So you all know how our story goes... we like to take the scenic route of things and instead of coming to the hospital for a couple of hours for a few liters of water to hydrate the boy.... we end up finding out that his sodium level is high and infact higher today than yesterday!! Even after being hydrated all night and today... this afternoon his sodium level was STILL higher than yesterday... WHAT THE FRENCH TOAST??? This was what his urine looked like yesterday and prompted me to bring him in:
He weighed in today:
116 pounds.... he has lost 20 pounds since the surgery on June 2nd!
SHUT THE FRONT DOOR! Not that he didn't need to lose a few pounds but not all this and so fast!
Today the speech therapist came in and did somewhat of a swallow study with him... trying different thicknesses of liquids so we can get him on track. He is scheduled for a barium swallow test in the morning so we can better assess the situation of how he is swallowing and where those liquids are going... hopefully not into his lungs. http://www.youtube.com/watch?v=5QhBvXsJ53E
Next thing I know... I look over and this is what I see:
The speech therapist had given him a bottle and he was able to take baby sips and swallow the water... he fell asleep drinking the bottle, lol! Just like my little baby Alex used to do when he was little! ( He will kill me for putting these on the web but I couldn't resist, lol!
His eye exam on Monday went well.... Mr. Smartypants Alex in his almost evil whisperish voice that he now has until it completely heals says to the technician conducting the test.... "If you fail me ... I will find you!!" hahahahahahaha.... He got his full name as well and kept doing the whole two fingers, pointing to his eyes and telling him.. "I'm watching you!".. The test consisted of him sitting in a chair with his chin in a grip and forehead against a rubber piece with this satellite dish looking thing in front of him. He held a clicker in his hand and was to focus on the black hole in the center of the dish and when he saw the little dot of light he was to click the clicker! I will tell you this... in my evaluation and I am not the doctor ... but it doesn't look good for his peripheal vision. Not sure when I will get results but I know he does have another one of these tests in August.
Here are some pics and video from his eye exam.... thought you might find this interesting... this is the Goldmann Visual Field Test.
Alex has still been in great spirits.... still cracking jokes today and enjoyed his visit from his buddies Cameron, Charles and Caitlin Hawkins. Please continue to pray for us... our battles are many ahead but with God by our sides.... you already know... WE GOT THIS!
Thank you to all our wonderful prayer warriors we have already seen some light... beginning with his urine as tonight it is beginning to look a lot more like ordinary yellow urine. The thing I worry about most is that even as his urine begins to regulate to a clearer liquid... if the sodium count stays high... this means there may be a kidney hormone disfunction from what I gather from my conversations with the Doctor. This is definitely something that I DO NOT want it to be.... another road block.... another pit stop of which I am ready to put behind us once again. Praying his swallow test shows nothing but great results and that the swallowing malfunction is only a "brain quirk" and his insecurity with swallowing and not actually liquids going into his lungs. If this is the case... we can show him the video and then it will trigger his brain to NOT BE SCARED to swallow and we can move forward. Soooo... prayers for now are for:
swallow test and sodium count to decrease
I'm not so much pushing to go home as I want him to be fully recovered and hydrated... even though I would love to be back at my home....... i also want him to be able to stay hydrated after being discharged. We don't want to end up back here in 48 hours because he still can't drink or want to eat.
Randi said she would just like to visit one time without having to keep going back in the hospitals with him and having to say goodbye at the hospital. We had planned to go to St. Augustine today as she has never been! Hoping to fit that in before Tuesday when she gets on a plane to go back :0(
Keeping the Faith... this is part of the bigger plan... somehow.. someway... I know this is in HIS hands and he will take care of Alex every step of the way. WHAT A GREAT STORY TO TELL HUH? Not to mention you can all ask us which hospital better suits your needs in jax lol!
PEACE~LOVE~N~THUMBS UP!
Lisa
PS... A special thanks to our friends... Donna, Collin and Ryan for bringing Alex and the family POPEYES... his favorite tonight... he actually ate mashed potatoes and a couple bites of chicken! More than he has eaten all in one sitting since the surgery! THANK YOU GUYS! That was much needed and very thoughtful!
HAPPY BIRTHDAY TO ONE OF MY VERY SPECIAL FRIENDS... HEIDI LEE... I LOVE YOU BOO!
