another tech to help. I refused to let him continue poking my son and just as I was telling him to stop immediately, I saw the flashback. So he was able to draw the blood and we were able to leave. It's not that I think anything bad about this man. I'm sure he is a great person and to work at children's and stick needles in babies all day, I'm sure he has his share of stress as well. But we are talking about MY son and I have to do what is best for him. So my mom and step dad decided that Carson needed to go to Crown Center to the Crayola store for a special reward. We finally left Children's after two.

I'm not sure if any of you guys have ever been to a restaurant at Crown Center called Fritz and Company. When you go in, it looks like a railroad diner. It had trains all over and Carson finally forget about the needle for the first time. They gave him a conductor hat and we sat in a booth. You pick up a phone and order your food and when it is ready, a cho-cho train delivers the food to your table. It was pretty neat. Carson's expression was just priceless. I wish I would have gotten that on camera.

So after that I ran home and grabbed Cody, picked up the other boys (my turn to drive to soccer practice) and off we went. I then ran to Toys are Us and the dollar store to grab a few things for Carson. OT wanted me to get him some magnets for the fridge so he could work on motor skills. I also went to the dollar store and bought him some play-dough and coloring books. I bought some jumbo coloring books for $1.00 and $2.00. What a great deal. OT also wanted me to buy him some bath toys and shaving cream for his hands. Carson hated to have his hands messy and that is what the shaving cream and play dough is for. She also wants me to get him some messy finger paint but I haven't bought that yet. That would be a great thing for him at say like grandma's house :-0 . I also bought a couple of those chunky puzzles for him as well. Another motor skill game for him. It is supposed to help him try to stay focused and not be easily distracted like he is. So hopefully all of this will help him out.

So after all of that, we went back and picked up Cody, took all the other boys to our drop off spot and ran through Arby' for a "my mother would be proud" dinner. We ended up all eating dinner at 9:00 and then it was finish up homework and everyone off to bed. I noticed Carson was wheezing again around 10:00 so I gave him one treatment and thought he sounded better. Well guess who was up at 3AM wheezing again? Oh I would give anything to have 6 hours of uninterrupted sleep :-).

I will post a couple of pictures tonight or tomorrow after I download them into the computer. As always, I feel that I have some really cute ones that I would love to share.

Oh and GI called, they scheduled Carson for Oct 7th. We already have appointments on the 6th and 8th and they couldn't make those two days work. How lucky is that????


Kaden and Angel Ava's mommy said...

Wow that does sound like a long day and a well deserved trip to the Crayola Factory!!! Kaden saw a behavioral specialist, oh probably over a year ago and at the time decided I didn't agree with her (I don't think it was denial, I just didn't see it). Now as he continues to get older I think I am going to have him see one again to say what they say.

About Carson getting his hands dirty...Kaden is the same way...he hates it. Now that he has been in school and they have been working on this he has gotten a lot better. He will now play with play dough and finger paints (although it doesn't last long). He still has trouble with the sensory table with some things and he notices when he gets something on his hands, but he doesn't normally freak out anymore to get it cleaned off.

It sounds like your load gets heavier and heavier. I can't tell you about the NG tube. Kaden had one, but at a really young age. I don't know how Carson will respond to it being older. I would guess it would be very annoying to him at first until he gets use to it. But I agree with you, I wouldn't worry about it too much right now unless you are seeing a problem with Carson and his nutrition. And then on top of everything, throwing in two baths a day...I am sure that will be sooo "fun" ; ). I wish I lived closer so I could help you out. Hopefully things will start slowing down for you soon.


Kaden and Angel Ava's mommy said...

Ok, I just decided to "proof" read the last comment after I already posted it and decided that it is pretty hard to follow, and I think me using the wrong words (like, say what they say, instead of see what they say). Oh, anyway...I think I just need to go to bed.

Rachel said...

Man I thought I was busy...What a long day!

Awesome about you career! What a great thing to be your OWN boss!

Jackson plays at Pop Warner fields in Indep at 9am. Probably to early for you cuz you have so much to do, but if you get up that early....WOULD LOVE TO MEET YOU in person.

He plays on the Purple field. You've seen my picture on my blog, so you should be able to spot me. If you cant come...completely understand. And the boys will be with thier Dad this weekend so they will not be with me, but hoping that they will be there with thier dad.

Any cell is 699-6639 call me if you want.


Denise said...

You are a great mom....keep up the good work!! Talk to you soon...

CrackerJacks said...

You have to be supermom to have a day like that! Congrats on a job well done!

Hope all continues to go well for Carson!

Have a great weekend and thanks for visiting!

Kyle, Aimee and Ava said...

WOW... I thought I was busy. I think you deserve the "supermom" award!

Marilyn said...

Thank you for the comment on my blog. Your support and prayers are appreciated and I will pray for you and little Carson also. He looks really good in the pictures and I would say maintaining his weight is OK. Of coarse this is coming from one extremely skinny heart child. I have been trying to boost Kyle's calories lately to help. I found he likes shakes made with carnation instant breakfast and ice cream, and we buy chocolate milk by the gallon and he drinks it all the time. His weight is maintaining also. Kyle has asthma also and actually that was more of a problem between ages 2 and now than his heart, until now. I remember those sleepless nights of breathing treatments and constant coughing. It is hard when they are so young. I will keep you in my prayers.
Thanks again,