Hanging in there

| | Comments (2)

Matthew had his eye appointment on Thursday and the doctor said that his right eye (which was the worse one) is getting slightly better and the left eye (which was the better one) is getting slightly worse. So far he doesn't have the plus disease where they need to do surgery. But again, it can change at any time. Please keep praying that his eyes heal completely.

On Friday, Matthew had the deep IV line put in along with another peripheral line. Unfortunately, both of them are in his head because he doesn't have any more veins to use elsewhere. There is one right in the front and in the middle and the other one is on his left side near the top. He has tape all over his head and it just looks painful.

The little guy is a trooper and I must say he is an inspiration to me. This has been an exhausting week for me spending A TON of hours at the hospital but when I see him and all that he has gone through, I always feel like I get an energy boost to keep on going. Even though I spend countless hours of waiting, talking to the doctors and helping the nurses, what I go through is nothing compared to him. He has been through a lot (to say the least) and is one of the bravest kids I know.

Unfortunately, next week brings only more tests for him. The GI specialist is planning on doing an upper GI test on him after Wednesday. They are doing this to see if he has any strictures in the intestines. The gastrograffin enema only showed the dye going up so far into the intestines from the bottom, but now they need to go in from the top with dye to see it all. Hopefully this test will tell them why his colon is still small and his small intestines are dilated and why he is having residuals and bloody stools. If they find a stricture, then they do surgery to cut it out and sew the intestines back together. If they don't see anything obvious, then they do surgery to do an intestinal biopsy to test for certain diseases and to see if they can see any strictures that way. Surgery will not happen next week unless they see something that requires emergency surgery. We will keep you posted on what they find out. Of course in addition to all this, he will have his eye appointment again next week.

Some good news though, is that the expanded panel of tests for the Cystic Fibrosis came back negative. There was a test in question that looked positive but according to the geneticist, it was negative. Of course we are not out of the woods until we can do a sweat test on him and that won't take place until he is about 4 to 6 months old, "corrected age". This means that when he is 4 to 6 months past his original due date of October 10th.

Please keep praying that God gives the doctors the wisdom to make the right choices and that he gives me the insight as to when to step in and say yes or no to the doctors and to ask the right questions. Please pray that this upper GI test tells them something that can be easily resolved. Pray for continued healing of his eyes, liver and his intestines. Thank you all so very much!


Jason & Jenn,
There is so much to be thankful for! He continues to grow, so that he can better tolerate anything he may have yet to go through. And he has shown that he has a lot of stamina, already! I know this summer has been exhausting, but I believe it will soon be a fading memory, and you'll have that bouncing baby boy at home to interrupt your sleep... You're continually in our prayers, and those of countless others.
Don't forget how much you are loved,

We just wanted you to know that we are with you to the end. We continue to pray for Matthew as well for you both. I know that it won't be long before this journey is over, and you will be taking that precious bundle home with you.
I just want to thank God again for his amazing provision; he is faithful, and I can't imagine living my life without his relationship.
We love you guys, and we just want to thank you for sharing your lives with us; we have grown in our faith as well. Love, Seth, Dawn, and Andrew

About this Entry

This page contains a single entry by Jenn published on September 13, 2003 7:03 AM.

Doing better was the previous entry in this blog.

Preparing for Surgery is the next entry in this blog.

Find recent content on the main index or look in the archives to find all content.