Thursday, August 9, 2012

Up on the Rooftop

In March of 2012 Logan had surgery to close his cleft palate.  We were quite nervous for the little guy and dreading the pain it would put him through as his most complicated surgery to date.  However we were also excited for him because it would allow him to do so many new things. (Although food out the nose may become a lost art...)  With his palate open Logan could not experience the joy of foods beyond liquids and purees even though he was already fifteen months old. His ability to make sounds was limited to vowel sounds, speaking whale, and the consonant m.  (His ability to scream however remained unhampered.)   He also did not have the ability to suck meaning his bottles were still delivered fully by us squeezing the liquid into his mouth with his adaptive bottle. He also needed all of his liquids thickened to prevent aspiration and the surgery gave hope this may no longer be necessary.  
Logan was actually in a really great mood the morning of the surgery despite having to get up early and skip his morning bottle.  He played happily until it was time for the doctors to take him.

Since Logan was getting older and more aware Seth was able to go back with him when they put him to sleep for the surgery.  He just needed to....
(Choose your sappy punchline)
A) Be one with the marshmallow
B) Put on his space suit
C) Dress up like his third grade lunch lady
D) Look like a dingus

He is wearing his ball cap too...  Pick D! Pick D!

My parents were in town for a visit and to help out with the surgery so Reyna was able to sleep in that morning.  She was also able to have fun in places other than a hospital room during Logan's stay. (Although over the months we have found several creative ways for her to do so while she has found creative ways to get every possible germ in the room on her body.) Reyna and my parents all joined us at the hospital shortly after Logan's surgery began.  We tried to distract ourselves in the hospital library, cafe, and gift shop.  Trying not to think about the surgery was as simple as trying to force an annoying "one hit wonder" out of your head.  Then it became as festering as MMMbop when the surgery went an hour longer than the already generous time frame.  Luckily just before I went into panic mode Logan's surgeon came out and shared the details.  From what he shared the surgery went quite well and he felt confident the repair was going to hold together firmly.  The one downside was in order to ensure this strength he had to leave a small hole at the front area of the palate.  The good news was that this would likely not impact speech.  The downside was that feeding would still be impacted, although likely to a lesser extent.
We hold our surgeon in the highest regard and know he did the best work possible.  His work on Logan's lip proved to be exquisite and we knew his palate repair would be as well.  As he shared the details it became clear just how challenging Logan's repair really was.  Leading up to the surgery he consulted with several other surgeons including having three others physically look at Logan's cleft for their input.  When reviewing the surgery with us he shared that even during the procedure he consulted with another surgeon for additional feedback.  Logan's surgeon travels internationally each year to perform cleft surgeries and other plastic surgeries in areas of poverty.  Even with his vast experience he has shared on several occasions that Logan had one of the most unique clefts he has ever seen.  Following his surgery he shared that the width of Logan's palate was the widest he had ever repaired at three centimeters across.  He commented with a tone of disbelief that he once considered a two centimeter clefts to be wide.  Taking this all in account we were so grateful that his palate was able to be closed fully with just one small gap.  Once again our little guy found a way to be especially unique, our one in a billion (or more).
When we first were able to go see Logan it was a relief but also rather difficult.  There was the typical swelling but beyond that it was clear he was in pain and possibly hungry as well.  Although the doctor warned us there would be a string through his tongue it was still jolting to see.  The string was there in case of any sudden swelling as it allows them to pull his tongue out of his mouth to provide a clear airway. Not the stuff dreams are made out of, at least the pleasant ones.  Although grateful to be able to hopefully give him some comfort, it always hard to also see your child look so distressed.  Soon after I arrived though they gave him a small dose of morphine and he relaxed.

Although he was given morphine for pain it took awhile for him to be transported to his room and then it seemed to take forever for the nurses to get all his orders.  Until they had his orders they could not give him more medicine.  By the time they had the orders Logan was so distressed that he pushed out blood into his IV and it could no longer be used.  So now he was in pain and without a way to get more morphine.  What followed goes down as the hardest experience with Logan up to this point.  There had been bad times in the past but nothing like the next hour.  His first IV that was lost was in his ankle area. His nurse proceeded to try the other ankle and failed.  Then she tried another location.  When she failed again she asked another nurse to try.  As they continued to try several other places and to repeatedly blow veins Logan was in such intense pain and discomfort that he needed to be held by Seth and I as well as at least another nurse as they made him a human pincushion.  After trying seven different locations (yes seven) they decided they would call up one of the nurses that puts in IV's during helicopter transports.  Eventually someone else came but it was a NICU nurse instead.  She tried another location and failed.  Up until then they were avoiding putting one in his head since he was so mobile and had a good chance of loosing it again but they finally gave up and the NICU nurse got it to take in his scalp.  Then Logan finally got some morphine.  At least the nurses were wise enough to give him what they called the "good dose" and he was quickly comfortable and asleep.  

The relief of seeing him finally out of pain was indescribable and at first I thought I might faint as it washed over me.  I know during that time I could have stepped out of the room, but I would still know the pain he was in and I truly feel that having Seth and I there to talk to him and to have familiar hands holding him helped at least a little, even though I still felt so terribly helpless watching him. It took months after this experience for Logan to not be startled to screaming by sudden movements or touches.  It was heartbreaking.
  Over the next couple of days Logan gradually improved and was able to eat a little bit from a syringe.  After his second night in the hospital he was actually eating pretty well, taking about half of his normal amount and sometimes even more.  We were so impressed with our little fighter and felt for all he had been through, and for having his mouth full of stitches this was simply amazing.  He was also still rather playful at times and it was so wonderful to hear him laugh again.

Each day his IV got more tape and glue.
There was no way we were going to let this IV be lost.

Despite his remarkable progress, as with his lip surgery, the hospital doctor (who I happened to see was the same doctor from his lip surgery, not because he came to actually see us, but because I caught a glimpse of him consulting with Logan's nurse) said Logan had to eat the full amount he was eating at home prior to surgery before he could go home.  We prepared ourselves mentally to be there for at least another week.  Yet then the most wonderful thing happened.  Logan's surgeon checked in on him and told the hospital he could go home if he was was eating at all from his bottle.  Which he was doing!  Rather well!  So after three nights in the hospital Logan got to come home.  There we weren't even a little shocked that his recovery went much faster than it did when he was stuck in the unfamiliar surroundings of the hospital after his lip surgery.  A surgery that typically has a much faster recovery than a palate repair.  A surgery that for many kids is outpatient.  When we left the hospital I was dying to skip past the jerk hospital doc with Logan in my arms but (as usual) he was nowhere to be seen.  I skipped anyhow.  Our baby was home again.

Oh, and food out the nose...not a lost art.  More on that soon.

No comments: