Today was a great day in the sense that it cleared up a lot of our questions. We spoke in the hall with the nurse practitioner and one of Kayleigh's neonatologist's. The ironic thing is, the doctor that is in the rotation is the same one who was in the delivery room when Kayleigh was born. She may be the same doctor who is able to send Kayleigh out of this hospital.
The first topic of conversation was her stomach issues. They are still running tests to determine if this is an infection of some sort that is causing her tummy to blow up again. The good news is Kayleigh is passing things through and the repogle tube is bringing air out of the stomach. The x-ray shows improvement, but they are not going to start her feeds back until she is cleared from any infections. They are leaning towards another urinary tract infection, but we won't jump to conclusions until the tests come back.
They won't do any surgery until this tummy issue is cleared up. The gastroenterologist are determining whether to do a G-tube or PEG. They are basically the same thing and serve the same purpose, but the PEG is less invasive when it comes to the procedure. The PEG is typically used when the Nissen procedure is not being done and it is surgically placed from the inside out instead of performing a larger incision with the G-tube. I have a feeling we are going to be doing the PEG, which we are 100% comfortable with.
So that lead us to the most important question of when will Kayleigh be able to go home. We were given a month about a week and a half ago, but since we have been put off for a week with all these reflux tests (Impedance, Barium Swallow and one other test), we still have a month left. If things going smoothly, it could be as little as three weeks. That is if nothing else comes up in between and pushes anything back. So the one month clock starts now, again!
So speaking of set backs, we all had a scare that turned out to be nothing at all. Kayleigh was in her bouncy seat today and when one of our primary nurse turned to look at her, she noticed some bright red blood in her trach tube. Kayleigh wasn't in pain, crying or showing any signs of respiratory issues, so it didn't worry anyone that Kayleigh's lungs were bleeding. She must have scratched something in her throat with the trach and it was sucked up through the tube. They are going to keep an eye on things in case this happens again, but until it shows signs of respiratory problems, they are not concerned.
So please continue to pray that things move in the right direction so Kayleigh can get out of there. I feel like the longer she stays, the more things pop up and start causing panic and stress amongst everyone. We do need her healthy, but being at home will reduce the amount of chance for infections or any other complications. We have heard a lot of stories on how children make a huge improvement once they get home, so we are praying that will be the case.
Thank you to all of those who have been a part of the Donation Giveaway. Aimee and I are truly blessed by everyone's generosity. Aubrey and Katie have done a wonderful job at putting the program together and we can't say enough wonderful things about them. Thank you so much to all the businesses who donated their items to help our family with this program too. The items are so awesome and we wish you all the very best. There is one week left and we are all excited to see who wins some of these amazing packages. Thank you all tons!!!
God Bless,
36 comments:
Thanks for keeping us up to date Adam. Looks like our families are going through much of the same this week. Thanks for asking your folks to pray for Abby, and we'll be reminding our friends to check in on Kayleigh tomorrow.
Love to Aimee and the kids,
Brent (Abby's Dad)
www.riggsfamilyblog.com
I do agree with you the sooner Kayleigh gets home the less chance of infections and other complications. It's been so long and I will be praying that your little girl will soon be home with you.
I know a lot of people will have a PEG put in during surgery and then a few weeks later will have it switched out for a g-button (I think this is what you're referring to as a g-tube) after the incision has healed. Is this a possibility for Kayleigh?
Thinking of your sweet.precious.amazing. litle girl. Grow Kayleigh..grow. By the way...you are getting so big princess....hugs & kisses.
Believing GOD's hands are in this healing process.
Hope sweet Kayleigh gets to go home soon!
Remember to ask the home nurses how many hours they will be giving you per week and if you have to provide them with lunch or other meals or a bedroom for them to be able to take naps. Ask if they will be doing Kay's laundry too and bathing her. Will you and Aimmee do any of her care or just let the nurses do it all??
adam as i have told my husband has to have a trach inserted a few yrs ago to save his life and sometimes he has had blood in his trach cause by just nothing but the trach rubbing a weird way. it upset me the first time but the dr cleaned the trach site and looked and told me it was fine so im sure its the same for kayleigh. we are still praying she is home soon
Let's hope this is the "final countdown" for Kayleigh's trip home! It would be great for you to all move in to your new home together. It would be like starting your life over together as a family. A positive new start...
Still praying!
Praying for a quick countdown and no hurdles so Kayleigh can get home very soon!!!!
We will keep praying for Kayleigh! Glad to hear things are going better. Keep the faith! She looks so adorable in her pics.
Praying in New Braunfels, TX
Freeman's:
What a blessing this brings to me this morning as I read the update. For the past two nights I have been waking up with Kayleigh on my heart and mind and I just lay there and say a pray for her. I know God has put her and your family on my heart very heavily to pray and help in any way that my family can. She is just such an inspiration to me and to my family. I am loving to see my husband ask about her and always on top of me to make sure that we donated to you. I can see how God has used this little miracle and continues to use Miss Kayleigh to touch our family and I know she is touching everyone that follows her story as well. I challenge everyone in this last week of the donation/giveaway to give give give as much as we can and never stop praying for Kayleigh and her family. Thanks again for opening up your life with us and doing what the Lord has asked of you. I am looking foward to more wonderful updates soon.
I hope she gets to go home fast. I'm thinking about you all.
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.
Praying for you always,
Hope
Praying she can come home soon!
Thanks for the updates Adam! Kayleigh is so beautiful!
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!
Thanks Jenna,
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 ;)
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
Adam
Kayleigh looks GREAT!!! Hoping she comes home soon!!!
Kayleigh looks gorgeous in these pictures! What a blessing. Continuing to pray.
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.
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.
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!
Erika
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.
Love yall,
Nikki Conway
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!
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.
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.
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.
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.
Good luck to you guys! I know you will be beyond thrilled to get to take her home. You're in our prayers.
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.
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?
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.
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!
What beautiful long fingers, Kayleigh!
Kayleigh looks soooo beautiful :0)we will continue to pray for her!
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!
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...
My Prayers are with you.
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.
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
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!!!!!!!
Kayleigh is getting so big and cuter by the day. Love reading about her and her family.
Bless your daughter and your family. Your daughter will come home. She is an inspiration to us all. I will be praying for Kayleigh
Praying for Kayleigh and the countdown in Kentucky!
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.
We have an absolute AMAZING God and He has given you an absolute adorable daughter. Hang in there.
God allows things to happen for purposes often beyond our comprehension. He loves you beyond your imagination as He does Kayleigh.
Gosh, she is so amazingly beautiful!
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
Love- Maura
Still crying guys,
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.
Michael James
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!
Michelle
Post a Comment