Sunday, October 23, 2011

Things McKenna can do with a cast

1.  Run run run
2.  Ride a tricycle

 3.  Carry a baby doll by the foot

 4.  Eat like there's no tomorrow

 5.  Hug a bunny

6.  Empty out a tissue box into the crib
7.  Make a thumb magically disappear 

8.  Drink out of a sippy cup

9. Chase a kitty

10.  Open a present

11.  Dress up like a gnome

12.  Celebrate Daddy's birthday

13.   Frolic in the leaves

14.  Crawl up stairs holding a rattle

 15.  Be 100% adorable

And we still have ten more days to go....

Monday, October 10, 2011

Surgery Over!

          We are thrilled to say that McKenna came through her surgery today with flying colors.  It was a long day for everyone, but things went very well.  Her surgeon was very pleased with the results of the surgery and he showed us several pictures of her fingers with the stitches in them before they put the cast on- they look great!  She finally went in for anesthesia at around 1:00pm, and we spoke to Dr. Taghinia post-op at about 5:30.  Then they did the echo and moved her to the PACU, and we were able to see her around 6:30pm.   She woke up pretty disoriented and in a decent amount of pain, so she turned into Superman in our arms and was quite impressively trying to get loose, move around, etc.  Two doses of morphine helped, and she is now sleeping soundly.  We are hoping that she can now sleep for most of the night, and that her body can get the rest that it needs.  They put a pain block in her wrist at the end of the surgery, so that she could not feel her hand, but that will be wearing off soon.  Hopefully the pain management will work well and she won't feel it too much.  The surgeon said that the first two days will be the hardest, and that her pain will decrease significantly after that.  She also had quite a bit of nausea and vomiting after she woke up, and hasn't been able to keep any fluids down yet, so she is still on IV fluids.  Hopefully that will have improved by the time that she wakes up.
          I think the only funny moment of today occurred while we were in the PACU, and she started to vomit (no, that's not funny, wait for it...).  She clearly had a bunch of crap in her chest and it was causing her to cough and gag and puke.  So after a few rounds of this, Brett asked the nurse to listen to her chest again, to make sure she didn't aspirate or have any fluid in her lungs.  I don't know if she didn't hear him, or just didn't do it fast enough, but I turned around a few moments later and Brett had whipped his stethoscope out of his backpack and was listening to her chest quickly while the nurse was facing the other direction.  Who carries a stethoscope in their backpack anyway???  I was astonished.  And then, I was not.  I mean, that's Brett.  Lol.  What an awesome daddy, listening to her lungs and making sure everything was just right.  He threatened (half kidding) to put her IV himself last night when we were waiting and it was taking too long.  We are so lucky to have him.  And his antics make us laugh, which is also a plus.
          So, anyway, Dr. Taghinia said that if all goes well, we will return for a follow up in three weeks, at which point the cast will be removed and they will make splints/spacers for her fingers.  (She is currently in a bright pink cast that completely covers her fingers except for her thumb and it goes basically up to her shoulder).  We initially thought the cast was going to be on for four weeks, so three is much better!  And, we found out that the splints are only to be worn at night, so that is MUCH better! 
           The biggest concerns for now are that there is no bleeding on the graft sites and the grafts heal well, that the cast stays in place and her fingers are completely immobilized until fully healed, and that the fingers heal without a lot of scar tissue.  Dr. Taghinia discussed her finger bone structure quite a bit, and it appears that we will probably have to do another surgery down the road to remove a part of her bone that is causing her finger to grow crooked.  She is actually almost missing the middle bone of that finger, and he would remove it completely.  We won't know what her finger function will actually be like for several months, so we will have to wait and see.  Its likely that her motion and use will be limited in that finger, so hopefully she will be right-handed and will learn to compensate.  But, that will be another bridge to cross another time....
           For now, we are waiting to meet with Dr. Newburger, her cardiologist, in the morning to discuss the results of her echo today (which looked good, apparently, but we don't have exact results) and the plan for continued anti-coagulation (asprin or asprin plus plavix).  She is back on the heparin drip tonight, and will restart the asprin in the morning. 
        Brett is at the hotel, trying to catch more than the three hours of sleep he got last night, and McKenna and I are settled into the room here at the hospital.  Hoping for a quiet, restful night for us all.
        We are so incredibly thankful that McKenna came through the surgery well and that all appears to be as it should be.  We had an amazing team of doctors working very closely from both cardiology and plastics, and the result of all of that work was a successful day.  We continue to pray now for the next stage of this process and are so thankful for so many joining us in prayer. 
         Our sweet girl was a rock star today.  And she's got the cast to prove it.

Waiting waiting waiting...

          Brett and McKenna slept on and off last night, with some periods of being awake due to checking vitals and little roommates crying.  :(  I slept ok in the hotel, but kept waking up wondering how they were doing...  She was awake at 3:30am, so she got to have one last bottle of milk before being cut off at 4am.
         This morning, she has been drinking lots of juice and trying to play.  She watched an Elmo movie for a while, and we read lots of books.  They took her off the heparin drip at 8am, and started her on IV fluids at 10, so she had two hours of freedom from wires and tubes.  We played in the playroom and walked around the halls for a while, taking advantage of the time while we could!  She was actually trying to run down the hallway, lol.  That's our girl.

         Its 10:30am, and she just fell asleep in the crib, which is good timing since she is connected to the IV anyway.  We expect them to have us go down around 11:30am, with an estimated surgery start time of 12:00.  Dr. Newberger's assistant Annette stopped in this morning to check in.  Dr. Newberger (McKenna's cardiologist) just got back from India this morning, and she will be in tomorrow.  Annette is making sure that her echo gets done today, so that Dr. Newberger can make a decision about her meds for tomorrow.  Depending on the results of the echo, she will hopefully either be on asprin and plavix, or just asprin.  Either way, no more lovenox injections, so that is a MAJOR celebration!
        Dr. Taghinia expects the surgery to take 4-5 hours, due to the need for precision in separating the muscles, ligaments, veins, etc. and getting the grafts prepared and in place.  The echo will happen post-surgery, so we are anticipating not seeing her until around 4:30 or so.
         Lots and lots of waiting.

Sunday, October 9, 2011

Children's Hospital Boston, Day 1

      Well, its late, and I'm exhausted, but I wanted to share a brief update before crashing.  We got here early today and were able to have a quick lunch and visit with my brother, Brian, and my parents (who were also visiting Brian).  We got to see the most awesome new gym in Somerville, MA, Commonwealth Crossfit, which is my brother's fantastic new space!  Looking forward to seeing it open very soon!

       After that, we checked in at the hospital, and were up in McKenna's room on the Cardiac Floor by around 3pm.  She is sharing a room with a little boy from Tampa who had open heart surgery three weeks ago.  People come from ALL OVER to be at Children's- we are so lucky to have it close by.  Thankfully, once her initial check in was done, she didn't have to stay in her room.  So we took her to play in the playroom, went for some walks, played in her room, etc.  It made it much easier not to have her stuck in the crib, since she wasn't on any IVs or monitors yet.  Her IV for the Heparin drip was supposed to have been in place by 7:30 or so, but the IV team was swamped and finally someone from the floor agreed to do it.  While we were waiting, she ate some dinner in the room and was exhausted bc of course she didn't take any afternoon nap.  We kept her awake for the IV placement, because otherwise we were sure she would fall asleep and then have to get woken up right afterwards for the IV.  So by the time we went for the IV at around 8:30, she was sort of beyond herself tired......
        Thankfully, the nurse was able to get it in on the first try, yay!  McKenna was NOT happy about the process, but at least it went quickly.  They were also able to do her blood draw with the same stick, which was great.  Much better than when she was sick and it took 15 or 20 tries to get an IV in!
          We gave her a bottle right after that, and she was asleep in about five minutes.  Hopefully she will sleep through the night and not have to get woken up a bunch of times for vitals, etc.  Brett is staying in the room with her tonight, and I am at our hotel across the street.  Its my first night EVER sleeping in a different place than her.  Weird.  But I am so tired, I think I'll actually be able to sleep...  There's only room for one person to stay over with her, and since we are sharing a room, it is really quite crowded.  Brett can monitor the heparin drip tonight, and I will stay over with her tomorrow night.
          She can't have anything to eat and no milk to drink after 4am, so its only juice and water in the morning.  Her surgery is scheduled for noon, and she is the third surgery of the day for Dr. Taghinia.  We are hoping this is so that he can get two easy, short ones out of the way and then spend the rest of his day focused and not rushing through McKenna's procedure, which is obviously the most complicated and longest.  They have estimated that it will be 4-5 hours for the surgery, and they are also going to try to do an echocardiogram while she is still sedated, so it could be quite a long process.
        So, tomorrow morning she will come off of the Heparin drip around 8am, and we will entertain our hungry girl the best that we can until its time for her to go in around noon.  Thanks for all of your prayers and encouragement.  We appreciate it so much and so does McKenna!
      And now, sleep.  Tomorrow is going to be a long day.

Saturday, October 8, 2011

McKenna's Syndactyly Release Surgery

        Tomorrow morning, we are heading to Boston Children's Hospital for McKenna's hand surgery, which will be Monday, Columbus Day, October 10th.  We have to get there a day early for her pre-op tests.  Also, we are discontinuing her Lovenox injections after tomorrow morning's dose (hopefully forever, yahooooooo!!!), so she has to go on a Heparin drip tomorrow evening before the surgery.
         When McKenna was born, no one noticed or mentioned that two of her fingers were joined together.  After she was with us for about a half an hour, I noticed.  I'm amazed that I stayed calm, but I did.  I saw that they were joined and said to Brett, "Hey honey, two of her fingers are stuck together!"  We told the nurses and the Dr., and they didn't really react much (which seemed kind of odd at the time, but I'm sure they were hoping we weren't going to completely freak out). 
            They told us it was the most common hand birth defect.  It happens to 1 in 2500 babies.  (Not that common, really.)  And its often a genetic or familial trait.  (We don't have anyone in either of our families who have had it).  Its more common in boys. (She's obviously a girl).  And its most often the space between the middle and ring finger that is involved.  (For her, its the middle and pointer finger on her left hand).  So, no one can tell us why this happened to her, it just did. 
           It happens between the sixth and eighth week of gestation.  That's right, SIXTH AND EIGHTH WEEK.  When babies are growing, they initially have all fingers connected.  And then an enzyme is released that separates the skin.  And this happens before the eighth week of pregnancy. Its amazing to me that this happens so early in the process.  So, for whatever reason, for McKenna, the enzyme didn't quite do its job, and her middle and pointer finger did not separate.

             We went in for x-rays and initial consultation when she was about a month old.  Thankfully, the x-rays showed that her bones are not connected, just the skin, so it is considered simple complete syndactyly (simple because it is just skin, complete because it is connected all the way to her fingertip).  The x-rays also showed, however, that one of the bones in her pointer finger is significantly smaller than it is supposed to be, which causes her finger to be shorter than it should be and causes it to bend toward her thumb.  Since the pointer is connected to her middle finger, that finger is also growing bent.  And, her entire left hand is smaller than her right hand, which no one can explain either.  Its kind of interesting and puzzling, really.  So, given her bone abnormality, we were referred to Boston Children's, and are so thankful to have a fantastic pediatric plastic hand surgeon (that's all he does!!) who is going to be doing her surgery on Monday.  Dr. Taghinia doesn't think the bone abnormality is even related to the syndactyly; its a separate issue.  How our sweet girl ended up with TWO hand issues, we will never know.....  Its something that most people don't even notice (her nurses and doctors didn't even notice when she was born), but we want her to be able to have full use of her fingers and hand as she gets older.  So, its important to do. 
            This surgery was scheduled for April, when she would have been eight months old. Dr. Taghinia wanted to do it then so that as she learned to use her hands, her fingers would already be separated.  But then our girl got sick in February with Kawasaki Disease, (also rare, but that's a story for another blog entry) and we had to postpone the surgery indefinitely.  She has now been given clearance for the surgery by her cardiologist, now that her aneurysms have healed quite a bit and are so much smaller than they initially were.
           The surgery itself is quite a bit more complicated than it originally would have been, due to her anti-coagulation meds, but we are so blessed to have her cardiologist and hand surgeon both at the same phenomenal hospital.  We are thankful to have an amazing team working with us, and we are praying for all details to be attended to for both her hand and her heart throughout this process. 
          So tomorrow we head out.  We are, of course, nervous about the surgery itself, and also about the recovery process.  But we are optimistic and know that she is in great hands.  Boston's and God's. Couldn't ask for anything more.


               McKenna's new favorite game is to drop things and then say, "Uh-Oh...."  Its adorable.  Even when she does it during church, like she did last Sunday. Its slightly less adorable when she does it instead of taking her afternoon nap, which has apparently decided she no longer needs.  She hasn't taken an afternoon nap all week.  I'm pretty sure she might never again.  Its very sad.  For me.  Since her morning nap is usually about an hour.  Which is not a very long time for me to accomplish everything that needs to get done in a day.  Sigh....  Anyway, I digress.
               So, I am used to hearing her "Uh-Oh"-ing through the monitor when she is in her crib, during her afternoon non-nap.  She throws her loveys and her binky, says "Uh-Oh" after each one, and then eventually cries when she realizes she doesn't have them anymore and no one has come to give them back.  She always falls asleep with her loveys and her binky.  I tried not going in, but then she just cries, and no nap happens.  So then I tried going in, replacing the thrown items, and sternly saying, "No uh-oh," and walking back out of the room.  She then played the game again, on repeat, so again, no nap.  No good solution to this little problem.  Except just not even bothering with putting her down for the afternoon nap, which was today's strategy.  Seemed to work fairly well.
              Tonight, when we put her to bed at 7:30, we heard a few uh-ohs over the monitor.  But she quieted down quickly and went to sleep, so we didn't worry about it.  A while later, Brett went in to check on her, and came back out laughing and telling me that I had to come see.

Tonight's "Uh-Oh" Casualties

She threw out both of her loveys, her lovey bunny, the blanket that we put on her when its cold, the bears and bunnies that sit in the corners of the crib to protect her head from getting banged, the towel that we temporarily had put against the far wall of the crib to stop her from slamming her head into it, and even her glowy seahorse!  Lol.  Every single thing that is in her crib was on the floor.

But she is a smart girl, and a quick learner.  This time, she kept the binky.                          

 Sleep tight, silly baby.