Thursday, July 22, 2010
Zander's Night
Zander had a very bad night. They had a difficult time managing his pain levels. They brought out the big guns to treat his pain. His oxygen levels are also dropping so they put him back on oxygen.
Surgery was Yesterday
Zander had surgery to remove his tonsils and do a lot of other medical procedures. Jamie, Mom, and Zander got to the hospital at 6:30. There was a communication error at the hospital. Zander was supposed to be the first case. However, he was the third case They didn't take him back for surgery until 11:15. It was a very stressful morning for everyone. I had a difficult time being at home and not knowing what was going on. Dad and my sister, Melissa, tried to update me as much as possible.
From what I gathered after the procedures and surgery is that his tonsils were much worse than anyone thought. They were blocking his airway. The lung biopsy showed that the mucus like substance was not as thick as it was the last test. The lung doctor had put him on a different medicine I believe last week to help with the mucus. We should know the results of the biopsies this afternoon.
My Mom and Jamie spent the night at the hospital with Zander. He is in pediatric ICU. He has a feeding tube down the nose to make sure he gets nourishment. He will have it for up to 3 weeks. They were going to take shifts sleeping and sitting with him.
Thank you for all of the prayers.
From what I gathered after the procedures and surgery is that his tonsils were much worse than anyone thought. They were blocking his airway. The lung biopsy showed that the mucus like substance was not as thick as it was the last test. The lung doctor had put him on a different medicine I believe last week to help with the mucus. We should know the results of the biopsies this afternoon.
My Mom and Jamie spent the night at the hospital with Zander. He is in pediatric ICU. He has a feeding tube down the nose to make sure he gets nourishment. He will have it for up to 3 weeks. They were going to take shifts sleeping and sitting with him.
Thank you for all of the prayers.
Tuesday, July 20, 2010
Surgery is Tomorrow
Well tomorrow is the day that Zander has his tonsils removed. It is just killing me to be here at home while the rest of the family is in Minnesota supporting Jamie and Zander. Mom and Dad left this morning with Jamie's two older boys, Walker and Isaak, and Melissa's twins, Jeremiah and Nathaniel.
Zander has to be at the hospital early. I am still waiting to hear what time. He had presurgery appointments today.
Here is the run down of what will be done tomorrow.
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
Please remember the little guy in prayer tomorrow.
Thanks
Angela
Zander has to be at the hospital early. I am still waiting to hear what time. He had presurgery appointments today.
Here is the run down of what will be done tomorrow.
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
Please remember the little guy in prayer tomorrow.
Thanks
Angela
Thursday, July 8, 2010
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.
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.
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