A Hard Week

Hello, Friends. It's been quite the week here in Little Buddy's household. The fun all started on Tues the 7th in the evening when his NJ tube got clogged again! After several failed attempts to unclog it, it was decided that we would once again be making the trip up to PCMC in the morning. The sun came up, and away we went. When we got there, his doctors and we decided that the best thing to do was to pull out his NJ tube (Mom got the very joyful honor) and move the surgery up for the insertion of his GJ tube. We couldn't get a surgery time until the next day, so we were kept in the hospital over night so he could be monitored and given IV fluids. Little Buddy had a very difficult night in the hospital. He was hungry and tired (having not "eaten" for 24+ hours and having only slept about 5 hours the night before), and just wanted to go home. LB was almost inconsolable, and he finally crashed from exhaustion after midnight.

Thursday morning finally came, and off LB went to surgery with his mom sure that all our feeding tube troubles were behind us. Sigh. Everything went fine with the surgery, but when LB got up to his room and we tried to start feeding him through his shiny new tube, guess what...yup, it didn't work. The surgeon said that everything had worked perfectly in the O.R., so we had to schedule time in Fluroscopy (a fancy word for a special x-ray) to see what was happening in the small intestine. And, you guessed it, they didn't have time in their schedule until the next day. Mom went home exhausted at this point, and dad went up there to take over. Once LB made it into Fluroscopy they found that the tube had turned onto itself and that was causing the block. They were able to fix it rather easily, and LB finally started getting food, almost a full 72 hours after his last meal. He got to go home Friday night, and couldn't have been happier to get there!

While LB was up at PCMC they did an MRI to see if there was any recurrence of his tumor. They did the MRI of his full brain and spine, and there wasn't a sign of tumor anywhere! Very happy news, to say the least!

Another bit of happy news is that LB got to go back to church for the first time on Easter Sunday. He was so excited to go!!! And everyone at church was equally excited to see him there! He just loved it!!

Unfortunately, the joy was short lived. After church was over LB started throwing up again, and again, and again. It got so bad that mom and dad decided that he needed to make the trip back up north, again. The docs decided that he maybe had a slight infection from his GJ tube and put him on an antibiotic that seems to be doing the trick. He only threw up once today. We're praying that trend continues.

To top it all off, mom got very sick this week, and was flat in bed for almost 36 hours.  I'm starting to feel better now, but man, that was a bad one!

So, hopefully, we have a bit more of a break before LB goes in for his first chemo treatment next Wednesday. We have a year of treatments ahead of us, but we are trying to take them one at a time. As frustrating as all of these experiences are, we can't help but be so very grateful for the technology that is helping to keep our little boy alive. But, of course, most of the help is coming from Above, and we are more grateful for that than anything!