Seamus: "I said you can only kiss me when I'm sad or when it's Mother's Day and you did not listen to me!"

We're hanging in there.  We had a quiet Christmas (just the three of us).  I'll post some pictures soon.  Seamus is coping pretty well.  Most of the time he's doing great, but every once in a while he gets very sad.  He's been spending much more time happy than he did right after she died.

 Just now I was typing an email response to Hospice (they had some questions) and I had tears running down my cheek.  As if he was reading my mind, Seamus woke up from his nap crying loudly.  He said he missed "Sisty" (what he's been calling her since she died) and that Sisty will be gone his whole life.  I hugged him and told him I missed her, too.  I'm wondering if it's starting to sink in that she's not coming back.  We decided to watch Peppa Pig together on the couch.  He seems calm now.

Photos from October

Seamus: "I beat you by walking with my farting power!!!!"

Happy birthday, Jim!

How are we dong?  We're hanging in there.  That's become my standard response.  But it's true.  I wouldn't say I'm good, but I'm surviving.  We have grieved for 8 years since her diagnosis, so this didn't come as a shock.  But it's hard.  I think we're functioning extremely well, all things considered.  We keep the grieving private.  This is the first birthday we celebrated in 10 years without her.  And that's tough.  I know that each holiday or event in the next year will be particularly tough as it will be the first of its kind without her.  Seamus misses her very much.  Here is an email that I got from his music teacher today.  I think it explains how he's doing very well.

I want to share with you a lovely story about Seamus that happened in Music Class yesterday. He is such a dear little boy and I am so thankful to be teaching him music again this year.  He loves to sing and learn new songs and is always full of enthusiasm!

We were discussing the Pillar of Gratitude and I asked each child to think of something they are thankful for and we began to sing a song" Thanks A Lot."  Seamus was sitting next to me and he said "I am thankful for my sister" and began to cry.  He climbed up on my lap and I hugged him and comforted him.  All the children were quiet and looking so tenderly at Seamus.  A little girl went and got him a kleenex and we sat quietly together.  We continued singing around the circle and each child shared what they are thankful for.  Three children said such loving words to Seamus:

"I am thankful for Seamus."

"I am thankful for Seamus and he is such a special friend and I love to play with him."

"I am thankful for Seamus's sister."

These three children have known Seamus for over a year and they looked at him with such love.  I told him that we all love him so much.  He dried his eyes, climbed down from my lap and walked peacefully with his friends to the bathroom to get ready for snack.

This was such a special moment and I wanted you to know how Seamus was loved by his friends and how warmly he received that love yesterday.

 

 

Aiming high

me: Seamus, what are going to be when you grow up?
Seamus: A f(mumble)er.
Me: A fighter?
Seamus: No. A farter!!!!

Son, you've gotten a very early start on that career.

We're hanging in there.  I am grateful for Seamus keeping us so busy.  Also, I am lucky enough to have some really great students this semester.  I'm trudging through the thank you notes for the enormous amount of condolences, love, and support that we received.  I fear that I will miss some, so please know that we are so thankful.  We are so grateful for the amazing amount of donations that were made to UMDF and to Hospice Care of the Berkshires.  You are helping people who are suffering like Eve did.  You are providing care that is so important for both the patient and the family, just like re received.  So thank you from the bottom of my heart.

I've been procrastinating looking at an envelope of cards from some of Eve's classmates.  I looked at about three when I got the envelope right after her death, but it was too emotional.  Yesterday, I gathered the strength and had a good cry.  These kids are so sweet.  Here are three of the four cards that included a drawing of Eve.  I just love that they drew her without her wheelchair.  When these children were in preschool with Eve, their teacher asked if they knew anyone in a wheelchair and they said no.  While I think that they continued to focus on Eve and not on her chair, I'm sure these drawings were intentional.

First day of school

Today, Seamus started his first day of Pre-K with Mrs. Bizzi.  He was very excited to see his friends again! 

obituary

Here is her obituary.

7/16/05-9/1/15

Last night at 1:15am, Eve passed away. She was comfortable and we were with her.  She'd been hanging in and unresponsive since Friday night.  Today we will meet with the funeral home and once her wake and service are planned, I will update this post.  Thank you so much for your prayers and well wishes. 

progression

Eve has continued to progress.  She had another vomiting episode on Wednesday.  She had a hospital bed delivered yesterday so we can raise and lower her upper body.  We're changing around her meds and j-tube feeding rate to try to keep her comfortable.  They are also ordering a pain pump, so she is always connected to a source of pain relief at the push of a button (in case I can't leave her side).  Yesterday, the hospice nurse informed me that we may have just days or weeks left with her.  She said that children can hold up for so long, but often have an extremely rapid decline at the end.  I think it's going to be sooner rather than later.  She had extreme pain this morning when I moved her from her bed to her chair.  I couldn't get all of her meds in her g-tube, so we paused the feeds to give her gut a break.  We're going to try again with the meds in a little bit.  The hospice nurse is going to consult with the medical director.  When I got off the phone, I checked on Eve and she had fallen asleep in her chair.  She usually doesn't take naps this early. 

We are so lucky to have such wonderfully supportive family, friends, and neighbors.  I know that you would love to help.  I promise ask for help if we need it.  If you email me and I don't reply, know that I am grateful for your support and that I read it, but I might not have the energy to respond.  I'll do my best to keep updating.  In the meantime, if you are one who prays, please pray for a quick, quiet, and comfortable death.  If you are not one who prays, please send good vibes to help us achieve that goal. 

snuggle time

 And from the other direction....

Another hospital visit

Eve has had a rough couple of days. This is our third day in the hospital. She's had some very bad constipation and we've been trying to fix it with medication and suppositories.  She was making some gaggy faces Thursday night and I touched base with Hospice. We gave extra meds for constipation. At 4am, I woke up to her violently vomiting. It was horrible. She couldn't stop. So, we called hospice and the nurse came over. It's now a bit of a blur, but we tried zofran for nausea and hard core pain meds that were puked up. We tried a medicated suppository. The nurse heard no bowel signs, so she called the ambulance so Eve could be tested for a bowel obstruction.  We arrived at the pediatric ER at Baystate at about 9:30am on Friday. By now she had horrible junky breathing and a fever, so they did a chest X-ray and an abdominal X-ray. They did blood work (not terribly problematic) and a urinanalysis (normal).  The abdominal X-ray showed her packed with poop, so the nurse gave her an enema. Oh. My. God. The biggest poop I've ever seen.  However, she was still feverish and her breathing was rough.  So, they admitted her. She vomited again when she arrived at her room.  At this point she had no meds other than some Motrin, so I'm sure she was hurting bad. They were able to start an IV (she's a hard stick and had foiled at least 4 previous attempts in ER and new room) and gave her Valium and fluids through the IV. Saturday morning they ordered another set of X-rays. The chest X-ray showed no sign of pneumonia which was great. The abdominal X-ray showed she still had lots of poo. Enema #2 was also successful. They also slowly started putting Pedialyte in her j tube, which she tolerated. Then the started her meds through her g tube, which she also tolerated. Then they put formula in the j at the normal rate. That, too, has been tolerated. The GI suggested a mixture of her previous fiber containing formula and a non fiber formula.  Maybe the fiber had been compounding the problem. So, though she had a pain episode last night at 3am, she's doing much better. She looks more alert and relaxed. I think getting bowel relief and getting back on her regular meds has given significant relief. Her breathing sounds better, but she's still wheezy. The doctors are satisfied she's back to baseline and are sending her home. Ambulance is arranged for 1pm.

This was a rough and scary experience.  It's times like this that make me extra upset at the amount of suffering this child has to endure. I don't know how much time we have left with her, but why does it have to be so horrible for her? Why can't we have a quiet and peaceful end?

On a more positive note, we face timed with Jim and Seamus this morning and she smiled and laughed pretty hard. Of course that made her wheeze badly, so I asked Jim and Seamus to stop being silly which made her laugh harder. She was definitely not this responsive in the past two days. So, wish us luck.

Eve's friends

Eve is hanging in there.  We're managing her pain and digestive system issues as best we can.  They're moving targets.  But she's had a pretty good week.  And she's had some visits from school friends that she loves very much.  Two of her dearest friends came by on Wednesday and lifted her spirits.  It was amazing.  She had just had her long day at summer camp, so didn't have her usual nap. I expected her to be a little distant.  But that was not the case.  She focused on them and at one point laughed so hard in a way I haven't seen in months.  We are so lucky to have such amazing kids in her life.

Seamus gems

This morning we had an interesting conversation.

Seamus: "Bumble bees taste like bee pee."
Me:"When did you eat a bumble bee?"
Seamus: "None-day."
I can't make this up, people.

Oh, and here's a shot of him chillin' out on his daily commute.  As one friend said, not a care in the world until he gets the "call."

Happy birthday, Seamus!

Seamus is 4 years old!  Where has the time gone??
Jim's brother, Scott, came for the weekend.  The kids just adored having him here. 

Happy Birthday, Eve!

I can't believe our baby was born 10 years ago.  Truly incredible. 

Seamus loves Eve

Seamus was asking me about why boys are flat chested and women have breasts.  He asked if Eve had breasts and I told him she was too young and that older girls developed them.  He said that when Eve gets older she won't need her wheelchair and will walk.  I told him that wasn't going to happen.  I told him that Eve will never walk and that she will probably not get much older before she dies. He burst into tears and said he didn't want her to die.  He was super emotional and just sobbed.  He walked over to her and hugged her.  I started crying, too.  We talked about her disease and I told him that it will end her pain and that she won't suffer anymore.  It took him some time to calm down, but then like a typical three year old, he shifted focus to some music and started dancing. 

I met with both the hospice nurse and a reverend from hospice yesterday.  The reverend gave me a book for kids about losing a loved one.  We've never talked about Eve's terminal illness with Seamus, but have never hid it from him. He's always accepted Eve for how she is.  Looks like it's clearly time to read the book with him.  Who knows how long we have left with Eve.  Maybe a year.  Maybe less.  The nurse mentioned there's been a lot of progression in the last year.  I've noticed her wanting to lay down more and having more irregular breathing (2 deep breaths and 8 second pauses).  As sad as this experience with Seamus was, it was so wonderful to see how much he loves Eve. 

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.