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!