As of Wednesday night Santino has been sleeping with a ventilator. I was hoping this would allow me to get more sleep and stop him from having desaturations. It did stop him from having desats all night, but I am still not getting nearly enough sleep. The first night was rough because we were having alarms all night and had to wait up for a respiratory therapist to come fix it. Each night after that, he seems to get irritated with it and shakes until he disconnects himself and it alarms. I have watched the readings on the ventilator and he definitely needs it. It has a green bar that increases when he takes or receives a breath. If he takes it on his own a little circle shows up next to the bar. If not, there is no circle. The machine breaths for him 14 times a minute which is about one breath every 4 seconds. As I watch his breathing pattern at night, I can see that he goes without breathing for about 12 or more seconds sometimes. This is most likely when he desaturates and the pulse ox goes off. Since he is receiving a breath now, his oxygen levels have been above 95% most of the night which is fantastic!!!
Rough Day
Our little saint had a bit of a rough day today. He woke up at 4am crying and could not fall back to sleep all morning. I ended up moving him to my bed and cuddling him to try to comfort him the best I could. He only took 2 very short naps too and was so exhausted by 5pm that the crying started all over again until I got him in bed at 8. I am hoping he is not getting sick, so please say a little prayer for him. |
Lots of Visitors this Weekend
We were so glad to have my wonderful sister and nephew here this weekend. They both helped in so many ways around the house and with Santino. We love when they come to visit!!!
Bobby’s cousin Jaime has also been helping out a ton with whatever Bobby needs. He is back in the Phoenix area to attend his last year at ASU. Our kids just love him and get so excited when he comes over!
Bobby’s childhood friend Bryan and his family also came to visit. They are in town visiting family and we haven’t seen them in about 3 years. The girls swam together and we all had a great time!
Another Busy Week
We have another busy week ahead...
Tuesday...Physical Therapy (at home)
Wednesday... Occupational Therapy (at home)
Thursday...Feeding Therapy, Occupational Therapy (splints), and GJ Placement (all at PCH)
Saturday... Two Movement Lessons (Peoria)
Last week we got new splints for night sleeping. Unfortunately, they gave him a very bad sore on his hand so we are not putting them on. His OT will have to re-form them so there is not so much pressure in that area.
We also had the meeting with the DDD nurse on Friday and it went really well. She increased our weekly hours from 40 to 56 per week. This is great news because it means I can have his nurses work 10 hour days M-Friday. I am hoping to have them here until 5 so I can do homework with Olivia and make dinner!!! I am also going to try to work from home between all of the appointments and phone calls! Thank you for the prayers... they worked!!!
Tuesday...Physical Therapy (at home)
Wednesday... Occupational Therapy (at home)
Thursday...Feeding Therapy, Occupational Therapy (splints), and GJ Placement (all at PCH)
Saturday... Two Movement Lessons (Peoria)
Last week we got new splints for night sleeping. Unfortunately, they gave him a very bad sore on his hand so we are not putting them on. His OT will have to re-form them so there is not so much pressure in that area.
We also had the meeting with the DDD nurse on Friday and it went really well. She increased our weekly hours from 40 to 56 per week. This is great news because it means I can have his nurses work 10 hour days M-Friday. I am hoping to have them here until 5 so I can do homework with Olivia and make dinner!!! I am also going to try to work from home between all of the appointments and phone calls! Thank you for the prayers... they worked!!!
TEam Santino
We are so very excited for our new little buddy E! He headed out to Pinehurst today for the US Kids World Golf Championship. We are so very blessed that our paths have crossed. E is a remarkable child with an incredible talent. There is no doubt in my mind that God put E here to do BIG things. Please wish E luck by visiting his mom’s Facebook page (click here) to write on her wall or leaving comments here for him. I know his family would greatly appreciate it. It must be very scary and exciting all at the same time!!!
They have already raised close to $5000 for Santino’s Movement Lessons. We hope to plan a short trip to Seattle with the money in the Fall too! There is a doctor there who specializes in Polymicrogyria, and we would love to have him look at Santino’s MRI and give us more information about what to expect and what we can do to keep his progress moving forward.
Thank you to all of the many wonderful prayer warriors who are fighting for Santino each and everyday through prayers, words, and actions. It is amazing how much good can come out of a very difficult situation. We are constantly reminded of the many angels living amongst us! It has truly changed our lives.
They have already raised close to $5000 for Santino’s Movement Lessons. We hope to plan a short trip to Seattle with the money in the Fall too! There is a doctor there who specializes in Polymicrogyria, and we would love to have him look at Santino’s MRI and give us more information about what to expect and what we can do to keep his progress moving forward.
Thank you to all of the many wonderful prayer warriors who are fighting for Santino each and everyday through prayers, words, and actions. It is amazing how much good can come out of a very difficult situation. We are constantly reminded of the many angels living amongst us! It has truly changed our lives.