June 13, 2015 ~ Tyson’s Disability Story

Have you ever appreciated the fact that your little babies can breath in and out, receive the amount of oxygen that they need, get rid of the CO2 in their body to keep their PH in balance, cough, swallow, suck and eat all at the same time? I have a whole new respect for that process and I will never take it for granted again. This evening the doctor pulled out Tyson's ventilator after being on the trial for over a day an a half. During the first hour Tyson couldn't swallow at all, the nurse was suctioning him out every few minutes and he was struggling to breath. Luckly the doctor decided to give him some time to see how he would handle it and they also gave him a gas version of epinephrine to breath to help the suspected swelling in his throat from the ventilator. It has now been about 5 hours since he was off of the ventilator and is now swallowing and coughing on his own once in a while but more when the nurse suctions him. We are very hopeful that he will be able to figure it out so that he can protect his air way and not have to be reintibated. They are also giving him a very small amount of oxygen but he is doing great!

About an hour after they took the ventilator out I was able to hold him. As soon as he was in my arms he calmed down and was able to sleep and breath pretty comfortably. While I was holding him is when he started swallowing on his own and sucking on his binki. It is so special to be able to hold him and know that each breath is such a miracle!

The doctors say that they will watch him very closely for the next 24 to 48 hours to see how he is breathing and protecting his air way. If he struggles with it and it is not going well they might need reintibate him. They also tested his blood gas levels a few hours after being off of the ventilator and he was maintaining great levels all by himself!

Grandma Kim, Cameron and myself have all held him so far and he by far is more peaceful and less upset when Cam or I hold him. I know he loves his grandma's but I am secretly happy he likes us the best.

One reason why this whole breathing without a ventilator is so impressive is because the part of the brain that controls breathing, heart rate and temperature monitoring has been very damaged by the meningitis. It is such a miracle that he can more, breath, monitor his own heart rate and temperature. We are still working and hoping that he will be able to fully protect his air way but that will be something that is discovered in the next hours and days to come.

Earlier in the day we found out that he is managing his seizures better so the EEG was able to come off which is great. And we also found out the results of his MRI that was taken last night from the Neurosurgeon. He said that his ventricles are a little bit bigger then the previous MRI that was taken. Right now that doesn't qualify him for brain surgery but they will defiantly be watching him. The surgeon mentioned that a great way to monitor their size would be through ultrasound. So Tyson had an ultrasound this afternoon and then will probably continue having them every day or every other day. So we hope he doesn't need surgery but we are happy that they are monitoring him so closely and carefully in case he does need it.

It has been a great day and we are so appreciative for the miracles that we see happening in our little babies life! Thank you for all of your support, kind words and prayers! I can't thank everyone enough!

This is a video of Tyson breathing after about an hour or two off of the ventilator while I was holding him. Those breaths and snoring are so precious! I haven't heard him breath this peacefully in over two weeks!