Gavin Pierson's Journal
Written Feb 22, 2014 2:02pmI cannot believe how well Gavin is doing today :) He seems to be recovering faster than the first laser surgery. He slept over 13 hours last night and also took a little nap today, but when awake he has energy, is in good spirits and it is as if nothing happened. So amazing.
I was worried that he may not feel well enough to go to WWE tomorrow evening but he has been talking about it all day, and it super excited! Gavin can't wait to see his favorite wrestler John Cena - the wrestler who has the motto "Never Give Up!" I think with more rest tonight and a nap tomorrow, he will do great. 3 days after brain surgery - there is NO way he would have been able to do this with a traditional surgery.
I am praying that no surprises come up and that Gavin continues to do well. After a few days/weeks, I am excited to see how he does with less pressure on his brain stem. Dr. P said that the tumor was ablated right up to the brainstem. Gavin's brain will have more room near his brain stem and his temporal lobe. This relief of pressure may help things like balance, coordination, vision, reading.
We saw Gav's speech therapist yesterday, whom he worked with a lot last year as well as when he first had Agnosia. I was telling her that last week I was asking Gavin questions about having Agnosia (pure word deafness). He has never really been able to explain what we sounded like to him when he could not process words. I thought maybe it was like being around people that speak a different language. If you remember, he could recognize sounds like a bird, or an airplane, snapping - any sound that was not words.
He told me that when people talked to him, he could hear the first sound of their words but not the middle or end of the word. He said that he could understand me the best because I am his mom <3. I remember being able to communicate with him somehow, I think we are just in sync. I think about the months of work, from flashcards, Ipad apps, sign language and sound letter recognition. I tear up every single time I think about the day he ran into the livingroom saying he heard me say library. How amazing that he overcame that obstacle, and that he can process what it was like.
Hoping my updates just continue to be good news of recovery, hope and forward progress!
Written Feb 21, 2014 4:29pmWe are home!!!! How amazing is that?? On our way home we stopped at Taco Bell per Gavin's request. Mom got a new vehicle so we went inside to eat. He just sat there eating and talking like nothing happened. Unbelievable!
Hes going to rest up for the next couple of days and take it easy. Monday he has a post op MRI. He's on a short 5 days of steroids to help with inflammation. Next week he will start blood thinners again and Palbo.
It feels nice to be home and we are all excited to rest up. Gavin now has to rely on his body to finish what the laser started. The dead tissue will be absorbed and processed. He's already started to look flushed like last time but is in good spirits eating a candy bar :)
Written Feb 20, 2014 8:40pmLove Love Love how awesome Gavin is. He is talking, joking, eating, drinking, being sweet and SO smart! I mentioned how good his memory has been lately. This evening it continues, he is defining a blizzard (a heavy snowstorm with high winds), explaining all of the characteristics of a northern troodon, and telling his nurse how Dr. P is the boss of the all of the neurosurgeons. He seems to be pulling things out of his memory that he hasn't talked about in awhile, or that I have never heard him say before. Amazing.
The surgery today went very well. Gavin is staying tonight for sure and will have labs and an MRI tomorrow. If all looks good and he is doing fine he can go home tomorrow. Over the next few days he will experience some flu like symptoms while his body absorbs dead tissue. He is getting tired and is trying to get comfortable as I am typing. They tried to draw labs off his PICC line, and were not able to draw. They will try TPN, which can help when this problem arises. He has had his PICC line since November and we thought about getting it replaced but it has been working well...
I am exhausted. I think I slept about 4 hours last night. It has finally hit me. Today Childrens hospital followed Gav throughout his day and also interviewed us and Dr. Petronio. They will be putting a video together of his day. I will share once it is complete! I think it will be cool to see our day as an outsider looking in. They also took some pictures like the one I attached. I think Gavin fell asleep now :) I will update tomorrow, praying he continues doing so awesome. Thank you all for reading and posting today, it really helps us get through the day!