Tuesday, December 30, 2008

Christmas Pics Part two and playing catch up

Well first off I just wanted to update everyone about Carson. Charlie came down on Friday all day which was also Cody's birthday. He managed to get him to eat a little here and there. The frustrating part is that when you add up all of the calories, he only ate 334 calories all day. So then Saturday Charlie came back down after work and we had a nice quiet evening with Carson. I was unable to get him to eat for me all day and Charlie managed to get him to eat around 250 calories worth of Lucky Charms, pineapples, peach cup, jello, and part of our meal. I ended up making chicken Parmesan and Carson did eat a couple of bites of our chicken and he ate a few noodles with the sauce on it. His weight on Saturday was finally back up to 11.7 kilos (it went down to 11.5).

Sunday Charlie took a vacation day and got here around 1:00 PM. Before he arrived, Carson had gone to sleep the night before for us around 9:00PM. He woke back up around midnight and didn't go back down until 2:00. I fed him at 2:30 and I laid down around 3:00 AM. He was back up for good around 5:00AM. Now around 10:30 AM Carson pulled out about 6 inches of his NG tube and all by myself, I had to hold him down and take the tape off, put the tube back in and re tape it. Carson was terrified the whole time and guess what he did? Yup, passed out. This time he was out for 6 minutes. I called the nurses hot line and they contacted the doctor. The doctor basically said that if they don't see whats going on at that moment, they won't be able to give me a diagnoses. So we stayed home. How frustrating this has become.

Charlie showed up and all I wanted to do was sleep. Charlie and Carson played with his new train and Charlie played catch up on my laundry. (it wasn't that bad since Coltan and Cody haven't been here)When I woke up I got to take a very long hot shower and didn't have to worry about where Carson was. (oh the little things in life). Charlie started having problems getting Carson to eat. So far he was the only one who was getting him to eat at all. So now we are even more frustrated. I made some apple stuffed pork chops and twice bake potatoes for dinner and Carson wouldn't eat any of it. I thought he might like the apple stuffing but we couldn't even get him to try it. So since Carson had been up since 5 AM, he finally gave up around 7:30. Charlie carried him to bed and left around 9:00. I thought to myself that I should probably lay down and I did around 10:00. I then got up at midnight to feed him and back down at 12:30. So guess who decided to wake up at 1:15AM. So yesterday was a very stressful day for me.

I called Ashley in the cardio clinic first thing yesterday morning and she scheduled us for March 6th. Not okay. So we finally got Feb 9th and we will be placed on a cancellation list for something sooner (keep your fingers crossed).

I also talked to Dr Robertson's nurse about Carson and she actually talked to me between three phone calls for over an hour. She was very intuned with Carson's case and talked to Dr Robertson and called me back. I'm under the impression from my phone call that we were actually discharged by a medical STUDENT of 7 months. Dr Robertson was not okay with this. She was so upset that she has personally called Patient Advocate and they will be calling me today. She said that is the main reason for me not knowing about the Left Ventricular Hypertrophy. She said that failure to thrive could be a result of him having the LVH (great another red flag). But she wants me to stay calm until they do the sono because if he is just starting to have this condition, it could be a simple fix. Hypertension is a sign and when we went back on some of his charts, there have been times where he had a blood pressure that was elevated. So I'm trying not to worry but I think every mother reading this knows that is next to impossible.

So Carson went down last night around 8:30 and my boys finally came back home. They are staying with me this week and then they don't go back to school til like the 6th. We ended up watching a movie and just as I was sneaking off to bed (at 11:00PM), Carson woke up and stayed up til 4:30AM. I did his 4AM feeding and then I was up again at 8:30 for his next feeding and then he was up by 10:00......sigh......

Charlie has been sick the last two days and he is going to the doctor today to get something for it. I need him better asap because these last two days have been horrible. I feel like I'm walking around like a zombie.

Now that the boys are home I'm hoping maybe I can sneak in a few naps in the daytime but usually what happens is Carson follows me around the house and it is usually not an option. I will be able to enjoy having all of my boys home though so that is good.

I will try not to wait so long for the next update. I did want to tell each and everyone of you again that I really do appreciate all of your prayers for my family. It is so nice to get the comments, e-mails, phone calls, and visits. Please know that there is never a bad time to call or come by. Again, it is what keeps me sane. Oh the delights of having another adult in my house!!

Now I will leave you with some more pictures of Christmas. These are some of my favorites as well.

Carson kissing his girlfriend Melana

Carson's other girlfriend Rachel and him were playing pop the bubble gum bubble

Melana not liking Santa at all.

Isn't she beautiful!!!!

Cody opening presents

Coltan opening his presents

I thought this was a cute one of Coltan and Carson

This is my Papa Clyde. He is my only living grandparent and I'm very blessed that the boys get to have a relationship with him.


Rachel said...

Woweee I feel so Famous! Don't really like profile pictures of my nose, but they were cute. Especially the gum popping one. If you blow it up you can actually see the bubble.

Anyway~I'm not HAPPY about the February 9th appointment. This is your childs heart we are talking about. Any childs heart. What in the world could possible take so long to get in for a sonogram? Coleson has had those done at Children's before and I got in within a week or two.
I will be praying that they call you with a cancellation.!!!

Love ya girl...I'll try to call you tonight if I get a chance. It's just me and Melana.

Pam said...

Hmmmm...I'm kinda jealous of that kisses that Carson is giving out. What I wouldn't give to get my grubby little hands on him.... :)

I'm sorry things are so rough. It's hard doing things on your own. I mean I know I have Andy, but he works two jobs and then when he is home he is exhauseted.

Thank heavens that with the holidays being over he won't be gone so much.

I like the extra cash but would so much rather have the extra hands.

Loving the pictures of the boys. They are so handsome.

We are still praying that his heart is okay.


Jaxsons Fight said...

I love his long curly hair. My Carter has long hair but its straight as a bone. Lacey and Jax

Tracey said...

I hope Carson's appointment gets pulled up. He doesn't need to wait. I will pray that all his medical stuff gets better soon! Your Christmas pictures are awesome. I love the popping the bubble one! Too cute!

Aimee said...

Hi there... so glad to see some Christmas pics even though I can see that Ava has been replaced by Melana! What a cutie she is too....

I know that this is very frustrating for you but why in the world can't they get him in before Feb 9th? I would think with the possible diagnosis, they would try to get him in much sooner SIGH... Anyhow, great big loves and hugs to you from me!!!

lisaschaos said...

Looks like a good holiday. :) I'm glad there was a tee tiny bit of weight gain and hope there can be more. And you got a shower! How divine! :) Cute photos!

Carey said...

So all that work, but really still no difinitive answers ... Thanks for the update, hopefully you can get in sooner than Feb.!!! We'll be up at the hospital next Tues. and I'll be alone w/ her ... grrr. DH has to work at his brand new job, no getting out of it.

Kaden and Angel Ava's mommy said...

The pictures were great. I love the one of Carson kissing Melana. TOO CUTE!!!

I can not believe they can not get you in sooner. That is unbelievable. I don't think it has ever taken us over a month to get in. Maybe you can ask Carson's doctor at CMH to schedule the appt with cardio. They seem to have a magic wand and can get kiddos in faster, that is what our doctor does for us.

Well, I am glad that you posted. I really hope that you guys are able to start getting some sleep. I know how you are feeling right now, I am having a hard time sleeping too due to Brody and Kaden. Is there a reason he will not sleep through the night? Is he still waking up crying?? Are the doctors concerned about this? Just curious.

Thinking and praying for you guys.


Wendy said...

Still thinking of and praying for you! Thanks for sharing about your Christmas.

Brad, Kellie, Lucy and Baby Carter said...

Oh, the feeding saga continues! I'm just hoping you can get some sleep soon or you'll be passing out. It seems so silly that they can't get you in earlier if they suspect a heart problem. Praying for a cancellation so you can go sooner than Feb.

Kyler's Mom said...


I am glad to see you stopped by my blog. I have been checking in on you and your blog for some time but just decided to add it to my favorites instead of getting to it through other blogs. I don't know how you keep up with your three boys. I have trouble with just one. You seem to be a very dedicated and wonderful mother.

Kyler was born at St Luke's so we never had to go to Children's Mercy. We had a few follow-up visits down there but not really anymore.

Feel free to stop in and say hello anytime. I will keep an eye on your blog and keep your family and little Carson in my prays. He is so cute! That curly hair!

Stay strong.