Thursday, December 18, 2008

WERE HOME

Sorry I didn't post last night. It ended up being a very long day again. I did something I usually don't do. I put all three doctor appointments on the same day. With the snow and ice storms in the forecast, the boys getting ready for x-mas vacation, and everything else, I decided one day of stress would be warranted.

So our first stop was our primary to get Carson's stitches out. He only had the two in his chin. Dr Tarvin saw me in the waiting room and so he grabbed Carson's chart and came and got him himself. Carson ran right to him and he picked him up and carried him to the room. Our favorite nurse Jennifer came as well so we could hold him down if needed. We took them out and Dr Tarvin picked him up again and held him. Carson was scared at first when we were holding him down and Dr T didn't want him having fears with him as well. He always hugs and loves on Carson and always tells him how much he loves him. Dr T has been my doctor since I was 15 and he is the only doctor Coltan and Cody have had as well. He is truly the best. So since this was one of the rare occasions that Carson could have his flu shot, Dr T said nope. He has been through so much and even though it has benifits,he didn't think emotionally Carson could handle more poking and prodding. So we left without the flu shot. Since he is home bound, we will keep our fingers crossed.

Next Carson went to Childrens for his OT appointment. We are refocusing his visits and instead of working on mostly his motor skills for his Sensory Processing Disorder, we are going to work more on oral skills. The special care clinic is concerned that now that Carson has the NG in, he will become lazy or to relaxed with his eating and drinking. Nancy is out of town for two weeks and Steve is taking care of us while she is gone. Steve was a very big kid and Carson loved it. They started off blowing into party favors and whistles. Steve acted like Carson was the "big, bad wolf" and every time he successfully blew the whistle, Steve would act like he was getting blown away. It was so wonderful to see Carson giggling and acting more like himself. He was so happy for the whole visit.

Last appointment, the dreaded Special Care Clinic. We weighed him and he gained 4 oz. The dietitian wanted him to gain at least a pound and a half back but since he gained almost a pound, she was going to let him slide. So I knew within the first 2 minutes of the appointment that we were going home. I then relaxed a lot. I knew that if I packed a bag, we would go home, if I didn't, we were staying. So I packed a "everything but my kitchen sink" so I would jink it and it worked!!!

The Dietitian came in first and talked to me about where she would like to see him when he comes back to our next appointment. She also gave me some suggestions about getting Carson to eat. To date, Carson is only eating 200-400 calories a day. A normal day is maybe a 1/4 cup of cereal, maybe a jello cup, I will fix him some sort of lunch and he almost never eats it, and what ever we have for dinner and it has recently been thrown on the floor. He will eat a few bites of a banana and gold fish crackers and that is about it. Then we are still refusing milk and some days he might drink 6 oz of apple juice which is a huge challenge and like today, the only thing he drank was 6 oz of water. At least now that he is on the Pedisure I know he is getting plenty of fluids but this is still pretty scary to me. She also told me that the part she is concerned about the most is since he did lost 3.3 pounds, most of it is likely to be water weight. Since we have been pushing fluids for a week in him through the tube, she had hoped he put more weight back on. So she said from here on out, the weight gain will most likely be slow. That is the typical normal.

Next was Dr Robertson. She is the medical doctor that oversees the whole team. She just went over a history with him and we also decided that we are going to take him off the Imodium AD for a while because now his stools are getting hard from all the iron he is getting through his feeds. Other than that, just keep giving him 32oz via the tube. She said if he has a very low weight gain by the time she sees him again, she may add one or two more feedings but we will have to wait and see. She said she wanted him back in two weeks.

Lastly, the psychologist came in and just wanted to touch base with Carson's home life and Charlie's position and also getting him in bed and not throwing food. She said that the throwing of food and not sleeping is definitely something psychological going on. She said he in acting out because he is worried or scared about something. He is yearning for attention and will get it however he can.

She then wanted to know what Charlie's involvement was at this point and I told her that he said he was giving Carson a 100% commitment. She wanted to make sure when the "newness" of Carson's situation ran off that he was still going to be here. She said if not, he needed to go away permanently. She is very upfront and doesn't hold back. We are still going to use the same plan about him throwing things and we aren't going to be as aggressive just yet with a bedtime ritual since I'm getting up at least once and sometimes twice to feed him in the middle of the night. I also asked her how much longer she wanted us to stay home and not take Carson out to different environments and she said she wants him to stay put and it is just something we will have to evaluate each visit. She doesn't want to rush it. She feels we need to improve some of his fears and behavior before we go out. That way he isn't acting out in public as well. She also doesn't want him spending the night anywhere but my house because if we are working on his bedtime behavior, it has to start in his own environment. This is now going to affect some of Cody's upcoming soccer tournaments. I'm going to have to figure something out quickly.

So tonight Charlie came down after work and we just ordered pizza. First off, I have cooked every night this week and Carson has thrown all of those meals on the floor. Secondly, this is as close to eating out as I'm going to get for a while since we are discouraged to going to eat in a restaurant due to distractions. I did ask him if he was going to stick around after the newness ran off and he said he would. I asked him even if this situation does last 3 plus months and he said that he would like to eventually have Carson come up to his house and I told him when the doctor thought the time was right but I would be there as well and he said that was fine. So I guess time will only tell. I told him that Dr Turnbough said that the first time that he isn't owning up to his responsibilities that I will need to stand my ground and keep Charlie at a distance. I will pray that Charlie will continue to see the importance of this situation and keep the attitude that Carson is and should be our number one priority. I have actually seen a little improvement when Charlie was over here tonight. Today, Carson ate 3 bites of a banana and one jello cup with no water. Charlie came over and he actually ate 3/4 piece of cinnamon toast, 1/2 of a slice of pizza and when we were ALL still up at 1:30AM he asked us for a bowl of Lucky Charms. He ended up eating 1/4-1/2 cup. YEAH!!! Carson really does love his daddy and he even though we always have a good time together, there is something different about his attitude when his daddy is around. I told Charlie that this should be a wake up call and I can't see anything but good coming out of this. Carson can see that he can count on Charlie and in the long run, it will build a stronger bond between the two of them.

Thanks again to everyone for all of your support. The comments, emails, and phone calls have been so welcomed. I will never be able to fully explain how much it means to me. You all are the greatest. Please keep sending prayers our way. Just because we got to come home today doesn't mean we are out of the woods. Dr Robertson said that we should plan on being admitted every visit if she doesn't like what she sees. She told me to not stress over it because it isn't necessary a bad thing. It would be more to work on adjusting his feeds so that they are beneficial to him. But to me, anytime your in the hospital, it is a very stressful time.

5 comments:

Pam said...

I'm so glad you guys got to come home. I was worried about you. We had a feeding specialist appt yesterday too.

They have discovered that Rhett is allergic to dairy products so they switched his formula.

Which means I have a ton of pediasure left. I need your address though, would you email it to me? Or call or whatever is easier for you.

I want to get it to you before you have to order more.

I totally feel your pain about the whole replacing tubes and stuff. Rhett hates his G-tube touched and we have to change dressings on it twice a day. I can't hold him down on my own either.

Just wanted to let you know I am thinking of you, and I am glad that Charlie has stepped up and put Carson first.

((HUGS))

Pam and Rhett

Rachel said...

I cannot explain the relief i feel that things are looking up for you. I am so glad you were able to come home and that Carson didn't lose any more weight. The more I get to know you, the more I completely look up to you! You are one heck of a G-R-E-A-T mom and I envy that from you! Carson could not ask for better care and better commitment from anyone other than you!

I'm glad Charlie is giving it 100%. I will pray with all my heart and soul that this will continue and not fade away.

You are always in my thoughts and prayers!

If i'm better this weekend...i'm coming by. Does Carson have a favorite candy/treat/game? Something I can bring with me to make him feel special?

Let me know.

Love ya girl!!!

Rach

Julie said...

Wow! Lots going on since I last was able to get here. Sorry for the frustrations and happy for the positives. I hope that Carson starts eating better and putting on weight. I don't know if this will work because of his particular needs but I know some people who have used Carnation Instant Breakfast instead of Pediasure because it's a lot cheaper.

You can definitely pull through this and your boys will be just fine.

I'm not being very eloquent but my thoughts are with you guys!

Aimee said...

Glad to hear that you're home. I'll continue to send prayers to you and Carson. Please let me know if there is anything you need! ((HUGS))

Shari said...

I am so glad you got to come home and were not admitted. I have been praying everyday that Charlie would see the light and be in Carson's life. It's so important for a boy to be able to look up to his father. I pray it continues. You are a great Mother! Keep on keeping on!