Gavin Pierson's Journal
How can I say no?
Written 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
Written 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.
Written Dec 7, 2013 3:14pm
Gavin always puzzles his medical team. Why his ventricles are bigger is not easy to explain. The shunt is working exactly as it should. Dr. P took fluid out of his ventricles by tapping the shunt. This will at least temporarily decrease the size of the ventricles. Dr. P said there are many moving parts that change how things should work- the clot, the steroids, the blood thinners. He avoided externalizing the shunt at Gavs abdomen for now which is good because although small, it's a procedure and blood thinners increase risks.
Dr. P commented on how good the tumor looks! Yay that's awesome news :). He said he wants to ablate again soon with the visualase laser, once the clot improves. It doesn't have to be gone, but start to recannalize before we could do another ablation treatment. A few weeks ago, a couple from the twin cities donated $200,000 for the laser, and today Dr. P said that the WILD just donated $75,000!! This is awesome and means that very soon, the technology will be here at Childrens to stay!
Gavin is out right now because he was given Versad to calm down for the shunt tap. Once he wakes up we are going home. We just don't know when that will happen. He snored through the shunt tap and adjustment and is very calmly sleeping still. He has a limited scan Wednesday, which is a quick one to look at the ventricles. I pray they start behaving themselves and stop holding onto too much fluid.