Because of the tracheotomy Kyle has been unable to speak but he has attempted to use the Passy-Muir to be more vocal. Using the Passy-Muir isn't easy. The valve creates resistance for his lungs when he is trying to pass air around trach to his vocal cords. Once they down size his trach they believe it will be easier for him to communicate with the valve. He has found he is only able to stand it a few minutes a day. Luckily, I have become a great translator when he is lipping words a mile a minute to the doctors and nurses. I sometimes feel like I am in a silent movie. He also had a feeding tube placed in his stomach so he could continue to receive nutrients while he heals and becomes stronger.
|Kyle focusing on his next big step.|
After a week of making progress and having my mom there as another cheerleader for Kyle (and me) we were told he was going to be discharged to "Step Down." In order to get released to Step Down you have to be off the ventilator for 48 hours, and showing signs of progress. The term "Step Down" is used quite frequently by families and staff here. It is the place of progress, even if the rooms are tiny and crowded it means their loved one is that much closer to going home. I was happy to hear of his discharge once he hit the 48 hours but sad to have my mom leaving. But I knew I would be seeing another beautiful face later that day. Did I mention Kyle and I have a wonderful support system? Alli, Kyle and I's Highschool friend was coming to visit. Not only is she a friend but she is a ICU nurse, so she was a great translator/support for me when doctors and nurses started talking about Kyle's progress.
Once we entered Step Down (2 weeks after his surgery), I felt the progress despite the small crowed room we were placed in. Kyle was happy to have a change of scenery, and was finally feeling tired after 2.5 laps walked (his all time high) and not sleeping more than an hour in 3 days. He looked ready to sleep but the doctors decided to prescribe him Sonata a sleep aid to guarantee a good nights rest. He was looking good so they weren't nearly as worried to give him a sleep aid. After Alli and I grab some dinner at the hospital cafeteria and tucked Kyle in I decided to sleep at home, as there was no place for me to sleep in his new room. Kyle assured me that he was fine as he was excited to get some rest. At 6:00AM I got a call from the ICU informing me had been transferred back to the ICU at 5:00AM because his CO2 levels had shot over 100 causing hypercarbia. Hypercarbia can cause dizziness, drowsiness, and mental confusion. Due to the excess levels of CO2 Kyle's eye's rolled in the back of his head and he went in and out of consciousness. After the nurses and returned him to the ventilator to support his breathing he started to come to. Once he was awake he was unaware of his surroundings and fought to remove the ventilator they had just placed him on. They restrained him so they could perform 2 bronchs to test cultures that could be growing in his new lungs. They wanted to weed out any possible infections. From about 6:00AM- 3:00PM he wasn't himself. I won't go into detail but he was angrier than a hornet. The excess levels of CO2 caused his demeanor to change, and he was constantly on a mission to remove the ventilator and had a few choice words for his nurse.
Even though Kyle was out of it, and there was a sense of disappointment being back in the ICU (only 12 hours later) I knew his recovery would bounce back and forth due to the complexity of his surgery. I was determined to not let it get me down as he was still making progress in other areas. We spoke with the kidney transplant team and they informed us he would never have to use the Permcath they had placed in his chest for dialysis, as his kidney was acting heathy and producing a great amount of urine. His creatinine level was 1.5 (now 1.1) after being 3 for the last 10 years. His kidney was looking like that of a normal heathy adult. This was something to be thankful for despite the minor set back.
The following day Kyle was taken off the ventilator to start his second round of 48 hours off the vent on the collar. They removed yet another chest tube leaving 3 of 7 chest tubes. Tonight he is closing in on his 48 hours and we are hoping to hear more about being discharged to Step Down possibly tomorrow or Tuesday. The doctors said he would probably be looking to get his trach downsized from an 8 to a 6 early in the week and eventually will be subjected to a swallow test to see if he is able to eat or drink. They are extremely cautious of patients aspirating in their new lungs which leads to bacteria/infection and eventually rejection. To avoid this they perform swallow studies to see what they can tolerate without compromising their new lungs. Kyle can't wait to drink water, or anything at this point, which the doctors said is one of the hardest parts of transplant, feeling parched.
Kyle continues to make progress because of his determination, strength and with the love of our family and friends. Thanks to those who have called (the list is long), written us letters, texts and sent care packages. Your love has kept us going! Thanks again to our visitors: Dean, Kela, Tina, my mother, and Alli, we feel so blessed to have had you here with us during this time. Also, old friends aka Sara Boeding for being a great friend and familiar face so very far from home. xoxo!