Diario de Gavin Pierson
Escrito el 4 hours agoIt has been a busy day! Gavin had a special surprise today - 4 offensive linemen from the MN Vikings came to our house to make him smile. He loved it!! This Spring I talked with a nursing class and the nursing instructor Kendra has been sharing about Gavin ever since. One of her nursing students is married to a Vikings coach and set this up! Thank you so much everyone :)
Gavin has been feeling good - no pain or complaints. He has been a little more quiet, which is his way of being crabby. He constantly asks when he can eat again. He also seems to be forgetting a lot, like we will have just eaten dinner an hour ago and he will ask when dinner is. When I ask him to think about it he remembers. I think he has steroid/keppra/bloodclot brain :( These all affect him in some way - along with the ventricles not behaving. I hope he starts to cheer up and be himself. He is still sweet Gavin but just harder to motivate and please.
Tomorrow he has an MRI - just a fast one at 10, followed by a neurosurgery appointment and labs. Then from 4-10 pm is his Buffalo Wild Wings benefit! The Riverdale location if you would like to attend. I will upload some pictures of the Vikings today and the benefit tomorrow, I have to get them from my phone onto my computer! Gav is sleeping now and I hope he wakes up happy and well rested - he is still not getting the best sleep. Do you think giving him a hefty dose of steroids at 2 am may be contributing to that?? Ugh, hate them!
How can I say no?
Escrito el Dec 9, 2013 12:42pmThis morning Gav got himself up and walked into my room (it's harder due to the developed weakness during his low activity hospital stay) and tapped on my shoulder. I opened my eyes to a sweet little face laying his head on the corner of my pillow. "Good Morning" in the sweetest little voice. If you know me well (Mom, Dad, Steve and my siblings) you know that I am really hard to wake up in the morning! This pure, innocent little boy wanting me to get up and go to Perkins - I couldn't resist.
I think we got ready in record time! In about 20-25 minutes, we all got dressed, Gavin had a sponge bath, we brushed our teeth and hair, gave Gav his meds, flushed his PICC line, injected his blood thinner - and got our winter gear on to head to Perkins for pancakes :) I was pretty impressed with us. While at the restaurant Gavin kept on thanking me for taking him there. He was so appreciative. It was lovely, we were just missing Dad at work so next time we promise we will bring him along (he left for work at 5:30).
Gavin is now taking a nap. I do not think he is really getting into a deep sleep. He talks in his sleep and also responds to you right away. For example I could say "Gavin, does anything hurt" just one time quietly and he will respond, nope nothing hurts mom, I'm ok. He also wakes up and asks me how many hours until it is morning. The steroids have to be the culprit!! We did give melatonin last night but will up his dose a little tonight to see if that helps.
Gavin's scan is all set for 10 am Wednesday and then we will see Mary from Neurosurgery afterwards. Tomorrow I'm working on a special surprise for Gav - details to come. Please read Gavin's final story on the Children's website that was posted today:
End of weekend update
Escrito el Dec 8, 2013 9:53pmGavin has felt ok, just tired since yesterday's discharge from the hospital. This week we have Homecare visits Monday and Thursday and will go in for a scan and labs on Wednesday. The scan is just a quick look at his ventricles. I am not sure what we will do if they continue to get bigger :/ His sodium went up a little when they rechecked it yesterday but is still on the low side.
He is building his strength again after 2 weeks of hospital bed. Steroids cause the weight gain so together the lack of activity and steroids make him weak. He is doing better every day and I hope he continues to do well. He has not had any pain or headaches, praying that stays that way too.
He is on a slow steroid wean and will be off them by Christmas. I believe next week sometime we will do another MRV which looks at the blood clot. The best Christmas present would be to see SOME resolution of the clot - even just a little so that we know it is on the mend.
Although I wish it were on different circumstances, I am enjoying the time with my boys during the day and have more energy to do holiday things with the kids. There is ALWAYS something to be thankful for. I am thankful for the time I am getting, the wonderful support from so many wonderful people and for Gavin's attitude every day. Lately, multiple times a day he tells us "I will never give up the fight against Joe Bully until I win". Love.