Monday, January 26, 2009

Rough morning...

Well, Cody had a pretty good night sleep but that didn't seem to help this morning. He got up about 8:15 and we headed down to have his radiation treatment. He did very well and we finished pretty quick and came back up to start his feeding tube procedure. The process it's self went without a hitch. When Cody awoke he was none too happy. The feeding tube really irritates his throat. He is demanding to have it taken out. I've tried to side track him but he will have none of that. He just cried himself to sleep so we will see how he is when he wakes up.

I have no news on his blood numbers yet. As soon as I get them I will try to post. I'm a little discouraged though. We can tell a lot about his liver by looking at his stool. When he is having bilirubin issues his stool is very light in color. Well this morning he had a bowel movement and it was very light in color.

It's times like these that I feel so helpless. I hate making him go through all of this. It's just crazy... He has been through so much already.. If we end up taking this tube out it means that he will have to get a button place on his tummy. That will be the access to a feeding tube. I loath the thought of having another hole put in his little body... It's just not right...

Just wanted to let you all know what his blood numbers are. Well as suspected his bilirubin numbers are up to 16.4 as well as all of his other liver numbers are back on the rise. The doctors seem to really be at a lose. They have nothing firm to point at, just the suspicion that it has been drug induced and we have to wait it out.

It's been a very long day. Not only because of what Cody has gone through but Georgetown in general. Many of the nurses we know and love are gone. Some have left for other hospitals. Some are doing the traveling nurse gig and some are in different departments. We still have some of the nurses. The doctors are all still here and we have the art therapists that mean the world Cody as well as Diane and me. One part that really seems to have hit a big time low is the food service. Many of you have heard me mention it before but when you are in-patient you are pretty much at their mercy. It seems that the weekend doesn't really matter much to the people they contract the food service out to. It's like they all leave for the weekend and don't really care much about what happens there on the weekend. Yesterday Diane ordered fish sticks for Cody and they sent up a piece of fish. That's right, a piece of fish. No side dish, no dessert, just fish and milk. This is dinner for a 6 year old that you are trying to get to eat. Today they sent breakfast to Cody but he was NPO - Non Per Os (Latin: Nothing by Mouth) because he had sedation for the feeding tube procedure. For lunch they didn't send him any lunch at all. I had to try and get Cody to eat some microwave lasagna. As of 6:30 this evening they still had not served food. There are two reasons I going off on this subject. First, it's because all of this stuff builds up and this is my stage to say what's on my mind. When families are in this position and they are worried about their critically ill child they shouldn't have to worry about this crap. The second reason I'm bringing such attention to this is because my friend Jeff works at Georgetown and I know he reads my blog. He will make a point of bringing these issues to the attention of the proper people.

Tomorrow Cody will have his last chemo of this cycle and his last radiation of this cycle. The doctor hadn't come to talk to us before I left so I'm not sure what the plan is.

I'm tired and I need a shower. Thanks for listening to me.. I hope I have better news for you all tomorrow.

11 comments:

Anonymous said...

Mickey, sorry to hear that this morning didn't go as well as hoped. Hopefully this afternoon when he wakes up things will be better. Praying for you all. Praying that his bilrubin numbers go down.

Susan and Jonathan

Cameron said...

I am so sorry!!!! I hope after his sleep that he is more comfortable. Praying...praying...praying.

Mary

Anonymous said...

Aww poor Cody. I have been thinking about you both today. Hang in there...

Kate (feetdon'tfailmenow)

Anonymous said...

Hugs and prayers for Cody!!

Pat (ACCA-NCC)

Cap'n Ron said...

You're right, it just ain't right. I really do wish there was something I could do that would make a real difference in all of your lives. That little guy has already endured way more than his share of misery. God bless all of you!

Remember to take care of yourself buddy.

Ron

Dottie O said...

I hated to read about your hard morning.

Keeping you all in our hearts,

Dottie

trash talk said...

%#@&**!!! What kind of a meal is that? Good for you-let it out and maybe the word will get out. I don't always have the right words to say, but if you get a chance go to the button for Witt on my blog. This is a journal for an amazing family and the power of prayer. One of the recent posts talks about how we struggle to find the right words to say in prayers, but that God knows what's in our hearts and understands. I hope you know what I want to say and understand as well. I am praying for Cody's healing and y'alls continued strength. Debbie

delighted heart said...

Ditto what Trash Talk said! I found you through her blog. After praying for you all this morning i read some of your story. My heart so goes out to you and sweet Cody and your family for all you've been through. (WAY too much for anyone to bear.) I read that there was a time where you were questioning God...why did he do this? It's certainly ok to question Him but I have to tell you He didn't do this. God loves you and Cody and your family and didn't send this to you. Did you ever hear of Jesus in the NT ever giving anybody cancer? No, He went about doing good and healing all those who were oppressed. The Word says in John 10:10 that it's the thief that comes to steal, kill and destroy. Jesus came to give life and life more abundantly. Please don't take these as harsh words...I just want to lift you guys up! It sounds like you've hit your Mile 19 in your marathon. I want to encourage you to keep going. And if you'd like to hear some more encouragement you can go to www.familylifechurch.com under media... "God Chik" there is a message about hitting Mile 19 from our women's Chik Nite...your wife might like to hear it. There's other messages of encouragment there also. We're going to be praying for ya'll. (Trash Talk and I are from Texas...you knew that from our accents didn't you!) God Bless You and may tomorrow be a better day with much better food for Cody!
Give him a hug for me!
Patti

Anonymous said...

Mickey, that is just not right, but you know this already. I hope the right people are listening to help fix it. Anyway, I hope today is better. Praying that he eats and eats well. Praying that his numbers go down and that the doctors figure out what is wrong.

Susan and Jonathan

Jim Wilson said...

Mickey,

We live just across the river in Arlington. If Cody wants a special meal, just let me know and we'll find it. We're usually loaded with fish sticks.

Becky's Dad
703-247-3346 (h)
202-255-7826 (c)

Deck Ape said...

Jim,
thank you very much... You know exactly what's going on here.. LOL I appriciate your offer...

God Bless..