Gavin Pierson's Journal
Written Dec 6, 2013 10:22pmSo relieved to say that the clot is stable! I had so much anxiety over it being worse :(. Gavin's ventricles are slightly bigger though, and his shunt is set really low. As a shunt is set lower, it should drain more not less.We are staying the night to recheck sodium in the morning as it was low, and to figure out the shunt/ventricles issue. We were hoping it would be this - it is much easier and less dangerous to deal with.Sigh. We can do this. The clot is not getting worse. To clarify, clots this huge do not start improving for at least 3-4 weeks, and this improvement happens slowly over 3-4 months. Gavin has been on blood thinners for 2 weeks today, so maybe in another couple of weeks we would see slightly more blood flow in those areas.
Written Dec 6, 2013 5:44pmGavin is being re-admitted to St. Paul Childrens. Late this morning he had a headache at the back of his head and said he felt a lot of pressure. On the way to the Minneapolis clinic for labs, he complained of his left arm feeling weird.His counts are great because he has been off Palbo for 10 days. We are holding until the clot starts to improve. His sodium was abnormally low though so they may need to give him sodium. He has an MRI very soon to look at everything.Ugh - I'm glad we are here if there is something wrong, but I don't want anything to be wrong either :(. Three days at home was just not enough.
Forgot to say...
Written Dec 5, 2013 6:55pmDuring my earlier post I forgot to mention something about Gavin. Since January, Gavin could not move his eyes down at all and not really up much either. Last night I noticed them moving more up and down. I had Steve look too and he saw it, they actually moved down!! Today I showed the homecare nurse as well and she saw it! I hope this is a good sign, I would imagine it is. From what I have read, pressure on these eye muscle/nerves causes them to not send messages to the eye. So if they are working slightly better, maybe pressure is lifting??
Praying so hard that the tumor being smaller, and the blood clot resolving is why we see these changes. Praying it is not due to something bad, but I think his eyes would get worse if this was the case. We will have neuro look at them Monday.
Glen Cary church in Ham Lake is hosting a benefit for Gavin this Saturday - a potluck dinner from 6-10 pm with silent auction. The church is in Ham Lake if you are up that way and would like to come out. I spoke with the Pastors today and the event is on as planned. I hadn't mentioned it because I wasn't sure if it was and we were in the hospital the past 2 weeks.
Gavin has been crabby the latter part of the day - steroids are not my friend. He is not a crabby kid but this drug changes a person!!