Wednesday, December 24, 2008

Were home, but not all good news

First off I want to thank everyone for you strong prayers. God did listen and we were allowed to come home. Partly, because Christmas is tomorrow and all the clinics were closed.

Next I want to tell Amy from Kaden and Angel Ave and Rachel from Love for 9 thank you so much for posting on your blogs. This blogging community has been so surreal with all the love and compassion for my family. I cannot tell you how much you guys mean to me.

I also want to tell all of the other bloggers who left comments thank you as well. Your support has helped me stay focused. I find myself questioning God's decisions but all of you make me realize that we are in God's hands and he is going to guide us through this. What a better day to figure this out!!!

So now back to Carson, when I left off yesterday I took him to Children's Mercy South which is a hospital but it is an urgent care only place. Most of the patients there are stable kiddos as well as observations from minor surgeries and sleep studies, PH Probes, and other things like that. They are never very busy so I called the home health nurse and asked if Carson could go that route since they are always way less busy. She called them and they said yes bring him in and that there was NO waiting. That was a plus. So as I was driving there I was updating Jessica what was going on (Coltan and Cody's stepmom) and Carson was watching his Signing Time video. We got there in about 20 minutes and while I was talking I realized that Carson was asleep. I told Jess I would call her back later and went to grab Carson. As I was unbuckling him, I about fell over because I knew Carson wasn't sleeping. I grabbed him and ran inside and laid his limp body on the counter. 10-12 minutes later the crowd of nurses and doctors had him awake. He woke up and at first he was disoriented. Then he was scared. So they took him back immediately and the Dr came in and did a thorough history. Then she looked at the computer and read over some of his notes. She came in and had him hooked up to an EKG and they also did a blood sugar. After about 20 minutes, she came in and told me that she had called Children's Mercy Downtown and consulted with the Red Care team and she had ordered an ambulance to come pick up Carson and transport. At this time she was thinking some sort of seizures and told me that South didn't have anyone there at that hour to perform and that he needed to go downtown where they have every specialist there 24/7.

So the very cool ambulance arrived and off we went. When we arrived at the downtown campus, we went straight up to our room. Two doctors came in and we discussed everything. They then ordered an EEG and sent it down. Then as we kept Carson hooked up on the heart monitor they inserted his NG tube and finally at 2AM, we started back on his feeds. So this morning a whole group of doctors came in and talked to me about what our goals were going to be. At first Dr Livingston stated that she wanted Carson to take the NG tube out and let him eat today with out it. She said if he still wasn't eating that she would put it back in tomorrow. Then we had OT come up and watch him eat. Also a dietitian came in and we went over some ideas on how to help Carson since he has lost weight. After that we sat around and waited for the Cardio clinic to come down and get Carson for his sono of his heart. At this time they told me that since we have only had two episodes with Carson's unresponsive behavior, they didn't think we would find anything on a MRI. She said if he relapses and has another episode, they would rush him down and get one so we could see it as it was happening.

So the good news is around 4:00PM tonight the doctor came in and said that they didn't know that Cardio clinic had already closed down at noon and would not reopen until Friday. They are going to schedule me something within 5 days. I said that was fine. She then said it was very important to follow up with the cardiologist. I said fine. Then she said that we needed to figure out what the problem was. I then asked if she meant overall or his heart. The doctor said (like I already knew) that there was some questionable areas on his EEG and his EKG. So she was telling me that she thought he has something wrong with his heart. I asked that if what they think is confirmed can it be treated by medicine and she said I should wait and talk to the Cardiologist. So yeah we get to come home but now I must wait with all of this worry and guilt that I should have figured this out a lot sooner.

I'm going to be a crazy person and go ahead and have many people over tomorrow for dinner. Since I'm not suppose to leave my house with Carson, I will bring everyone here.

Tonight my mother was suppose to have the gift exchange with my whole family and because we thought Carson was staying, my aunt Mary took over. So tonight I decided it was best to stay in with Carson and we are going to get on the couch and snuggle and find a good Christmas movie to watch.

Coltan and Cody stayed with Chris and Jessica tonight and went to church with the grandparents. Jessica was actually on her way up to the hospital when I called her to tell her we were discharged so I believe she is going to stop by with all of her kids and mine so the boys could see their brother. Then I think Coltan and Cody are going to spend the night with Chris (Santa has always stopped by their house) and have an early dinner at Chris' mom's house and then back home to me for my dinner. So boys, don't fill up cuz your mom is making an extremely crazy spread. We are having a turkey (wish me luck, I have never made one before), I'm baking a ham, homemade mashed potatoes, potato casserole, a couple of salads, green bean casserole, stuffing, dumplings, and I'm going to try a couple desserts from my previous post.

I hope everyone has a wonderful Christmas and may everyone be safe and happy.

God bless you guys. I will hopefully finally download some pictures for everyone to enjoy.


Spaghetti said...

Thank the good Lord that you are home even if it is only for tomorrow! I am so thankfull that for the moment everything is being taken care of in God's hands. Keep believing! May your house full tomorrow spur him to love, live and maybe even eat! God bless!

Terri said...

Kaci wow what an "adventure" in not a good way. These kids are always scaring us that is their job. I'm glad you got to come home, although I know this doesn't always feel good either. WE will worry until the day we die. AS you said in your post, God does have us in His hands and hHe does know what He is doing!

I will pray.


Shari said...

Girlfriend! You need a break! I am praying for you and Carson continuously. Hope your Christmas is blessed and I will talk with you soon! Love ya!

Julie said...

Poor thing, you've been through the wringer. I hope your Christmas is beautiful (and your turkey too)!

Phoenix's Mom said...

Sending lots of prayers to your family. You are such a strong amazing person.
Merry Christmas

Rachel said...

I'm catching up on your blog now. Can't email you back becuz we had a virus and your email provider blocked us out, so that wont be fixed till probably tomorrow, but wanted you to know i'm getting your email and I will call you when I can. YES...LOVE YOUR BLOG! If you get the picture :)