Rollercoaster of a Day

I think today can be summed up in one word...rollercoaster. We started out the day with Jake doing really well on the breathing trial so they decided to take him off the ventilator and scheduled it for 12:45.  They gave him a bath, washed his hair and he was doing really well. He was very responsive to our questions through his hand signals. Both his eyes were opening half way and he seemed much more alert.

Mid-morning he had a little bit of frustration and we weren't sure why.  We were trying to figure out what was wrong and the nurse had an idea to have him try to write it on a dry eraser board. He was a little shaky but got it down and it said "sorry" and he signed his name. Not sure what he was sorry about, but just about broke my heart.
 

Everyone was really excited about the extubation and the process itself went smoothly. He struggled a bit to breathe when it came out and they gave him a few nebulizer treatments and put him on oxygen through his nose. I can't recall what it was called but it was oxygen with an extra push of air to help open up his vocal cords. He got settled down and was doing fairly well, but every time he woke up, he got agitated and he would struggle with his breathing. During one of these episodes, he also started going into withdrawals from the pain meds they've been slowly weaning. They had to hold back a dose while taking the tube out so they could assess his breathing. It was so horrible to watch him struggling to breathe and then have withdrawal symptoms on top of it. The last thing a parent wants to see if their child in pain.

They decided to have ENT (ear, nose, throat doctor) come and do a scope to see if the trouble breathing was due to his vocal cords or if it was just normal post tubal swelling of the throat. The concern was if it was the vocal cords, they may have to intubate again. With a brain injury there can sometimes be nerve damage they don't know about which could be affecting his vocal cords and there could be several other longer term effects. They determined it was normal swelling that could be treated with steroids and we breathed a sigh of relief.

They got him calmed down again and around 5:30 he started breathing really hard while still sleeping and then his heart rate and blood pressure kept going up. They tried a full face mask for oxygen, but couldn't improve his stats.  The breathing continued to be very labored and he wasn't responding like normal with his thumbs up answers. It was so hard to watch him struggling as hard as he was. They also checked his blood twice in a half hour and the blood oxygen was too low and the CO2 was too high indicating he was not getting enough oxygen. They ended up having to intubate him again to get his breathing stable. We were told this happens about 10% of the time. While I was so disappointed, it was also a relief to see him breathing normally and calm again.

The doctors think that something caused the spike in his stats which then affected his breathing. A similar thing happened yesterday about the same time when his blood pressure spiked. They are thinking it might be something called neurostorms or may have been seizures. They are leaning towards neurostorms since they gave him the medication the use to treat it and it calmed him right down. To be honest, I was a little fried by the time they explained them, but I believe it's when the neurons in the brain over-fire causing stats to elevate. To rule out seizures, they put him on an EEG to monitor his brainwaves for the next 24 hours.  

At the end of the day, he was stable and comfortable and that's all we can ask for. 

Please pray for Dr's to determine what is causing these spikes so they can be treated as well as continued improvement.