Chase Lykken's Journal
Our Warriors Kindred Spirit!
Written Feb 28, 2014 3:26pmChasers Little body may be overshadowed by this Auguste Rondin's 7 foot sculpture at Mayo, but his spirit soars well above it! He has been nothing short of amazing this entire week for the tests, the 5am wake-up calls, the 2hrs drive each way, sitting in his wheel chair for hours, the two nights without feedings ect...ect.. No crying, no moaning, hardly even a hic-up came from his chapped lips while we were down there. We have just had our final review recap with one of the nurses on the Aero team and are headed back home. Chaser is in back with his with Captain America headphones on, jammin to some tunes, Lisa has her hands at 10 and 2, white knuckled -glowing from ear to ear I might add- as I am filling in the blanks for you guys- and wishing I was driving! :)
Yesterday morning Chaser had a bowel emptying study (to see how fast he is digesting his food, and to make sure his digestive tract is working good) and we met with the Dietician (to discuss his current formula intake, and come up with a better plan for feeding) This morning he had an EEG-- (to look for any signs of Seizure activity), then met with Cathy from OT (followup on his swallowing and muscle spasticity) - and then we had a recap with results of all the tests. And here is what we found:
In regards to the vomiting and stomach pain- His samples came back normal. The sample taken from his stomach showed a slight elevation in bacteria in his stomach. Nothing to be concerned with, but could potentially be causing the vomiting- we are going to try an antibiotic for a week to see if that helps. We have also added Miralax to his daily cocktail- to try and relieve these pains.
The Hormonal-Prepuberty tests- His hand x-ray came back completely in the norm of that of a 5 year old. His blood work was normal as well! He is NOT experiencing early puberty!
The EEG test- His EEG test came back good! There were NO signs of any seizures or seizure-like activity! The neurologist was also pleased that he showed a definite sleep pattern- (Chaser took a little rester while being in the room hooked up to all those wires.....must have been the classical music that zonked him!) He also said that if he were to compare this EEG test with that of the one taken back in July at Gillette's, he would certainly find a BIG improvement!
The Bowel Emptying Study. These results really got us pumped- they showed that Chaser is digesting almost 25% faster than he did when we did this study back in Sept! This is good info, so now we can plan his feedings better and know when he is full. Lisa says she will leave the math up to me :)
-His muscle spasticity- the neurologist has decided to put him back on a low dosage of valium- not for pain control, but to help with muscle tone. Lisa and Chaser are back on Monday to meet with a doctor to discuss Botox and Phenol in his arms and legs to help loosen him up.
All in all- this was an AWESOME visit! Once again, two steps forward, no steps back! We are leaving here with more in site and more tools to keep Chaser on track for a full recovery-Lord willing! Thank you all for you prayers and support. Have a great weekend!
God is Good!
Keep on Tickin Captain Lykken!
Written Feb 26, 2014 3:12pmChaser rocked another one! Everything went great. We are hanging with him now in recovery- sounds like we get our walking papers in T-Minus 30 mins.... His breathing is good, all vitals back to his norm! We met with the doctors just prior to coming in here. The scope of his stomach look great. The Nissen is holding well, and the doctor was pleased. The view into his lungs looked good as well!- A big improvement from 4 months ago- This is GREAT news! If he is aspirating, it does not appear to be hurting his lungs....we just need to get that little flap moving normally now! (the epiglatis) As the doctor was explaining this, I think I saw him actually crack a smile :)
We are back tomorrow morning at 7am for a Stomach emptying test. This is a 4hr test we measure how much of his food he digests every hour- Hopefully he does better on that test as well. Then Friday we are back at 7am to an EEG - and get a meeting of minds with the doctors - to get an explination of their conclusions, and hopefully some solutions.
Chase thanks you all for your thoughts and Prayers.
God is Good!
Written Feb 26, 2014 11:33amThey are running a little late Chase is going to OR in 5 minutes