Well it’s been a long week and all three of us are exhausted.
We were moved up to the rehab unit on Friday and will be here until next week when Gus starts chemo. Rehab is great for Gus and in just one week he has made great progress. Everyday Gus is given a schedule for the day consisting of speech, occupational, physical, and music therapies. They keep him pretty busy.
Over the weekend, Gus was given a custom wheelchair by physical therapy that allows us to be more mobile and he absolutely LOVES it. He has definitely had his fill of laying in bed and being stuck in his room. His chair has a detachable tray that he can use to play with toys or eat.
My dad, my baby sister Montana, and Lauren came to visit us from Florida over the weekend. It was so wonderful to see my dad and Gus really enjoyed spending time with his grandpa. Dad got a little peek at what our life has become over the past weeks. He came with us to therapy sessions and tests and it was awesome to have pops around for support.
Sunday afternoon Gus decided he didn’t want his feeding tube in his nose anymore, so he pulled it out! The little stinker. Nurses had to put a new one in Sunday night. On Sunday we also had a birthday party for Gus since we weren’t able to celebrate on his actual birthday. It was short and sweet, with a few close friends and family. We didn’t expect Gus to last longer than an hour and he did great! We had cake and ice cream and Gus opened his presents. He had a great time and it was wonderful to see Gus smile and talk.
On Monday speech therapy gave Gus a swallowing test to make sure fluids and food are going down the right pipe. The test involved a video x-ray of Gus eating and drinking a variety of items and showed that Gus is having some difficulty swallowing and liquids were going down his windpipe without him coughing them up. This is called silent asphyxiation and really scared us when we watched the video. He is eating and drinking normally and we have no idea that food and liquids are going down into his lungs. So he is limited to small sips of thin liquids and small tastes of pureed food. The problems with swallowing have two contributing factors: his throat muscles are weak from lack of use, intubation, and the feeding tube; and the area of the brain where his surgery was controls swallowing.
Monday afternoon, Gus decided that he didn’t like his new feeding tube, so he pulled it out! AGAIN! Oy vey! So nurses put a new tube in Monday night and the tube was advanced into his intestines on Tuesday. uesday.
Starting Monday night, Gus began having sleep issues at night and during nap time.It started with little arm twitches and developed over the nights into full body thrashing and rolling completely over. He has been unable to sleep for longer than a 2 hour period because of this. Tony and I are not able to sleep because his nighttime activity has become so violent and we have to keep him from hurting himself. We’re all exhausted. Gus is also not performing to his best in therapy because he is so tired. Wednesday night we tried chloral hydrate to no success, even after a double dose. Thursday night we tried chloral hydrate combined with adarax and he did get a good 4 hour chunk of sleep, but went back to thrashing around after it wore off. Tonight we are going to try again with the same combo and an additional dose of adarax later in the evening. We might also try melatonin. Hopefully we can all get some rest soon.
Today, Gus had his fourth surgery for a few different procedures. A port was installed on his chest for chemotherapy. A g-tube was also inserted in his stomach for a more permanent nutrition line. He will also be getting a spinal tap in order to test the contents of his CSF for free-floating cancer cells. He should recover quickly from these procedures. Tonight he sat up in bed and watched TV and played ball with us. Such a champ!
Last weekend we were also able to review in detail Gus’ CT scan and both of his MRI’s with Dr. Mazewski. To our surprise, Gus did not just have one big tumor, he has several. There are 2 symmetrical dime-size tumors close to each ear canal and a few smaller ones scattered on the top of his brain. Luckily the tumors are not inside his brain. His spinal cord is also coated with a layer of tumors. There are too many to operate on so all we can do is hope that chemo melts the tumors. Of course, Tony and I are very upset with this news and are dealing with it the best way we can.
Gus will have another MRI tomorrow along with kidney tests and blood tests to serve as a baseline for chemotherapy which will start on Wednesday. Since its been almost a month since his last MRI we are curious to see how much the cancer has spread.
Keep us in your thoughts and prayers that Gus has a speedy recovery from surgery, that he finally starts to get some sleep, and that he is able to tolerate chemo with minimal side effects.
Erin, Tony, and Mighty Gus