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It has been confirmed that next week, Kayleigh will be getting a trach. The doctors do not feel at this time the Nissen/G-tube or JG-tube will be needed. She will continue to have the OG-tube, which is the one in her nose, to feed her. Their plans are to let Kayleigh recover from the trach procedure, feed her from he OG-tube for a little while and then try to bottle feed her. The ENT doctor does not feel that reflux is a major issue for Kayleigh after looking at her airways with the bronchoscopy that was performed last week. Normally there will be irritation or damage to the airways caused by the acids aspirated from Kayleigh's stomach, but that was not the case. Although, if there are signs of reflux or if Kayleigh has troubles taking a bottle, they will then decide to perform one of the procedures to help with the problem (i.e. Nissen/G-tube or JG-tube). So, that leads me to say...If Kayleigh flies through all of this like a champ, she will be that much closer to coming home. Thi...

We are still waiting to hear back the final verdict as to whether Kayleigh is going to need a trach, but all the votes are point in to the direction of "yes" and we are all prepared if that is the case. After learning more about the trach and reading up on all the great information you all have sent us, it comforts me in knowing that this is the very best thing for her. She will not only be able to breath better, but she will be able to focus on other aspects that go along with early childhood development. We are more than happy to say that the trach will speed up her process of coming home because she would not be able to come home with the ET-tube down her throat. Yes, she still needs to tackle the reflux issue, but they may do either the g-tube/nissen or the jg-tube at the same time as the trach. After that, the doctors need to decide whether or not they want to send her home on the Flolan for her pulmonary hypertension or try and wean her off of it. There is not much else...

Is this not the face of Kayleigh saying "But Daddy Pleeeeaaasse?" "I still see you Daddy" ".......................................................................................... " I think I spent too much time trying to come up with something on that last one, but I failed each time. I need your help! What would your quote say? Update: Kayleigh is doing great. She is on low vent settings and it just having a good ole time over the past few days. We have not had any episodes, major desats or bad spells. She may get a little grumpy when she poops in her pants, but don't we all! ( I mean, they all!) Kayleigh's doctors are going to meet on Monday to discuss whether or not they feel she needs to get a tracheotomy. Both bronchial tubes are collapsing, but nothing exterior is causing them to collapse. Plus, the amount of pressure being used to keep them open is next to none, so no one can really explain what is wrong. The best guess is that her bronch...

I have a surprise coming soon for everyone. I am not sure when it is coming, so you will have to keep checking back often to find out what it is. I bet you want to know, but I just can't spoil it. Sorry :( Don't you just hate that feeling inside your stomach when someone knows something secretive that you don't. I just love surprises. (hee-hee) I am cruel, aren't I? Don't go to far, you might miss it! (Disclaimer - It is not about Kayleigh's prognosis, so I don't want to upset anyone.) God Bless EVERYONE, Adam :)

I must say that I have never been so happy in my life to hear a world renown doctor made a small mistake. After the bronchoscopy procedure, we were told that Kayleigh was too small for a trach and she certainly could not be placed on an ET vent tube for a long time. One, the tube would cause scarring and more issues. Two, when she grows up, she is going to pull it out all the time. And three, she can never go home on it as we are not trained to put it back in and there will be no x-ray at our house to make sure it is in the right place. Anyhow, this wrongful mistake was because the doctor thought Kayleigh was on high pressure settings, which in fact she is on very low settings. This means she could be on a normal trach as there will not be much pressure to open up those bronchial tubes. The trach could be placed in and adjusted as Kayleigh grows older and she could grow out of this bronchiamalacia that she is having in both the right and left bronchial tubes. After our doctor took a da...

Thank you all for being patient with me while I updated my Twitter while being at the hospital, trying to not break down with all the crazy news. I went in to this procedure with full confidence that Kayleigh would not need a trach and that she would probably just come off the vent with no troubles during the procedure. Well, it didn't happen nearly the way I wanted it to. In fact, it was worse. I am going to try to explain it as best as I can from what I know so far. As you enter the esophagus, there were two swollen bubble like processes that are called "tongues." Once the vent tube was removed, these tongues would swell up until it closed the full opening of her airway. They called this Malacia, which with a trach, medication and time, it would fix itself. Unfortunately, this was the first and smallest issue the doctor came across. After proceeding down the throat, he came to where the airways divides and leads to the right and left lung down an airway called the bronc...

I just wanted to write a quick post tonight to ask a question to everyone. Given our limited funds through these tough times, we are very interested in finding someone who would spice up our blog at a very inexpensive cost. Does anyone know anyone who can help me???? We are so ready to have blog makeover :) God Bless, The Freemans :)

I must say, sitting in a room with a neonatologist, cardiologist, gastroenterologist, pulmonologist, all of their nurse practitioners, a social worker, discharge nurse, and our primary nurse with all eyes on us is quite a stressful situation. There is a lot of brain power going on that you can feel the temperature in the 10x15 room just heat up every minute that passes. A fear of mine is talking in front of a group, but I guess it was worse when it was a group of VERY intelligent people. Once we got going, it wasn't too bad to speak up. Overall, the meeting went really well! It started off with our neonantologist going over all the wonderful memories that we have had in the past 206 days. Not to mention, I am still trying to forget the 3 months of hell just prior to ever meeting any of these professionals before Kayleigh was born. After we recapped all of our ups and downs, each specialist went over what they felt was best for Kayleigh's care from here on out so we can ALL be o...

Can you tell Kayleigh doesn�t like to lay on her back anymore? Actually, she was fine for about 30 minutes, but soon wanted to be put back on her tummy. She is so picky because she used to never like being on her tummy. I guess she likes to keep us on our toes, which goes along with everything else she does or doesn�t do. Her file is going to be named the �Kayleigh�s Way� file and her WHOLE file is going to be a �case study� for other doctors to be cautious about. It will read, �Handle with care, unpredictable baby syndrome� Speaking of care, we are meeting Thursday with ALL the neonantologists, nurse practitioners, cardiologists, respiratory therapists, pulmonologists, gastrointologists, and nurses who are involved with Kayleigh�s care. It seems communication amongst some of them have been lost or confusing, so we are going to clear up this game of telephone really quick. It is tough when there are so many people involved and so many decisions have to be made. Since we are dealing wit...

When I go on and on about Kayleigh and how close to death she was two weeks ago, there is only so much detail someone can describe to implant that image in someones mind of how scary that situation was. But, to show the people first hand what it was like to see her in such a rough state compared to what she looks like today, will make you rejoice in the Lord that He has performed a miracle in our little girl. You will notice in this first video a huge difference in Kayleigh appearance, but not only that, you will notice the difference in the atmosphere itself. She is swollen beyond recognition, but it is noisy from her machines beeping, there are two nurse working at once, and she has wires and lines coming out from everywhere. Only to compare it to something else will give you the true definition of her progress. This video from yesterday is the complete opposite. Think about all the same things I mentioned above, mainly appearance and noise level and you will see the difference in wh...

Can you believe the progress Kayleigh has made over the past couple days? She has been fighting so hard and doing so well! We are so very proud of her and we have no doubt in our mind that she is going to continue to make great progress and get herself out of that hospital. Kayleigh is currently satting in the mid 90's where she is supposed to be and she is down almost as far as you can go on the vent settings. Her oxygen is set at room air or just above and there is next to none when it comes to the amount of pressure being pumped through that vent tube and in to her lungs. Actually, she is breathing over the vent 99% of the time which is an awesome sign. The scary part is the muscle/tissue in her lungs that seems to fail her when the vent tube is removed. After doing so well on the vent, the doctors proceeded to remove the vent tube (extubate) from her throat. Once they did this, somewhere in her airways decided to give out and collapse, cutting off all air supply to her lungs. K...