First Admission to Mass General

To help everyone better track what's happening with Emmett at any given time we've added a status update on the left side of our blog.  We plan to update this status much more often than we update the blog, so look to it for the latest news.  

Now for a medical update.  After week 6 of chemo at Children's we started radiation at Mass General. We had to postpone chemo week 7 (which is supposed to coincide with the first week of radiation) for almost 2 full weeks because his counts (immune system) were not recovering.  They were still able to start radiation, but not chemo.  Last weekend he was finally admitted for chemo week 7 when his counts went up to 1,600.  This was our first time inpatient at Mass General.  It was a little bit different, but they had a huge playroom that's open 24/7 (instead of 9-5, M-F at Children's) which was great!  Another bonus is that the life-flight helicopter landing pad is right outside the window at the elevators.  Emmett has fallen in love with helicopters, even though we only saw one land during our stay.  He even made up a sign for helicopter after we saw it (he puts his right hand above his head with his fingers sticking down like helicopter blades).  Our room also had an amazing view overlooking the Charles River, so we watched duck boats float by, the T (subway train) cross the bridge over the river, and ambulances coming into the hospital all admission long.
       
We'd been keeping an eye on his central line / broviac (permanent IV) for about a week at that point.  Some of the outer lining had separated from the plastic part right where it splits into a double lumen.  Surgeons had looked at it, but they said they wouldn't replace it until it was actually broken because a replacement line could break right away too.  Well, around 2am Monday morning, I wake up to the nurse asking if we have another PJ shirt for Emmett because his is all wet.  I got up and grabbed her one and she tells me that chemo had finished maybe an hour ago and she came to check his diaper and he was soaking.  The compromised broviac had just given way and so the fluids were leaking out onto him and his bed.  I started helping her clean up, but she said to stop in case there was any chemo (I didn't have gloves on).  We're so lucky that it held out so he could finish his round of chemo without any further delay!  We had been a little nervous because of how long it had been between chemo rounds - we don't want to give the cancer any chance to grow.  We're also very lucky the line didn't break at home in the middle of the night when we wouldn't have noticed it as there's a risk of bleeding to death.  Considering how soaked he was, I'm guessing that literally minutes after she unhooked him from his last dose of chemo, it broke and the fluids had been leaking for nearly an hour when she found him. We consider it a great blessing that it broke when it did!
       
The broken central line required another unplanned surgery, though I wouldn't put it in the same category as his other emergency surgeries.  A surgeon had told us a line breaking is common, but a nurse said she'd never seen one break before.  So Monday morning they started trying to add him to a surgeon's operating schedule for the day.  Then we received word his counts had dropped down to 320 over the weekend!?!?  (Under 500 is neutropenic, or high risk for infection.)  Being neutropenic, did they want to operate and risk an infection?  Or was there a greater risk of infection if they left his broken line clamped shut for a week or more as his counts dropped even lower?  It would probably be 1-2 weeks until his counts were above 500 again.  Our Mass General doctors talked with our Children's doctors and both decided the risk was greater if the line wasn't replaced.  After waiting most of the day not knowing what was going to happen, they took us down to the OR around 3pm.  They had given him Benadryl before we came down as an antiemetic drug.  You would have thought he was already sedated - he was out cold.  The operation was Emmett's second time going under anesthetic for the day which always makes us a little bit nervous.  I'm not sure if they're just not as used to kids and parents here at the 'regular' hospital, but they let us both come into the OR all dressed up.  They let us hold him (even though he was already out) while they injected propofol (which apparently can burn, and that made him cry in his sleep) and made sure we didn't feel in the way trying to comfort him while he cried.  They didn't rush us off, and made sure we both kissed him before they let took us back upstairs.  This isn't even major surgery really, but they were very kind to us.  Because he was neutropenic they didn't want to send him to the recovery room where he'd be exposed to other potentially sick people, so he recovered from anesthesia in the OR.  Again, they brought us both down, gowned us up, and let us stay with him in the OR for a half hour or so.  It's not very often non-medical personnel get to hang out in an OR awake for half an hour.  There are a lot of cool devices and buttons to push in there!  We never met the surgeon, but the two anesthesiologists were more than happy to bring us drinks and answer all of our questions.  These two doctors ran around like crazy trying to find Emmett a bottle since he could finally eat now after being NPO all day.  Emmett took a sip, but then just looked like at us like we were crazy for giving such a big boy a bottle.  But it's still the thought that counts, and we were glad they wanted to help Emmett so much.   They had me hold him in the crib and made sure I was completely comfortable before they wheeled us back up to our room.  Definitely not as scary as his other emergency surgeries, but it's never easy to send him to the OR.  We're glad the doctors were so accommodating which made it not so bad of an experience.  They had us spend the night again then discharged us on Tuesday after radiation.
     
The last three weeks have been uplifting because when chemo week 7 was postponed for so long, he was in such a great mood!  In a way, it's nice to have a break from chemo so his body has time to recover and we get to enjoy watching him make up for so much lost playing time.  He even tries to run sometimes, but his feet get ahead of his shoulders.  It's fun to see him so excited and happy.  He's even taken some steps on his own a few times.  For the most part, he's been a happy camper.  Having had chemo finish late Sunday night, we expected to be back in the hospital with F&N (fever & neutropenia) by Thursday or definitely by Friday, but we're still at home and he is still in great spirits!  He has maybe slowed down a little just yesterday and today & has thrown up a few times this weekend, which always looks so painful and terrifying for him, but still no fever, which means we don't have to go into the hospital.  It's been exciting to see him be a little boy again.  To want to help grandpa dig in the garden, to want to be outside and shooting hoops all day, to be scooting around on his bum....all these little things have made the last few weeks pretty good ones.
       
One last story - today I opened up iTunes on my laptop.  He got really excited to see his lion videos that we took at the zoo, but then he started pointing to the screen and signing ipad and saying it too and getting very excited!  I started laughing when I realized he was excited to see the Apple logo on the top of iTunes and connected it as the same apple on the iPad!

Micah will be posting more information about radiation soon...

These boots came in the mail and he seriously loved them from the moment we opened the box.  He did not want to take them off for days.  He loves them!  Wouldn't even take them off for bed!  He'd probably still be wearing them except I found some new flip flops and those have become a new obsession!  Wednesday night Emmett woke up and threw up around midnight.  Luckily, there were lots of us still up.  He was pretty awake after that, so he played with my siblings, who all also happened to be up.  Then he noticed his feet were naked, so I laughed and got him a pair of slippers.  He refused!  Apparently, he had something else in mind?!  I asked if he wanted his boots or sandals and he replied " 'dahs."  He was pretty happy when I brought them back.  And I kid you not, when he woke up the next morning, he immediately stuck his feet up in the air and then smiled when he saw his sandals were still on ;)  He likes shoes, what can I say?

What a cutie pants! 

Trying to let him play in the dirt, while still trying to keep his lines clean and out of the dirt. 

   If you can watch this one without getting motion sickness, it's worth it!

We requested binoculars so we could take advantage of the view.