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.

Another Chapter

I haven't written a blog since Kyleigh's heart surgery. It's been quite a ride since then and Kyleigh has been keeping us busy. I hope to write a longer update blog soon but this update is more important. The very abbreviated back story is that there have been any feeding issues and Kyleigh has become very aware of her NG tube. She pulls it out multiple times a day and gags and chokes quite often. The decision was made to move from NG to G tube meaning a tube would be surgically placed directly into her stomach. This brings us to today as Kyleigh was scheduled for the surgery today.
Unfortunately I'm going to be sharing bad news. Kyleigh was not able to have her surgery today. Her airway has gotten smaller since her her heart surgery and they were not able to intubate her.  It seems her recessed jaw has not grown at the same rate as the rest of her body which keeps her tongue and other soft tissues too close to the back of her throat. This is not causing any obvious problems with breathing at home but as she continues to grow it most likely will block her airway! So we will be scheduling an appointment with the craniofacial team to begin the process of fixing Kyleighs jaw. The first part of the process is the most upsetting to us.  Kyleigh will likely need a tracheostomy. That means a tube would be placed in her throat for her to breath. THIS IS NOT A BREATHING MACHINE! In fact it wouldn't even be connected to anything. It simply allows her to breathe through an opening other than her mouth and nose. This will protect her airway as she grows but will also allow her to have the surgeries she will need. We have not talked to the team officially but it's anticipated that it would be about a year long process.  So more prayers for Kyleigh would be greatly appreciated.  I will try to update as much as possible.

Just for Fun

Most of you know me well enough to know that no matter what the situation I always find a way to laugh and have fun.  This time in my life is no different, so I thought I would share a couple of funny things that have happened during our stay.

Heavy Recruiting

The cardiologist Dr. Vanbergen, has been trying very hard to recruit me to be part of the Advocate Pediatric Team! He has mentioned I'm an OT to literally ALL the staff he has come in contact with! Every time a new person came in to the room they said, "So I hear your an OT! You should talk to the rehab manager."  This went on all day every day until finally the speech therapist physically brought her manager to the room to talk to me. We finally agreed that I will at least build my resume in the Advocate system. I think Oak Lawn is a little far to go to work every day, but I'm a firm believer that everything happens for a reason, so who knows what may come of it.

The Not-So-Revolving, Revolving Door

The entrance to Hope Children's Hospital is a very nice big blue awning and very welcoming to children (and adults too). In the center if the entrance there is a huge automated revolving door complete with giant stuffed giraffes. Bridgette and I have come to the conclusion that there is a hidden camera show secretly taping our entrances and exits from the building. Why do we think this? Probably because more times than not when we walk up to the door that is usually already in motion, it comes to a complete stop. Then as we decide we should use the manual door on the side, it starts up again. So we decide to go in the revolving door.  It keeps moving long enough to seal off both exits and comes to a complete stop! Yes, there we are....trapped....the stuffed giraffes staring us down. Multiple staff walk by but nobody seems to notice the two full grown adults in the giraffe cage! Fortunately this is a busy hospital and more people approach the not-so-revolving, revolving door long enough for it open up so we can walk out. This has not been a one time occurrence! You would think after it happened once we would have learned our lesson but no, surely it won't happen again right?!  Wrong, this happened at least twice.  The door also revolves to a closed position so that we can't even get in! I guess we will see what happens when we try to leave today.  If you don't hear from us, someone check with the giraffes!

The Hellivator

Kevin has been coming to visit us at the hotel almost every day. We've been staying on the 5th floor which means we take an elevator multiple times a day.  Kevin loves to push the call button and of course ride in the elevator. We have an elevator in our building at home so this was not new to him.  We have heard him say the word elevator many times and he always said it correctly.  Yesterday, as we were waiting for the elevator, he referred to it as the "Hellivator". We laughed it off and stepped in, pressed the lobby button and the doors closed. We rode down to the lobby and the doors opened...briefly...then closed again. We tried pressing the door open button, the lobby button, any other floor button, nothing worked! It was only a few seconds but a little panic started when all of a sudden the elevator started going up. I was able to press our floor and when the elevator got to floor five, it slowed down, then kept going. . . and going...we got to around the 10th floor and I began pressing all the remaining floors. Finally the Hellivator stopped on the 11th floor and the doors opened. This time I jumped out and stood so the doors couldn't close ( or at least I was hoping they wouldn't) and told everyone to get off. We waited patiently for the other elevator and it took us uneventfully down to the lobby. I informed the front desk and with a slight hint of "this man is crazy" the woman called maintenance. I don't think they did anything to fix it though because later that night my trip down to the 4th floor to get ice, included a stop on the 12th floor and the Executive Lounge!  I'm not sure what Kevin knew that we didn't but I know I'm listening closer to what my 2 year old has to say from now on.

4 Days And Counting

It has been a long few days! Sorry there haven't been a lot of updates but sitting down to write one, usually leads to my eyes closing and me falling asleep. As you read in the previous post, the surgery went great! So many staff have told us how well Kyleigh did and what a success it was. That is an awesome thing to hear!  During surgery, the team discovered that Kyleigh has a small and "tricky" air way.  She was difficult to intubated and required fiber optics to guide the anesthesiologist. The reason I bring this up is that this is also the reason the breathing tube stayed in a little longer. They waited until the anesthesiologist was available so that if she didn't do well when it came out, they would be able to put it right back in.  She was successfully extubated Tuesday morning!

Tuesday was a great day! It was so good to see Kyleigh without the breathing tube. Family and friends all expressed relief and joy.  One of my Aunts put it best when she said, "I think we are all breathing a little better too"!  Her NG-tube feedings were started and everything was looking great. The rest if the day was spent watching her sleep and talking to doctors.  In the meantime, our little man Kevin, was starting some excitement of his own. On Tuesday he developed a fever and vomited. His fever got up to 104.2! He still wanted to come to see us at the hotel and we didn't have the heart to tell him no. Plus we really missed him. It seems he just needed some mommy and daddy time (and a little children's Tylenol) because by Wednesday early afternoon his fever was gone!  Phew, one situation resolved but little did we know what Kyleigh had in store for us the next day.

Wednesday morning we woke up to a phone call from the PSHU.

 "Hi Mr. Taylor it's Meagan from the PSHU. Kyleigh is fine now but she had an event a few minutes ago. She was doing a 'tongue clicking thing' and her eyes were glazed over. She wasn't breathing and we lost her blood pressure. We did have to do chest compressions and bag her but in less than a minute she was back like nothing ever happened. The entire event lasted less than 2 minutes."

After the room stopped spinning we went over to the hospital right away. The nurses said at first they suspected a seizure but the doctors were confident it was NOT. After much discussion and testing, it was determined that it was a result of extreme acid reflux! I KNOW RIGHT!?  I thought it was crazy too! I will try my best to explain how this is possible.   I will have to go back to my days in anatomy class to confirm my understanding but here is my best shot. One of the nerves in our body called the vegus nerve runs down the entire length of our body and is very close to the surface near the esophagus. When this nerve is damaged or injured or just plain stimulated, the body has a negative response such as a drop in blood pressure, decrease in respiration, or in Kyleigh's case all of the above. The nurse told me that sometimes even just suctioning a baby can cause a vagal response. So everything is fine but wow, what a way to start your morning!!

During the day Wednesday Kyleigh had a swallow study done. This is a video x-ray of her mouth, larynx, pharynx, and esophagus during a swallow to see if the liquid is "going down the right pipe".  In addition to finding out if she can swallow safely, the doctors wanted to find out if the anatomical structures were correct. They suspected there may be a fissure between the esophagus and larynx (wind pipe).  If this were true, it might explain why Kyleigh's belly fills with air so easily and why acid reflux may be so irritating to her airway.

The results of the swallow study were all good. Her anatomy is normal. No fissures. It also showed that her swallow reflex is normal and she does not aspirate (bring liquid into her lungs).  She does have difficulty with the oral phase of swallowing, meaning she does not coordinate the movements of her tongue well to bring liquid from a nipple to the back of her throat in order to swallow.  This is most likely due to her small and recessed chin.  This means drinking from a bottle or breast will be very difficult for her.  The good news is that this is a skill that can be worked on and even if it doesn't improve, as she moves on to solid baby food she should do just fine.  It was determined that the NG-tube feedings could continue (they had stopped after the event) and that Kyleigh should try to take 5ml of each feeding from a bottle!

The chest tube that was draining any extra fluid in Kyleigh's chest and from around her heart was supposed to come out Wednesday.  Thanks to the event of Wednesday morning, the doctors decided it was best to leave it in to make sure the chest compressions did not cause any bleeding etc. They also did a chest X-ray to make sure the compressions didn't damage the breast bone closure.  It did not.  All looked normal.

Thursday morning did not start as exciting as Wednesday.  No phone calls to scare us to death.  Instead, we called the PSHU to get an update.  Kyleigh did great overnight.  No drops in blood pressure etc. Only needed pain medication once, and best of all....the Chest tube was removed!!  This was a big deal because it meant we could finally hold our little girl.  We last had her in our arms at 7am Monday morning!

We got to the hospital to find her resting peacefully.  We did not want to wake her up just because we wanted to hold her so badly. So we waited....and waited...and waited.  This little girl just wouldn't wake up.  The nurse reassured us everything was fine. It was most likely because until now, Kyleigh had at least a little discomfort and was finally able to rest.  However, the nurse said that her Hemoglobin was low and Kyleigh was going to get 2 units of blood.  We were happy to see Kyleigh getting what she needed but we were not allowed to hold her while she was getting it. So we had to wait...again.

By this time, our little man Kevin had arrived to spend some time with us.  We swam at the hotel and went out to eat.  After a lot of quality time with him, he left with grandma and auntie Kim.  Even though we know he is well taken care of and loves spending time at grandma's house, seeing him leave each night has been really hard.  I miss my buddy!  I keep telling myself that neither of them will remember this, thank goodness. But I will!

So we made our last visit up to the hospital for the night and to no ones surprise, princess Kyleigh was sound asleep.  This time we didn't let her sleep.  The nurse helped us get her out of bed, making sure that all of the wires and tubes stayed connected and untangled and placed her in Bridgette's arms.  Instantly you could tell it was exactly what they both needed.  Kyleigh cuddled to Mommy and let out the biggest sigh.  The monitors were proof of what I like to call "Mommy Magic".  Kyleigh's heart and respiration rate slowed down and her oxygen level jumped from 90 to 100.  All signs that she could not be more comfortable.

I got to hold her too.  However, my experience was a little different.  She cuddled up but squirmed a lot and couldn't seem to settle completely. Then she very loudly loaded her diaper!!  Once she finished, I got the sigh Mommy got too.  When it was time to put her back, the nurse came to help.  This is when Kyleigh pulled out all the stops to show she is Daddy's girl.  She gave me the saddest puppy dog eyes, pouted out the bottom lip, and whimpered! SERIOUSLY!?  Even the nurse got choked up! I told her if I could sneak her out I would, but it just wouldn't be a good idea.  I think I was convincing myself more than Kyleigh.

We helped the nurse get her settled and set up her next feeding before we left for the night.  We are going to try to get some sleep.  We hope tomorrow will bring more good news and maybe move out of intensive care.

Thank you all so very much for your prayers and words of encouragement.  They help more than you will ever know.  I will attempt to post a blog of pictures.  Some people don't large to see pictures of Kyleigh connected to the tubes, wires, and machines so I will title the blog "Hospital Pictures". This your fair warning that if you don't like these kind of pictures...don't read that blog :)

Surgery Day!

Today was the day. Kyleigh had open heart surgery to repair the 3 heart defects. Before I go into all the details, SHE MADE IT THROUGH JUST FINE AND IS DOING GREAT!

We had to beat Christ Hospital at 6am this morning for a 7:30am surgery that was to take anywhere from 4-7 hours. The staff at Hope Children's Hospital was/is amazing. They made us feel as comfortable as possible and promised to take good care of our baby. At 7:35 they took Kyleigh into pre-op to get her ready.  This was the single most difficult thing I have ever had to do in my life. To hand her over to the surgical team, knowing what was about to take place, was excruciating! By 9:15am the nurse came out to tell us that they were already underway.  She was on the heart/lung bypass machine and they were beginning to repair the holes.

There were some complications before starting because they were not able to get in all the IV's they wanted but were able to put in a central line which was the most important one.  Then, they had trouble intubating her because she has a "tricky" airway. All in all in she was off to a great start.

To our surprise, only an hour later, the nurse came back out and said the holes were closed and they were getting her ready to come off bypass. They were hoping to have her off bypass and breathing without the tube before bringing her to the Pediatric Surgical Unit (PSHU). A painfully long half hour later she was off bypass and closed up.  They were beginning the process to extubate to see if she was ready to breath on her own and we were told we could see her in about an hour. True to their word, they came to get us an hour later to take us to see our little princess.  They were not able to take her off the ventilator at that time because they wanted to be sure she could support her own airway since her jaw is smaller.

As of now 4:45pm she is resting comfortably and waking up gradually.  She is still intubated but fighting it well. I will post another update when there is more to tell.  Bridgette and I can't thank you all enough for your thoughts and prayers. The support has meant everything to us and we know your prayers have made all the difference.   Princess Kyleigh is certainly a fighter and we are confident she will be off the ventilator soon and well on her way to recovery. In the meantime, more prayers certainly couldn't hurt.

Forgot the picture

In my last blog I said I would include a picture but I forgot to put it in.  So here it is, the reason for my everything:

Our New (but temporary)Normal

So by now you probably have guessed…Princess Kyleigh is HOME!!  Thank you all so very much for your love, support and prayers.  We still have a very long way to go but having our princess home makes things so much easier.  As any of you who have children know, having an infant in the house may make caring for her easier, but it certainly does not make ANYTHING else (like writing a blog) easier!  Bridgette and I were spoiled when we had our son Kevin because he slept through the night from day one.  Whenever he did wake up to eat, Bridgette was nursing so it was a quiet and relaxing time.  Kyleigh is very different in that she HAS to eat every three hours whether she is awake or not and she is fed through her NG Tube which is easy to do but requires some set-up and of course monitoring. Oh and I am very much a part of that LOL.  So needless to say we had some adjusting to do and during the time I used to write this blog, I am now feeding Kyleigh or getting some much sought after sleep. 

To be honest, I considered not writing anymore, Not because I don’t enjoy it and certainly not because there is nothing going on, but I felt since the flow of new information had slowed down, everyone knew what was going on by word of mouth.  I was very wrong.  I guess I didn’t realize just how far this blog reached and how many people come here to find out how Princess Kyleigh is doing.  It has been wonderful to run into people that I don’t see all the time and have them ask “How is your beautiful little girl, when will she be able to come home?”  “I have been checking your blog but there haven’t been any updates since she went to Loyola!”  Princess Kyleigh has certainly made an impact in so many lives.  So for those of you that don’t get the regular flow of information from immediate family and close friends, I apologize and this blog is for you J

Kyleigh was discharged from Loyola on April 4^th, just 2 days before her 1 month birthday.  Bridgette and I had to prove we were ready so to speak by taking a few “classes” at the hospital.  We had to take an infant CPR class; verify the prescriptions were correct and demonstrate that we knew how to administer them; demonstrate that we knew how to feed her through the NG-tube; and lastly we had to learn how to insert the NG-tube in the event Kyleigh pulls it out.  Learning to put the NG-tube in was a very emotional and unpleasant experience but Bridgette and I both got through it and while, we haven’t had to change it yet without the help of a nurse, we are much more comfortable with it now.

As the title of this blog states, we definitely have a new (but temporary) normal.  Kyleigh’s castle has many visitors who come to check on her.  There is a home health nurse that comes 1-2 times a week to weigh her and see how she is doing overall.  There is also a public health nurse that comes once a month to check on all of us, but especially Kyleigh.  Since Kyleigh was in the NICU her name is given to the state as an “at risk” baby.  The nurse is required to visit (whether we like it or not) and provide us with resources for support for Kyleigh and the family.  It is actually a very nice service so thank you to all of you Illinois tax payers LOL.  Once a month the Home Health Company visits with boxes of feeding supplies, most of which we do not need.  I have contacted both my insurance company and the home health agency to try to change the order, but I am told this is what gets sent to “NG-tube patients”.  What a big waste of money and resources!!  My love/hate relationship with the insurance company and the home health agency can be a topic for a different blog LOL.  Lastly, Kyleigh will be visited regularly by some Early Intervention Therapists.  They are all coming out on May 17^th to complete their evaluation and determine which of them Kyleigh will need.  I am sure there will be many blogs to come about this since I have already voiced my opinion to the case manager when I found out that the one constant person on Kyleigh team will be a Developmental Therapist.  For those of you that do not know, there is a not so pleasant relationship between OT’s and DT’s.  Based on their title, you are probably thinking they are perfect for Kyleigh, and to a certain extend you are correct.  The problem is in order to become a DT one simply needs to take certification course to become licensed as a DT.  Meaning, no matter if you background is in medicine or auto mechanics you can become a DT.  So I have already told our case manager that I expect to see background information on any DT working with Kyleigh, not just their DT license.  In addition, the DT profession is constantly trying to do the job of an OT and infringe on our practice act but that is neither here nor there in this particular situation.  If Kyleigh needs a DT, she will have a DT.  I will just make sure their background is appropriate!

Over the few weeks Kyleigh has been home, her breathing has changed pretty dramatically, in that she is breathing faster and harder, especially when she is eating.  It is to the point now that she will just go to sleep while she is eating because it is too exhausting to participate.  We told this to the cardiologist during our office visit and he agreed but said, as difficult as it is as a parent to see your child struggle, we should try not to worry too much.  According to him, Kyleigh’s is actually doing much better than most babies with the same heart condition.  He pointed out that babies with this condition’s heart and lungs are working as though they are running a marathon all day long.  Therefore Kyleigh is burning so many calories that it is difficult for her to gain weight.  However, we are happy to say that Kyleigh is gaining weight very nicely and the doctor was even impressed that she has the typical “chunky” arms and legs you would see on any other baby.  I did tell the cardiologist that if I knew anything about nutrition, how to gain weight was it!! LOL! 

Kyleigh gaining weight is absolutely a success to be celebrated.  It has not been easy at all.  Aside from Kyleigh, Bridgette is the true champion in this regard.  She works with the NICU nutrionist to come up with the appropriate mixture of breast milk and formula so that Kyleigh gets the exact number of calories per day that she needs to be able to gain weight.  If you were to come into our kitchen you would see that it truly is a science.  In fact, my best friend Anthony said that our kitchen looks like a mad scientist lab!!  Between the math problems scribbled all over pads of paper, to the different types of formula being used, all while trying not upset Kyleigh’s stomach. Bridgette is a hero in my eyes.  She just tells me which bottles of milk to use for the feedings so I don’t screw anything upJ.  Proof once again how lucky I am to have such a great wife and how fortunate our children are to have such an amazing mother!!

I could go on and on about all the details of our daily life right now but I know what you are really wanting to know is when will Kyleigh have surgery?!  We were finally able to schedule her surgery for May 20^th.  She will have the surgery at Advocate Christ Hope Children’s Hospital.  The surgeon will be Dr. Ilbawi.  We have many pre-op appointments leading up to that day and that’s probably a good thing because we are already a nervous wreck!!  Many of you have asked/offered to come to the hospital to be with us while we wait for the surgery to finish.  Thank you very much for your kindness and for being so thoughtful.  Bridgette and I ask that instead of coming to the hospital to be with us, you focus on sending positive thoughts and praying for Kyleigh that day.  For family, we may have a “satellite waiting room” set up at GG’s but we will keep you posted on that. 

That is it for now!  Overall, things are going as well as they can.  We have adapted to our new, but temporary, normal.  Kevin LOVES his baby sister and they really love spending time together.  Thank you all again for all of your love, support, and prayers.  Please keep them coming!  Here is a recent picture that I shared on facebook for those of you that may not have a FB page.

Love,

King James (cause King Jim just sounds weird), Queen Bridgette, Prince Kevin, and Princess Kyleigh

Journey to a New Kingdom

It has been a VERY busy few days so I haven't had much opportunity to Blog.  So much has happened so I hope your ready for another long one!

On Monday, Princess Kyleigh took a journey to the Kingdom of Loyola!  We were all sad to leave the Kingdom of Resurrection and will miss all her loyal subjects that took such excellent care of her but the new kingdom had more servants that were trained in the specific things Princess Kyleigh would need.  Her carriage arrived with a very special servant named Nancy who knew exactly how to make sure princesses are safe on journeys between kingdoms.  Here is a picture of her carriage.

Once we made it to our new temporary home at Loyola, we really needed our seat belts because things got moving very quickly.  Everyone was and has continued to be extremely nice.  Within three hours of Kyleigh's arrival, she already had scheduled visits from a Neurology; Nephrology; Cardiology; Speech Therapy; Occupational Therapy; Ear Nose and Throat Specialist; Genetic Specialist; Respiratory Therapy; and of course Neonatology.  Our heads were spinning from so many questions but the staff was excellent at trying to help us navigate through everything.  A social worker set us up at the Ronald McDonald's House which is on the hospital campus.  It is an amazing place and Bridgette and I have already said we want to give back to this amazing facility.  That, however, is for a different time and blog!!

So over the last couple of days, Kyleigh has had visits from almost all of the specialists mentioned above.  She is tolerating all of her new "staff" very well.  The quickest way to update you on everything is probably to just go down the list.  So, here it comes:

Respiratory Therapy: We didn't have our own respitaory therapist at Resurrection so this was a little new for us.  When we were at Resurrection, Kyleigh's Oxygen saturation (% of oxygen in her blood) was usually in the high 80's to low 90's (100% is perfect).  She would occasionally dip down into the 70's but would quickly recover on her own.  There were a few instances that she would get so mad or worked up over somethig that she was unable to catch her breath and would stop breathing.  By not breathing I mean, she stopped taking breaths or couldn't get enough oxygen into her lungs.  The nurses would hold an oxygen mask near her face to help her get her level up and she would be fine.  These episodes all but disappeared once she started taking the water pill (lasix).  The cardiologist and neo-natologist at Res were comfortable with the occasional dips into the 70's because 1) she was recovering quickly on her own and 2) using oxygen was not ideal for cardiac babies like Kyleigh because it can cause shunting.  This where blood rushes to the lungs.  For you and I and most people with healthy hearts, 100% oxygen in our lungs is great and can even cause a rush or a high because the blood rushes to the lungs to carry this pure oxygen all over our body.  For Kyleigh, this would be dangerous because her heart is working to hard to pump the blood and the oxygenated blood is mixed with unoxygenated blood thanks to the 2 holes in her heart.  At Loyola, the respiratory therapist was a little less comfortable with the dips into the 70's.  For a brief period of time, they put Kyleigh on an oxygen/room air blend which brought her saturation up to the high 90's.  However, Kyleigh was used to working hard to keep that number up so she continued to bring it up and often stayed at  100%.  As I mentioned above that is not good.  The poor respiratory therapists worked for hours to try to find the right balance for her only to have the cardiologist come in and say...the risk of shunting is to big...no oxygen unless she can't bring the numbers up on her own.  Kyleigh continues to prove she can do it and keeps her numbers in the high 80's or low 90's on room air.  Mid 90's when cuddling on Daddy's chest :)

Cardiology:  The holes in her heart have not changed.  He is in agreement with the original plan that Kyleigh will need surgery when she is 2 or 3 months old.  This cardiologist is not the nicest man we've met (ok he's an ASS) but he knows his stuff and that's what counts.  The best part is that he told us the only surgeon he would send us to for Kyleigh's heart surgery is Dr. Ilbawi!!  Those of you that don't recognize this name, he is the #1 pediatric heart surgeon in the country, possibly the world!!  Our plan was to get discharged from Loyola and change medical groups in the hopes to get somewhere that Dr. Ilbawi would be able to see us.  We were fortunate to have a friend of a friend connection we were going to use but now....we don't have to!!!  What a great feeling when things fall into place.  God's plan in action.  So very grateful for this small miracle!

Nephrology/Urology:  The hydronephrosis (swollen kidney) is practically non-existant.  What little swelling that is present will most likely work itself out but at the very least does not require any intervention at this time.

Neurology:  I admit, I was worried about this one.  I tried very hard to turn off the OT in my head whenever I saw Kyleigh but I could not remember what was normal or what Kevin did as an infant.  For example, did Kevin sleep as much as Kyleigh does?  Do her eyes seem to be rolling back or in seperate directions?  Why does she occasionally "shiver".  Well my fears were relieved when the neurologist said there are no concerns at this time.  I have to emphasize the "at this time".  Right now Kyleigh's brain looks like a typical 3 week old baby brain.  However, the doctor was very cautious in saying that everythig was "normal" because we already know that with the chromosomal abnormalitiies things are most likely NOT completely normal.  We just don't know what will change or how but for now things look good and we have to celebrate that!

Speech Therapy: Speech feels that Kyleigh will be on the NG-Tube for quite some time.  At least until her surgery and probably for a while after that until she learns and develops the skills to drink more by mouth safely.  She is still working on it and is making progress.  Today for example (Friday) she took 12 cc's by mouth with no trouble.  The speech therapist here is wonderful and has a good plan in place for Kyleigh.  It will be a long road but Bridgette and I feel confident that Kyleigh will learn to eat by mouth.

Occupational Therapy:  I am embarrased to say that the OT has not given us a report yet.  This OT is giving my profession a bad name :(.  Ok not really, she is actually very nice and I have seen her working with other babies.  Unfortunately she has not spoken directly to us but the nurses have told us that she is being seen regulalry and her muscle tone continues to improve!!  Both the speech and occupational therapist will be setting up a family service plan with early intervention and they will be included physical therapy as well.   This means Kyleigh will be recieving OT, PT, and Speech at home.

Ear, Nose, and Throat:  The doctors and nurses hear asked if Kyleigh's cry always sounded so quiet.  For those of you that have not had the chance to hear it, her cry is not load and sounds very raspy.  In addition, when the nurse tried to switch the NG-tube to the right nostril, it would not go in.  For these reasons, an ENT consult was ordered.  We were happy to have this consult because the speech therapist told us that even though Kyleigh does not have a visible cleft palate, it is possible to have a cleft "soft" palate meaning the roof of her mouth, towards the throat could have a cleft portion which could be contributing to her feeding difficulties.  As much as we would have loved to have a tangible reason for the feeding difficulties, the ENT specialist did a scope and found absolutley NOTHING wrong!!!  We were much happier with that!

Genetics: We have been told the geetic specialst here at Loyola is one of the best around.  She LOVES to do research and enjoys explaining things so that families understand as much as they can.  Kyleigh saw the geneticist today and we gave an extensive family history.  So to our families.....let's just say after having to sit and think about every issue or abnormality we know of in the family, I can easily say we are MESSED UP!!! LOL. Just kidding.  We don't know any more about this at this point.  The doctor is meeting with us tomorrow (Saturday) so more prayers that Kyleigh won't have a difficult life would be much appreciated!  Bridgette and I are nervous, anxious, and scared but we both know that the truth is...it doesn't really matter.  She is our beautiful daughter and she is exactly how she was meant to be.

Neonatology:  The neonatologist at Loyola is great.  She has referred to Kyleigh on many occasions as a healthy baby!!  Especially when compared to the other babies on this unit.  She is very much like the ring leader at the circus.  She knows what she wants done and how she wants it done.  SHe coordinated all the consults and anytime she saw Bridgette and I at the bedside she came to give us an update.  The best update she gave us was Wednesday!  She told us Kyleigh is just about ready to GO HOME!!

As of today (Friday) Kyleigh is pretty much ready to come home.  She will be coming home with a feeding tube (NG) and monitors.  She will only need to be on the monitors when we are not directly watching her or when she is sleeping.  Hopefully this will only be until she has her surgery.  Before they will release her to go home Bridgette and I have to take and infant CPR class and an NG-Tube placement class.  We will have to demonstrate we can correctly insert the tube first on a doll then on Kyleigh.  The company that issues the monitors has to come out to train us that as well.  Kyleigh has to pass one more test which is the car seat test.  She has to be able to sit in the car seat for a period of time (we think 90 minutes) with acceptable saturation levels.  When all of that is done (hopefully Wednesday)....Princess Kyleigh can make her journey to her Castle where the King and Queen and especially Prince Kevin are anxiously awaiting her arrival.

Your prayers and support have meant so much to us.  We have many more adventures to come with Princess Kyleigh so please keep the prayers coming and I will keep you updated as much as possible.

Here are a few pictures from the Baptism and the most recent picture of Kyleigh!

Discouraging News; Pushing Forward

Fair warning, this is a long one!

Just when we thought things seemed to progressing in the right direction, Princess Kyleigh has other plans. On Wednesday, Dr. Torre (the neo-natologist) told us that while Kyleigh has made great progress while she has been here, he feels she isn't progressing as well or as quickly as he would like. We felt that more comprehensive testing is needed to determine what might be preventing Kyleigh from eating by mouth and why she isn't as feisty as she should be. Resurrection is not a children's hospital so they are not equipped with the various specialists she would need for the testing. Our options where to discharge her and try to schedule all of the various testing she needs as an out patient or transfer her to a level 3 Children's hospital.  Discharging her would not only be risky, because truthfully she is not ready to go home, but would also take weeks to schedule and even more time for results before we even begin to start talking about interventions and plan of care. It was obvious to us the best option would be to transfer Kyleigh.  The question was where? Cue the dramatic music as the fight with the insurance company begins!!

Since all of our doctors have always been through Resurrection, it just made sense that the medical group we chose included Resurrection.  Me being the responsible father that I am, enrolled Kyleigh on our insurance the day after she was born and made sure she had the same coverage as the rest of the family.  After all, we have great insurance and great coverage.  As we began to realize this need for a transfer we of course thought of Lurie's Children's Hospital (formerly Children's Memorial). Our medical group had other ideas. They prefer either University of Illinois Hospital or Loyola University Medical Center.  Both places are fantastic hospitals but not want we wanted for Kyleigh. So my question to the insurance company was "What do I need to do to get her to Children's"?  There were 2 ways to possibly make this happen.

The first was to have Kyleigh's pediatrician write a letter of medical necessity stating that Children's has something that Kyleigh needs that the preferred hospitals do not. First problem, Kyleigh's pediatrician has seen her MAYBE 2 times because she is under the care of the NICU team.  The second problem, we don't know what Kyleigh needs yet to be able to say Children's is better than the other 2 hospitals....that's why we want Children's!  Ok no problem, there is another option right!?

The second option is to change medical groups for Kyleigh and choose one that includes Lurie's Children's Hospital and the doctors.  We knew that because we have HMO they would probably say that we have to wait until the first of the month.  Great! April 1st in quickly approaching so we can do that.  Oh wait, no we can't because they don't allow you to change medical groups while the patient is "In-patient status"!  The insurance company told me, and I quote "We can't do it while she is an in-patient because it WOULD SCREW UP THE BILLING"!  Now I know insurance companies are all about making money but to actually say to me that their billing is more important than my daughters best interest?!? Needless to say she did not like what I had to say after that and she was very lucky I was at work near children otherwise it would have been even more unpleasant for her!

Bridgette and I did some research and talked at great lengths about our options. We came to the realization that while our first choice isn't an easy option, it is not as though we are having to choose between a hole in the wall hospital and Lurie's Children's Hospital.  We have 2 amazing hospitals to choose from both of which would provide Kyleigh with excellent care.  So our plan is to have her transferred to Loyola and when she is discharged we will change her medical group and get her into Children's for the cardiac follow up and care.

Unfortunately that was not the discouraging part of this post.  On Thursday Kyleigh had an MRI which was done to be sent to Loyola with her.  We received the results of the MRI and the 2nd genetic testing yesterday.  Kyleigh's MRI showed that the myelination (coating/insulation around the neurons in the brain) is abnormal.  The genetic testing showed that there are abnormalities on chromosome numbers 3 and 7.  I will attempt to explain what all of that means but first, a little warning.  I know most of you reading this either have medical knowledge, wish you had medical knowledge, or pretend you do ( you know who you are) so PLEASE DO NOT GOOGLE CHROMOSOME 3 AND 7!!!!!! What you find will scare you to death and make you think Kyleigh has have every scary diagnosis under the sun!  That is simply not true.

First I will try to explain the MRI because that is a little easier.  The myelin on every ones nerve cells (neurons) is like the rubber coating on a heavy duty extension cord and the signals our neurons "fire" are like the electrical current in that extension.  Kyleigh's myelin is not as good as it should be.  I know that sounds vague and that's because it is.  At this point that's all we know until we get to Loyola and the pediatric  neurologists do more comprehensive testing.  So once we again we have an answer that only lead to allot more questions.  What I can tell you is that when the myelin coating is frayed or missing the neurons can miss fire or not fire at all, just as a frayed extension cord can spark or short out.  This can cause anything from a simple eye twitch to full on seizures (neither of which have been seen in Kyleigh) and everything in between.  So as with everything else...we have to wait and see.

Second is the chromosomal abnormalities.  Kyleigh has an omission (a missing section) on chromosome number 3 and an omission and a duplication on chromosome number 7.  We are told this is rare and that so far the doctors don't know what it will mean for Kyleigh.  In fact, the technology used to complete this test is only 7 years old.  What we do know is that the company that does this testing keeps a data base of the abnormalities they find.  So they are searching the database to see if anyone has has ever been found to have the same abnormalities.  No one has indicated that these abnormalities are life threatening or that they will drastically decrease her life expectancy.  Most likely it means that there will be potential problems in Kyleigh's development.  We don't know to what extent or in what areas.  I don't mean to make it sound like it is not a big deal because this is potentially a major issue in that Kyleigh's development may be greatly impacted and our life may change dramatically.  It is potentially devastating news.  However, it could also be nothing more than we are already seeing.  Most likely it is somewhere in between.  We will just continue to pray for the best.

Over the last couple of days Kyleigh has seemed to regress a little bit in eating by mouth.  She has only eaten a few cc's by mouth and has shown little interest in the bottle at all.  She has been gagging allot when the bottle is placed in her mouth and chokes a little bit when she does take any milk in by mouth.  Our theory is that they have recently added a fortifier to the breast milk to help her gain weight and that this either upsets her stomach or makes it taste different.  Since no one plans on doing a taste test, we probably will never know LOL.  In an effort to hopefully help Kyleigh calm down and relax a little bit, last night the doctors stopped the by mouth feedings for the next couple of days.  In less than 24 hours of stopping the by mouth feedings, Kyleigh is like a new little girl.  She was very alert today and "feisty" which is what the docs wanted to see.  She was interacting with nurses and mommy and daddy when we were there.  She stayed awake for an entire hour with us.  The nurses and NICU doctors all agree that the clearly trying to eat by mouth is exhausting for her and because she is working harder (her heart has to beat more often) to maintain a functional level of oxygen in her blood she just runs out of energy and needs to sleep.  Unfortunately, the cardiologist says this is not true.  We say, majority rules!! :)

So I guess the real update is that Kyleigh is OK.  She is stable and doing well.  She may or may not have allot more going on than we once thought but we are transferring to a children's hospital to hopefully get answers.

Clearly we chose an appropriate name for this blog....The Adventures of Princess Kyleigh continue!!!


Oh by the way, many of you have politely suggested that we have Kyleigh blessed or maybe even baptised.  Our plan was to have this done before any surgery took place, however, with the decision to transfer Kyleigh being made and the impending plethora of testing that will be taking place, we are having Kyleigh baptized tomorrow at the hospital!

Thank you all again for your continued love and support and especially your prayers! Please keep them coming.