Friday, January 16, 2009

OT, Cardio, and Pulmonary update

Well yesterday ended up being a very long day for Carson and I. Our first appointment was at 9:30 and we didn't leave til after 4:30. Having to pack for an all day thing is something very new to me as well. I had his diaper bag with his normal things, another bag with all of his meds and feeding pump supplies, then we brought a little back pack for his feedings, and of course my purse. I felt like I was going to a soccer tournament.

We started at OT at 9:30 and as usual, he had lots of fun. We started out on the swings and went on to eating some grapes and then played with some cars and cutting and coloring. How could that not be fun???

We did discuss an action plan for when he is at home with his eating. We are going to offer him three different foods with only a few bites of each type. We are also going to put him on a timer and he will have a set amount of time to eat and then that is it. We don't want him to get lazy with his oral skills but know that the pedisure will still help him out with his calorie intake.

Next it was off to the Cardiology Clinic. We only saw a nurse long enough to download his monitor and put different leads on and have him do it for another 48 hours. I will turn the monitor in on Monday so that Dr A can read it.

After that we decided it was time to go down and grab some lunch. While waiting for the elevator we ran into the one and only adorable Mr Phoenix and his mother. If you think his pictures are cute, you better see him in person!! I got lots of great smiles from him and I think he might have even been flirting with me!

The cafeteria at the hospital is actually pretty cute. They have a jukebox down there that plays oldies and Carson loves to push the buttons and dance to the music. I bought one slice of pizza for the both of us and Carson wanted pretzels. He never touched the pretzels and I think he ate about 5 bites. I started him at 7 AM with a cup of apple juice and at 1 PM, he was still working on the same 9 oz. So lunch was a bust.

Last stop, Pulmonary Clinic. Dr E has decided a lot of changes for Carson to figure out what the heck is going on with him. First off, I don't know if you remember from Oct that we switched Carson from Flovent to Advair. The problem is that Advair has NEVER been tested on children under 4 but she felt like the benefits outweighed the side effects so we went with it. She thought since all of his problems so far are unexplained, we would revert back to the Flovent and throw the Advair out. She decided that the chest pains he is having could be asthma related since I did give him Combivent and he seemed a little better. She said it could be from acid reflux from the NG tube and thought we should go back to Dr Kain to see if he wants to up his Prevacid. The NG tube goes down into the stomach and the tube actually opens up the stomach so this is a very common side effect for people. Next she was thinking that it could just be cardiac related like angina or he was feeling palpations.

She also had her office set up an appointment with the neurologist for Feb 24th. She is going to have him do a sleep study as well since Carson had several bouts of low sats on the pulse ox monitor while we were at the hospital and she wants to rule out sleep apnea. She also wants to figure out why he isn't sleeping at all.

As far as the NG tube, she also is in favor with him keeping it and said that she is recommending this to Dr R as well. His weight in her office is back up to 11.9 but they were quick to point out that their scales may not be calibrated like the one in the Special Care Clinic. She said his weight is around 8-10% and she thought we needed to keep him on the NG until he goes up to around 30% and then wean him one feeding at a time until he can get off and gain on oral calorie intake. So it sounds like all three doctors are in favor of this.

She asked me if we have seen a Psychologist and I told her that we were seeing one in the feeding clinic, but she is going to refer him to the Behavioral Medicine and have him looked at there. We have already filled out paperwork and we are just waiting for an appointment.

So a recap, we are going to spend the night for a sleep study, going back to GI, follow up with the Cardiologist, see a Neurologist, and look into Behavioral Medicine. Doesn't he sound like a Geriatric patient to you???? I'm thinking if I have my hands full now, he is really going to keep me on my toes when he is a teenager. LOL

So after my long 6+ hours at the hospital yesterday, I woke up this morning to snow and it was very cold. So I called Dr S which is the plastic surgeon and rescheduled that appointment to this Wed at 11 since we are already there that morning for OT. I know, bad mommy......

First thing this morning we went to OT. We started off on the swing to work on his trunk strength. Next we balanced some more on the horse swing.

Then we decided to draw roads for our cars to drive on.
Then it was working on scissors.

He was really concentrating to cut in a straight line.

We ate very few grapes to work on our oral skills and then he decided he wanted to smile for the camera.

If anyone knows what this Fisher Price toy is called and where to get on, let me know. It was really cool. It had three blocks in it that you could turn and it made several different faces through all the combos. You place your paper in it and then press real hard with your crayon to sketch the face.
As usual, his OCD kicked in and he had to wash his hands.

This is the jukebox in the hospital cafeteria. We had two appointments in the morning and one very long one in the afternoon so I ran him downstairs for lunch. He loves to pick the music out and dance.
Still dancing. Everyone was watching and complimented his great moves!

On to pulmonary. They have an X Box in the waiting area. It was some Batman and Robin game that I couldn't even figure out. Carson didn't seem to mind.

While waiting for the doctor, everyone felt sorry for us since we had been there since 9:30 so they gave him his own bottle of bubbles to blow. What a lucky boy!!!


Phoenix's Mom said...

It was very nice to meet both of you! Phenny loves to have new friends. I hope we can get together at another appointment and have sit down time! (Adult conversation is so hard to come by!!!!) Take care and best of luck next week! We'll be watching for updates!

kristi said...

Wow! That is a lot in one day, he is a trooper and so are you mom!

Kaden and Angel Ava's mommy said...

What a busy day and he still looks content at the end of it. Kaden loves that jukebox too. When we were there with Ava he knew that lunch time meant music time. He still asks for it when we are there for appts.

I hope your days slow down a bit.

Jaxsons Fight said...

He has the best cheeser ever. Hopefully the answers are going to come out soon, Hugs from Lacey and Jax

Shari said...

He is the cutest kid with the BEST mother. You guys need a serious break! I am praying for you all and hoping that comes soon. He is just adorable!

Lacia said...

WOW...what a day! That's really interesting about the Advair. Wouldn't that be wonderful (in a roundabout way) if all his problems were because of that and they all disappeared from stopping it?!

As for the chest pain, does he cough alot with his asthma? We had my oldest at the ER on Christmas day with an asthma attack, and while sitting in the little room after a breathing treatment he says to DH "My chest really hurts need to tell the nurse". That kinda freaked him, and the nurses out! So he got the nurse and he checked out fine. She said it was probably the muscles surrounding his chest that were causing the pain because of coughing and breathing hard to try and get a good breath. Maybe that's the case with Carson?? Hopefully that's all that is.

Jaxsons Fight said...

Ok, I have some way cute Thomas the train material that i grabbed. I will email you when I'm done to get your address. I want to make a button to make donations to help make them and also make a website for it, but you know, its finding the time to sit at the computer and do it all. I don't want the parents to pay anything. Most parents that have sick kids don't have extra money, and if they do it should go to medical bills and stuff the kido needs.

Rachel said...

Girl. I know we talk on the phone and you tell me all this, but reading it totally exhausts me! I can not imagine having to do so much in one day. You handle it so well and I am so proud to call you my friend. You are such a devoted mother!

I hope your day got better yesterday after all the chaos! I hope Colt had a good birthday.

And I am always praying for you and your sleep.

Love ya girl-


Aimee said...

WOW... you've been a busy girl. I love the new photo's of Carson. Hope all is well with you... Loves!

Carey said...

Wow that's a big day!!! I don't know how you keep it all straight! Cute pictures though, what a cutie!

Can't wait to hear about the sleep study. Do you have a date yet?

Rachel said...

Just checking in on ya....havent seen a post and I know the kind of day you had Sunday.

You ok?

Love ya,


Lil' Chris' Mom said...

What a big boy, he did a great job!! Looks like you are doing a great job with him;)

lisaschaos said...

Carson is a full-time job! Wow! Hope all these tests provide answers and things get better.

Angie said...

Yikes, what a busy long day for you both!! I hoping for it to slow down for you-you need it. Look forward to hear more about the sleep study.

On a different note-the Wii Fit is a great workout and tons of fun too. My husband and I do it together and it motivates us to push ourselves. I would highly recommend it to anyone that doesn't really like to workout, but loves having fun!! Great investment.

Hang in there-talk to you soon.

Spaghetti said...

I'm just checking in. I haven't noticed a post in awhile and I am starting to get a little worried about you and the boys. I pray that everything is o.k. Dear God, just protect them and let them know that we are all here for her.