A big surprise

Liz:

To say that today has been intense would be an understatement.  There is a reason why they call it "intensive care."  Last night after Tim posted and just as we were about to leave to get some sleep, we noticed Michael's lip quivering.  Then we noticed his eye twitching and then the entire right side of his face was randomly twitching and quivering.  The nurse came in and then several doctors.  They weren't sure if he was having a seizure or some other neurological issue.  They began giving him anti-seizure meds that didn't have any effect.  We stayed by his side for another hour but after midnight, decided to slip out and go get some sleep.  The nurse called us about 1:30AM to let us know that the neurosurgeons think that the muscles of the right side of his face were randomly firing as a result of the surgery and not a seizure.  Eventually, around 4 AM it resolved itself. 

We arrived back at the hospital around 9 this morning and found Michael inconsolable.  We tried to comfort him while we waited for a post-surgery MRI which kept getting pushed back.  Finally they wheeled him away for the MRI and we had about an hour break before we met back up with a screaming, inconsolable, miserable baby.  We spent the next hour trying to get him to feed from a bottle and then a syringe but he would not eat.  We were very concerned he may not be able to eat because his facial muscles are mostly paralyzed and his eyes blind so it looked like he might need a feeding tube.  But, I decided just to see what would happen if I offered to nurse him.  Amazingly, he latched right on and ate perfectly and has been able to eat excellently since.

After being able to eat, many other things have since stabilized.  He hasn't needed as much pain medicine since most of his crying was because of hunger and not pain.  His blood pressure is under control so his arterial line (like an IV in his wrist) was removed and he no longer needed a catheter.  They removed the oxygen he was on and he has played with a couple of toys for short periods of time.  His vital signs are looking really good. 

Just before 6PM tonight, our nurse came in with a big surprise.  "Change of plans!" she said, "Michael is doing well enough that you are moving out of intensive care and going up to the 6th floor.  Pack your stuff!"  We were a bit shocked.  Less than a day in intensive care?  We spent 11 days in intensive care after the last surgery.  But Dr. O'Neill has confidence Mikey will be fine.  Last night after the surgery he said if everything went "stupendous" we'd be out by Sunday.  I guess we are doing better than that.

So we are now in room 618 and to be truthful, things are still a bit intense.  Michael's monitoring needs aren't as critical, but he does need a lot of TLC.  He did just have surgery yesterday.

One more blessing.  Dr. O'Neill came in this afternoon and said that Michael's post-MRI scan showed no evidence of tumor remaining.  Dr. O'Neill is pretty reserved about being happy about things and we could tell last night and today he has been pretty happy with how things have gone.  Last night, he said when he opened up Michael's head, it was very clear what was tumor and what was not tumor.  That is a huge blessing as he could be pretty precise about what to remove and it did not take him long to know what to do so the surgery went more quickly than expected.  In addition, Michael's vitals remained stable and strong throughout the surgery.  We asked what could have gone better and he said he wished the tumor would have just peeled off but it was still pretty stuck to the brain stem and cerebellum so he had to be a bit aggressive to remove it.  But overall, things have gone much more smoothly than expected.

Right now, besides pain management, we will be monitoring him for neurological issues, like the facial paralysis and low vision.  We are hoping they improve as he heals.  And we hope he can rest well tonight. 

Also, yesterday, a blog friend wrote a beautiful piece about cancer and wrote some beautiful things about our family and Michael in her post.  I have not met her yet, but I have been following her blog for a couple of years and have always been inspired by her writing and life.  You can read what she wrote here.  Thank you Catherine for your very kind words.

Here are a few pictures from the past two days of our journey:

Early arrival, daddy and Mikey all smiles in the parking garage ready to go!

Chewing on some pedialyte to hold off the hunger pains because surgery got moved back 4 1/2 hours.  Poor baby.

Waiting and waiting and waiting for surgery

Tim holding crying Michael this morning

It might look like he's sleeping but he's actually crying.  His face cannot move so the sound just comes out of his mouth.

Not crying - thank goodness, but unable to see, Michael resting in his bed this afternoon.  No pictures of me since Michael has puked on me multiple times today.  Not really something we want to take pictures of.

As always, we cannot say enough thanks to each of your for your faith and prayers.  They are real, the power in them is real, the strength is real.  We feel our Heavenly Father and the Savior walking with us through this journey and see divine miracles and blessings and we know much comes from the petitioning on your behalf.  Thank you all.