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The power of Prayer
I know I haven't updated so bear with me. The thought was that Weston was fluid overloaded, we would come for a cath and they could figure out a reason for his heart failure. They ruled out tuberculosis, whooping cough, micoplasma, pneumonia, and a whole host of respiratory viruses. Weston had other plans. No cath because he was so sick. He continued with the coughing through night before last. During that night (Thursday night) he coughed so much and Dr. Hanna was called hourly because nothing was helping. Weston couldn't breathe. Around 8 am, all hell broke loose. Weston was gasping. His respiratory rate was in the 70's-90's with intermittent throw up, lethargy, and him having a glassy eyed stare. He wouldn't make eye contact. He wouldn't talk. It was horrible. The doctors were paged immediately and the thought was that he was definitely in big trouble. Dr. Peridon (great doctor who has been with us for the past 3 July's that Weston has almost died) came in and explained that Weston was in a critical spot. His body was working so hard to breathe that he was afraid he wasn't strong enough and would give out. He said they wanted him NPO in case a breathing tube would be needed. As I have talked about before, breathing tubes are awful on PH kids and if Weston ever went on one, the likelihood of him coming off would be slim. I immediately needed to call Adam to get to Philadelphia NOW. He was on a job so I called his friend Stacy (great guy who will track down Adam in a second) but, come to find out, HE was on the job with Adam (what luck!). I called my friends Ginger and Greg and told them that they had to find Adam ASAP and let him know that he needed to come now. Then, I called my Mother In Law and told her that she and Doug also needed to come and to please bring Easton. While Weston was in and out of it, he just kept asking for Easton. It broke my heart.
This is also when the prayer chains started. As we were trying to work with Weston to get him comfortable, get a new IV in to get lab work, and try to explain to Adam what was going on, people were praying. We felt it in the room, I felt it in my heart, and I know, Weston felt it in his lungs. I know, I sound crazy saying that but it worked. He calmed down just enough to be able to swallow his diuretics. Then, the pee started-like a floodgate opened. He started peeing off the fluid that has been suffocating him. Then, he asked to eat. Dr. Peridon came back down and said that he could eat if he felt like it (thinking Weston wasn't going to feel like it). BREAK OUT THE HOT CHEETOS. Thank you Jennifer Schoondyke and Kari's Heart for sending him the food that the loves the most in the world other than Pals. So, at 8am, we thought he was going to die, now move to 10am with him being sent to the CICU eating Hot Cheetos and waving like he was in a parade. God is so good. I could just stand back in awe.
We got him settled into his room and Chris (a nurse we had only had once before but geez, if he isn't the nicest, friendliest guy) tried to put my mind at ease. Weston was perking up. He cheered for every positive thing and that made a world of difference. By the time Adam arrived at 6pm, he looked good. Still struggling to breathe but alert. By the time Easton arrived around 8, Weston was ready to bounce off the wall with him.
His night was even better. He coughed a few times but nothing like before. Today, he took his oxygen mask off a bunch of times and didn't desat which is a Miracle. He even had his favorite lady in the world (other than Nana and me, of course) with him-Salina! He had all of his friends in the CICU visiting and making him laugh. That is what is so special about CHOP. God has placed it in these nurse's hearts to love these critically ill kids. They are amazing. At rounds this morning, I felt strongly that he needed to go back to the CCU. He needed to be able to move around, play, and get the fluid off. Around 5, he was transferred to Maureen-who has had him a bazillion times and Amy is with him tonight. Both know him so, so well and take the best care of him.
The power of prayer has overwhelmed me this time. This is the 3rd July (I know it isn't July yet, but close enough) that we didn't think Weston was going to make it and by God's grace, tonight, he is hanging out, eating chinese food, and excited to play with his brother tomorrow. We couldn't be more thankful!
This is also when the prayer chains started. As we were trying to work with Weston to get him comfortable, get a new IV in to get lab work, and try to explain to Adam what was going on, people were praying. We felt it in the room, I felt it in my heart, and I know, Weston felt it in his lungs. I know, I sound crazy saying that but it worked. He calmed down just enough to be able to swallow his diuretics. Then, the pee started-like a floodgate opened. He started peeing off the fluid that has been suffocating him. Then, he asked to eat. Dr. Peridon came back down and said that he could eat if he felt like it (thinking Weston wasn't going to feel like it). BREAK OUT THE HOT CHEETOS. Thank you Jennifer Schoondyke and Kari's Heart for sending him the food that the loves the most in the world other than Pals. So, at 8am, we thought he was going to die, now move to 10am with him being sent to the CICU eating Hot Cheetos and waving like he was in a parade. God is so good. I could just stand back in awe.
We got him settled into his room and Chris (a nurse we had only had once before but geez, if he isn't the nicest, friendliest guy) tried to put my mind at ease. Weston was perking up. He cheered for every positive thing and that made a world of difference. By the time Adam arrived at 6pm, he looked good. Still struggling to breathe but alert. By the time Easton arrived around 8, Weston was ready to bounce off the wall with him.
His night was even better. He coughed a few times but nothing like before. Today, he took his oxygen mask off a bunch of times and didn't desat which is a Miracle. He even had his favorite lady in the world (other than Nana and me, of course) with him-Salina! He had all of his friends in the CICU visiting and making him laugh. That is what is so special about CHOP. God has placed it in these nurse's hearts to love these critically ill kids. They are amazing. At rounds this morning, I felt strongly that he needed to go back to the CCU. He needed to be able to move around, play, and get the fluid off. Around 5, he was transferred to Maureen-who has had him a bazillion times and Amy is with him tonight. Both know him so, so well and take the best care of him.
The power of prayer has overwhelmed me this time. This is the 3rd July (I know it isn't July yet, but close enough) that we didn't think Weston was going to make it and by God's grace, tonight, he is hanging out, eating chinese food, and excited to play with his brother tomorrow. We couldn't be more thankful!
Love, Katye and Caelen
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