I knew I should have just posted a quick update yesterday evening but I allowed myself the excuse of being too tired and now I don't know which events happened yesterday and which events happened today; each day has now morphed into one. So I will just do the best I can of getting everyone up to speed.
We finished the first test yesterday afternoon which meant the tube was removed from Cale's nose and his "constant" was relieved of her duties. I feel for the people that had to spend 24/7 in the presence of Alex, my mom, and myself. Cale seemed to throughly enjoy his freedom from all the tubes and wires, taking every opportunity to dash towards the nearest nurse's computer. He may have the entire hospital reprogrammed by the time comes for us to be discharged. His freedom didn't last long, however, and he was started on an IV around 8:00 pm. The nurse who poked him was phenomenal and got it on the first try with little crying from Cale. He was much stronger with this IV than he has been in the past. He got tucked into bed shortly after that and Alex and I headed back to the hotel with Cash while my mom stayed the night with Cale.
This morning we woke up bright and early and headed back to the hospital around 6:45. Cale was scheduled to be taken downstairs at 7:00 to be sedated and prepped for today's test. Let me just say now that I am so very thankful that I wasn't fully aware of exactly how today would go, otherwise I would have lost hours of good sleep worrying about it. The team of doctors in charge of his sedation were great - very caring, informative, and empathetic. They allowed us to stay by his bedside while they put him to sleep, which is something I hate to do but also couldn't allow myself not to do. I've watched Cale be put to sleep a number of times and each time it's been hard on me. I always cry but as soon as we've spent a few minutes in the waiting room I am able to pull it together. Today I watched the doctor push the medicine through his IV and I anticipated much of what I have seen in the past. This time, however, was different. Cale's eyes fluttered back into his head and he started gulping for air. His back started to arch in rhythmic motions and I immediately became completely and utterly terrified to my core. I didn't know if he was having a seizure or experiencing complications from the medicines but regardless it was one of the scariest moments I can recall from our medical journeys with Cale. The doctor saw the panic in my face and quickly assured me Cale was simply fighting going to sleep. The terror stayed with me, though, and I broke down after we were escorted into the waiting room. I don't remember a time of ever being that scared.
Once Cale woke up he was required to remain still for eight hours while a tube about the diameter of a straw went through his nose and down into his small intestine, measuring the pressures and contractions of his esophagus, stomach, and small intestine. Keeping a five year old still for eight hours is downright near impossible. We watched a lot of movies, played with a lot of electronics, and did our best to stay positive. Of everything we've ever had to do with Cale this was by the far the hardest thing to date. Cale was terrified and it was very difficult to try and explain everything that was going on. At one point during the test the doctors administered a drug through his IV to bring on contractions in his stomach and small intestine. This caused Cale immediate, unbearable pain. He started to throw up and finally within about an hour he seemed to be relieved of most of his discomfort. He was then allowed to eat his first meal of the day which was at about 4:00. As per usual he was in pain after this and as if on cue he projectile vomited right in front of the doctor. Even though vomiting is what we don't want to have happen it was God's doing that he did it in the presence of his doctor. This got her attention and I just know we are on the right path to finding a cause for all of this. Cale has won the hearts of everyone he comes in contact with and we have so many advocates on our side. I feel as though they won't let us leave until they are able to help Cale; it's as if they have all declared this their personal mission. I love it!
Cale's attitude through all of this has been amazing. He was downright miserable today. He has endured a great amount of pain, remained patient while being confined to a hospital room and forbidden to move for eight hours, given us all grace when we lose our patience, and even lifted our spirits when we get down. I feel somewhat of a failure because he is the one keeping me strong. As the parent aren't I supposed to be his strength? He's such an amazing little man and his light shines bright. It's so easy to become depressed in this environment. There are sick children everywhere and families walk around with tears in their eyes and faces marked with exhaustion. This hospital is not a happy place and it's hard to remain positive. There's something about the way Cale can be subject to such misery and yet come out on the other side with a joy that is inexplicable. I'm so very proud of him.
Tomorrow will be another long day with two different tests scheduled. They will be a piece of cake compared to today but I imagine Cale will have lost the desire to remain strong. We are all ready for this week to be over.
I cannot thank everyone enough for all of the prayers and words of encouragement we have received over the last few days. Each comment, e-mail, text, message, and phone call have lifted our spirits in ways I can't even describe. I am so grateful for the love and support of our family and friends and I hope I am able to repay your kindness someday. Thank you, thank you, thank you!
Until tomorrow...
1 comment:
Hallelujah for perfectly timed projectile vomiting!
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