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!