October 12th! ? Really??

Wow does time fly....I cannot believe we are in October already. I wish I knew where the last 6 months went.

It has been a very long time since I updated the blog but actually not much has been happening. We are slowly going up on Jett's feeds during the day. He has absolutely no interest in taking anything by mouth so we give him everything through his g-tube. He contimues to battle lung infections and has a cough that is lingering. I believe his c-diff, the belly infection, has finally gone away. He has been much more pleasant lately although he does have bad days.

We are hoping to get some relief in the near future, the insurance company has ok'ed us to have a private nurse a few times a week. This should allow me to get out of the house and back into the office a bit. We still go nowhere with Jett because of all the germs going around. BAck and forth from my parents' is about the extent of it so as you can imagine, I'm looking forward to a little socializing.

Pj and I did get out and go to Halloween Horror Nights last week which was a blast. We also got a nursing sitter for Jett so that Pj and I could take Jace to the movies. I ended up curling up on the seat and totally passing out. Pj ended up leaving because the movie was 3D and he got a horrible headache. And that was our family outting...pretty pathetic but we are not giving up!

The plan is to continue to increase Jett's feeds until we can get him off the IV nutrients. We still have a long way to go but are making progress. Developmentally he is doing pretty well considering all he has been through. He can sit up in a bumbo by himself now and is working real hard at rolling over. He also gets his legs up under him when he's on his belly. He laughs and babbles a lot, especially st his big bro who can get a smile from him at anytime!

I have not been able to send THANK YOU cards for everything people have sent and done for me and my family. I am so grateful though and appreciate every prayer, dinner, gift card, present, words of encouragement and can you believe we even had ladies from the church come out and do my yard work??? Thank you from the bottom of my heart for everything!!!

Liz

Update

Tuesday was the day of appointments for the family. Jett had 3 and Jace had 1. It was a long day but nice to get them all out of the way. Jett is doing fine, he is sounding a bit more congested with some yellow green mucus so he is back on antibiotics. I dont think we will ever get rid of c-diff because just as we get it under control, he is put back on more anitbiotics. He is tolerating his feeds well but we still have a long way to go until he can be off the IV nutrients.

Pj and I are exhausted beyond belief. We joked because we had a babysitter for Jett tonight and discussed getting a hotel room so we could catch up on sleep. We went to dinner instead but we could barely keep our heads off the table. Jett sleeps very poor lately...not really sure why. The day is just too busy to catch up on sleep. He gets a minimum of 9 breathing treatments a day, has 12 meds to be given in his Gtube, not to mention the 4 feedings thru the Gtube, the dressing changes and the central line and the nutrients that run through it. Pj has gone back to work and I dread those evenings by myself. I usually go to my parents although packing up all of the necessities is a chore in itself!

I'm not complaining though b/c it's all worth it to have him home! Hopefully soon we can start eliminating some of the regimen as he tolerates more and more feeds.

Thank you for your thoughts and prayers!

Liz and fam....

Again this is Nana..

Well...what a blessing today was! Jace celebrated his 4th birthday with Mom, Dad, AND Jett...Everyone at home! Jett came home yesterday evening from the hospital. Last night was a little difficult with Jett waking and stirring a lot during the night. Per Liz, he was a little fussy during the day but when Nana and Pop and Beema and Ampa came to celebrate Jace's birthday, Jett was a pretty happy camper. I took a few pictures of the birthday boy Jace and of Jett. Hope you enjoy them! The last 2 days have really been big days for the family.

Sorry the pics are not so good. The camera has died and the phone doesn't work all that well!!!

Nana again.... Liz asked that I post a couple of pictures taken with my phone. They are not very clear and Jett was very sleepy and ready for a nap but I told her I would post them.

Jace will be having his big 4th birthday on Wednesday. We are hoping the whole Socie family will be able to celebrate at home together!!!

Jett was moved to a step down unit

Jett has continued to make baby steps. He's tolerating more and more milk but still not enough to get off the IV nutrients. He has been moved out of the intensive care unit to a regular pediatric floor. The doctors believe we can probably take him home mid week next week. He is such a sweet baby I cannot imagine how happy he will be to get a goodnight sleep at home. He is woke up quite frequesntly. This morning for example at 4am lights were turned on, he was undressed and weighed. Good news is he has begun to gain weight again.

Hello again...Nana here. Liz and PJ are so busy 24/7 at the hospital it is difficult for them to have the time to put updates on the blog. So I will try to give you some of the news. Jett was introduced to pedialyte early last week and did fine with it. They started very slowly with just 5 cc's every hour. They eventually increased him to 10 cc which he tolerated well. Finally late last week Jett was able to pass mucus and pedialyte all the way through the intestines!!! This was huge! The doctors started him on breast milk very slowly and he is now receiving a little over an ounce of breast milk via the gtube if he will not take it by bottle. Most of what is passing through is breast milk and it does not appear much of it is being absorbed. Jett is loosing weight so the doctors have order enzymes that we hope will help him absorb what little milk he is getting. He is still on TPN (i.v. nutrients) but it is being reduced as milk is increased. The special TNP has arrived from Germany and is being used but no report yet if it has helped his liver.

Bad news is that Jett has tested positive for cdiff again. No treatment for it so far. He does not seem to be in pain. Still no idea when Jett will get to go home again. He is doing lots of "5 month old things". He has given Liz a few belly laughs the last few days. Believe me, it warms Mommy and Daddy's hearts. They are such amazing parents....

Jace has been VERY busy going to school on Tuesday and Thursday morning. When asked if he likes school, you get NO response. If you ask what did you do today in school you get "Nusing"(nothing). Yesterday as Jace and I were having our lunch together, Jace shouted out "days of the week". The lightbulb went off and he remembered they were learning the days of the week. The look on his face was priceless... He makes me smile. He is very understanding about Jett being a sick baby. He is very accepting (most of the time) that Mom and Dad have to spend lots of time at the hospital. He gets to stay with Grandpa and Grandma Socie or Pop and Nana a lot of the time. He is always a pleasure.

We are prayerful that the enzymes will help Jett and that he will be aloowed to come home soon.
Everyone's prayers and thoughts are VERY apprecitated. Please continue them.

Surgery is complete!

Jett was admitted to the hospital on Monday to get his lungs "tuned up" and ready for surgery for Thursday.
His surgery went well and the results are the best news we've received so far. Basically there was concern that there would not be enough functioning intestine to put back together and absorb enough nutrients to grow and thrive. After letting the intestines heal and grow over the past 5 months, there is now plenty of intestine. The surgeon was able to piece together a few sections of intestine so now he has one long, continuous bowel like anyone else (minus the part they removed in the first surgery). He no longer will be considered to have short gut syndrome.

The recovery will be lengthy because they will introduce food very slowly to make sure all parts of the newly created intestine work. Meanwhile he is still receiving IV nutrients through his central line. During surgery they also placed a G-tube which is a tube that goes from his stomach to the outside of his abdomen. THis will allow us to feed him when he is not interested. The G-tube may be something he has for many years to allow for supplementing his diet during sleep at night. This is a typical treatment for the malabsorption problem from the CF. Most kids with the same genetic mutation require the Gtube throughout adolescence.

THank you to everyone for your thoughts and prayers. We are very thankful for everyone that has been following his recovery and so grateful that he has received such a great prognosis!!