An update with some positive news!

So I know I promised I would come back and fill in the blanks for those of you that are not directly in Kyleigh's life and I will keep that promise...one day!  As soon as princess Kyleigh stops finding new ways to make life exciting and I actually have time to look back and see what info is missing.  For now, I have to keep moving forward.  Otherwise, there will be so much to fill you all in on that I just won't be able to keep up.  In the last blog, I told you all about the attempted G-Tube placement that did not happen because the team was unable to intubate Kyleigh. The cliff notes version of what happened next is that she stayed in the hospital for a full week and ended up coming home on 24hr oxygen!  Within that week many things changed.  Some were positive changes, some were not.

We added a pulmonologist to the seemingly endless list of Kyleigh's medical professionals.  Dr. Kimberly Watts.  She is amazing and I absolutely LOVE her.  She thought the idea of a trache was crazy and said she would help us fight against it unless she could be convinced otherwise.  We also changed GI doctors to one that actually believes reflux is real and not something Bridgette and I made up!  He has started Kyleigh on an anti-biotic.  Not to treat an infection but to use the unpleasant side effect of upset stomach to help Ky's stomach empty faster.  Don't worry, it's a really low dose so it's not mean :).   An Ear Nose and Throat doctor (team of doctors really) was also added to a "friends" list.  I didn't get along with these friends to well but I have learned that in order to get the best care and quick answers to my questions, it is best to play nice.  So I do....usually!  Unless you want to trache my daughter for no reason...then you don't want to play in my sandbox!  We were able to hold off on the discussion of the trache because Kyleigh was stable on oxygen and there was no immediate concern for her airway.The ENT's recommended Kyleigh have a sleep study to see if her airway is blocked when she sleeps.  More on that later.  They also told us that Kyleigh's recessed chin may be playing a bigger part in all of this than we once thought and encouraged us to see the Cranio-facial Clinic at Lutheran General Hospital.  Good..another group of doctors to deal with!!  So we schedule both the sleep study and the craniofacial clinical and were discharged.  OK so most of you are probably saying...come on Jim where are the stories about what happened while you were there?  You all know me too well! Of course there were funny stories and emotional stories but I think I will save those for another blog because this one is going to be long enough as it is!!

So we got sent home and began the process of learning how to live our life attached to an oxygen tank at all times.  Oh and learning how the hell to keep a nasal cannula in a 6 month old's nose!!  It's been a month and we still have no idea how to do it short of duct taping her entire head but I think DCFS frowns on that kind of thing!! Once we were home and settled in we began the process of scheduling and going to appointments!!  Here is a summary of each one in the order I remember them:

PULMONOLOGIST
This was our first appointment because we were hoping to get off the oxygen!  We felt Ky was doing really well and for sure Dr. Watts would take her off.  NOPE!! Silly parents....let's increase it because she's clearly in distress.  Seriously?! Not what we wanted to hear.  So we increased her oxygen and added a twice a day breathing treatment!  OK we can learn to incorporate that, and we did.  Kevin has taken on this responsibility!  He likes to help give the breathing treatments!  Dr. Watts was still opposed to the idea of a trache.  However, she was curious to see what the sleep study will show.  If Ky's oxygen drops at night but comes up easily with oxygen...no big deal.  She can stay on oxygen at night.  However, if her carbon dioxide levels (the stuff we breathe out) go up, then we have a problem.  This would mean that Ky is not exhaling enough of the bad air and no matter how much oxygen we give her it wouldn't compensate for the high carbon dioxide levels.  If this happens, Dr. Watt's would then be willing to entertain the idea of the trache but still wouldn't rush in to it.  Again, NOT what we wanted to hear.  So one more thing to add to the list of tings to pray for!

GASTROINTEROLOGIST (GI)
We finally found a GI doctor that listens to us!! His name is Dr. Hector Hernandez!  He believes in reflux!!  Not only does he believe in it, he says Kyleigh has it...severely!!! We were very happy to here this news but it was still kind of a No SH*T Sherlock moment!  But now what!?  Well as I mentioned before, he put her on Erythromycin.  A very low dose to increase the motility of the intestines.  basically this means it allows Kyleigh's stomach to empty faster making more room for the food as it goes in.  This has been working very well so far.

SLEEP STUDY
Kyleigh and I had a sleep over at the hospital.  This time just for 1 day LOL.  At home Kyleigh sleeps on an inclined mattress, sometimes in her bouncer seat because her reflux is so bad.  When we got to the sleep study, i found out she would be flat on her back on a flat mattress.  I knew we were in for a very rough night of feedings. I wondered if she would even sleep for the study.  Once she had all the wires attached to her head and wraps around her chest etc. I swaddled her and laid her down.  She went right to sleep.  Her feedings were uneventful!!  Not a single cough or gag!! I could NOT believe it!!  This was not the time to show off Ms. Kyleigh!!  I felt overall the sleep study went very well.  The technician never had to reposition her meaning she didn't stop breathing.  I watched the carbon dioxide monitor all night and based on the parameters the technician told me, the levels didn't seem to go too high.  So we would just have to wait and see what the doctors (ENT) have to say.

EAR, NOSE, AND THROAT
Dr. Hamming was the doctor who originally broke the news to us that she thought Kyleigh needed to have a tracheotomy.  While Kyleigh was still in the hospital, on two different occasions, Dr. Hamming insisted that Kyleigh needed to be trached.  She was always very nice to us but in my opinion, seemed very closed minded and unwilling to consider other options.  For this reason, we refused to schedule our follow-up appointment with her.  Instead, I scheduled it with her boss Dr. Walner.  He had seen Ky in the hospital too and was the one who suggested the sleep study.  Our appointment was to go over the sleep study results but unfortunately, even though it had already been a full week, the results were not available to him.  He was not happy...neither were we.  The appointment was not a complete waste though.  He was able to scope Kyleigh.  This involves passing a tube/camera through her nose and down her throat to look at her airway.  I know this sounds horrible..and it is.  Remember though that Kyleigh has had an NG-tube up her nose and down her throat since the day after she was born and since she insists on pulling it out almost every day, she is quite familiar with having something like this done.  We were nervous about this scope because it could show that the trache was the only option. Thankfully that was not the case! Finally some good news!!! Dr. Walner said he feels that Kyleigh CAN BE INTUBATED!!!  This was great news but it came with a big "BUT". BUT there are risks we need to be aware of! First, if they were to intubate Kyleigh, there is a big risk that her airway might swell during surgery.  If that happens, they would not be able to take her off the breathing machine until the swelling goes down.  They would help with medication but the amount of time would be unknown.  Second, and the bigger risk, is that her airway might swell AFTER the surgery.  If this happens they would NOT be able to put the breathing tube back in and there would be no choice but to put in a trache!  These were not good options.  Not anything a parent would want to face but we were happy.  happy because it meant that the trache was now more of an option than a necessity.  An option that sounded like it would only be necessary in a worst case scenario.  Dr. Walner was careful to say that he was telling all of this to us under the assumption the sleep study went well.  We would talk more after he had the results.

FEEDING CLINIC
Long before we tried to have the G-tube placed, we scheduled an appointment with the feeding clinic at Easter Seals in Villa Park.  This clinic came highly recommended by our home health nurse as well as Kyleigh's speech therapist.  Dr. Dumont was GI specialist on the clinic team and apparently is highly sought after!  We were able to get in to see this team a couple of weeks ago and we are so glad we did.  First, this highly recommended GI doctor agreed with the course of action our current GI is taking.  Second the feeding specialist there feels that much of Kyleigh's difficulty with eating has to do with her respiration (breathing) and positioning.  A very long story short...they recommended a physical therapist that specializes in respiration as well as a speech therapist that specializes in feeding.  The feel that Ky needs to be stretched (we agree) and helped into proper positioning.  Once that happens she will likely be able to eat easier. How do those two things relate you wonder?!  Well, Kyleigh spends much of her day with her head back and to the right.  Kind of like she is looking up to her left.  She does this because that is what was most comfortable for her way back before her heart surgery.  This position made it easier for her to breath.  It still does but she doesn't need to do it as much because her heart is fine!  Being in this position for so long has caused the muscles in the back of her neck to shorten/tighten.  Now, if you put your head in that position and try to swallow, you will feel that it takes a little focus and effort to do so safely.  This is why the stretching and positioning is so important.  We will begin those therapies next week Wednesday.  We are very happy with this plan and can't wait to see how it works.

SLEEP STUDY RESULTS
Dr. Walner called us two days ago with the results of the sleep study.  It was not at all what we thought or hoped.  Kyleigh has severe obstructive sleep apnea.  During the study she did not completely stop breathing, which obviously is very good.  She did, however, half 10 episodes where she only took small "half breaths".  This caused her carbon dioxide levels to spike really high.  This is bad.  This means that at night, even with oxygen, Kyleigh's airway is obstructed enough that can't always exhale enough.  If carbon dioxide levels are high the brain is at risk for damage and the body is not able to use the oxygen it is getting.  So the good news the ENT gave us was short lived.  She can still be intubated but that won't help us when she's not in surgery.  We have to find a way to help Kyleigh to maintain a safe airway.  We have 3 options.  1) a C-Pap mask.  I have one of these myself.  This is a possibility but may be difficult because she probably won't keep it on and the amount of pressure needed to maintain the airway may be to much for her.  2)a tracheotomy and 3) Dr. Vicarri and the cranio-facial team says a jaw distraction surgery will fix the problem.  Dr. Walner said he wanted us to prepare ourselves to have this discussion with him because the trache was a real possibility at this point.  He felt that of the 3 options it was the safest way to go.  Have you ever felt like someone was yelling in your ear while punching you in the stomach at the same time?  That's how I felt when the doctor was talking to me.  I wanted to cry but I wanted to scream at him too.  I felt like we never catch a break.  More than anything I had to tell Bridgette and I didn't know how.  So, in my typical fashion I quickly looked for something to be hopeful about and focused on that while I told her.  My wife, the mother of my children, never stops surprising me.  She just said "OK, so then we hope Dr. Vicarri has something good to tell us tomorrow".  I seriously don't know who this woman is sometimes....in a good way.  The woman I dated and married never would have been able to handle the craziness that our life has become.  The strength she has found blows me away.  Don't get me wrong, we are BOTH so overwhelmed we don't know what to do with ourselves sometimes, but Bridgette stays focused on what Kyleigh needs not what our fears are.  I followed her lead on this one because inside I wasn't feeling strong at all.  Oh yeah, did I mention this all happened on my birthday!?

CRANIO-FACIAL CLINIC
We arrived at the clinic like it was just another appointment.  What Bridgette and I didn't tell each other was that we were both scared to death!!  Every other appointment we have gone to with Kyleigh, we knew what the outcome was that were hoping for and we knew what needed to happen to get that outcome.  This one was different.  We were either going to find out that Kyleigh needs to have a trache no matter what and maybe she was not appropriate for this surgery or that she was appropriate for this surgery. Even the "good" outcome here meant a major, probable nasty, surgery for our baby girl!!  There was just no good feeling to be had.  When we got called into the room, the nurse walked us back and said her name was Irene.  I don't know how many of you believe in signs or miracles etc. but Irene was Bridgette's grandmother's name.  As soon as she said her name I thought, that has to be a good thing right?!  So we are waiting for what feels like hours in the examination room when in walks the first member of the clinic team...Dr. Hamming.  For those having trouble keeping up, that's the doctor I don't get along with so well that insists Kyleigh needs to have a trache.  She was very pleasant and this time discussed the sleep study results with us openly and talked a bout the options.  She agreed with Dr. Walner that the trache was the safest way but wanted to see what Dr. Vicarri said.  She went to get him and we waited for what felt like another 6 hours.  When Dr. Vicarri came in, he was very pleasant and shook both our hands.  He asked us to tell him about Kyleigh.  I told him to check out my blog!  Just kidding.  He listened intently.  Yes I said he LISTENED!!  It is amazing what a difference this makes in a doctor!!  He then examined Kyleigh's jaw and mouth.  It turns out that even though at times you can barely see Kyleigh's retracted jaw, she actually has a pretty significant retraction.  Her is about 1 cm shorter than it should be.  When you consider how small her head is anyway, this is a pretty big deal.  He told us he felt there were 2 options.  The first being the most conservative and perhaps with the most caution would be to put in a trache now and make sure we have a secure airway.  Then just do the surgeries whenever we want.  The second option, which he felt confident was a safe and viable option was to do the surgery WITHOUT the trache provided the ENT team could intubate her!  He then asked Dr. Hamming if she felt Kyleigh could be intubated and she said...............YES!!!!!!!!!   That means that Dr. Vicarri feels confident that this surgery can be done without a trache and will fix her airway issues!!!!  We could not have asked for better news. Of course things are not perfect and a million and 1 simple things can wrong during surgery requiring an emergency trache, but that can happen to anybody and Dr. Vicarri feels chances are small that anything would happen requiring the trache.  We asked if in the event an emergency trache is needed, would Kyleigh have the trache the rest of her life.  Dr. Hamming said that if we had asked her that prior to this appointment she would have said it was very likely she would never come off of it.  However, now that Dr. Vicarri feels the airway issues are caused by the jaw and tongue she she's no reason to believe that the trache could not be removed eventually.

We are going to coordinate with the ENT team, Dr. Vicarri, and Dr. Geissler the general surgeon, so that the G-Tube can be placed at the same time.  Speaking of G-tube, Bridgette asked Dr. Vicarri if he thought the retraced jaw played a part in Kyleigh not eating by mouth.  he said, most questions he answers with a probably or maybe but that he could answer with certainty YES.  He said that the retracted jaw is probably one of the biggest, if not the biggest reason she is not eating by mouth.  This is not to say that she won't come out of surgery and drink a bottle but things should improve over time!!    We are waiting to schedule the surgery until after Kevin's birthday on October 23rd.  We missed his last birthday because Bridgette was pregnant with Kyleigh and started bleeding so we had to go to the hospital and he has really been getting slighted allot with all the attention Kyleigh needs from us.  Even though we try hard to include him and attend to him, he is missing out on Mommy and Daddy time a lot.

There are so many more things to share about what the surgery will entail and all the details about the hospitalization etc but I will share those later.  For now, thank you all for all of your prayers!  They are truly working.  Despite the tremendous stress each day, we also feel how truly blessed we are to have family and friends who care so much.  Keep the prayers coming and I will try to keep you all updated more often.