smartie pants

So, Seamus has a speech impediment that we will get treatment for in the next school year.  However, his vocabulary is amazing.  He's a smart little kid.  During his last speech evaluation he appropriately (and unprompted) used the word duplicate. The kid is funny, too.  This morning, I mentioned I was going to brew myself some coffee and he started shouting, "Coffee alert! Coffee alert!"

better

Eve got the hiccups from laughing at Josie. She's doing much better since last week, and was fine on the drive to drop off Seamus this morning.  The last time she drove with me we ended up in the hospital. Hopefully the hiccups don't make her puke!

Silly Seamus

 Jim and Seamus went on a hike behind the Clark Museum and found some newts.  Here is Seamus picking one up.  It blends into his shirt in the second picture.

We always tell people who visit us that Josie is bipolar.  She jumps over them like she's the most excited dog in the world, and we mention that when no one is visiting that she's constantly asleep.  Here's some proof.  She loves the sun so much, she won't move even if Seamus climbs all over her. 

 Yesterday morning, Seamus followed Jim outside.  He put on a winter hat, a slipper, and a mitten on his other foot...but no pants.  Always a funny kid.

This was from the day we left the hospital.
She's doing even better today.  She's laughed a bit and seems more comfortable. 

small setback

So, out of nowhere, Eve had to go to the hospital.  On Thursday, I was taking her to the pediatrician's office to learn how to catheterize her and she started vomiting in the car.  We made it up to the office and she vomited constantly for about an hour.  Her doctor and nurse (including her school nurse who was also there for the appointment) evaluated her.  She started developing a low grade fever and her oxygen level was low, and we decided to send her to the ER for further evaluation and an anti-nausea medication.  When we got there, they did a chest xray (clear), urinalysis (ok), and IV fluids.  We were deciding what to do with her (home or send her to a different hospital with a pediatric unit), when the ER doc heard a crackle in her right lung.  They guessed she may have aspirated some vomit (which she was still doing).  She was also breathing very hard and fast with flared nostrils.  So they called an ambulance and she and I went to Baystate hospital.  The EMTs were fantastic and the one in the back with her read her Winnie the Pooh stories on an ipad and kept talking to her to keep her comfy.  He did say that her breathing increased to 48 breaths per minute.  I've never seen this before.  Usually, when her breathing is not normal it is very slow.  For comparison, her slowest breathing was 9 times per minute in December. 

The ER doc at Baystate was wonderful.  We talked about her DNR (Do Not Resuscitate) and what Jim and I want done.  Her lung was still crackling, so he decided to admit her.  We were sent up to the pediatric unit and encountered more wonderful doctors and nurses.  I had to keep explaining that I was 3 weeks out of brain surgery because the stress and my tiredness was affecting my ability to remember the right words I wanted to use.  E.g., I kept forgetting the word aspirate and saying intubate by mistake.  I had to discuss how we've been planning on switching Eve from pediatric palliative care to hospice.  I had to talk about our goals of keeping Eve comfortable and happy and not trying to prolong her life.  I made one of the doctors cry.  I was certainly crying. 

The night went well and they took good care of her.  They monitored her vital signs.  Baystate is a teaching hospital, so they have residents.  Early in the morning, one came in to talk to me about her current issues and we spent time talking about her medical history and mitochondrial disease.  I love doing that because I always think that Eve will save other children's lives if these young doctors learn about her disease and what it looks like.  The head doc came in after that and examined her.  Her lung was still crackling and he said she was probably pre-pneumonic.  They were going to re-evaluate her later in the day.  After that, the group of resident docs came in and evaluated her.  While they were doing that she vomited again.  So, they gave her more anti-nausea medication.  I was overwhelmed and exhausted.  A little later, Eve's school nurse came through the door and I burst in to tears.  What an amazing surprise.  Since Jim couldn't be with me (he was home taking care of Seamus), she was a gift. She knows how to care for Eve so well.  I was no longer alone, and I had relief from constantly watching Eve.  And she's fun.  :) Shortly after that, they told us they were going to put her on an antibiotic and send her home.  The best part?  They were going to send her home by ambulance.  This was amazing.  This way, Jim didn't have to drive out to pick us up (1.5 hour trip) and we wouldn't have to worry about her head hanging down in her wheelchair and puking in the van.  We don't have a seat next to where her wheelchair is secured, so it would be hard to monitor her. My mood changed dramatically.  I think I was worried that she wouldn't be leaving the hospital at all.  Now, not only was she getting to leave, but we were getting medical help to get her home.

We got home last night around 6pm.  It was a little chaotic.  Oxygen was being delivered from the local pharmacy, the EMT guys (who were great) got to meet Josie, Seamus was acting like a silly nut, and then the hospice staff showed up.  We put Eve on the couch and she quickly fell asleep.  We signed the paperwork for Hospice and talked a little about it.  Today, Eve's pedi palli nurse (who also is a Hospice nurse) will come over and finish filling us in and will examine Eve.  We don't think she's dying anytime soon (especially if this antibiotic helps her lung functioning), but having her on hospice will give us more help and nursing availability around the clock. We've seen so much decline this year and don't know if she will plateau or continue to get worse, but at least we will have lots of support.

She slept well last night, and we gave her a bath this morning.  She seems to be doing well and I haven't given her anti-nausea medicine since last night.  She's kept all her meds down.  Her stomach (bladder?) feels firm, so I'll have the nurse check that out.  If you're a prayer, please say prayers for her comfort and not for her life.  She's terminally ill, and there's nothing we can do about that. So, I just hope she isn't suffering in the time she has left with us.  That's what is most important to Jim and I. 

things are going well

The kids had fun in the pool yesterday.  Eve was so happy to be in the water.

It's been almost three weeks since my surgery and I'm doing really great.  It was super rough when I got home from the hospital.  I struggled with my memory and language.  I was incredibly weak and had a horrible headache.  One morning I made the mistake of bending down too quickly and burst into tears.  Starting last week, I really got over the hump.  I am much less tired (but still need to nap each day) and my memory is so much better.  I even drove my car on Friday and did fine.  I had my regular well visit with my primary care doc and he said I was doing great.  My incision is looking good and healing very well.  My parents stayed with me and Eve's school nurse was here helping get Eve up in the morning.  Everyone has been so incredibly helpful.  Without their help, this would have been impossible.  What a crazy year this has been.  Thanks for all your well wishes and prayers.