Owen did pretty good overnight. He had moments where his HR increased to 170 from 145 for absolutely no reason while he was sleeping soundly. There was a new team in rounds this morning to start off a new week. Top priority of the day was to retape his breathing tube because the tape was falling off. We had to give him some sedation so that we could protect his airway while we changed it. After that we couldn't get him to wake up until about 4:30pm. I finally opened all the windows and made it bright as day to get him up. After changing him, doing oral care, suctioning him and getting him repositioned.. his sats dropped to 88 and his hR climbed to 180. He was as calm as can be, but his heart just has no reserves. The team wanted to try to Sprint him on the vent today (trial him by turning down the support to see how his heart tolerates it) but we are going to put that off until tomorrow. We didn't touch the Epi today because his BP has been 77/42. His chest xrays and fluid balance are perfect. He is doing well on the Dilaudid for comfort. He continues to be responsive and in good spirits. He doesn't want to do much other than sleep or watch a movie from time to time. I don't blame him one bit, but I keep trying to think of ways to make the time pass.
This little monkey had no problem making the time pass. He is everywhere all the time and can't be stopped. The energy is unreal! I swapped Carson early this morning and went to the hotel to shower, do a load of laundry and snuggle my other babies. It was nice to be away for a few hours but I was paranoid the entire time and called Carson a billion times to check in. I made it back before rounds.
Larissa took the kids shopping today to pick out posters, window clings and comic books for Owen. They got him some Star Wars socks and a movie to watch. He hasn't felt much like doing anything yet.. but he loves the posters the girls hung in his room. They all rallied at the hospital even though Owen didn't feel up to visitors.. we all hung out in the waiting area outside the CVICU while Daddy watched Owen sleep.
We took Logi to the gift shop and let him pick out some super loud lazer gun, light up ball and lazer spin toy. Then they all walked over to Stanford Campus to let Logi play in the grass and run wild. The weather could not be any nicer here! It sure beats the 110 degrees in Phoenix right now.
We continue to watch the clock and pray a heart will come soon. Owen's just hanging in there with everything he's got in him. I can't even imagine how crummy he feels with the low BP, High HR, a breathing tube down his throat and no food in his belly. Then to process everything at the young age of 8 takes some serious maturity. I ask him a million times a day how he's doing and always get a big thumbs up. His other organs continue to be in optimal condition.. it's just all the product of a failing heart. Hang in there Owen.. the prayers are flooding in.
Larissa took the kids shopping today to pick out posters, window clings and comic books for Owen. They got him some Star Wars socks and a movie to watch. He hasn't felt much like doing anything yet.. but he loves the posters the girls hung in his room. They all rallied at the hospital even though Owen didn't feel up to visitors.. we all hung out in the waiting area outside the CVICU while Daddy watched Owen sleep. 
5 comments:
When my boy wanted to just sleep all day after his surgery, I realized something was not right for him. I asked them to turn down the morphine. I'm not sure if Owen is still on Morphine, but just a thought that sedation may be a little too high for his weight and condition and he could even be allergic. It also did the same thing to Mom in the Nursing home, hard to wake her up. Sleep is good, but not too much, being sedated and in bed, as it created a collapsed lung for my son and other problems for my Mom. I don't know what Owen is taking, or if this is even relavent. I know Stan toford is the very best, but sometimes things can get overlooked, and hospitals tend over medicate to ease pain and keep them quiet. Sending love and hugs to Owen through cyberspace ;)
I've never commented on your updates, but felt compelled tonight to let you know that I, like many people, watch and read in the wings, praying and waiting for the miracle. I am a family friend of Ally's family; Its been such a miraculous thing to watch Ally's heart keep your Owen alive. I can't wait to see the next miracle. And It will come. I will fall asleep tonight praying for Owen and you and your whole family. Will anxiously be waiting for the news of his new heart.
Thanks for the update!! You are amazing!! Lots of love and prayers coming from our family!
We sure love that kid! You are doing an amazing job, Andi! The posters and comics were actually Rustyn's doing. He wanted to make sure he had something cool to look at when we was awake. ;-)
Prayers are continuing to come from MD. I pray that Owen gets a heart soon and can get back to playing Legos and being an active 8 year old boy. I check for Owen updates often so thank you for continuing to update. As a mom of a heart warrior I feel your pain - just know so many people are praying for all of you. Let us know if you need anything
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