Upcoming Surgery

Wow. There has been a lot going on with Zander since the last post. It has been like a whirlwind. The doctors keep finding new things wrong, but no solutions to the problems that we know already exist.



Zander has gotten his wheelchair. It is really nice. Jamie has a handicapped tag now. She is able to park in the handicapped spots at the hospital. This allows her to get closer to the doors. The wheelchair is heavy. However, she is strong and can maneuver it into her minivan. It is cobalt blue with a black seat. There is a special backpack that fits the back of the chair so that she can carry Zander's diapers etc easily.



Zander has also been approved for a gate trainer. A gate trainer is similar to a walker that infants use prior to walking. However instead of plastic surround it and the infant sitting in the center, it is open and the seat is made of nylon webbing similar to what is in the base of chairs covering the springs from what I could tell. It will help Zander build his leg strength up and allow him to move forward and backward.



Here is the difficult part for this aunt to write



Zander was diagnosed with seizures. They started him on a medication and he was allergic to it. They started him on a new medicine and it seems to be working.

Last Friday, Zander had a cat scan. After 6 attempts of getting an iv started for the contrast for the ct, they decided to quit and do the ct without the contrast. It showed swollen lymph nodes in the chest and some other issues. I still haven't heard what they are.

After that appointment, Zander had an ear/nose/throat appointment. They put a camera down his nose and looked at his tonsils from the top side. They did not put him out to do this procedure. They sprayed mist into his nose and waited a few minutes and did the test.They determined that they have gotten larger since the last appointment. They are going to take them out on July 21. This appointment lasted 3 hours. There were several different people who came in to get information regarding Zander's history of what is going.

It was determined that Zander is going to be a very difficult case. There are several different groups at Mayo who will be involved during his surgery time. Neurology will be conducting Myastania Syndrome testing. GI will be scoping his stomach. Pulmonary will be doing several tests as well. Then, ears/nose/throat will remove his tonsils. They are going to try and leave the adenoids. This will help prevent food from coming out of his nose given his swallowing problems.

From what I gathered here is what is going down on July 21.
• Tonsils out
• taking a 1" deep by 1" square of thigh muscle for the Myastania Syndrome test
• a muscle stimulation test for Mystania Syndrome
• scope of stomach
• scope of lungs
• lung biopsy
• hair from lung/bronchial tubes biopsy
• blood test

Zander will be going into Pediatric ICU following the surgery. He will have a feeding tube inserted into his nose and into his stomach following surgery. He will have this for up to 3 weeks. They are doing this to maintain his nutrition. His swallowing will be an issue. HE will be in the hospital for several days.

Please pray for the doctors who are doing these tests, the anaesthesiologist, nurses, Jamie, my family, and especially for Zander. This little man has been through so much and yet smiles and giggles every day. Once you meet him, he has your heart. I love my ZZ. He is an aunt's angel.