tag:blogger.com,1999:blog-3511754798290820361.post8044138047264872185..comments2023-11-29T03:53:03.441-05:00Comments on Kayleigh's Story: 3/17/09 - Clock Starts Now (Again)Adamhttp://www.blogger.com/profile/11866335057753880067noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-3511754798290820361.post-86477764055711176292009-03-20T17:25:00.000-04:002009-03-20T17:25:00.000-04:00I am so happy for you and there is now a light at ...I am so happy for you and there is now a light at the end of your NICU tunnel! The tunnel starts out so black and it is a great feeling to see the end of that tunnel! It is hard, I remember our NICU days being told Theresa will be able to go and then she won't! Then things pop up and we were looking at serious liver problem, maybe a liver transplant, but thank God she did not have Biliary atresia and only had Choleastasis of the liver. It is the sweetest thing to bring you precious little baby home after such a long time in the NICU! and I know you know this but no matter what you can never be too over protective of that liitle Preemie! I kept a strict door of who could come into our home and who couldn't and still my tiny baby got pneumonia after being home for just 6 weeks and had to be life flighted to children's and spend 2 weeks on a vent. Never feel like you are being over protective, because you are not! Some people don't understand that just because they are home from the NICU they are still very fragile! I got tons of crap and comments from friends saying I was secluding our daughter but they didn't understand, she was my preemie and I had to protect her! Best of luck to you all and God bless!<BR/> MichelleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-79873148879925825952009-03-20T09:20:00.000-04:002009-03-20T09:20:00.000-04:00Still crying guys, but I am moved by how many peop...Still crying guys, <BR/><BR/>but I am moved by how many people have come to your aid with prayers and support. There IS good in all people... :-) Be blessed.<BR/><BR/>Michael JamesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-85599057911075155112009-03-19T15:48:00.000-04:002009-03-19T15:48:00.000-04:00I am praying for your family! A quick question, wh...I am praying for your family! A quick question, when will Kaylee get the trach tube out? You don't have to answer, I was just wondering<BR/>Love- MauraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-1984001295902290472009-03-18T10:27:00.000-04:002009-03-18T10:27:00.000-04:00We have an absolute AMAZING God and He has given y...We have an absolute AMAZING God and He has given you an absolute adorable daughter. Hang in there.<BR/>God allows things to happen for purposes often beyond our comprehension. He loves you beyond your imagination as He does Kayleigh. <BR/>Gosh, she is so amazingly beautiful!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-53042945148158323382009-03-18T00:40:00.000-04:002009-03-18T00:40:00.000-04:00To the poster above me..Unfortunately they cannot ...To the poster above me..Unfortunately they cannot qualify for Home Makeover. They only rebuild houses for you on the land you already own. They do not purchase land for you. And if the Freemans are going to lose their house in foreclosure, that show wouldnt work out for them.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-5379794810252490742009-03-17T23:42:00.000-04:002009-03-17T23:42:00.000-04:00Praying for Kayleigh and the countdown in Kentucky...Praying for Kayleigh and the countdown in Kentucky!Amber Schmidthttps://www.blogger.com/profile/14255596603226871737noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-20531160102163437692009-03-17T22:56:00.000-04:002009-03-17T22:56:00.000-04:00Bless your daughter and your family. Your daughter...Bless your daughter and your family. Your daughter will come home. She is an inspiration to us all. I will be praying for KayleighSharlenehttps://www.blogger.com/profile/08539955929237988325noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-34141008589020694882009-03-17T22:11:00.000-04:002009-03-17T22:11:00.000-04:00I am a nurse and have done home care for infants. ...I am a nurse and have done home care for infants. I worked 8-12 hour shifts. I was allowed to use the families microwave to fix meals and could have even used the stove if I wanted. <BR/><BR/>I also have another for you Adam. With all the problems with the house going into foreclosure and posing a problem for when Kaleigh comes home, have you thought about submitting a video to Extreme Makeover, Home Edition? They are always building new houses for families with children that have special needs like Kayleigh. Check out ABC.com <BR/><BR/>Our God is so awesome!!!!! This last week was a great one for testimony. A friend of a friend, Doug, who lives in Wichita, KS has some major heart problems and is on the transplant list. This man is 34 years old with a wife and daughter. His heart is in such bad shape that they put an internal defibrillator (to shock his heart if it stops) last year. Last week, the defirillator malfnctioned and shocked him 26 times landing him in the hospital until the ONE and ONLY doctor who will touch him, got back in town. On Sunday night, his wife got a call saying she needed to get to the hospital because her husband was coding (no heart beat or respirations, staff doing CPR) and it didn't look good at all. When the wife got to the hospital, the NUN met her at the elevator and told her that the liklihood of her husband surviving was about zero percent. After an hour of CPR, the code team got a heartbeat. He was put on a ventilator and external pacemaker until a neurologist could come pronounce him brain dead and the machines could be stopped. The next morning, Doug opened his eyes. His wife called my friend and told her things were still not looking so good and that if they wanted to say goodbye, now was the time. When my friend got to the hospital, Doug grabbed her hand and pointed up shaking his head. He was given a whiteboard and scribbled "it wasn't my time" and smiled. The next morning, Doug called my friend and was chatting it up with like nothing had ever happened. Anyone who is in the medical field knows that when someone is "dead" for an hour, they are not going to be the smae if they ever wake up. Doug went home Sunday and has been doing great. He is pretty sore from the CPR and likely has a few broken ribs, but is no different than he was prior to the code. GOD IS AWESOME!!!!!!! <BR/><BR/>Kayleigh is getting so big and cuter by the day. Love reading about her and her family.Amyhttps://www.blogger.com/profile/06212979858680618266noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-16028043316138867192009-03-17T22:09:00.000-04:002009-03-17T22:09:00.000-04:00My Prayers are with you.My Prayers are with you.Happy Hermit (happilyhiddenhermit@gmail.com)https://www.blogger.com/profile/02519948709090732780noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-79597980794082947142009-03-17T21:54:00.000-04:002009-03-17T21:54:00.000-04:00We have nursing care 40 hours per week, and our nu...We have nursing care 40 hours per week, and our nurse is a complete and total Godsend. We were not able to interview her, however, our social worker who set up the nursing was adamant with the home health agency that we were very picky and would require a high quality nurse, otherwise they would have a revolving door of nurses coming into and out of our home. (Our old nurses and social worker predicted we would go through 4-5 nurses before we found one we liked...) I think if expectations are set high in the beginning, the home health agency and nurses are more likely to take you seriously. At any rate, we have an excellent nurse who did not have experience with preemies or PH, however she has educated herself and knows our son about as well as we do, and she has a personal vested interest in his growth and development as she's in love with him now, too.She's also officially a part of the family after less than 4 months and is not "in the way" at all, even in our tiny little house. So, I guess what I'm trying to say is to set the bar high, train your nurses on Kayleigh's and your routine, and continue praying for a good fit. We wish you the best of luck...Only the Sheppardshttps://www.blogger.com/profile/12746320655851190325noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-57321572120167198432009-03-17T20:58:00.000-04:002009-03-17T20:58:00.000-04:00Definitely make sure the nurses dont smoke around ...Definitely make sure the nurses dont smoke around Kayleigh. You must have some awesome insurance since they are covering 24 hours of care in your home. Our insurance only would pay for 8 hours a day~! They said there was no reason why we (her parents) couldnt care for her during the other hours. And, if we wanted more care, we had to pay out of pocket for those extra hours!! So yes, count yourselves very lucky indeed! you can thengo out to dinner and do fun things with your other kids, without having to worry about having to be stuck home with Kayleigh all the time, or having to transport her out with you with all her equipment. You are so blessed. Hope you realize it! Would love to see your video on how you changed the trach! and good luck with the PEG surgery! hope all goes well!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-25734761008700371582009-03-17T20:02:00.000-04:002009-03-17T20:02:00.000-04:00Kayleigh looks soooo beautiful :0)we will continue...Kayleigh looks soooo beautiful :0)we will continue to pray for her!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-57111398209363850022009-03-17T19:07:00.000-04:002009-03-17T19:07:00.000-04:00What beautiful long fingers, Kayleigh!What beautiful long fingers, Kayleigh!Lizhttps://www.blogger.com/profile/01059787554456498645noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-82717817758820314362009-03-17T14:57:00.000-04:002009-03-17T14:57:00.000-04:00That is great to hear! Hopefully things go smooth...That is great to hear! Hopefully things go smoothly so that Kayleigh can get home where she belongs! I'm traveling the same road right now - my little girl has been in the NICU since birth, and it will be three months this Sunday. As far as nursing services go, ensure that they have pediatric experience. You can have as many nurses as you want come to the house until you are comfortable with someone. Good luck!SullyMamahttps://www.blogger.com/profile/00949651010411335016noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-14362842166418303722009-03-17T13:50:00.000-04:002009-03-17T13:50:00.000-04:00It really is 2 steps forward 1 step back in the wo...It really is 2 steps forward 1 step back in the world of the NICU. I remember those days. Yes kids typically do alot better once they get home. All the love just surrounds them and they seem to blossom. It's not without it's bumps in the road, but the bumps aren't nearly as big. <BR/><BR/>I didn't see a way to contact you privately on here, but this site is loading really slow for me! I mean taking up to 3 minutes to load the words and pictures, the music typically doesn't start until after I've read your post. Is there a way to de-clutter so those of us without the fastest cable modems can see it without having to wait? <BR/><BR/>Kayleigh is still in everyone's prayers. She is prayed for every Sunday at church and every Wed. at youth by the hundreds here in Ohio.Stephhttps://www.blogger.com/profile/11647882294654931155noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-85138335687712722162009-03-17T12:12:00.000-04:002009-03-17T12:12:00.000-04:00Just wanted to give you my own tips about home hea...Just wanted to give you my own tips about home health nursing care. We've had nurses in the house since my daughter came home from the hospital in Oct 2006. Unfortunately as you will soon find out, even though you're supposed to have nursing care 24/7 it usually doesn't happen as there's always staffing issues that come up. Just be prepared, know how to take care of her yourself and for the times you have help from nurses, enjoy the break. <BR/><BR/>The nurses are there to help you! You are the ones in charge still. They need to be the ones making sure they're not getting in your way, not the other way around. You are allowed to do anything and everything for Kayleigh if you so choose. <BR/><BR/>Make sure the nurses get along well with your family as a whole. I never was allowed to interview nurses prior to having them in our home and I don't know how I would even do that. So much of what I want in a nurse I need to see first hand. I have two small children in addition to my SN child and it's always difficult finding nurses that can handle having other children around who want to interact with the child they're supposed to be caring for. <BR/><BR/>Be sure that you lay out very clearly how you want them to do things like trach changes, feeding tube routine, etc. A lot of our nurses have come into our home with their set way of doing things that is contrary to how we do things here at home. I try and have a sheet typed up explaining exactly how we do things, what activities my daughter likes, what her responsibilities are (she's 3yrs old now so we have small chores) etc. <BR/><BR/>Good luck to you guys! I know you will be beyond thrilled to get to take her home. You're in our prayers.Emilyhttps://www.blogger.com/profile/08146225265988304423noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-27264958122733948332009-03-17T11:21:00.000-04:002009-03-17T11:21:00.000-04:00Oh I have goosebumps just thinking about you being...Oh I have goosebumps just thinking about you being able to bring Kayleigh home! halelujah!!! I am glad the trach blood turned out to be nothing . and I hope this PEG procedure goes smooth!The Pyrat Familyhttps://www.blogger.com/profile/16064013837877908099noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-59187310942347336672009-03-17T11:18:00.001-04:002009-03-17T11:18:00.001-04:00I was looking at the top photo of Kayleigh and I s...I was looking at the top photo of Kayleigh and I saw Aimee all over her, so I have to say Adam I think she looks like Aimee. I'm praying for Kayleigh. I hope things are looking up in you all life. Take care. <BR/>Love yall, <BR/>Nikki ConwayAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-91848511771045326042009-03-17T10:44:00.000-04:002009-03-17T10:44:00.000-04:00I would want to MAKE sure your home health nurses ...I would want to MAKE sure your home health nurses not only have pediatric home health experience (you'd be surprised.....)and also experience with a vent and PEG/G-tube etc. It would also be great if that had experience with a baby with Pulmonary hypertension. It would be great if you could find an ex-PICU/NICU RN to do your homehealth (like me...too bad I live in IL!!!! I would be honored to take care of a baby like Kayleigh!). Anyway, good luck. Ask a lot of questions and if something doesn't seem right with your home health RNs, follow your instincts!!!! Make sure they do not smoke. Sorry, but something like smoking (even just on their clothes) could be deadly for Kayleigh. <BR/><BR/>Yes, so many kids do amazing once they get out of the hospital environment!!! They grow better and develop better and their health issues seem to get better. Not to mention not as high of risk for nosocomial infections etc. <BR/><BR/>I wish you all the best! I know Kayleigh is going to do so awesome at home and it will be so much fun to follow her progress once she blows that pop stand (the hospital!)I know you guys will be amazing at taking her of her at home! Good luck and thinking of you!<BR/>Erikaerikahttps://www.blogger.com/profile/01233460306102041004noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-15304163169050604902009-03-17T10:19:00.000-04:002009-03-17T10:19:00.000-04:00Kayleigh looks gorgeous in these pictures! What a ...Kayleigh looks gorgeous in these pictures! What a blessing. Continuing to pray.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-19486313989850161042009-03-17T10:12:00.000-04:002009-03-17T10:12:00.000-04:00Kayleigh looks GREAT!!! Hoping she comes home soon...Kayleigh looks GREAT!!! Hoping she comes home soon!!!Kirsten:https://www.blogger.com/profile/17083250418744518224noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-5416285736679639772009-03-17T09:55:00.000-04:002009-03-17T09:55:00.000-04:00Thanks Jenna, We will have 24 hour care for a few ...Thanks Jenna, <BR/><BR/>We will have 24 hour care for a few months and then they will cut it back to 18. Aimee and I will have to help out and do her cares, wash clothes and give baths. We want to do everything we possibly can do without getting in the nurses way ;) <BR/><BR/>That is a good question about food, but they won't need a bed as they will work in normal shifts as if they are at the hospital. If the nurse is sleeping, that is bad new. lol <BR/><BR/>AdamAdamhttps://www.blogger.com/profile/11866335057753880067noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-46297858909187979912009-03-17T09:51:00.000-04:002009-03-17T09:51:00.000-04:00Thanks for the updates Adam! Kayleigh is so beaut...Thanks for the updates Adam! Kayleigh is so beautiful!<BR/>Our son had a PEG put in and it helped so much with feeding and when he was having bloating issues as well...we could just release the air thru the button. It was a huge answer to our prayers! Praying this will be the best for Kayleigh as well! Continuing to pray! God Bless!~Michelle~https://www.blogger.com/profile/12770287714235004748noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-47183030790870470702009-03-17T09:21:00.000-04:002009-03-17T09:21:00.000-04:00Praying she can come home soon!Praying she can come home soon!Alishahttps://www.blogger.com/profile/00774816386867888752noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-57583058768909506842009-03-17T09:15:00.000-04:002009-03-17T09:15:00.000-04:00I hope she gets to go home fast. I'm thinking abo...I hope she gets to go home fast. I'm thinking about you all. <BR/><BR/>Our problems are a bit different, as my baby does have laryngo/tracheomalacia, she hasn't had feeding issues until recently. So, we are just now starting all those tests. Luckily, Ava is home. <BR/><BR/>Praying for you always,<BR/>HopeHopehttps://www.blogger.com/profile/08185169858979564182noreply@blogger.com