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.

Quick Post

Jett's been back in the hospital since Friday. He began feeling poor on Wednesday and then developed a low grade fever so we brought him in for evaluation. Somehow the poor baby has RSV again and also has c-dif. He feels terrible and is in pain. We are managing and getting along well this hospitalization. I just dropped Jace at my moms and am on my way to to relieve Pj so he can go to work. Tag team parenting!!!

Friday was supposed to be the surgery to re-connect the boy. I am uncertain at this point if the surgeons will proceed...I would be surprised and I am reluctant to them do it anyhow!

Sweet pictures of the boys. Good to be home but not without trials. This is Nana filling in for Liz, PJ,Jace and Jett. Pj is busy trying to get in as many hours at work and still be available for Jett, Jace and Liz. Jett is struggling with taking his oral medications and is having upset stomach problems. Liz is concerned he is not getting enough of the medications in his system to do much good.

Liz, Jace and Jett got to go to Pop's house Friday night for Pop's birthday. PJ had to work. Uncle Nick and Aunt Vicky came too and spent lots of time with Jace. A good time was had by all!

Plans are still to reconnect Jett at the end of this month! Keep praying for Jett and the rest of the family! As you can see by Jett's photo, he is a joyful child! Big brother Jace calls Jett "Big Boy" and is very happy to have Jett home from the hospital.

Home Again

We were able to bring Jett home on Wednesday evening. He is a much happier boy these days! Hopefully we can keep him healthy until his next scheduled surgery on July 31st. The surgeon will be re-attaching his intestines and placing a G-tube which will allow us to put him on a pump that will feed him all night long.

Having him home is great but a lot of work. In addition to all of the meds he was on previously, they have added 2 more that are given every 6 hours. He is a full time job plus!

I have taken a few pics lately and will post them as soon as I find the camera's charger! Ha!

Liz

Monday

Jett remains in the hospital. He seems to be doing a bit better although at times is uncomfortable. The doctors also found he has a staph infection in his lungs which he is being treated for as well. This hospitalization is more exhausting physically than the NICU. One of us stays with Jett at all times and sleep gets very interupted between the alarms, whistles and nebulizer treaments all night long. Pj and I tag team although he is working in the evenings which only makes things more complicated. We are lucky we have both sets of Grandparents nearby to keep Jace happy. We are hoping to be able to bring Jett home by mid to late week. Surgery will be down the road a few weeks so we will be back here soon.