Our Smiley Seth

Our Smiley Seth

Saturday, August 26, 2017

Time for Comfort

After some good playing and picnicing on the 6th floor:




We finally made it up to the 9th floor late last Friday night after making many visits upstairs to see our favorite nurses.  Since the clinical trial would reimburse for hotel stays we decided to have a few nights in Boston with Sadie.  We each stayed with her for a night and she loved being at the hotel and being so close to get back over to see Seth. 


We had planned to stay through the weekend to watch Seth's calcium and see if we could get to a place that we felt comfortable bringing him home.  Unfortunately, that didn't happen.  Over the weekend his oxygen levels started dropping a little while sleeping and he was put on blow by oxygen to keep him up in the 90's.  We had a lot of discussions with the doctors and decided we weren't comfortable bringing him home with the way his oxygen was ... I mean how would we sleep?

Saturday night we even got out for a date night thanks to my company for giving us tickets to the Red Sox game.  It was nice to get out for a little while even though they didn't win.



On Tuesday, Seth moved into a nice corner room on the 9th floor since we would be here for a while.  Sadie and I were at home for her preschool get together and we were planning to come back on Thursday.  Wednesday night Seth's breathing really seemed labored, his nose was flaring, his heart rate was elevated and his oxygen levels were dropping.  Sadie, my mom and I headed into the hospital to be with Seth and Steve.  We talked with the doctor and Seth would begin a PCA of morphine to help keep him comfortable.  It took a number of adjustments before we found a place he seemed to be able to rest. 

His belly is very distended and we don't know exactly what is causing it but it could be he's holding on to fluid, the tumor in his abdomen is growing as well as the tumors in his lungs.  We decided to stop the clinical trial because we don't believe it's going to give us the extra time we were hoping for and the volume in his stomach could be adding to his discomfort.  Now we are focused on keeping Seth as comfortable as possible and spending as much time together as a family while we can.

Having the discussion with Sadie about how brother has been coming to the hospital to try and fix his boo boo but the medicine isn't working was heart breaking.  Knowing how much she loves her brother and how we will have to have this conversation over and over again because she's so young and doesn't fully understand is hard as well. 

For now we're enjoying a lot of family time at the hospital which includes family sleep overs, lots of playroom time, meals at Bertucci's (the dough restaurant) and visits from friends and family. 




We don't know how much time we have left with Seth but we are trying to make the most of it ...

Thursday, August 17, 2017

What's Up ... Seth's Calcium!

Monday morning we headed into clinic to complete the final testing for the clinical trial.  We found out last week he was already eligible for the EZH2 trial at 2 weeks post op so we decided to start this one rather than waiting an additional week or more for the other one.
We had an early clinic time of 7:45am.  Those of you who know me well know I'm kind of a car seat crazy lady but Monday when we arrived to the garage I took Seth out of his seat so he could ride forwards on the way down to finding a spot.  He loved it and was happy looking out the window and touching Steve's head.
We met with Dr. Wright signed the consent papers and Seth had his labs drawn.  We headed over to Children's for an ultrasound of the heart, EKG, and some X-rays of his wrists and knees.  Afterwards we returned to the clinic to meet with the research nurse.
We were brought back to infusion room V and Seth was hooked up to for another EKG as part of the trial preparation.  He didn't love this and didn't stay near as still as he had just a little bit earlier while sound asleep.  6 minutes later and 3 EKG's were done!
The charge nurse of the clinic came in and told us that Seth's calcium was 15.9!  Whoa that's high and in the danger zone.  She wanted to let us know they would be starting him on some fluids and Lasix in an effort to flush out his system and Dr. Wright had been paged as well.  She arrived not too long afterwards and said her recommendation would be to have him admitted to get his calcium under control if we were ok with that plan.  We agreed because we wanted to make sure his numbers stayed within the acceptable range to start the clinical trial on Wednesday and of course didn't want to risk it going higher and damaging his heart. 

We hung around the clinic for a while waiting for a room to open up at Children's.  His labs were taken again and his calcium had come down to 12.6 which was good but still in the high range.
We finally got over on the 6th floor and headed to the play room. 

Once Seth was settled, his hydration had begun and the resident on service came to see us Steve and I went for dinner and afterwards I headed home.
Tuesday morning Sadie and I brought lunch into the hospital and spent the day as a family.  She loved riding into the hospital in Seth's car seat and said facing backwards was comfy cozy.
Sadie loves coming to the hospital to visit brother, but also seeing the nurses, endless amount of chocolate milk, usually cookies, and playing in the playroom.

Over the course of the next few days a combination of Lasix, hyper hydration, calcitonin, and another medication were given to Seth in order to get his calcium down. 
He also started the clinical trial on Wednesday.  He's done well with it so far despite it being a large volume for him to take at once right now.  We're thankful for his G-tube as we've heard it tastes absolutely awful and many kids complain when having to take it orally.
We had a few visitors during our stay this time which is always nice and provides a good break/distraction during any admission.  Cliffy and Meagan who we didn't get pictures with but both kids enjoyed.  And a few days later Gary, Leah and Charlotte stopped by to say hi after an appointment.

At this point Seth's calcium is down but only to 11.3.  We will be staying the weekend to see if it comes down further and if we can get him off the fluids and Lasix to make home care a little easier.  Hopefully we will be transferred up to the 9th floor soon.  We've visited many times and we miss our 9N family as much as they miss Seth. 
Who wouldn't love getting hugs from this little guy?

Sunday, August 13, 2017

"Normal" Time

Over the weekend we just enjoyed being a "normal" family.  We had play dates with friends and family and just enjoyed being with one another. 
Friday we had a good day of going to the library, hanging at home, and Seth had his first swimming experience.  To say he wasn't a fan may be an understatement.  The water was frigid so I can't blame him but he looks adorable in his swim gear.

Saturday we headed out for a play date.  My friend Michelle and I both had our girls in November and our boys in July.  What are the odds of that?!?!?  We've been wanting to get together and it finally happened.

Sunday morning Steve went out early fishing with his brother.  Seth went down for a nap so I got some quality time with Sadie the wiggle worm and dancing machine before Seth joined us.  We also had a visit from Laurie who brought us lots of treats. 

Sunday afternoon was another play date at our house with Buddy and her family from Connecticut.  Seth has been very selective with who he lets hold him as of late.  If Steve and I are around he doesn't go to many people but Buddy was lucky enough to win him over for a little bit.

It was so nice to have a weekend home where we were all together and visit with friends.  Hoping for more of these in the future.