Movies are an amazing way to tell a story, one that I quite enjoy. They just seem to draw you in and before you know you are engrossed in the story. Their lives becomes your lives, their problems are your problems, and their emotions your emotions. When they have a great day, your day gets better, when they are in trouble you feel it too. You are so engrossed that you are almost upset when the story ends and the credits roll. You have become so engaged with your new friends that you want to see what the life is like "after the credits". Well that is what life is like for us. See we are HOME!!!!! We have been since Thursday night. Sorry for not posting sooner, see we have this thing about not posting pending discharge dates, we have had too many "maybe" discharges that we try not to get our hopes up. We actually don't believe we are getting discharged until we have been home for a day or two. They pulled both of our chest tubes, they just seemed to stop :-), on Wensday and discharged us on Thursday. We have come home with a few more medications, an open chest tube site that we have to pack, and two chest tube sites that are stitched close, whose stitches are going to be removed on Monday. We also came home with a very happy two year that is enjoying her newly repaired heart. A little girl whose oxygen saturations are now in the 90's, who no longer has blue eye lids, lips, fingers, and toes, and has very warm hands and feet. She is liking it very much and her surgery credits are rolling.
The question is "Where do we go from here?". It is such an amazing thing. We have spent the last two and a half years preparing for a surgery or heart cath. We have fought for every pound that she has gained, for every illness we have avoided and for every milestone we have hit. We have learned to be so "cautiously optomistic" we had a hard time accepting good news when it came our way. We have learned to plan for the worst and hope for the best. Well, now the best has had happened....we have gone from fifty-fifty odds and your daughter has an hour left (from the first surgery) to your daughter is going home and she is amazingly healthy. God has given us an amazing gift, its just one that, maybe, we can't quite believe is here. Its like waiting for a bomb to go off, that never did and now letting the adrenaline wear off. I think it will just take some getting used to. Trust I am not complaining. more expalining.
Now we aren't out of the woods completely. There is always a chance that we will need another surgery or even a heart transplant later on in life, but any problems in the short run would have happened already. So, now we have the joy of taking care of a two year old, to teach her that her life is a gift. To be responsible, compassionate and merciful. To teach her that while she has a congential heart deffect....she is NOT JUST a congenital heart deffect. Don't worry this isn't the end of our story ( I will continue to write updates), mearly just another chapter in the life of Kylie Marie Stowers.
Please be praying for all the children and the families of CHD. Some have just started this journey, some are in the middle, some have come out like us, and some have gone on to be in heaven. There are too many to write about...but God knows their names. God bless you all.
Now I have to go change a poopy diaper....oh how I love you MIRALAX
Sunday, January 23, 2011
Monday, January 17, 2011
AAAHHHHHH! THE SQUIRRELS!
Squirrels are many things. They are furry, small creatures, and they are kind of cute. Completely unassuming and, seemingly, nonthreatening creatures. They do have teeth, though, and those teeth can be sharp, but the saving grace is that there is only one of them and it is really rather small, so what is the damage that it can do, right? Really, it can only get your toe and all it takes is once swift quick kick to punt the little rodent over the fence. But, what if the little thing had friends and what if they organized and, don't forget, they jump. All of a sudden you have a bit more of an issue. They can get at a bit more aggressive and they are harder to fight off and they can become overwhelming and more than just alittle annoying. The last few days has been a bit like being attacked by a pack of organized, leaping squirrels. There hasn't been any big problems, just a bunch of little ones, that don't have any real tangible end in sight. You want to meet my squirrels, let me show you the ones that are munching on my toes right now, annoying little rodents that are also known as Chest Tube drainage.
Kylie has two chest tubes, one on either side of her chest. They are to catch all the fluid that is collecting in her chest cavity as she is healing from her surgery. Her little body can absorb only so much excess fluid back into it before its get saturated and the fluid just begins to fill the cavity. If the fluid becomes too great, it constricts the lungs and the heart and that could cause some serious problems. So they put tubes in to suck out the fluid and we wait for the drainage to go down until it drains at a level that Kylie's body can handle it and we wait...........and wait......and, for the sake of something different, we wait. With Kylie's weight, we need her to not have anymore than 10cc's in an 8hr period. Then we need that to stay consecutive over a 24 hr period. So no more than 30cc's (once again for you math majors) in a day. Well Kylie has a twisted sense of humor, she will do 5 cc's one 8hrs, then 5cc's for the next 8hrs, and then she has 40cc's for the next one, then for the next day it will be 5cc's again. She is slightly mean, I think she enjoys it. We are stuck here until she decides she has had enough. They have tried to increase her diuretics but that is starting to effect her weight, she is down a pound since we started this. They also seperated them and gave them, each, their own drainage tanks. That way we can see if their seperate their drainage is small enough that they can pull one of them. We thought that the drainage was evenly, through both sides and that we could loose them both, tommrow. Actually, one side, we found out, doesn't drain, at all. There is a good chance that one can be pulled tomorrow. The other one is still flowing freely. These tubes are going to stop, it is just a matter of when. The nurses have seen some stop overnight and some go on for months. For us it has been almost 2 weeks, the doc's give us another week before they start looking for a diagnostic reason. For now, though this squirrel leads to another one, this one biting our knees.
Kylie has very sensitive skin. She doesn't bruise easily but we have noticed that her skin doesn't hold stitches well. That is a problem because her chest tubes are held in by stitches. We aren't worried about her pulling the tubes out so much, as we are that when we pull the tubes and we pull the stitches to close the openings of where the tubes were, they don't hold. We have already had that problem once. Her central chest tube, the one that got pulled earlier, stitch broke and it is reopen. It isn't deep but it is deep enough to cause problems, for example, infcection. So we get to pack her wound, a process my daughter "loves ever so much". My daughter is quite amazing though and strong. Her chest is coverd in bandages and those bandages are coverd in a kind of a mesh tank-top. Then her shirt goes over top of that. Kylie is very patient with people taking her shirt off and doing vitals. It isn't until people take the mesh off that she gets upset and cries. Even then, for the most part she will keep herself still and allow you to do what you need to do. She knows she doesn't like it but I think she realizes that she needs to have it done. She is amazing.
Another squirrel that is biting our nose, and seems to be an even more pressing one is that she is too stinkin' cute for her own good. She has been here. total, about 1/4 of her whole life. The doctors and the nurses all know her and her story and they love her to death (pardon the expression). To top it off, she is so cute, I blame my wife for that one. The staff here indulge her and shower her with attention and she eats it up. Also, it is hard because, it is a natural tendancy to be lenient towards a sick child. So, Kylie's discipline has been lax and you could start to see it in the way she acted. I know that she isn't herself and that she hasn't felt well but the way she was acting was starting to affect her care. She was getting to a point where she wouldn't eat, she was refusing to take her meds and she wouldn't sleep. So we had to set a routine for her and start up with the dicspline. Let me tell you, it is really hard to try and discpline a sick two year old, they are great at the guilt trips. I think an important thing for her,though, is to realize that even though, the heart issue, is a big part of who she is and a big part of her life, it isn't all that she is. She is so much more than the sum of her parts. We cannot allow her to use this as an excuse to be less than what I know she can be. God has given us an amazing little girl and it is our job to raise her right.
Kylie has two chest tubes, one on either side of her chest. They are to catch all the fluid that is collecting in her chest cavity as she is healing from her surgery. Her little body can absorb only so much excess fluid back into it before its get saturated and the fluid just begins to fill the cavity. If the fluid becomes too great, it constricts the lungs and the heart and that could cause some serious problems. So they put tubes in to suck out the fluid and we wait for the drainage to go down until it drains at a level that Kylie's body can handle it and we wait...........and wait......and, for the sake of something different, we wait. With Kylie's weight, we need her to not have anymore than 10cc's in an 8hr period. Then we need that to stay consecutive over a 24 hr period. So no more than 30cc's (once again for you math majors) in a day. Well Kylie has a twisted sense of humor, she will do 5 cc's one 8hrs, then 5cc's for the next 8hrs, and then she has 40cc's for the next one, then for the next day it will be 5cc's again. She is slightly mean, I think she enjoys it. We are stuck here until she decides she has had enough. They have tried to increase her diuretics but that is starting to effect her weight, she is down a pound since we started this. They also seperated them and gave them, each, their own drainage tanks. That way we can see if their seperate their drainage is small enough that they can pull one of them. We thought that the drainage was evenly, through both sides and that we could loose them both, tommrow. Actually, one side, we found out, doesn't drain, at all. There is a good chance that one can be pulled tomorrow. The other one is still flowing freely. These tubes are going to stop, it is just a matter of when. The nurses have seen some stop overnight and some go on for months. For us it has been almost 2 weeks, the doc's give us another week before they start looking for a diagnostic reason. For now, though this squirrel leads to another one, this one biting our knees.
Kylie has very sensitive skin. She doesn't bruise easily but we have noticed that her skin doesn't hold stitches well. That is a problem because her chest tubes are held in by stitches. We aren't worried about her pulling the tubes out so much, as we are that when we pull the tubes and we pull the stitches to close the openings of where the tubes were, they don't hold. We have already had that problem once. Her central chest tube, the one that got pulled earlier, stitch broke and it is reopen. It isn't deep but it is deep enough to cause problems, for example, infcection. So we get to pack her wound, a process my daughter "loves ever so much". My daughter is quite amazing though and strong. Her chest is coverd in bandages and those bandages are coverd in a kind of a mesh tank-top. Then her shirt goes over top of that. Kylie is very patient with people taking her shirt off and doing vitals. It isn't until people take the mesh off that she gets upset and cries. Even then, for the most part she will keep herself still and allow you to do what you need to do. She knows she doesn't like it but I think she realizes that she needs to have it done. She is amazing.
Another squirrel that is biting our nose, and seems to be an even more pressing one is that she is too stinkin' cute for her own good. She has been here. total, about 1/4 of her whole life. The doctors and the nurses all know her and her story and they love her to death (pardon the expression). To top it off, she is so cute, I blame my wife for that one. The staff here indulge her and shower her with attention and she eats it up. Also, it is hard because, it is a natural tendancy to be lenient towards a sick child. So, Kylie's discipline has been lax and you could start to see it in the way she acted. I know that she isn't herself and that she hasn't felt well but the way she was acting was starting to affect her care. She was getting to a point where she wouldn't eat, she was refusing to take her meds and she wouldn't sleep. So we had to set a routine for her and start up with the dicspline. Let me tell you, it is really hard to try and discpline a sick two year old, they are great at the guilt trips. I think an important thing for her,though, is to realize that even though, the heart issue, is a big part of who she is and a big part of her life, it isn't all that she is. She is so much more than the sum of her parts. We cannot allow her to use this as an excuse to be less than what I know she can be. God has given us an amazing little girl and it is our job to raise her right.
Finally, we have one other squirrel that is nibbling at us any chance he gets. It is a hard one to see, but he is there. He is also a squirrel that I want to make all families of special needs aware of. For lack of a better name he is the squirrel of guilt. I have noticed that Aubrey and I have been feeling guilty for being frusterated and upset, at times. We get frustrated about the chest tubes, the wounds, and the being stuck here for who knows how long. But, also we feel guilty, because we feel frusterated. We see other families around us going through so much worse and knowing that they would love to be where we are. We also see where we have been and how far we have come, and we know this is more of an annoyance, where we are now than anything else. So we feel guilty for how we feel. Maybe that is something you can relate to, as well. If that be the case, I would like to encourage you to recognize the good things God has done in our lives but to also allow the bad to be realized. If you just try and sweep it under the rug, ignore it and feel guilty for not always 100% of the time being happy, it is going to come back to bite you. You will feel those feelings, one time or the other and, I feel, by hiding those feelings, just allows them to grow until they are unbearable. By giving name to them and dealing with them, itis healthy and I think will allow you to heal from them. So I am giving you licensce to feel bad every so often, I think it could be healthy for you.
So here we sit, waiting. I have felt bad not posting more often, but with work and the whole lack of news, I don't think it would have been very interesting posts and you all know how I hate to be boring. Love to you all and may God's blessings be upon you.
P.S. please be praying for a little girl named Ealise, not sure on spelling, she was on her way home from the hospital, and her shunt failed. She had to be life flighted back and is now on life support and waiting for surgery in the morning.
-another little girl is Zarina, who is scheduled to have an unexpected surgery in the morning
-Also please pray for Brett's, the little boy on ecmo with the collapsed lung, he went home to be God a few days back.
- We met a woman yesterday who has been here for about a year. Her husband had a lung transplant and it didn't go well. Doctors are not expecting him to last much longer.
-Also pray for a man we met today, his wife just had brain surgery, and they are discharging her tommrow.
-and all the other families that are here.
Thanks for lifting up these families
P.S. please be praying for a little girl named Ealise, not sure on spelling, she was on her way home from the hospital, and her shunt failed. She had to be life flighted back and is now on life support and waiting for surgery in the morning.
-another little girl is Zarina, who is scheduled to have an unexpected surgery in the morning
-Also please pray for Brett's, the little boy on ecmo with the collapsed lung, he went home to be God a few days back.
- We met a woman yesterday who has been here for about a year. Her husband had a lung transplant and it didn't go well. Doctors are not expecting him to last much longer.
-Also pray for a man we met today, his wife just had brain surgery, and they are discharging her tommrow.
-and all the other families that are here.
Thanks for lifting up these families
Thursday, January 13, 2011
pictures
Not a whole lot going on today, just still waiting for her chest tubes to stop draining. So I thought I would post a few pictures from last night and today. The first one is a picture someone took of us downstairs in the atrium which is a beautiful place with live plants and a waterfall . We go there to relax & get out of the room. The next two are pictures of just Princess Kylie in the atrium. After that is a picture of Kylie walking . We do A LOT of walking for two reasons 1st they say it will help her heal faster & 2nd we can only stand to sit in her room for so long before we all have meltdowns. The last two are pictures of Kylie by Big Bird and of her rocking in the rocking chair in her room. I hope you enjoyed these as much as we do. As always thank you for your continued prayers for us and for the other families up here.
Wednesday, January 12, 2011
Princess Kylie
PRINCESS KYLIE MAKING HER ROUNDS AND VISITING HER PEOPLE
Suprises are usually a good thing. You know, a suprise party on your birthday or a suprise day off from work, those kinds of things are wonderful to get. Then there are some suprises that are not so wonderful, a suprise flat tire or a scorpion in your shoe that you didn't realize was there until you put your bare foot in (saw it in a movie), those are suprises one would rather not have. With Kylie we have had both. We have had the good suprises, things like watching Kylie heal and get better after all the doctors had told us that she wasn't going to make it. We have, also, had the bad surprises, 16 hrs after we had Kylie home the first time she started having sezuires and we had to take her back to the hospital. Praise God that we have more good surpises than bad, but some days they make you long for a boring day :-). We had a surprise yesterday and this one wouldn't fall in to the good column, but don't worry it doesn't really fall into a bad column either. This one is more of an annoying surpise. Kylie has two more chest tubes left and they have to stay in until her drainage drops down to about 50cc's or less in a 24hr period. Well, we were getting close to it. Over the last day or so, her drainage had gone down remarkably and that green light for the pullage of the tube was getting brighter. But then Aubrey noticed something, strange, she noticed a WORM. "A worm?" you say, probably with a slightly wierd look, maybe disgusted look, "There is a worm in Kylie, like one you would find in apple." Nope my daughter is not doing an impression of a "BAPPLE" (as she would say ) . A worm, in this case, is a clot in the chest tube line. Kylie had a plug in the drain and once they worked it out she started back up again and, about doubled her output. So that green light has dimmed alittle and gotten smaller. There is really no way of telling when her tubes will stop draining. The staff here has seen them go for months, on very rare occasions. and some suddenly just stop. It is really up to Kylie and God, and with the way Kylie is being treated here, she may just want to stay forever.
Kylie, seems to be one of the unoffical mascotts of Mott's Hospital. She is treated like a princess here, don't get me wrong, she is one :-), but I think it is going to her head a little and now that she has a little tiara, a gift from Julie (thanks it is very cute), there is no stopping her. She loves to roam the halls, visiting her people and soaking up the attention. The fact that she is adorable just makes it even better. She gets stopped all the time in the hallways and eveyone is taking pictures of her. In fact, they had a professional photographer taking publicity stills of the hospital, and they stopped to get a few shots of her. It was really quite fun to see the joy she was giving to people and the joy she was getting out it. That is the best way I can describe her is just a joy. I mean, we have our issues. she is two after all and she is going to test things, but she is the closest thing to the picture of heaven that I have ever experienced and I am so thankful for her.
There is one family that needs prayers here, well I am sure more than that, but they really need it now. There names is Jessica and Robert and there son Brett isn't doing well at all. He is in the ICU and on ECMO. Anyone remember Kylie's experience on ECMO? Well Brett isn't looking too much better, in fact I think is sicker. Brett has progressed as far as he can go on ECMO and it is time to take him off. That, in and of, itself is stressful enough. But, so things don't get boring, one of his lungs has collapsed and they can't get it reinflated. The doctors have given him a 20% chance of making it through this. I know that is bleak but I know, through God, all things are possible becasue we were there. We were in that bed. watching Kylie bleed to death after ECMO. The doctors had done everything they could and there was nothing left to do. So I prayed and I asked you to pray, and you did and, against all odds she got better and here we are. I am asking you to do the same for this family and bath them in prayer. Let them feel it surround them. It is ultimatetly in God's hands but I know the power of your prayers because you have blessed my family with it. Thank you for your prayers and your support, we are blessed by it.
Sunday, January 9, 2011
update part duex
So when we last left our intrepid hero, mommy had just left and went back to the house, and he was left to manage everything, not a hard thing to do, or so he thought. In hindsight, I think mommy knew something was going to happen and she left on purpose. She would deny it, but I have my suspicions. Regardless of mommy's intentions, 15 minutes after she left the I.V. started to read "OCCLUDED!!", see very suspect. She only has one I.V (and it only works about 75% of the time), she had two when she came down to the floor, but that one got accidentally yanked out. We aren't sure who yanked it out but from what we understand he was bald, extremely handsome, and his name rhymed with Don, but that is another story for another time. So anyways, the line reads as occluded and the nurse comes in and says that she can see the kink in the I.V., but she isn't going to risk pulling it out to try and fix it. My daughter, after everything she has been through, is an extremely hard stick. Neither one of us is looking forward to, if we lose it, trying to find another usable vein. So, the nurse calls in the big guns. The U of M hospital has a specialized unit to deal with just I.V.'s, so the nures puts in the call and we wait. I get my daughter out of the bed and hold her because I am convinced that we are going to have stick her again, so I am going to baby her alittle. I get about an hour of cuddle time before the nurse shows up, not complaining about that. She takes a look at the I.V. and thinks she can fix it, GREAT!!, the only issue is now trying to get at it. See, giving a two year old an I.V. is hard enough, only slightly less hard is trying to make sure they don't play with this wonderful new toy. To do this, they have to wrap it and protect it and whoever put this I.V. in was, either,very protecting or felt my daughter's hand was catipillar and they were caccooning it for the butterfly. It took us about 15 minutes and some breath holding, but they were able to unwrap and unkink the line. It was such a relief when they had it all set and fixed and we were ready to put her back in bed. Little did I know that the fun had just started.
See after an hour of my daughter being held and cuddled, and then the screaming and crying she went through with the whole I.V. thing, my daughter was a little warm. When we laid her back down we noticed that the bandage on her chest tube, had come unstuck. Now. to give you an idea of what my daughter has been through, if you were to look at my daughter's chest, you would see a contolled mess. Right down the center, from her neck to almost the belly button is a stitched inscion and on either side of that are two, heavily bandaged chest tube sites. One site covers a single tube and the other covers two, so she has three chest tubes, for all you math majors out there :-). Of course it couldn't have been the one tube that came loose, it had to be the one with the two tubes. So we now have to lay this poor, tired, sore, child on the bed, open up her shirt and pull off the bandage the rest of the way. Needless to say she was not a happy camper and it took us another half an hour to get her put back together and asleep, trust me she had no problem falling asleep. I so wish that I could say the rest of the night went smoothly....
Unfortunatetly I can't because at 3am her I.V. started yelling, again. It had occluded, again. It wasn't a problem with the I.V. so much as the fact that my daughter is laying in a way that pinches it off. So we get her settled and asleep, the nurse leaves, and my head hits the pillow, and no sooner do I start to doze but the I.V. starts beeping again, sometimes I feel these machines have a mind of their own and they all hate me. It isn't paranoia if they really are out to get you, right? To put the cherry on the cake, this went on for a whole hour, until they finally decided to just shut it off and let us get some sleep. Oh what fun.
The next day was better, for the most part. Kylie is starting to look more and more like herself, as the day went on. At the end of the day she was laughing and smiling and talking. She finally pooped too, saving herself a suppository by mere hours. That may sound strange to you, but when the last time you have gone is 6 days ago and your belly is starting to get hard, that is sweet relief. We also got to take her for a walk, she walked on her own, and took her to play. The real sweet deal, though, is that we are going to loose a chest tube tommrow. The center one has so little draining coming out that we can pull it tommrow. This is great for a few reasons, one because, it is one step closer to getting her out of here and two, with this one out we can leave the floor and go walk around :-). If the center one was to come out, accidentally, it is the one that is most likely to bleed heavily, not that there is a high chance of it falling out, but they want to be able to keep an eye on it. They are paid to be paranoid. Oh and that I.V. that was giving us so much problems, it finally popped out and they gave us a new one that seems to be working good.
So tommrow, is going to be a busy day, but also a lazy day. We have the chest tube pullage, is that a word, but that is at 10am. They are going to sedate her for it, nothing heavy, but enough that she will sleep for quite a while. Also I have to go back to work tommrow for the next two days, so please pray for us that I travel home safe, that I do my job well, and that my daughter heals with out a hitch while I am gone, and also while I am here. I so cannot wait, till I bring them home with me.
See after an hour of my daughter being held and cuddled, and then the screaming and crying she went through with the whole I.V. thing, my daughter was a little warm. When we laid her back down we noticed that the bandage on her chest tube, had come unstuck. Now. to give you an idea of what my daughter has been through, if you were to look at my daughter's chest, you would see a contolled mess. Right down the center, from her neck to almost the belly button is a stitched inscion and on either side of that are two, heavily bandaged chest tube sites. One site covers a single tube and the other covers two, so she has three chest tubes, for all you math majors out there :-). Of course it couldn't have been the one tube that came loose, it had to be the one with the two tubes. So we now have to lay this poor, tired, sore, child on the bed, open up her shirt and pull off the bandage the rest of the way. Needless to say she was not a happy camper and it took us another half an hour to get her put back together and asleep, trust me she had no problem falling asleep. I so wish that I could say the rest of the night went smoothly....
Unfortunatetly I can't because at 3am her I.V. started yelling, again. It had occluded, again. It wasn't a problem with the I.V. so much as the fact that my daughter is laying in a way that pinches it off. So we get her settled and asleep, the nurse leaves, and my head hits the pillow, and no sooner do I start to doze but the I.V. starts beeping again, sometimes I feel these machines have a mind of their own and they all hate me. It isn't paranoia if they really are out to get you, right? To put the cherry on the cake, this went on for a whole hour, until they finally decided to just shut it off and let us get some sleep. Oh what fun.
The next day was better, for the most part. Kylie is starting to look more and more like herself, as the day went on. At the end of the day she was laughing and smiling and talking. She finally pooped too, saving herself a suppository by mere hours. That may sound strange to you, but when the last time you have gone is 6 days ago and your belly is starting to get hard, that is sweet relief. We also got to take her for a walk, she walked on her own, and took her to play. The real sweet deal, though, is that we are going to loose a chest tube tommrow. The center one has so little draining coming out that we can pull it tommrow. This is great for a few reasons, one because, it is one step closer to getting her out of here and two, with this one out we can leave the floor and go walk around :-). If the center one was to come out, accidentally, it is the one that is most likely to bleed heavily, not that there is a high chance of it falling out, but they want to be able to keep an eye on it. They are paid to be paranoid. Oh and that I.V. that was giving us so much problems, it finally popped out and they gave us a new one that seems to be working good.
So tommrow, is going to be a busy day, but also a lazy day. We have the chest tube pullage, is that a word, but that is at 10am. They are going to sedate her for it, nothing heavy, but enough that she will sleep for quite a while. Also I have to go back to work tommrow for the next two days, so please pray for us that I travel home safe, that I do my job well, and that my daughter heals with out a hitch while I am gone, and also while I am here. I so cannot wait, till I bring them home with me.
Saturday, January 8, 2011
Slow day, for the most part.
So the day was rather quiet. Kylie spent most of the day sleeping and resting, I mean who can blame her. She is really only a few days out of post-op. Her chest hurts where it is stitched together, they usually steri-strip it, but since they had to reopen it to get the extra bleeder, they needed something a bit stronger. She has three chest tubes that are draining the excess liquid from her chest cavity and her throat is raw from the tube that was down her throat. So needless to say, moving is not really something that she wants to do. She is much happier to stay in bed. But guess what was one of our main goals today, you guessed it...we needed to get her out of the bed. It helps to get the junk out her lungs and to breathe easier, it helps to get the excess fluid around so they reach the open tubes, so they can drain out, and it helps her get her strength back. So with a little bit of work we got Kylie, the chest tubes, and the oxygen tank all situated in a cart and took her for a walk and let me just say, she was thrilled:
Actually there were points of this ride where she looked more annoyed at me than I have ever seen her before. I am thinking that I was getting a taste of her when she will be a teen-ager :-). No I am just kidding, she was exhausted. She is the strongest person I know. Because even after everything we have been through she still gave me a little treat.
Now that is a wonderful thing ain't it.We are still working with Kylie to eat and drink more. She isn't doing well with drinking, she doesn't want the juice and the formula she threw up. Eating is ok, but not stellar. She liked the kiwi and the applesauce alot and she LOVED the popsicle and chocolate chip cookie. I think one of her big problems is that she runs out of energy. For example, she was eating a cup of kiwi and really enjoyed it, the only issue was that she ran out of steam and fell asleep with her hand in the cup. Her body has been through alot and needs sometime to heal.
I am going to let this go for now, because I am tired...which is really kind of funny, because I did nothing :-). But stayed tuned tomorrow, when I tell you about all the "fun" we had when Mommy left to go to the Ronald Mcdonald House and daddy was here all by himself.
TO BE CONTINUED......
WE MOVED!!!
I know that there hasn't been an update in a few days, I had to head back to work, the place would fall apart without me :-D. But, I am done for the weekend and back up where I belong, with my family. Also. even though I was busy, my wife was even busier. She moved us :-).
My daughter has handled being extubated well, she still has a weird sounding cough as she tries to get the junk up. She has switched to oral meds for the most part, we still get an I.V. antibiotic and she has weened off all of her sedation, she still has oral Oxyconde, for pain. So, there was no real reason to keep her in the ICU, so ...they didn't.
We still have a was to go, though. We came to the floor with three chest tubes in and on constatnt O2. The chest tubes are drainging alot. The color of the drianage is the right color, so they aren't worried about bleeding but it is something they are keeping an eye on. We are also trying to ween her off the oxygen, but her system isn't ready for it. They want to keep her in the 80-85% range, but even with support we dip down to 78%. She likes to sleep alot right now and it is very very sore for her to be held. We are on the road to recovery, it's just going to take a while to get there.
The goal for today is to get her up out bed and take her for a little walk and let her play, alittle. They also want to see her drink some more. She doesn't reahh have much in the way of energy to eat or drink. We gave her a cup of kiwi, which she liked alot, she just fell asleep with her hand in the cup half way through. We just want to take it a day at a time. I will write more tonight and let you know how things go.
I am up and so thrilled about it
Hanging out with Uncle Rob
My daughter has handled being extubated well, she still has a weird sounding cough as she tries to get the junk up. She has switched to oral meds for the most part, we still get an I.V. antibiotic and she has weened off all of her sedation, she still has oral Oxyconde, for pain. So, there was no real reason to keep her in the ICU, so ...they didn't.
We still have a was to go, though. We came to the floor with three chest tubes in and on constatnt O2. The chest tubes are drainging alot. The color of the drianage is the right color, so they aren't worried about bleeding but it is something they are keeping an eye on. We are also trying to ween her off the oxygen, but her system isn't ready for it. They want to keep her in the 80-85% range, but even with support we dip down to 78%. She likes to sleep alot right now and it is very very sore for her to be held. We are on the road to recovery, it's just going to take a while to get there.
The goal for today is to get her up out bed and take her for a little walk and let her play, alittle. They also want to see her drink some more. She doesn't reahh have much in the way of energy to eat or drink. We gave her a cup of kiwi, which she liked alot, she just fell asleep with her hand in the cup half way through. We just want to take it a day at a time. I will write more tonight and let you know how things go.
I am up and so thrilled about it
Hanging out with Uncle Rob
Wednesday, January 5, 2011
Sorry
Today was so much of a blur that I forgot to let everyone know how things were going. Thank you so much for your support and prayers, we are humbled by the "passion", I think some were yelling at me :-), of wanting new info when I didn't write a new update. Kylie is doing very well, the chest tubes are draining a fraction of what they were and the nurses are just letting her rest. They keep her sedated with a morphine/adavan drip and she stirs a little but is easily relaxed. The plan is to "sprint" her, decrease the settings on the vent and see if she picks up the slack, and if all goes well, extubate her tomorrow. They are confident that things will be good, because she already showed that she could handle this before the bleeding problem. They are also going to have to ween down on the sedation so she won't be too relaxed that she forgets to breathe, it sounds strange but it happens. So we think tommrow is going to be a bit more of an uncomfortable day for her. So it might be a longer day but tonight, I think, the Stowers family gets to relax alittle. Careful....we may get bored!!! Good night all.
P.S. See I can write a short update.
P.S. See I can write a short update.
Where we are at thus far
So we got a call at about 1:30am that Kylie was having more than normal blood flow out of her chest tube. It had been long enough out from surgery, that things should have begun to slow down. This to them signified that there was a bleeder in the chest around the heart. They were going to give her another couple of hours, to see if things would stable out. The last possible thing they wanted to do was to reopen her chest back up. They said that we didn't need to come back-up just yet and that they would keep us updated if things changed.
Unfortunately, as of 5:30, they hadn't, so they called us back and told us that they were going to reintubate her, that they had given her fluids to try and pump up her blood pressure, they were transfusing blood in as well and had been doing so all night. The only thing they had left to do was to open her inscion at the bed side and to find the bleeder and take care of it.
So we hustled over to the hospital, man was it cold. To find a reintubated, rather puffy princess. Her pressures were screwy because, not only was she bleeding extra into the tubes but she was bleeding around her heart as well. That blood was just sitting there, with no where to go, and it was starting to clot which was restriciting the beating of the heart and messing with her pressures. So we got to spend sometime with her before the surgeon kicked us out for about a hour and a half. They were able to open her, find the bleeder, tie it off, and cauterize some of the smaller leaks and everything looks good. We are going to add lasixs to the medications to help drain some of the extra fluid off, we can't extubate until she is down closer to "dry wieght" and we can't get out of the PCTU (pediatric care thoracic unit) until she is extubated. Depending on who we talk to that could be anywhere between 24-72 hrs, so we do what we do best, we wait. Though, it seems like, with the exception of this morning, it is going to be quiet today. Since Aubrey and I have gotten about 8 hrs of sleep over the last three days, I am not complaining. Thanks for the support.
Unfortunately, as of 5:30, they hadn't, so they called us back and told us that they were going to reintubate her, that they had given her fluids to try and pump up her blood pressure, they were transfusing blood in as well and had been doing so all night. The only thing they had left to do was to open her inscion at the bed side and to find the bleeder and take care of it.
So we hustled over to the hospital, man was it cold. To find a reintubated, rather puffy princess. Her pressures were screwy because, not only was she bleeding extra into the tubes but she was bleeding around her heart as well. That blood was just sitting there, with no where to go, and it was starting to clot which was restriciting the beating of the heart and messing with her pressures. So we got to spend sometime with her before the surgeon kicked us out for about a hour and a half. They were able to open her, find the bleeder, tie it off, and cauterize some of the smaller leaks and everything looks good. We are going to add lasixs to the medications to help drain some of the extra fluid off, we can't extubate until she is down closer to "dry wieght" and we can't get out of the PCTU (pediatric care thoracic unit) until she is extubated. Depending on who we talk to that could be anywhere between 24-72 hrs, so we do what we do best, we wait. Though, it seems like, with the exception of this morning, it is going to be quiet today. Since Aubrey and I have gotten about 8 hrs of sleep over the last three days, I am not complaining. Thanks for the support.
Tuesday, January 4, 2011
the other shoe?
I am writing to ask for prayers. We just got a call from the hospital at about 1:30am that the bleeding from the chest tubes is greater than they expect this late after surgery. They are trying to give her things to stop the bleeding but, if they can't and this continues or gets worse, they are going to have to take her back in for surgery to try and find where the bleeding is coming from. The next couple hrs they are going to be watching her very closely. Will let you know as I know.
What a day
This day was quite a day. It is hard to believe that this morning we left our room with Kylie and now we come back and we don't have her. It is like its two completely different days. I am just stunned with how today went.
We started this morning at about 5:00am, with the alarm going off and us just spending sometime with Kylie. She is such a good sport that early in the morning, it is almost sickening how happy she is :-). She was laughing, singing, playing, and talking completely oblivious to what was in store for her in just a few short hours Ignorance, today, was definitely bliss for her. Finally, the time came, we said a prayer with her, bundled her up, shored up our courage and trotted her off to the hospital, where we would hand over our most valuable item to the doctors and nurses and pray to God that we get her back, at least, in the same condition that we handed her over in. I would love to say that we had the stiff upper lip and that we were completely confident that everything would go well, but I was never good at lieing.
So we get in, and take her back into the pre-op area where we get to meet our surgeon, Dr. Ohye. Can I just say (well I guess I can because this is my blog and I can write what I want to :-D), the man looks more like a rock star than a surgeon. I mean he has the pony tail, the soul patch (yes he has a soul patch), and the rock star glasses. I guess, though, that when you can do what he does with a baby's heart he can look however he wants. But we met Dr. Ohye again and the other doctors and we started our jam session. Remember how I was scared about how Kylie would be when she left us, either screaming and crying, or totally oblivious. Well, God answered that prayer for me and that answer came in the form of Versed (SP?), not for me, though, for Kylie. Though if some were offered not too sure I would have turned it down. They gave her some to help make the transition a little easier and, boy, did it ever. She thought everything was funny the lights, the doctors, us, everything. So with the signing of the consent and the shaking of hands we give our now, very stoned, child to the capable doctors and headed up to be with the rest of our family and friends with the promise of us being updated regularly.
Our first update came at about 10:30am, three hours after we handed her over. They were doing the repair on the leaky valve and hadn't even touched the FONTAINE PROCEDURE yet, and I thought I was a procrastinator. No, what had happened is that it took them a hour to get set-up, all the I.V.'s in, and make sure Kylie was ready and the next two hrs were spent getting through the scar tissue of the previous surgeries. Can I just say WOW? Well, I just did. With a promise to have another update in an hour we were left to wait again.
At 11:30am came our nurse with another update....THEY WERE DONE! Well that was anti-climatic :-). Once they got in it was easy to tear down the old wall and put in the new one. They also left a tiny hole, called a FENESTRATION, as kind of a pressure relief valve, when the time is right, a couple of years from now we will go in and close that off, throuh a heart cath. But the nurses and surgeon asked that we give them an hour to get Kylie settled and, then, we could see her. It was really kind of weird to have all this pent up anxiety and then have nothing to do with it. Just don't make any sort of comment that resembles "That's it" or you could get a slap upside the head, trust me I have the headache to prove it.
It was such breath of fresh air to see Kylie again. She was intubated, of course. She has an I.V. pole, a catheter, three chest tubes and a heavily bandage chest but my little girl was safe and back in my sight. They had plans to extubate her, either today or tomorrow and were talking about sending her to the general floor in a couple of days, which is awesome. The only problem we had was that we couldn't stay with her for too long because our voices would excite her and she would fight against the vent. So we had to leave, so we got some lunch, visited with family and grabbed dinner as well, there is a lot of eating while you are up here. After dinner we decided to head up to see Kylie before calling it a night. What we didn't know was that we were in for quite a surprise.
We got up to her bed to find out that she had been extubated. Not only was she extubated, but if they hadn't extubated her she would have done it herself. She had been fighting against and playing with the tube so much, that they just decided to take it out :-), that's my girl (if you don't do it I am going to do it myself.) She is now on a nasal cannula and seems to be doing great. The only real issues seems to be pain management, they want to keep her comfortable but not so sedated that she has trouble breathing and the bleeding in the chest tubes. The amount of drainage coming from the tubes don't really concern them, it's more the fact it is still mainly blood coming out of the tubes, which is increased more as she gets upset. They have given her one blood transfusion and clotting factors to help with clotting. So now we just have to wait and see. We can go to general floor with the chest tubes in, and with our history of kylis (sp) drainage, see first surgery, they are in no hurry to pull those tubes. In fact we will probably go home the day after the tubes are pulled.
So we wait and let her heal. The doctors are talking about a week and a half to two weeks, providing we don't have the drainage. If we have the extra drainage it could be as long as a month. So we leave it in God's hands, or at least we have the best intentions to do so. Thank God that He is such a patient God. Thank you for prayers and all your support. Good night.
We will add pictures in the A.M.
We started this morning at about 5:00am, with the alarm going off and us just spending sometime with Kylie. She is such a good sport that early in the morning, it is almost sickening how happy she is :-). She was laughing, singing, playing, and talking completely oblivious to what was in store for her in just a few short hours Ignorance, today, was definitely bliss for her. Finally, the time came, we said a prayer with her, bundled her up, shored up our courage and trotted her off to the hospital, where we would hand over our most valuable item to the doctors and nurses and pray to God that we get her back, at least, in the same condition that we handed her over in. I would love to say that we had the stiff upper lip and that we were completely confident that everything would go well, but I was never good at lieing.
So we get in, and take her back into the pre-op area where we get to meet our surgeon, Dr. Ohye. Can I just say (well I guess I can because this is my blog and I can write what I want to :-D), the man looks more like a rock star than a surgeon. I mean he has the pony tail, the soul patch (yes he has a soul patch), and the rock star glasses. I guess, though, that when you can do what he does with a baby's heart he can look however he wants. But we met Dr. Ohye again and the other doctors and we started our jam session. Remember how I was scared about how Kylie would be when she left us, either screaming and crying, or totally oblivious. Well, God answered that prayer for me and that answer came in the form of Versed (SP?), not for me, though, for Kylie. Though if some were offered not too sure I would have turned it down. They gave her some to help make the transition a little easier and, boy, did it ever. She thought everything was funny the lights, the doctors, us, everything. So with the signing of the consent and the shaking of hands we give our now, very stoned, child to the capable doctors and headed up to be with the rest of our family and friends with the promise of us being updated regularly.
Our first update came at about 10:30am, three hours after we handed her over. They were doing the repair on the leaky valve and hadn't even touched the FONTAINE PROCEDURE yet, and I thought I was a procrastinator. No, what had happened is that it took them a hour to get set-up, all the I.V.'s in, and make sure Kylie was ready and the next two hrs were spent getting through the scar tissue of the previous surgeries. Can I just say WOW? Well, I just did. With a promise to have another update in an hour we were left to wait again.
At 11:30am came our nurse with another update....THEY WERE DONE! Well that was anti-climatic :-). Once they got in it was easy to tear down the old wall and put in the new one. They also left a tiny hole, called a FENESTRATION, as kind of a pressure relief valve, when the time is right, a couple of years from now we will go in and close that off, throuh a heart cath. But the nurses and surgeon asked that we give them an hour to get Kylie settled and, then, we could see her. It was really kind of weird to have all this pent up anxiety and then have nothing to do with it. Just don't make any sort of comment that resembles "That's it" or you could get a slap upside the head, trust me I have the headache to prove it.
It was such breath of fresh air to see Kylie again. She was intubated, of course. She has an I.V. pole, a catheter, three chest tubes and a heavily bandage chest but my little girl was safe and back in my sight. They had plans to extubate her, either today or tomorrow and were talking about sending her to the general floor in a couple of days, which is awesome. The only problem we had was that we couldn't stay with her for too long because our voices would excite her and she would fight against the vent. So we had to leave, so we got some lunch, visited with family and grabbed dinner as well, there is a lot of eating while you are up here. After dinner we decided to head up to see Kylie before calling it a night. What we didn't know was that we were in for quite a surprise.
We got up to her bed to find out that she had been extubated. Not only was she extubated, but if they hadn't extubated her she would have done it herself. She had been fighting against and playing with the tube so much, that they just decided to take it out :-), that's my girl (if you don't do it I am going to do it myself.) She is now on a nasal cannula and seems to be doing great. The only real issues seems to be pain management, they want to keep her comfortable but not so sedated that she has trouble breathing and the bleeding in the chest tubes. The amount of drainage coming from the tubes don't really concern them, it's more the fact it is still mainly blood coming out of the tubes, which is increased more as she gets upset. They have given her one blood transfusion and clotting factors to help with clotting. So now we just have to wait and see. We can go to general floor with the chest tubes in, and with our history of kylis (sp) drainage, see first surgery, they are in no hurry to pull those tubes. In fact we will probably go home the day after the tubes are pulled.
So we wait and let her heal. The doctors are talking about a week and a half to two weeks, providing we don't have the drainage. If we have the extra drainage it could be as long as a month. So we leave it in God's hands, or at least we have the best intentions to do so. Thank God that He is such a patient God. Thank you for prayers and all your support. Good night.
We will add pictures in the A.M.
DONE
They are done! We are good! They are closing her up and bringing her up to the POD. We should be able to see her within the hour.
New Update
So we got a new update. It took them three hours to get through the scar tissue of the first two surgeries and they are now repairing the leaky valve as best they can. Next is on to the heart. We should hear back in a little bit on how things are going. I will let you know as soon as I know.
Where we have been
Hey all I know that alot of you have seen this already but I figured that this would be one of the best ways to show new people where we have come from. This is a video of Kylie's first year of life and the miracle of her.
Untitled from Ron Stowers on Vimeo.
Surgery #3
So here we sit. They took her into surgery at about 7:30am. We should hear something at about 10:30. The surgeon is thinking that the whole thing will take about 6hrs and he isn't terribly worried. They are going to fix the heart, repair the leaky valve and try to even out her sternum, it has taken a bit of a weird peak to it. So far now no news is good news. I will let you know as soon as we hear anything.
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