Gavin Pierson's Journal
Written Dec 12, 2013 9:19pmToday I brought Gavin and Gage to the library and we went on a search for a movie Gav wanted - "Aliens in the Attic". It is a couple years old so we couldn't find it at Target or Walmart. We stopped by the Pawn America in Anoka because we have found other movies there in the past. They have thousands of movies and you just have to look so we did for awhile without success. Gage however did find some Xbox games that I wasn't going to get him but I decided to at least go see how much they were as he was SO excited to find them. We walked back to the section and I kid you not, on the TV - Aliens in the Attic was playing! We ejected it, put it in the case and purchased it for $2.00 (Gage also got a video game:).
How crazy is that!?! Gav has been asking about the movie for about a month - why today we went there at that time and it was playing on the TV I don't know, but it sure made me feel like we are where we are supposed to be in life. It made me happy that instead of just saying no to Gage because I didn't get what we went there for - I decided to just take his lead and boom right in our face! I know it's just a silly movie but I could not help but take this is a sign. To just let go of what I think will happen and just go with the flow. You may be surprised to find that what you are looking for in life is not where you expected it would be ;)
When we got home, Gav's home nurse came out to change his catheter and dressing for his PICC line. Gav was pretty crabby the rest of the day, not wanting to chat much and just hungry :( His face has tiny features compared to the excess fluid and tissue that piles up SO fast. Ugh it sucks to see him like this. 12 days and counting. Rather than the advent countdown the kids made with my sis Katie, I think I will make a steroids countdown. I want my sweet, recognizable, less hungry and polite little boy back. I want him to want to do something, anything besides eat. The good news is he lost a pound since last week but still I think his face gained 2 inches.
Gavin was treated for thrush while in the hospital (like yeast in his mouth). He has had this before while on steroids. Anyways, they did not send him home on medication for the thrush so I assumed that he only needed it a few days. Today and yesterday, I have noticed a few symptoms with his speech. When talking his tongue sometimes moves oddly like a turtle head poking out of it's shell. Also he seems to have to close his lips together purposefully and swallow a lot more than usual. When talking, he also is talking a little slower than usual. I was looking really closely at his mouth and noticed that the thrush is still there and is much worse too.
Dr. Schultz is amazing, I emailed her about the thrush and also the speech concerns and she got back to me quickly. She sent a prescription and he already had his first dose of Nystatin. Also she sent a referral for a speech eval. I am taking him in tomorrow morning at 8 am. It is possible that Gavin's speech is the way it is because of the thrush and the swelling from steroids (his cheeks are even huge on the inside, leaving him little room). However, I feel it is not - and that it is neurological. The way he is talking, using his tongue and moving his mouth reminds me too much of how he talked after his big craniotomy in January.
I also told neurosurgery about this new speech thing and they said if it gets worse or I see changes to bring him in. Dr. P could externalize his shunt if he has neurological changes, but this would mean another hospital stay... however, I feel that the blood clot is causing these symptoms and maybe draining the ventricles for a few days would help while the clot starts to hopefully resolve. So, I am torn. I will see what speech says and then probably stop into the neuro clinic afterwards. I will keep everyone updated. Thanks for reading, supporting, praying!!!
Written Dec 11, 2013 2:44pmPretty short appt with neurosurgery today. Gavin neurologically looks great, he is just tired, hungry, irritable, more quiet, and more forgetful due to being so tired. He lights up when you tell him he can eat that is for sure! He is going to have huge smiles tonight eating at his favorite restaurant! Everyone is welcome at the Coon Rapids Riverdale location from 4-10 pm :)
The limited MRI shows no changes, stable. Dr. P was in surgery but Mary was going to text him the results. I think we wanted the ventricles to be smaller because they were bigger on Fridays scan, then he tapped the shunt and took out 2 huge syringes of fluid... so it seems the fluid filled right back up again in the past 4-5 days?? We will probably be going back in for more scans next week. I know Dr. P really wants to avoid doing a shunt revision or externalizing the shunt tubing out of Gav's abdomen (we would have to be in the hospital). But - we need to figure out why his shunt is not draining like it was before.
The clot is also stable, which is what I expected. I have said this before, but still people ask about results, assuming that the clot should be getting better or magically disappear. It takes months before it will get better. The earliest we would see even a little bit of resolve would be in about 10 days. Once it starts, it is very slow process over months. The blood thinners themselves do not resolve the clot, they only prevent it from getting worse and also prevent other clot formations. Our bodies naturally resolve the clots and recannalize the veins where the clots are. It is always hard to see the look when you say, no it is not better yet - because I can read their face (Oh no if it is not better yet something bad will happen). The truth is that Gavin has gotten past the acute stage and that it is stable. It is in the acute stage where 50% of children would suffer a stroke, bleed, brain damage or death. I hate being asked when I get the scared looks back - it really does not help.
Waiting to hear back about his lab work. I logged into his MyChildrens and saw some of the results - sodium is normal again, ANC and white blood cell are the highest they have been in a year due to being off Palbo right now. His liver enzyme test was really high - but I have a feeling this is due to the high dose steroids. Once Dr. P has the opportunity to look at Gavin's scans, we will get a call from his team about when to scan again. I am thinking next week sometime. Tomorrow Homecare comes out to change his PICC line dressing, and place a new catheter for injections.
I hope to see some of you at BWW tonight :)
Written Dec 10, 2013 10:28pmIt 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!