Big Brother Kevin and his Baby Elephant

Many of you have contacted me and mixed with your wonderful words of support and encouragement have asked how Kevin is doing with all of this.  He doesn't get mentioned in the blogs very often because I try hard to stay focused on what is going on with Kyleigh.  I do that for 2 main reasons.  The first is because the blog serves as an electronic journal of all the big things that have happened with Kyleigh.  Granted it does nothing for the small details that could probably fill a few notebooks by now but it does help to look back to see what we've been through.  Second, it is therapeutic for me.  Sitting in the dark writing about the experience of the day or week is helpful for me and it's a way to express my thoughts and feelings in a controlled manner rather than holding it all in and having a breakdown at some point.  So you might be saying, that still doesn't really explain why Kevin isn't mentioned that much.  You're right I guess so if I really think about it I'd say it's because one of the ways I manage to do so many things is my ability to compartmentalize.  Meaning, I am able to think/worry about things separately from other things.  I have no idea if this is a good thing or a bad thing but it is how I work.  So when I'm writing a blog, in order for it to flow and make sense I have to stay focused on Kyleigh and what is happening or has happened.  If I include Kevin and what is happening with him and how he is impacted the blog will most certainly be much longer and probably a little confusing.  It would also be very busy and stress filled because adding Kevin and his world to the blog would add multiple levels to the story.  Looking at it this way, I guess it would give you all a more realistic picture of our lives since having Kyleigh but that was not the purpose of the blog.  The fact is, however, that Kevin is a HUGE and important part of Kyleigh's life and her adventures have a major impact on his life and therefore on our lives.  I could easily start a completely separate blog for Kevin and who knows maybe one day I will, but for now, I'd like to give you an update on how he is handling Kyleigh's latest adventure.

In order for this blog and it's title to make sense, you first need to know a little back story.  You may or may not know that we have had many problems finding a formula that doesn't bother her stomach.  These trials have had the very unfortunate side effect of horrific gas/flatulents (that's a nice way of saying she had really smelly farts)!  My father felt that with all the interesting smells, he would start calling Kyleigh his little baby elephant.  Don't worry it was said with love :).  It became a running joke and soon we started finding clothes with baby elephants on them etc. all the while Kevin quietly listened and learned this new term of endearment.

So fast forward to preparing for this surgery and hospitalization.  Weeks before the surgery was to take place, we started telling Kevin that the doctors were going to try again to take Kyleigh's feeding tube out of her nose and put in her belly.  We also told him they were going to fix her mouth so that she could start to learn to eat with her mouth.  He seemed to understand and was very accepting of the thought.  The night before surgery we told him that the next morning Mommy and Daddy were going to take Kyleigh to the hospital for the doctors to fix Kyleighs mouth.  We told him that she was going to stay in the hospital for a long time and that he wouldn't be able to see her for a few days (we didn't want him to see her intubated).  He got really said and wanted to know why he couldn't see her.  We lied and said it was the rules at the hospital.  He quickly recovered when he found out he had the choice of staying at home or going to Grandma and Papa's house.  Of course the choice was NOT home.

Kevin stayed at Grandma and Papa's house all week.  Bridgette and I always asked him if he wanted to sleep at home with us but he always said no.  We met for lunch and/or dinner but he always chose to go back to Grandma and Papa's.  We could see that he was not the usual happy little boy.  He always asked of he could see Kyleigh but we always said no she was sleeping or it was too late etc.  As I mentioned in another post, he eventually insisted on seeing his baby sister and finally came up to her room.  When he saw her, his mood changed.  He seemed to be a little happier and playful but only for a short time.

It was killing us to see him this way and to know that he didn't really understand what he was feeling or why. By Saturday night we didn't know what else to do so we had Grandma and Papa come to our house with Kevin after visiting at the hospital until it was bedtime.  We thought maybe staying with us, even sleeping in our bed, might help him feel better.  Wow where we wrong.  He cried and cried and cried until he just fell asleep.  We felt horrible!  The next day we made sure to spend as much time with him as we could playing and trying to have fun.  He played but always wanted grandma to play with us.  By Sunday evening we decided to see what he thought about sleeping at home.  We had all gone to get dinner and Kevin seemed happy and wanting to be with us...until it came time to go home.  We got into our car and the crying started.  It wasn't a "I want to get my way" kind of cry.  It was the please don't make me do this, sobbing, begging and pleasing kind of cry.  The kind that rips your heart out. Understandably, Bridgette got really upset too and we just didn't know what else to do.  Grandma and Papa had been waiting in the area in case this happened.  We convinced Bridgette to go with to Grandma and Papa's house so Kevin could have the best of both worlds.Bridgette, being the awesome Mom (and social worker) that she is, had a conversation with Kevin that night.  She decided to tell him we thought he was sad and he agreed.  She asked him what Mommy and Daddy could do to help him feel happy again.  He said....you can get me a baby elephant!!  You can tell me all you want that he is only three years old and he wouldn't know what that means and I will tell you every time you are wrong!  This was his way of telling us he wanted Kyleigh home.

The next day, Monday, Kevin spent most of the day with us at the hospital.  Just having Mommy sleep with him at Grandma and Papa's house made a pretty big difference.  However, on one of our walks around the hospital we stopped in the gift shop and guess what was sitting there on the shelf!!??  Yep...a blue baby elephant!  Of course we bought it and gave it to Kevin.  He held on to that elephant the rest of the day.  He told us how much he loved "her" and wanted Kyleigh to see her.

That night Kevin chose to stay at home with us.  He slept in our bed with the baby elephant.  He also asked if all of Kyleigh's stuffed animals could sleep with us. OF COURSE they can!  He slept great!  He even slept in a little!  Then today (ok yesterday..Tuesday) he came to the hospital and brought the baby elephant with.  He got to see his baby sister without her breathing tube and she was able to interact with him too!  The big smile we are used to seeing on his face came back!!

It looks like our happy little man is back!  We still have a long way to go so let's hope that baby elephant can get him (and all of us) through!!

Jaw Surgery Day 5, 6, 7 and 8

Saturday  (Day 5):  Another quiet night and quiet morning for Kyleigh.  It's the weekend which means we have a new team of doctors and nurses.  This new team is just as good as the weekday team I'm sure but I have worked in a hospital and I know the resources are not the same no matter how good the staff is on duty.  The attending physician is nice but we get the feeling he is a little lazy compared to the attending that has been taking care of Kyleigh.  He actually said he didn't want to stir things up over the weekend.  He covered himself by hiding behind Kyleigh's "history of a difficult airway" but we get the feeling he just doesn't want to deal with a risky extubation.  If he is really not that confident...we don't want him to do it either.  I don't mean to sound like I am talking poorly of the weekend staff because I am not.  They are wonderful and are taking excellent care of Kyleigh.  It's just obvious the consistency of care is off for the weekend and we need to be on our toes a little more.

Sunday (Day 6):  It was probably too much to expect that we could go a full 3 days with no excitement.  About 5:30 AM Kyleigh decided she had enough of this ventilator business and pulled out her breathing tube!!  I guess Kyleigh wasn't going to let the weekend attending physician get by without doing some work!  Fortunately, the staff was able to re-intubate her with no trouble.  They didn't even bother calling us until just before we arrived at the hospital.  Even then, the only reason they called is because they didn't want us to show up and hear about it by chance.  The fact that she pulled the tube out is not good but it did teach us some things.  We learned that Kyleigh's airway has improved greatly.  An Anesthesiologist nor an Ear Nose and Throat doctor was needed to re-intubate her.  This is a very good sign.  On the other hand, it also showed us that her lungs are NOT ready to come off the ventilator.  The are still too "wet", meaning she is still holding on to too much fluid.  Kyleigh's trial run was very helpful for the doctors.  They are now going to be very aggressive with the diuretics to dry her out and hopefully get her ready for extubation Monday or Tuesday.

Monday (Day 7): An uneventful morning, thank goodness.  Today the plan is to stay aggressive with diuretics, start changing medications, and slowly decrease the ventilator settings in preparation for extubation tomorrow.  Nothing exciting in terms of anything happening today so I will attempt to fill in all you medical jargon junkies on the details of the changes happening today.  First the ventilator changes.  I don't know enough about all the settings on the ventilator to even attempt to explain them.  What I do know is the setting called SiMP is the number of breaths per minute the machine is taking for Kyleigh and the Respiratory Rate (RR) is the total number of breaths taken per minute.  Kyleigh's SiMP was set at 16 with a RR between 36 and 45.  This means that of the 36-45 breaths per minute she is taking 20-29 of them.  This is very good but the machine is still helping with all of them.  Eventually they can go down to a setting called CPAP where Kyleigh will be doing all the breathing on her own and the machine will only be helping with the efficiency of each breath.  Now for the medications.  This may get confusing so feel free to skip to the end if you don't really want to know the medications.  Kyleigh has been on: Fentanyl for pain; Versed and Presidex for sedation; Milranone and Viagra for vasodialation to help with the pulmonary hypertension; Lasix and Diuril to decrease fluid retention; and budesonide to open up her lungs.  Milranone, Viagra, Lasix, Diuril, and budesonide will stay the same.  The Versed and Presidex will be decreased and eventually stopped and replaced with Ativan since it is easier to wean off Ativan.  The Fentanyl will be replaced with Methadone so Kyleigh will still be getting pain medication but her respiratory function won't be suppressed.  This should all happen over night and we are told to expect a slightly uncomfortable unhappy baby in the morning.

Tuesday (Day 8):  Another uneventful night and I prepared myself to arrive to an unpleasant experience.  Kyleigh was awake and there was nothing unpleasant about that at all!!! Something about seeing those beautiful eyes after being closed for so long just hits you hard!!  It has been tough seeing her intubated each day but I took some comfort in the fact that she was not aware of what was happening.  Seeing her awake was bittersweet.  I was so happy to see my baby girl awake and looking back at me but my heart hurt to see her scared and looking at me to make it better and there was nothing I could do.  When she first saw me she cried...silently.  I will never forget the "sound" of that silent cry as long as I live.  I held her hand and rubbed her head and told her everything would be OK.  I realized it didn't matter what I said as long as she could here my voice so I kept talking.  It worked a little but I wanted her to "feel" that everything would be OK so I just looked in her eyes.  I looked at her and as crazy as it sounds I told her with my eyes that I was here and everything would be OK.  Maybe I'm just delirious at this point but it worked.  She stopped crying, held my finger, and settled down to sleep. . . .I guess it could have been the dose of pain medicine the nurse injected at that point too but doesn't my version sound sooo much nicer!! LOL.  So during rounds with the team we learned everything looked great and we were all set for extubation!!  Around 12:30 PM I watched them turn EVERYTHING off and intentionally let Kyleigh "struggle" to breath on her own.  There could be no sedation or pain medicine because her lungs had to be able to function at their best.  We were ready...OK they were ready...I didn't know what to think but I stayed and watched because I had to know right away that Kyleigh could breath on her own.  Machine went off, lots of suctioning, they bagged her in between suctioning and then....pulled!!  Kyleigh coughed and coughed and coughed and they suctioned and suctioned and suctioned.  They were hurrying to get the high flow oxygen on her face (which is normal) but I watched her oxygen saturation dropping...80...75.....68.....65....59...WHY IS NO ONE ELSE PANICKING!?!?!?  I'm pretty sure my oxygen saturation matched Kyleigh's at this point but they got the oxygen tube on her face and the numbers sky rocketed back to 100%.  The team looked at me and took a deep breath and said..."OK all done"!  As soon as I regained feeling in my body, I text Bridgette who was in the playroom with Kevin to say it was a success!! Her and my sister Kim came in the room and we were all happy.  Then I think I realized how scared I was and how much I really did NOT like what I just witnessed and broke down a little.  The rest of the day has been calm.  I am staying at the hospital tonight because I want to be close by the first night off the ventilator.

I know so many of you have been asking about Kevin during all of this and we really appreciate all the concern and kindness from all of you.  Since I am alone at the hospital and don't plan on sleeping much, I am going to write another blog with an update on Kyleigh's amazing big brother Kevin.

Jaw Surgery Day 2, 3, and 4

Ok so I guess I was wrong with being able to blog every night...just too tired.  However, the good news is that Kyleigh is doing very well.  She has certainly done her best to keep our stress levels high and keep us from being bored but overall she is doing great and everything is going as planned.

On Wednesday (Day 2) I arrived at the hospital to find a couple of doctors and nurses looking at Kyleigh and at her monitors with perplexed looks on their faces.  The perplexed look is not unusual because this is Kyleigh we are talking about.  She has stumped almost every doctor she has come in contact with.  The number of doctors was a bit more concerning. They were trying to figure out why Kyleigh's "End Titles" (a number that shows how much Carbon Dioxide is left after an "exhale") were so high.  An average number is around 40 and Kyleigh was sitting around 85 frequently climbing into the mid 90's.  What does that mean?  Many things.  Basically without going into a ton of detail, the ventilator settings needed to be adjusted to give more pressure in the lungs.  In addition, a chest x-ray showed the breathing tube placement was a little high and had to be adjusted.  Also, an echocardiogram showed possible mild pulmonary hypertension which is increased blood pressure in the blood vessels going to the lungs.  None of these things were overly concerning and could probably be easily resolved.  So the tube was adjusted which, at first, made things much worse! All kinds of alarms went off and they had to "bag her" to get proper ventilation.   NOT FUN TO WITNESS!!  Things calmed down, I changed my pants (just kidding) and everything was fine.  Later in the day, we started hearing breathing sounds which should not be something we hear.  The nurse said the tube in Kyleigh's airway had a leak.  That did not sound like a good thing to me but it wasn't necessarily bad.  The leak itself is not a good a thing and needed to be monitored but the reason it was leaking was VERY good.  It meant that the airway was bigger than the tube and as the swelling was going down the airway was getting even bigger!  This was great news as a small airway was the concern initially and this means that the surgery worked!  Only time and a full extubation will tell if the change is significant enough to avoid the trache forever but we do know for sure the airway is bigger and continues to get bigger. Later this day she went down to radiology to have PICC line placed.  This is a fancy acronym for a more solid/stable IV.  She needed this because her veins have always been difficult for the staff and the medication she is getting are too important to have to wait to find a vein if a regular IV comes out.

Thursday (Day 3):  We arrived to another very eventful morning!! This time there was a room full of people! Easily 8-10 people.  Only this time they were not standing and thinking they were actively working on Kyleigh.  Fortunately, a nurse that recognized us caught us before we got into the room and told us that they had to swap out the breathing tube for a different one.  Before I go into detail on how/why that happened and what that means I will tell you it went well and there were no problems.  So, the leak around the tube continued to get worse over night.  Again, this causes problems but the reason is very good.  The leak was bad enough that even if they disconnected the vent and used the bag, Kyleigh's chest wasn't rising enough meaning she was not being properly ventilated (not breathing well enough).  So for Kylegih's safety, the decision was made to change the tube to a different style tube.  The new tube has a "cuff" on the end which forms a seal between the tube and the airway so air can not leak out.  It is basically a balloon on the end that is inflated to touch the sides of the airway.  The risk involved is minimal but for Kyleigh it meant possibly irritating the airway and causing swelling or worse, having a hard time with the actual switching itself.  Neither were a problem and all was fine.  In fact, the Ear Nose and Throat doctor said he could see her airway even with the other tube still in.  Very good news!  With the new tube her O2 levels were still a little low. The doctors felt it was probably due to the mild pulmonary hypertension so they started her on 2 medications.  One is called Nitric Oxide and the other is Milranone (not sure if that is spelled right).  These worked slowly but were effective and her numbers leveled out nicely.  The new tube is working wonderfully.  Her oxygen saturation levels are steady in the mid to high 90's and her CO2 levels remained high but acceptable (60's).  Probably the most important thing that happened today is that Kevin got to see Kyleigh!! We were planning to wait until after she was extubated for him to visit.  We felt the tubes and machines might be too  much for a 3 year old to handle.  Kevin felt strongly the opposite.  My parents brought him to the hospital so Bridgette and I could take him to lunch.  We just switched out adults.  My parents got out and went up to see Kyleigh and we got in the car and went to lunch.  The plan was to do the same in reverse after lunch.  When we got to the hospital to switch back Kevin took his seat belt off and said I'm going to see Kyleigh.  We told him she was sleeping and he can't but he informed us he would just see her asleep!!  The staff at the hospital was wonderful.  Kelsy from child life met us in the playroom and showed Kevin pictures of what he would see.  He was polite and tolerated the wait as though this was just something he had to do to be able to go see his baby sister.  When Kelsey asked if he had any questions, he said "You know those machines aren't on."  He was right.  The machines in the picture were indeed off.  We told him that Kyleigh's were on.  He said, "OK can I go see Kyleigh now?"  We walked to her room and he walked around waving to people like he was the mayor of the hospital.  Of course getting all kinds of attention from the nurses and staff!  When we got to the room he walked right in with no hesitation and said, "Daddy can you pick me up please?".  I did.  He looked at Kyleigh and at all the machines and said "Hi Kyleigh."  He wanted me to put him down then grabbed grandma and papa's hand and said "Come on guys! I will show you the playroom".  Not even a slight bit of sadness or worry in this little boy.  In fact, after seeing Kyleigh, his mood seemed to lighten and he was happier and more playful.  He is a very protective big brother and just wanted to know she was here and she was OK.  I think we were more worried than anything but it was great to see him relieved that she is OK. Oh and to add to the "fun" we are having during this time, my cell phone was stolen today!!! It was a great way to end a stressful day!

Now for today (Day 4): I don't want to jinx anything because today is not over, but I will give the highlights so far.  Originally the plan was to extubate today.  Bridgette and I were a little concerned because we didn't feel like she was ready but we were trusting the doctors.  Turns our we were right.  Over night they tried making some adjustments on the ventilator towards coming off and Kyleigh didn't tolerate it well.  So the plan is now to slowly make adjustments throughout the day and move towards extubating tomorrow.  So far, the Nitric Oxide has been decreased but put back up, the paralytic has been stopped so we are seeing movement and things from Kyleigh which is nice.  Most importantly, the ventilator is showing that Kyleigh is taking a few breathes on her own.  So no excitement this morning which was nice but some great progress throughout the day.  It is a slow process and they do not want to rush her off the ventilator.  Bridgette and I are both fine with that plan :).  Cell phone update: Still stolen!! Since it is a work phone, I will get a replacement but possibly not until Tuesday.

So that's the update so far.  Hopefully there won't be much to report on by morning.  Thank you all for your continued prayers.  They are working for sure!  Please keep it up!

Jaw Distraction/G-Tube Surgery Day 1

Today was a long day!  Overall it was a success.  Kyleigh made it through surgery and is recovering in Pediatric Intensive Care.  She is still intubated, sedated, and paralyzed to protect her airway and keep the breathing tube in place.  Such a long day condensed into 3 sentences...wow!  So I know all of you are wanting details.  One because you have come to expect that in my blogs and two because allot of you are just as twisted as I am and like the medical jargon/details.I also know you have been waiting all day for this update!  Over 50 views of my blog today alone!  So thank you for checking in on us and I apologize for the delay.

Today started early with us arriving at the hospital at 6:30 am to get ready for the 7:30 am surgery.  Everything was going great!  Kyleigh even cooperated when they took her vitals and gave no trouble getting a reading on her oxygen level.  This was never true in the past...it was always a challenge.  We were emotional waiting as all the nurses and doctors came in and talked and asked questions.  Nothing to difficult until Dr. Hamming, my favorite Ear Nose and Throat doctor (sense my extreme sarcasm) came in.  She dropped yet another bomb on us just as she did during the failed attempt at the G-Tube placement in August.  Dr. Hamming told us that she felt today's intubation would be fine but she had great concern regarding extubation 1 week from now!  Her concern was that having to be intubated and sedated for so long greatly increased an already high risk of Kyleigh not being able to be extubated without putting in a trache!!!! She said they would take her back into the operating room to remove the breathing tube and if Kyleigh is unable to maintain her airway they would not be able to send her home without a trache!!! SERIOUSLY!!!! The whole point of this surgery was to improve the airway to AVOID the damn trache and now..today...not 2 or 3 months ago...this doctor is telling us that the procedure we had been so looking forward to be the potential answer to all Kyleigh's challenges could very well be the thing that puts us right back where we were trying to avoid going!!! Needless to say I was PISSED and Bridgette was in tears!! We had to decide to proceed or not!!!  Now, aside from my great dislike of this doctor and her method of delivering difficult news, the reality is she is right!  Man do I hate to admit that!  However, the risk of not having this surgery was greater than the risk of needing a trache.  As you already know, we signed consent and went ahead with the procedure. I insisted Dr. Hamming notify us in the event Kyleigh could not be intubated and a trache was needed.  I also asked for her to come out and tell us if she was successful.

So we handed our little girl over to the surgical team...again!  We pulled ourselves together and joined our parents in the waiting room and began to wait...and wait...and wait!  6 Months ago we waited for hours while Kyleigh had open heart surgery yet somehow waiting to her if she was successfully intubated or not seemed like an eternity in comparison.  Finally, Dr. Hamming came out and said it was "uneventful".  In our life..hearing a doctor say the word "uneventful" is music to our ears!  The news got even better...not only was she able to be intubated it was easier than expected.  Dr. Hamming showed us pictures of Kyleigh;s airway and voice box and compared it to a "normal" one.  It wasn't too far off!  This means that her airway has improved!  The best news came next.  Dr. Hamming was no longer concerned about the extubation process and the likelihood of needing a trache greatly decreased!  Again...proof that your prayers are working!  The power of prayer is evident in our little princess.  The challenge still was that her tongue was still in the way and blocking her airway.  Hopefully the jaw surgery will help with this.

Next we waited for another 2 hours.  Dr. Geissler (general surgeon/g-tube guy) came out next and said everything was done and UNEVENTFUL!!!  Next Dr. Vicarri (craniofacial plastic surgeon/jaw guy) came out and said....you guessed it UNEVENTFUL!!!

Now the plan is that Kyleigh will remain intubated until the earliest Friday.  Medically induced paralysis will stay for at least 24 hours.  Sedation is questionable.  The PICU staff wants her sedated the entire time she is intibated because she is more comfortable and doesn't fight the tube.  Dr. Vicarri wants her off sedation so that she fights to breath on her own because it will strengthen her airway.  We understand both sides and will probably go with the PICU staff for now.  In a couple of days we will probably be more willing to turn sedation off and let her strengthen her airway.

If you're wondering about big brother Kevin..he is doing well.  He spent the day with Auntie Kim and we met him for dinner.  It's going to be very difficult for him because he is very protective of Kyleigh.  Last time she was hospitalized he insisted on seeing her every day so he could see who was taking care of her.  We do not want him to see Kyleigh until the breathing tube is out.  He is already worried about her and asks why he can't go see her.  Thankfully we have a very supportive, loving family and friends that will keep him busy for the next few days.

My plan is to blog each day like a journal.  Unfortunately you will all be 1 day behind because I probably wont write the blog until late at night.  Advocate Lutheran General staff has been great so far!  We are happy with the plan as of now and are so appreciative of all your support and love and most of all prayers!

The Jaw Distraction Surgery Details

Since I began writing this blog, I have learned that many of you really enjoy the meaty details about the medical stuff Kyleigh is experiencing.  I love these details too but I thought most people cringe at the thought of incisions and tubes etc.  Not you guys!  So if you are one of the "normal" people that don't want to know the details of Kyleigh's upcoming surgery, you should know it is not scheduled yet and you should STOP READING NOW!  For the rest of you, here is what we know.

Since Kyleigh has a tricky airway and has had difficulty being intubated, 2 Ear, Nose, and Throat specialists; Dr. Hamming and Dr. Walner, will be in the operating room to intubate her.  Also, due to the diffculty with intubation, they want to place the G-Tube during this surgery as well to avoid having to put Kyleigh under again.  In order to do that, the general surgeon, Dr. Geissler, will be there too.  Then of course, Dr. Vicarri and his plastic's team will be there for the jaw distraction surgery.  So if your keeping count, that's 4 surgeons that need to come together for this surgery to happen.  If you have ever tried to make an appointment with a specialist/surgeon you know how difficult their schedule's are so this is not going to be easy.  In addition, we want to wait until after Kevin's birthday (Oct 23rd) before we focus on Kyleigh...again.  So once the surgery is scheduled, I will post a quick blog to let you all know and to ask for your prayers!

The surgery will be done in 3 steps:

Step One:  The ENT doctors.  They will use fiber optic tubing and their new knowledge of Kyleigh's tricky airway to place a tube down her nose and into her trachea to secure her airway.  They will go down her nose so that her mouth and tongue are clear for the jaw surgery.  Once the airway is secure and the machines are breathing for her, they will progress to step 2.

Step Two: General Surgeon.  Dr. Geissler will come in and place the G-Tube.  He will insert a small tube with a camera as well as a small line with forceps on the end.  He will look for the perfect section of Kyleigh's stomach and pull it to the surface of her abdomen.  He will make a second incision in the stomach lining and insert the G-Tube.  The G-Tube will be stitched into place and secured.  On to step 3.

Step Three:  Jaw Distraction.  So this is technically step three but this portion is done is stages.  While in surgery, Dr. Vicarri will make and incision at the temporomandibular joint (TMJ).  This is where your lower jaw meets your skull.  Essentially he will break the bones on either side and separate them from the joint.  Two metal separators will be inserted (one on each side) and secured to the bone in her jaw.  Once this is done, everything will be closed up leaving only 2 small plastic "flaps" sticking out behind Kyleigh's ears.  These flaps are how the distraction occurs, which is the second portion of this surgery.

After surgery, Kyleigh will remain intubated for at least 5 days and in the Pediatric Intensive Care Unit for at least 2 weeks.  During the 5 days she is intubated, Dr. Vicarri will come in and adjust the 2 "flaps" to continue the distraction process.  The goal is to eliminate the current 1cm deficit.  Dr. Vicarri told us that he will intentionally adjust past the 1cm deficit to leave room for typical growth of the upper jaw.  Fortunately, during the process of inserting these distractors, the inferior alveolar nerve, which is a branch of the mandibular nerve, is "insulted" and basically shuts down temporarily.  This will cause Kyleigh's jaw to go numb meaning she shouldn't feel ANY pain!!

This jaw distraction is a minimum of 2 procedures.  The first procedure is what I described above.  The second procedure will happen about 3-6 months later.  Once Kyleigh's bone is fulled healed, Dr. Vicarri will go in and remove the hardware.  I think this should be a pretty simple procedure since ideally Kyleigh will then have a fairly typical airway at that point.  The reason it is a 2 procedure MINIMUM is because there is a possibility that when "guesstimating" how much to over compensate for upper jaw growth, Dr. Vicarri may go to far and problems can occur later in life creating a need for this procedure to be repeated.  We will hope and pray that doesn't happen.

I'm pretty sure I mentioned this in my previous blog, but just in case, here are the reasons why this surgery is so needed and is so important to us.  The biggest reason is that this will basically eliminate the problems Kyleigh has had with her airway and by doing so, should eliminate the need for oxygen at home and the discussion of the trache can finally be off the table.  The next great thing is that Kyleigh will no longer have her NG-Tube in her nose because the G-Tube will now be in her belly.  In case you aren't aware, this is a HUGE deal for us (and Kyleigh) because she has had a tube in her nose and tape on her face since 12 hours after birth!!  So no oxygen tube and no feeding tube on her face, with a new jaw...she will look like an entirely different baby!  Lastly, Dr. Vicarri feels that the recessed chin is probably the biggest reason Kyleigh is not eating by mouth.  The surgery will cause a pretty major oral aversion and we will have a ton of work to do but it is likely that Kyleigh will eat by mouth!!

So as you can see, we are in for a long and crazy ride but the benefits and outcomes of this are HUGE!! We are scared to death but ultimately can not wait for this surgery.  Your prayers have meant the world to us and our little princess is proof of the power of prayer.  Please continue to pray for Kyleigh and for us to have the strength we need to get through all that is about to come our way!

Reaching others

So I set the settings on this blog to allow the public to see it.  I didn't actually expect anyone other than my family and friends to see it but it turns out other people are reading it!!  I received an email from a woman named Heather.  She read about Kyleigh and sent her well wishes.  In addition, she shared her story with me.  While Kyleigh doesn't have what Heather has, I think it is important that her message be shared.  She found Kyleigh;s blog for a reason.  Who knows what good will come from sharing her story.  I do know that no harm can come from it!  So please take a minute to read Heather's story:

I am a wife, mother, and a mesothelioma survivor. When my daughter was 3 ½ months old, I was diagnosed with this rare and deadly cancer, and given 15 months to live. Despite my grim prognosis, I knew that I needed to beat the odds for my newborn daughter, Lily. It’s been 7 years now and I feel that it’s my duty to pay it forward by inspiring others.In honor of upcoming Mesothelioma Awareness Day (September 26), I want to use my personal story to help raise awareness of this little known cancer, and to provide a sense of hope for others facing life’s difficult challenges. I would love it you would help me spread awareness by sharing the campaign page on your blog so hopefully your readers will participate! My goal is 7,200 social media shares - your support will help get me there!
Here is the link: www.mesothelioma(dot)com/heather/awareness/

Please copy and paste this link and share it on Facebook or Twitter etc.  Good Luck Heather!! I hope this helps and I wish you and your family the best!!

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.