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

At The Minimum

Well, we hit our minimum cc's per hour at about 2:00 AM. So far, we are holding steady. We needed to hit our 42 cc per hour of feeding so we can prove we are starting to tolerate feeds and so we can get rid of that pain of an IV. But, we do what we have to do. I didn't realize how aware and in tune to things little Mr. Hayden is. Last night I needed to run get something for Hunter and asked Hayden to stand next to him on the couch, sometimes Mr. Hunter tries to do tricks. Hayden looks at me and says, "You want me to stand here and make sure he doesn't roll off the couch and pull out his IV, right?" Crazy crazy. What a good brother! So, we continue to keep our fingers crossed that we are over the hump and that we don't have to head on a road trip to Madison today. We will keep you posted. Please continue to keep Huntman in your prayers. God Bless

An update

Well, I have been trying to tell Hunter that if he wanted more attention he just has to tell me :)

We saw the GI doctor yesterday and we have a plan. I don't know that I like the plan, but a plan it is. Hunter had a CT scan on Thursday to look at things and all looks well. So, yesterday we continued on Pedialyte, and he has tolerated it fairly well. So today we will continue with the Pedialyte until 4:00. At 4:00 we will start his normal feeds at a very very low rate, and supplement the difference with IV fluids. We have a minimum amount of fluids we need to get in his body, and whatever he does not tolerate with feeds we will supplement with IV fluids. Please say a prayer that his IV holds out so we don't have to poke him again. The poor little guy has been just like a pin cushion. If by Monday Hunter cannot handle his normal feeds, we will head to Madison to get a PIC line and start TPN. For those of you who are not familiar with TPN, this is an intravenous feeding. We need to start getting nutrients in him, and if his normal feeds aren't working, this is the only real option. This will mean a few days in Madison until we get things adjusted. Due to Hunter's Hirsch Sprungs and everything else going on the Dr. said it is just taking a little longer for his tummy to start working again. So, we are praying very very hard that by Monday we are back on full feeds and this because a week of the past. We have officially had enough fun!

So, please say an extra prayer for the Huntman. God Bless

The Struggle Continues

How does that saying go? In like a Lion out like a lamb? We are hoping and praying that is how winter will work for us. Hunter has been crying for two days now, you can completely tell it is GI related, of course. I am sure the antibiotics that he was on has caused his bowels to stop. We went to the Dr. this morning, and sure enough. We are now on IV antibiotics and bowel rest for 2 days. My heart just breaks watching him struggle so hard, whimpering and crying. I have had enough of this, we have to get to the bottom of what is going on. I know it is partially because of who Hunter is and the fact that he has Hirsch Sprungs, but there has to be something we can do. I feel like his tummy hurts more than it doesn't these days. February will be a year that we have been dealing with this and it appears we have not made any progress. We have been doing the rectal irrigation's twice a week to try and keep things moving, but as you can see we are still dealing with issues. So, we will give this 48 hours and see what the plan from here is. We are very lucky to have such wonderful nurses for Hunter. We were able to do the IV's here and run the fluids at home so we don't have to be in the hospital. Now we have to see how he does over the next 48 hours, and then recheck is platelets, white blood and red blood cell counts. Hunter's platelets are over double what they should be, red blood cell counts are low, and white are high, so something is going on. Please continue to keep my little man in your prayers.

So, just trying to get back to uneventful. Hope this finds everyone well. God Bless