Results are in...

Caed's lab work and other results came back......GREAT! (sbs speaking) They were checking for vitamin deficiencies and also pancreatic enzymes that are very common in short gut patients (causing fat malabsorbtion). They found neither!! Honestly, this was a huge shock, but SO VERY relieved. Now, we will concentrate on getting his incision healed once and for all.

Caed came running into the house a few days ago...frantic and crying. He had his shirt lifted up and blood was streaming down his tummy. My heart stopped for a few seconds until I realized his "scab" had been accidentally ripped off while playing. (he had fallen) We cleaned it up as best we could and then burned it. Oh, it looked awful! Dr. G's plan is to let the scab come off naturally (unlike the way it happened a few days ago) and then burn it....and repeat as long as necessary.

The news from NE truly makes my Christmas! We will start Caed on some supplement drinks...and then Lord willing, get his feeding tube OUT this next year!! Quite unimaginable to me.....it's been a long 4 years. But in the same breath, 4 years of continued faithfulness throughout all the good AND the bad. Thank you for praying for him......

Still waiting....

There were some contamination issues with the lab work, so we had to take Caed back and get a re-draw. Honestly, a piece of cake for him. He didn't mind in the least. It was more an issue for Todd and I. We are on pins and needles here waiting for results, so to be told we needed to "start over," was a little frustrating. So.....we continue to wait.

The incision is not looking good. It sends chills up Todd and I's spine when we see it. It is as though this past month and the last surgery never happened. Our next appointment with Dr. G is this Thurs., and hopefully we will have heard something from labs.

Trying to stay positive.......

Stone Cold

That basically describes Caed when getting any medical treatment these days. He has always been very brave, but the older he is getting...the MORE we are seeing this in him. Thursday he had to get his monthly B12 shot, the "big draw" of labs (9-10 viles), and then when the surgeon began burning and cutting on his incision....nothing. No reaction, just sat stone cold. Todd went with him and said the nurses seemed more nervous doing these things than Caed was!

Now, we wait.

In the meantime, we will start back burning the tissue with Silver Nitrate every few days. (hopefully it will work this time!) Dr. G did not feel the site was infected, so that is great news. We will go back to see her in 2 weeks. I'm certain we will hear something from our IRP team in Nebraska concerning Caed's labs. There has been talk that his body is not absorbing well (or deficient in certain areas); therefore, his body is having a difficult time healing (incision).

Caed has been OFF all feeds for the past 6-7 weeks!! The plan from our time in NE this summer was to wean him this fall and then see how he does "feed FREE" for a few months (checking labs along the way), and then hopefully have tube removed in the spring. This would be HUGE! Caed will have had his feeding tube 4 years. Unbelievable....when I think back on it all. However, if he is having these recent issues due to malabsorption/deficiencies, then we will probably look at some kind of daily supplement. (similar to nightly feedings, but rather taken orally) We are praying he won't have to go back on tube feeds. I keep reminding myself there are worse things than being "hooked up" at night, but.....this really would be such a relief to just have that thing GONE...once and for all!

One definite blessing throughout these past 4-5 months in dealing with his incision has been he FEELS GREAT!!!! Caed is the same active, funny little boy as always. He has not been in any pain (other than emotional at times), which is a huge praise....not to be taken for granted. Thank you all for keeping Caed in your prayers...again! He will get through this.