Team Xander
Donation protected
XANDER UPDATE: Hi all! It's been a very busy week and a very difficult one for mom. Xander had a rough night but a good night all at the same time. He didn't sleep much but when he did he didn't have any apnea episodes!!!!! PT and OT came and worked with Xander again today. Xander was also fitted for a car seat that is going to accommodate the halo brace while giving him the support and safety he needs. We will need to buy an additional car seat and they run about $800. We are looking into options but a car seat that is for a baby with special needs seems to be outrageously expensive but we will figure that out. Also, we are now out of PICU and on a regular floor!!!! At this point there still isn't any talk about when Xander will be released. I can't say it enough, the thoughts and prayers means so much to us. Thank you all again very very much. #TeamXander. Also please feel free to like his page TeamXander, that page will continue to follow his journey for as long as I can keep it up.
XANDER UPDATE: Xander has had a really really rough night. Last night about 10:15pm (right after I posted the last update), Xander coded. He stopped breathing, his oxygen went super low, he had no pulse and his blood pressure bottomed out. They were able to get him back after having to bag him with oxygen and doing chest compressions. He also visited during all of this so he had to be suctioned. It was the scariest thing I have ever experienced. He had a CT scan after the ordeal to make sure there wasn't anything in his neck that was causing him to code. He was doing "ok" but throughout the night he would get mad, hold his breath and his oxygen level would drop into the 50's. He would start breathing again and his oxygen would come back up. He had a chest X-Ray this morning to make sure he didn't aspirate into his lungs when he vomited last night. Then this morning he coded again. We are not sure what is causing all of this to happen. He is still moving his arms and legs and opening his eyes. They have him under a very mild sedation to keep him calm. Please please keep praying for my baby, he is my world!! We need all the help we can get right now. At this point there isn't even talk of when we will be out of PICU. I will keep updating as I have time. I have also started a page for Xander so please come like his page and then I can update there all at once. Again, we would like to thank everyone for their continued thoughts, prayers, and support. (Meal train link. https://www.mealtrain.com/trains/rvyyrd ). (Gofund me link. https://www.gofundme.com/pqe5gs58 )
XANDER UPDATE: Once again we have received news that is not what we were expecting/hoping for. My little boy will be going in for another surgery on Thursday May 19th. Unfortunately the bone that was removed during his last surgery has started to regrow and the bones/ligaments that make up the top of the spinal column have not stabilized. The surgery will consist of once again removing some of the bone that is compressing the spinal cord, also the surgeons will be harvesting bone from his ribs or pelvis to try to stabilize the spinal column without having to use pins to fuse the bone. This is a very invasive procedure and we have been warned that there are multiple complications that could arise. They are expecting there to be bleeding complications so Andy was able to donate blood in case Xander needs a blood transfusion (my iron was too low so I wasn't able to). After surgery Xander will be placed in a full pin style halo for at least 3 months. We will be down at CHLA from Thursday to at least Monday, but probably longer. On top of all of this, my little bumble bee will be spending his first birthday (May 20th) in the hospital. I know we are in good hands and I know Xander is a fighter. This is a lot to absorb for us right now. There are so many unanswered questions. Please please keep my son (and his parents) in your thoughts and prayers. Thank you for all your continued support, it means the world to us.
This is my amazing 6 month old son Xander. Unfortunately he had to have massive spinal surgery on 12/7/2015 and will have to stay in this immobilization brace for at least 4 months. I absolutely hate asking for help but between the cost of hotel rooms during our hospital stays, food expenses during our travels, gas prices for his rechecks which are a 3 hour round trip, ect ect I am starting to get very worried about the financial aspect of things. My son is my everything and I will do anything and make sure he has everything he needs regardless of what I have to do to get it for him, even if it is asking for help. If you can find it in your heart and your bank account to help, I can not explain how grateful my family and I would be. Thank you for taking the time out to read this. Also, we are accepting all prayers and good healing thoughts. Again, thank you in advance and I hope you all have a wonderful holiday season!
XANDER UPDATE: Xander has had a really really rough night. Last night about 10:15pm (right after I posted the last update), Xander coded. He stopped breathing, his oxygen went super low, he had no pulse and his blood pressure bottomed out. They were able to get him back after having to bag him with oxygen and doing chest compressions. He also visited during all of this so he had to be suctioned. It was the scariest thing I have ever experienced. He had a CT scan after the ordeal to make sure there wasn't anything in his neck that was causing him to code. He was doing "ok" but throughout the night he would get mad, hold his breath and his oxygen level would drop into the 50's. He would start breathing again and his oxygen would come back up. He had a chest X-Ray this morning to make sure he didn't aspirate into his lungs when he vomited last night. Then this morning he coded again. We are not sure what is causing all of this to happen. He is still moving his arms and legs and opening his eyes. They have him under a very mild sedation to keep him calm. Please please keep praying for my baby, he is my world!! We need all the help we can get right now. At this point there isn't even talk of when we will be out of PICU. I will keep updating as I have time. I have also started a page for Xander so please come like his page and then I can update there all at once. Again, we would like to thank everyone for their continued thoughts, prayers, and support. (Meal train link. https://www.mealtrain.com/trains/rvyyrd ). (Gofund me link. https://www.gofundme.com/pqe5gs58 )
XANDER UPDATE: Once again we have received news that is not what we were expecting/hoping for. My little boy will be going in for another surgery on Thursday May 19th. Unfortunately the bone that was removed during his last surgery has started to regrow and the bones/ligaments that make up the top of the spinal column have not stabilized. The surgery will consist of once again removing some of the bone that is compressing the spinal cord, also the surgeons will be harvesting bone from his ribs or pelvis to try to stabilize the spinal column without having to use pins to fuse the bone. This is a very invasive procedure and we have been warned that there are multiple complications that could arise. They are expecting there to be bleeding complications so Andy was able to donate blood in case Xander needs a blood transfusion (my iron was too low so I wasn't able to). After surgery Xander will be placed in a full pin style halo for at least 3 months. We will be down at CHLA from Thursday to at least Monday, but probably longer. On top of all of this, my little bumble bee will be spending his first birthday (May 20th) in the hospital. I know we are in good hands and I know Xander is a fighter. This is a lot to absorb for us right now. There are so many unanswered questions. Please please keep my son (and his parents) in your thoughts and prayers. Thank you for all your continued support, it means the world to us.
This is my amazing 6 month old son Xander. Unfortunately he had to have massive spinal surgery on 12/7/2015 and will have to stay in this immobilization brace for at least 4 months. I absolutely hate asking for help but between the cost of hotel rooms during our hospital stays, food expenses during our travels, gas prices for his rechecks which are a 3 hour round trip, ect ect I am starting to get very worried about the financial aspect of things. My son is my everything and I will do anything and make sure he has everything he needs regardless of what I have to do to get it for him, even if it is asking for help. If you can find it in your heart and your bank account to help, I can not explain how grateful my family and I would be. Thank you for taking the time out to read this. Also, we are accepting all prayers and good healing thoughts. Again, thank you in advance and I hope you all have a wonderful holiday season!
Organizer
Corrin Buchholz
Organizer
Port Hueneme, CA
