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!!

Hello- This is Nana again...a.k.a. Patty. Liz asked that I give a short update so here goes.

Jett has been home from the hospital now for a little over a week and is doing pretty well. His cough is still persistent but productive so it is difficult to know if it is residual rsv or the cf cough that he will probably have. If Jett stays well, he will return to the hospital on Wednesday and have his resection surgery on Thursday. Still no word about the German TPN for his nutrients. Jett has hardly left his home since getting out of the hospital. Liz and PJ are being very cautious about allowing him to be exposed to anyone or anything this week.

It has been a busy week this past week. Uncle Eric from AZ came to town for a short visit. Unfortunate Aunt Merry and little "sweetheart" Kaleigh Anne were not able to visit this time. We missed them both very much! We did have a family dinner one night with all the local family members accounted for. I have attached a couple of photos. Jace also had a busy week. He started his preschool class this week. His teacher is a a friend of Nana's so we are hoping that will help with the transition.

Please be sure to pray for our little Jett fighter this week and thanks for all the past prayers on Jett's behalf. He definitely is a FIGHTER!!

Update

Jett came home from the hospital on Thursday night. Our discharge was delayed due to a medicine he was discharged on that needed to be shipped from Kansas. The pharmacies had it locally but our insurance wanted it to come from their specialized pharmacy due to the cost. It didn't make sense to me to have him stay another day in the hospital...you would think that would be more expensive.

Jett has been miserable at home until last night. We finally got a medicine that helped with his coughing and tightening in his chest. He is a new babe today. Finally he is smiley and happy. We meet with surgeons on Wednesday. I am hoping to get surgery scheduled next week before he catches something else. Right now we are living in a bubble with him until we get him put back together!

Tomorrow we will bring the babe home...

After 11 days in the hospital, Jett will be released from the hospital to come home tomorrow. RSV has been very difficult on his lungs and requires so much effort to breath. The doctors will not perform surgery for a few weeks until his lungs have had a chance to improve. Tonight I am staying at home and will try to catch up on sleep. Pj is staying with the little man so I hope they do all right.