Last Piece Of "Normal"

I have came to the road where I feel I am loosing the battle. The little piece of "normal" or what we consider "normal" is changing.

I have been struggling with Hunter's recent hospital stay. I am struggling with what the current days entail and I struggle what the next few weeks have in store for us. I am tired and emotionally wiped and sick of hearing how "Strong" I am.

The days of PICC lines, TPN, and the future thoughts of an ileostomy are just too overwhelming. I liked uneventful and I want it back. That little piece of "Normal" that Hunter had, I just want it back. Is that really too much to ask?

I guess just like everything, we will adjust. But I do have to say at times I am sick of adjusting. I am angry right now and I have to get past that.

I know that God is leading us down the path that is right for Hunter. In my heart I know this is the right road for him, I just need to take some time and digest, I guess.

So, sorry this isn't the normal type of post of me, but our "Normal" is changing.

Please keep Hunter in your thoughts and prayers

The Little Train Who Could

Do you sometimes feel like you just have to keep telling yourself I think I can I think I can, but yet you feel like you keep sliding back down that hill?

That is how this week has really gone for us. The Dr's have came to the conclusion that there is no obstruction in Hunter's upper or lower Intestines. Even though his bowel is so dilated and he shows symptoms of an obstruction, a lot of what is going on could just be from the Hirsch Sprugs he had at birth.

We have met with GI and the Surgeon to discuss options. We all know that Hunter's bowel's are not working the best and that motility is a big issue for him, so we aren't convinced we will gain much from doing a motility study on him.

So, the plan.... We tried to start Hunter back on some Pedialite, but he ended up throwing that all up. So, Hunter got a PICC line put in last night and TPN (intravenous feedings) started this evening. We will get him stable on this and be sent home for the holidays so we can get strong. The plan is to come back the week after Christmas sometime for an ileostomy. This is very similar to a colostomy, but it will be at the end of his small intestine, and they will remove his large intestine since it is not working yesterday.

It's hard to sit back and think about what this all means. Even though you know this is the right thing to do you sit and second guess yourself. So, that is what the week has had in store for us.

Continue to keep Hunter in your thoughts and prayers. God Bless

Traveling New Waters

Well, we have officially been admitted to Children's in Milwaukee. This is odd for us since we usually go to Madison, but the GI doc wants him to see the GI doc here that specializes in the issues that Hunter is having. So, we finally got in to our room from the ER last night (this morning). What is really crazy is that we have to be in the PICU, that is just NUTS. Oh well, what are we going to do.

So, now we wait for GI. Please keep Hunter in your thoughts and prayers.

The home front is a little rocky too as Neil is home with a 5 year old that was puking and has diarrhea. Seriously stop the madness.

I will try to keep you all posted. God Bless

When's Enough

That is about all I have to say. Hunter has another bowel ilieus. Friday we went for an xray due to strange stool and puking. The doctor finally agreed enough is enough. We took Hunter in for another xray on Saturday, things looked a little better. We spent our weekend on bowel rest, means IV fluids only. Poor little man, I just feel so bad for him. So, today is the day. We are holding tight. Our pediatrician is reaching out to GI in Madison to find out what is next. We know there will be something, but what we just don't know.

For the time being we hang tight. Please keep Huntman in your thoughts and prayers

God Bless

Quietness

Well, things have quieted down for the moment, well in some respects. Hunter has been doing good for the past week, so we continue to pray that he stays on the upswing.

The holidays are in full swing around our house now. Decorations are up, except for our tree. We have breakfast with Santa this weekend and are hoping to get a tree afterwards.

With the holiday's in swing, its time for some updated pictures. My wonderful friend Donna was able to get some great new pictures of the family. We are so lucky to have her to help capture these precious moments. Here is the whole crew and Harrison and Hayden loving on their brother. These are the types of moments that bring tears to my eyes.










Here is the whole smiling crew, Hunter 7, Hayden 5 and Harrison 2










Then of course mom and dad needed a quick moment with the Huntman










Hope you enjoyed the new pictures. God Bless

Settling Down

For the time being, life is settling down. Hunter is now getting feeds pretty much 24 hours a day to see if that will help with all the GI issues he has been having. The other day all I could smell was feeding, he must have been refluxing, but I am keeping my fingers crossed that it was just a fluke. Otherwise, the Huntman is good. It feels so nice to be able to say that : ) We will continue to pray that things keep going down the right track.

Tonight we have Hayden's Parent Teacher conference. We received his first progress report and were very happy with the report. For those of you that know Hayden can you imagine that one of his strong points is his love and compassion for others, he loves helping others. That's my Hayden. : )

Mr. Harrison is getting big. He has grown up so much in the last month. We are enjoying watching him and Hayden wrestle around, and watching him be concerned about Hunter when he scratches his face.

Otherwise, we are just savoring the time of uneventfulness in our home. Now, we should probably start thinking about Christmas. Talk about being behind!! We are getting pictures on Friday so I can't wait to share those.

Hope this finds everyone well. God Bless

Keeping Our Fingers Crossed

Well it is Wednesday and we have our fingers crossed. Our feeding goal as of tomorrow is 52 cc's per hour, we are at 45. Yesterday Hunter had a good day, but last night was a little rough for him. Hunter seemed to not be tolerating his feeds so we went a little backwards from 48 cc's to 45. That seemed to make him more comfortable. Hunter for some reason needed a little O2 to keep is stats up last night, not sure if he was just that tired? So, we continue to pray that we make it to our goal by tomorrow. We have to check in with GI tomorrow as to where we are with things. If we don't hit our goal, not sure if that means Madison or not. But, overall I have nothing to complain about. My little man is such a trooper. You should have seen how proud he was of mom and dad the other day when we pulled out our first IV. : ) OK, maybe I'm exaggerating. So, please say an extra prayer for Mr. Hunter, and we will try to keep you posted.

Hayden and Harrison are doing good. Hayden sure does have the whole IV thing on his mind still. He was still talking about it last night. Well, at least we know he listens.... sometimes.

Have a fabulous day. Thanks again for checking in. God Bless