January :-)

Let's begin with something positive--Zachary is enjoying playing with all of his "CARS" from the Disney movie. He loves to line them up on the table, and play with them. I think he has every accessory possible. Although he isn't suppose to go out in public (due to his immune system) I put him in the stroller and took him to "toys r us" and wouldn't let him touch anything, but he pointed and picked out a few CAR toys! (Thanks Aunt Felicia for the gift card) I realized he was so excited because he never gets out AND he was able to pick out some new toys.

Zach's J part of his tube was flipped and clogged again! Adam and I talked with the doctors and we all decided that it was time to pull the J port out and just feed into the stomach. Although the amount that goes into the stomach is much smaller it is less painful and has less complication for Zachary. He is tolerating the feeds through there at 20ml an hour and is getting the rest of his needed calories through his TPN.

He had a follow up appointment this week, and to no surprise he didn't gain weight. He is again not on the growth chart at all! The plan stays the same since we don't have many other options. He will continue to be fed (22 hours) through his stomach (button or g tube) with a small calorie boost---in order to get the most calories possible. In addition to those feeds he will continue to get his TPN over twelve hours every night. Every Monday a nurse comes to change the dressing and get his blood work. We get his blood results every Wednesday to make sure that his organs can handle the stress that TPN causes. The TPN causes such high levels of stress to organs because you have nourishment going into the circulatory system, and not the digestive system so it makes organs work harder.

We will meet with the doctor beginning of February (after six weeks with a PICC line) to see how his organs are looking and if there is weight gain. The true test is to see if he will gain weight. The PICC line has such high risks on his entire body that we have to make sure that it is giving us what we need to take such great risks. Praying that his body will accept the nutrients would be what he needs. It isn't that his body doesn't absorb, process or breakdown the nutrients properly----his body just doesn't know how to use them for growth. The best way the doctors have described him to us is simple.....his body is like a clock and all the pieces were individually fine or in small groups fine, but when you put them all together his clock just doesn't keep accurate time :-)

I have to say I thought that watching him in the PICU when everything fell apart in September was difficult, but this PICC is becoming a close second. He goes to sleep every night with two IV poles in his room and I wake up constantly to check to make sure he hasn't pulled one out. Every night when he is hooked up to his TPN everything has to be sterile, and that is hard with two other kids. I think the hardest part of all this is seeing him scream when it is time for a bath. Zachary's favorite thing in the world is water! I think it relaxes all of his tense muscles. Bath time: which use to be more than once a day to calm him down...is now every other day since the PICC line has to stay dry. He loves his bath, but hates the tape, bags, and saran wrap that I have to put on him in order to take a bath. He now cries when it is bath time instead of smiling and getting excited. When your son looks at you throughout the evening and says, "no like it" and "hold me" I think that is harder than anything.

Again, I have to say thank you to everyone for all you do! Big or small nothing goes un-noticed. The donations are very helpful with getting help for us in the evenings when it is time to "hook him up to the TPN" and helps me take time off from work to go with Zachary to all these appointments. The dinners that are delivered are more help than I think anyone can realize. The thoughtful e-mails, texts, and messages help give us a laugh or know we have support. Thanks again to everyone for all you do in our lives.....when we can we WILL pay it forward.