April---already!!

I am amazed and thrilled that Zachary will "make it" to his third birthday. With everything his body has gone through it is a miracle! As of right now his central line has been in for over eight weeks, and has been on TPN since December. The doctors said that after eight weeks on "packed full" calories that we should see some serious weight gain! Adam and I were hopeful that one of the many things were tried would work. We went in for the weight check on Wednesday, and found that he lost 1/4 of a pound since last month AND since December he has actually lost 1/2 pound. Amazing! I didn't know what to say or do. I stood there in total shock as I looked at the numbers on his scale. They wanted him to gain 2.5 pounds in 6 weeks and he lost. At this point no one really knows what to do!

The GI doctors want to increase the calories through his stomach, by adding more supplements. Which we have done already, but we will try again. He can't handle more volume in his stomach, but that doesn't seem to be the answer either. He actually is getting over 250 calories more than what a "normal" three year old would need. They are stumped and so are we. The food goes in, but it doesn't go where it needs to for his body to thrive.

We are trying the increased amount of calories for two weeks and then we will have another weight check. Overall, there is a HUGE decision to make...do we keep or take out the central line. With the huge risks of infection and bleed out with the line; the doctors have a hard time recommending to keep it in for no benefit. However, if we take it out he won't survive without the line. The doctors are discussing all of the options and we will meet in two weeks to figure out what to do. My gut says that they will want to leave it in since it is sustaining his life, until a problem occurs with the line....but that is a huge risk and gamble. We will see what they decide to do! I will keep everyone posted.

On the positive side---he is finally comfortable and enjoying his days. He is on some HEAVY DUTY pain medications and anxiety meds, so he is not agitated all the time. Adam and I also agreed that he could start school---he needs to enjoy his life. If he gets sick, what else is new! I will keep everyone posted with his new adventures to school next week, and the follow up on his line. Thanks for everyones positive thoughts, prayers and enourgement. This is a rollercoster ride that is too much, I would like to get onto a new ride with less excitment!