Tonight all is well. Kasey is asleep and has been for an hour now. Hopefully his days/nights are beginning to turn back in the right direction. He got up three times today to walk the halls and on one walk the physical therapist had him tackle a set of stairs. He did them wonderfully! But it really wore him out. In my last post I forgot to add that we were admitted to hospital at 4 ft. 8 in. and when we checked his height yesterday he was an even 5 ft. He gained 4 inches from surgery!! It is weird to me to be almost eye to eye with my baby.
His chest xrays looked better today and he was weaned from 4 liters of oxygen to half a liter. Hopefully tomorrow he will hold his own and won't need oxygen at all anymore. He will get his last dose of antibiotic tonight and then that will end all things going in via I.V. It is quieter on the pediatric floor so we are enjoying just being able to chill out a bit.
Yesterday the nurses were being overly optimistic when they said we might be out by the end of the weekend. The doc came in today and said it is looking like next week sometime. So, we settle in a bit more -- I unpacked the M&M fun packs and set up my essential oil diffuser!
Today is day 11 of being in the hospital and we are feeling it. We are both ready to be home and we are missing our family being all together...Kasey's even thinking about the dog so much he told Eric he should leave the hospital early tonight to let Tuffy out of his kennel. He is always thinking of others! Overall, we are doing well here and hope you all are also.
Goodnight <3
Saturday, October 6, 2012
Friday, October 5, 2012
Kasey Layne 10/5/12
Today was a good day!
We started it off with the surgeon telling us we were getting out of ICU in the afternoon! One lung looks better, one the same but good enough to move to the next level. Kasey walked through the ICU hallways before leaving the unit. He is walking well with a walker and he is strong! We are looking forward to a good night's sleep in a more private room. If all goes well, we could be looking at going home before the weekend is over. That's what will happen -- I just know it. He is walking good, talking good, eating good, and of course, winning over the hearts of all the nurses!
So, I'm keeping it short tonight.
Thanks for all your support!
We started it off with the surgeon telling us we were getting out of ICU in the afternoon! One lung looks better, one the same but good enough to move to the next level. Kasey walked through the ICU hallways before leaving the unit. He is walking well with a walker and he is strong! We are looking forward to a good night's sleep in a more private room. If all goes well, we could be looking at going home before the weekend is over. That's what will happen -- I just know it. He is walking good, talking good, eating good, and of course, winning over the hearts of all the nurses!
So, I'm keeping it short tonight.
Thanks for all your support!
Thursday, October 4, 2012
Kasey Layne 10/2-10/4/12
Not much has changed in the last few days. He is looking better and getting up a little more but no change in his lungs. We have an official diagnosis now of pneumonia. His lungs are just taking a bit longer to heal. We discovered today that talking on the phone is a good way to build his lungs back up since he's so social -- so if you have our number, feel free to call and ask for Kasey!
He had 2 drainage tubes coming out of his lower back, which they took out on Tuesday. He is still having to sleep with the bi-pap mask on. That is the apnea type mask that blows air into his lungs to create positive pressure. And it is that mask alone that is keeping us in ICU. As soon as he no longer needs to wear that mask when sleeping, we can transfer to the regular floor.
His left arm isn't working the way it did before surgery so we are now addressing that. The doc thinks it may be an issue of laying on the surgical table for 16 hours and how his arm was positioned. It possibly has some damage around his brachial plexus **I think that's what he called it** but he should regain the movement with physical therapy. They are saying that if it were a central nervous system or a spinal cord issue more of the body would be affected. His hands, fingers, and grip are normal. I just discovered a therapy tool tonight though. It takes two hands to use his iPod so I am making him switch hands every so often and he has no idea he's "working"!
Yesterday was moving day for the entire pediatric ICU so we are now in a new area of the hospital. It is less private in the new area so I am praying we can leave this unit soon. It is so humbling and so hard to watch families that know they will not take their babies home from this ICU. They are preparing to say goodbye. It was overwhelming to me yesterday to hear one family's story and to realize that only by the grace of God have we not had to say goodbye to Kasey with all that he's been through in his short life. Why do some babies make it and not others? It's hard. It's hard to celebrate our victories when someone else is losing. My heart is grateful, thankful, extremely humbled, and once again reminded that life is short -- and uncertain. Kasey's surgery was a grisly one and after the fact we've had a few docs admit the uncertainty he faced, not only with the surgery and recovery but with the scary lung issue the other day. They are professionals so at the moment when I am searching their faces for any sign of emotion I can't see it, but when it's all said and done and we are on the good side of things they have offered that emotion up.
So, yesterday was another emotional roller coaster type of day. And Kasey has what one nurse called "ICU Psychosis" so he sleeps off and on all day then at about 10pm he's ready to chat and comes to life. That makes it is hard to get any amount of sleep! I finally decided if I was going to make it in this ultra marathon I needed to get a good night's sleep, so I went home last night while my brother stayed with Kasey. I cried halfway home with the guilt of leaving. Noah was with me though so he tried to knock some sense into his Momma! It hits me at weird times, but like I said, you can't help but feel so incredibly blessed for your own trials when you see the path others are having to walk.
We still covet prayers for Kasey and all the other families in here with sick babies. It's so easy to get caught up in our lives and forget or block out the pain and suffering of others but being back in the hospital has been a quick reminder that all suffering is relative.
Thanks for all your support!
He had 2 drainage tubes coming out of his lower back, which they took out on Tuesday. He is still having to sleep with the bi-pap mask on. That is the apnea type mask that blows air into his lungs to create positive pressure. And it is that mask alone that is keeping us in ICU. As soon as he no longer needs to wear that mask when sleeping, we can transfer to the regular floor.
His left arm isn't working the way it did before surgery so we are now addressing that. The doc thinks it may be an issue of laying on the surgical table for 16 hours and how his arm was positioned. It possibly has some damage around his brachial plexus **I think that's what he called it** but he should regain the movement with physical therapy. They are saying that if it were a central nervous system or a spinal cord issue more of the body would be affected. His hands, fingers, and grip are normal. I just discovered a therapy tool tonight though. It takes two hands to use his iPod so I am making him switch hands every so often and he has no idea he's "working"!
Yesterday was moving day for the entire pediatric ICU so we are now in a new area of the hospital. It is less private in the new area so I am praying we can leave this unit soon. It is so humbling and so hard to watch families that know they will not take their babies home from this ICU. They are preparing to say goodbye. It was overwhelming to me yesterday to hear one family's story and to realize that only by the grace of God have we not had to say goodbye to Kasey with all that he's been through in his short life. Why do some babies make it and not others? It's hard. It's hard to celebrate our victories when someone else is losing. My heart is grateful, thankful, extremely humbled, and once again reminded that life is short -- and uncertain. Kasey's surgery was a grisly one and after the fact we've had a few docs admit the uncertainty he faced, not only with the surgery and recovery but with the scary lung issue the other day. They are professionals so at the moment when I am searching their faces for any sign of emotion I can't see it, but when it's all said and done and we are on the good side of things they have offered that emotion up.
So, yesterday was another emotional roller coaster type of day. And Kasey has what one nurse called "ICU Psychosis" so he sleeps off and on all day then at about 10pm he's ready to chat and comes to life. That makes it is hard to get any amount of sleep! I finally decided if I was going to make it in this ultra marathon I needed to get a good night's sleep, so I went home last night while my brother stayed with Kasey. I cried halfway home with the guilt of leaving. Noah was with me though so he tried to knock some sense into his Momma! It hits me at weird times, but like I said, you can't help but feel so incredibly blessed for your own trials when you see the path others are having to walk.
We still covet prayers for Kasey and all the other families in here with sick babies. It's so easy to get caught up in our lives and forget or block out the pain and suffering of others but being back in the hospital has been a quick reminder that all suffering is relative.
Thanks for all your support!
Monday, October 1, 2012
Kasey Layne 9/30-10/1/12
Kasey's xrays are looking slightly better each day. Today, his respiratory cultures came back with multiple bacteria growing so they are starting him on a different antibiotic. This could also be why his fever is still present and his chest xrays aren't showing much improvement. He has had 2 days of physical therapy sitting him up on the edge of the bed. They are weaning his high powered pain meds in hopes of getting him to be more awake and alert throughout the day and he really was alert today. Everyday is getting better, it's just going slower than originally predicted. Of course, the lung issue is something that was not anticipated. He is off the ventilator as of yesterday but they immediately put him on a bi-pap machine (which sort of looks like a c-pap mask that people wear who have apnea.) But he can be off of that more and more -- just using a nasal cannula for oxygen.
The docs are saying it will probably be another 5-7 days in the hospital but hopefully not many more nights spent in ICU. He is not as strong, but that seems like a given due to laying in bed all the time and the fact that he hasn't had any food since last Tuesday. Tomorrow will be a week with no food or drink.
So, tonight I just ask for prayers that his fever will subside, that his lungs will improve greatly and he will regain strength.
Thank you.
The docs are saying it will probably be another 5-7 days in the hospital but hopefully not many more nights spent in ICU. He is not as strong, but that seems like a given due to laying in bed all the time and the fact that he hasn't had any food since last Tuesday. Tomorrow will be a week with no food or drink.
So, tonight I just ask for prayers that his fever will subside, that his lungs will improve greatly and he will regain strength.
Thank you.
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