Wednesday, May 25, 2011

Infection again :(

Monday night we ended up back in the hospital. It all started Monday afternoon when his nurse came to take his labs and check his dressing. The dressing had some green discharge on it so she changed it and it was red and tender. She said it looked infected and needed antibiotics, so she called and left messages with his GI doc and surgeon. At 5:30 I still had not heard from any doctors so I paged his Pediatrician to tell him the issues. He called the surgeon on call and they wanted us to bring Zach over to the ER. We were supposed to be at the hospital at 6am on Tuesday for his motility test and upper endo.
We came to the ER and they took blood cultures and bloodwork and got us admitted. Luckily it looks like the infection is just local to the site of the central line. They started him on iv antibiotics and said we would be here for at least 48 hours to make sure the blood culture was negitive. They also canceled his motility testing AGAIN :(
He is doing really good though, no fevers!!! Which is good, cultures are still negitive. Hopefully he can go home on Thursday or Friday. His motility test got rescheduled for June 7 under sedation instead of anesthesia so he can't have his upper endo at the same time. After an infection you have to wait 3 weeks before you go under anesthesia but the doctors do not want him to wait another 3 weeks so we are going to do the sedation for the motility test and then do an upper endo in a month.

Tuesday, May 24, 2011

A vacation finally

We finally got a little vacation from this crazy mess of a year. We went to Cherry Grove, SC and spent a wonderful week down there. It was wonderful for everyone to just get away without doctor appointments or the hospital.

Even with Zach on his TPN 20 hours a day, it did not slow him down a bit on the beach. Him and Luke loved the sand and the ocean. They loved jumping waves and playing in the little pools that the tide would leave in the sand.

Could he look any happier? I am so glad he got to get away before reality hit again.

We visited the Ripley's Aqaurium and they both loved the fish and sharks. Zach's favorite part was seeing all the "Nemo" fish in the tank. We also visited the Alligator Adventure and saw lots of alligators, birds and other animals.

It was a great time and much needed by everyone. The boys cried when it was time to go home but hopefully we can go back soon.

Wednesday, May 11, 2011

We are home

Yes, we have been home for a little over a week now and it is so great. Being in a hospital for 34 days was exhausting, not that we did much but emotionally it was draining. All of the ups and downs and no diagnosis was horrible. Zach was so sick, and the reasons we went into the hospital never even got addressed due to unforseen circumstances that kept popping up.
We went through 3 surgeries, 3 anesthesias, 2 central lines, a blood infection, numerous x rays, a heart echo, a blood transfusion, a night in PICU, a horrible virus and the whole time with fevers of 103-105. We got discharged when the fevers broke, no growth on the blood cultures and to come back in a few weeks to have his motility test done. He does go back on May 24th for his motility test, we have to be there at 6 am and he stays overnight hooked up to the machine measuring his stomach and intestinal contractions. Hopefully we will have some answers after all the testing is done.
Even with all still going on, he has been doing pretty well. He has gained 3 lbs in the last few weeks!!! That is amazing and we are so happy. He has been 22 lbs for over a year even with g and j tube feeds and now being on TPN 20 hours a day he has gained. He is now 25 lbs!! We never thought we would see him with chubby cheeks and little fat arms or not being able to see his ribs. So even though he has to play in the yard pulling around his little blue bucket with his tpn (milk) and pump in it, he is soooo happy.

Thank you so much to everyone for all the prayers and thoughts during our hospital stay.
Zach's picture is featured at the 4:38 mark. This is a wonderful non profit organization promoting awareness and research for Eosiniphillic disorders.