Getting back to life

It is so nice to be home. It took us about two weeks to get everything unpacked, put away and back on to a routine again but things are looking good. We are picking back up with therapies again, had a few doctors appointments, and we are now enjoying life with a two year old. Boy, is she is ever a two year old :-). She definitely, has a set way of wanting to do things, and if they aren't done how she feels they should be done she lets us know about, I remember when I use to look forward to hearing her cry, while she was on vent :-).....just kidding I still love to hear her voice, and who doesn't enjoy a good bleeding eardrum every so often ( again just kidding :-)). It is like someone threw a switch and turned her on. She runs, talks all the time, and she loves to explore and laugh. It was, hilarious, last week she saw a couple older kids playing jump rope and she was mesmerized, you could just see the gears turning in her head...now how do I do that?
We got a chance to see her cardiologist last week and his news was about half and half. Half great news, half not so much. She is doing great, the heart function is good and they got rid of most of the leakiness in her valves. The not good thing is that we have somethings that we need to be prepared for, granted these are not imment concerns, but they are concerns. One is that we are going to have to watch for the behavior issues. It is very common for the CHD kids to have a lot of behavior issues around 4 or 5, I know it can be common for ALL kids to have issues around that age but our doctor is telling us to be prepared. Things like ADD and ADHD. are very prevelant, as well as acting out and aggression ( great I worried about her being a push-over, now I got worry about her being the bully). We are looking into medical and non-medical interventions and I am, fairly, confident that Aubrey and I can handle what is to come with behaviors. The second issue is her rythm, she ain't really got one. Well, she does have one and it is SICK DUDE....WHOA MAN ( sorry imagine myself as a surfer for a second). Alright back to reality, they did an EKG on her heart and saw that she was in a JUNCTIONAL rythm. The heart is supposed to work as a well oiled machine, and the top part of the heart is supposed to pump in conjunction with the bottom of the heart. Kylie does things a little different (come on...anyone suprised at this point), she has what is calle SICK SYNUS RYTHM, the heart doesn't want to pump as it should. If her body were AMERICAN IDOL her heart would have been William Hung, just doing his own thing. Well, it isn't a big problem yet, but will become one latter on. They hooked Kylie up to what is a called a HALTER MONITOR, basically a 24 hr, portable EKG machine to see how bad it all is. Depending on the read out on that will start to tell us how long before our next move is, pace maker. It is not so much a question of if Kylie will get one but WHEN. The rough estimate is 10 years from now, so we have time. A few issues with a pace maker is that it is going to need continuous maintence, recharging, and we got to put the sucker in. In a normal heart anatomy, they could go in through the neck and put it into the heart, a minimally invasive procedure. Kylie has many things, but a normal heart anatomy is not one of them, so it is going to be another open surgery, and if I am not mistaken, all the other things that have to be done to the pacemaker will be surgeries as well. Remeber when I said it was wierd not having to plan for another surgery, should have kept that to myself :-). Also, we have the risk of heart failure and heart transplant, latter on in life. When you are in this you are in it for the rest of your life.
I am looking over what I just wrote, man I needed a grammar teacher, and it seemed liked it was complaning. Maybe, in a way I am, who wants to see their child go through this. But, I know that God has given me a special angel, one that has touched and inspired more people than I will ever know. One that is stronger than I will ever be and still manages to smile. I will praise God for that ever day for the rest of my life and I will do what ever needs to be done to make sure that my daughter is healthy and strong and I will do it GLADLY. My daughter is a gift from God, and other than her pain, there isn't a thing I would change about her.
So what's up in the near future you may ask. Well, we have a couple of appointments next week at U 0f M. One is to see if her urinary reflux has cleared up and to see if she can come off the Bactrum, antibotic to avoid UTI's. I hope so because she has been getting yeast infection bcasue of the antibotice, so I am looking forward to that going away. Also we will have her speech therapy and her Early intervention therpay. We are looking forward to seeing her teachers again.
Thanks for your prayers and support. Please be praying for the Hammit family, they are coming up on their second surgery, the beginning of next month, Bowen looks fantastic, I have only seen pictures latetly, not the real baby, though I wait egarly ( hint Sarah...hint hint :-D). Also please pray for my cousin Ibrahim, he is having some liver issues and it looks like he will be in need of a transplant. And always please be praying for all the CHD kids and their families. We have seen what your prayers can do.

Hey where is the popcorn

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

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.

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

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.

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.

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.

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......