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. 

pain

Eve has been in a lot of pain.  She is now having multiple pain episodes a day, and they're starting to happen at unusual times for her (e.g., midnight, or 5am).  She's had more bile in her stomach, and she's withholding urine.  We went to see her neurologist this week and he has prescribed a pain killer for her that should be more sustained in its effectiveness (rather than spiking like the morphine).  So, we are starting on a very small dose and waiting to see if it helps before slowly increasing it and simultaneously decreasing the morphine.  It should take a few days to see if it's working.  We're also going to learn about catheterizing her for times that she doesn't urinate for 8 or more hours.  This coming week, we have a followup with the Physiatrist (to check on the effectiveness of the latest round of Botox shots) and an upper GI study (to look for the cause of the bile). I'm anxious to get this kid comfortable. 

Things are about to get even more complicated at our house.  In a little over a week, I'm going to be having brain surgery.  Around Christmas, I started having some vision problems.  After a few visits to the ophthalmologist, he sent me for an MRI because of my double vision and slight unequal pupil size.  In early February I found out I have a 2cm mass on my optic nerve.  Within days, I was seeing a neurosurgeon in Boston.  We scheduled a repeat MRI to look for growth, which turned out to be minimal.  Thus, we were able to wait for surgery until my semester was over.  That time has now come.  I'm going to have a craniotomy in Boston at the same hospital where Jim had his lung surgery.  Our parents will be up here helping us (mine with me in Boston and his with him and the kids).  It will basically be the reverse of Jim's lung surgery in February.   Prayers and good vibes will be greatly appreciated. 

Eve's cold is totally gone!  She's been in a lot of pain, but we've increased her morphine and that seems to be helping.  She still has her episodes, but they're spaced out better.  We're trying out a new leg brace to maintain progress made by Botox shots.  So far, it's pretty hard for her to wear it (it hurts), but we'll go slow - a little at a time.  We go back to neurology for a followup in 2 weeks, so I can check in with him and hear what he as to say.

Happy Birthday to me

 While this is a great picture of Eve's smile, it is misleading.  She was right in the middle of a pain episode.  She had been on the couch, but I got her in her chair so she could join in on the birthday celebration.  In moments, she seized up.  I think the smile is genuine, but she tends to laugh when she is in pain.  The tell tale sign is that hand up at her side.  Her arms go stiff or bend when she's in pain.
This was tough for me.  We had to get her back on the couch the second we were done singing.  From now on, we'll have to shift the candle portion of the celebration to the living room.  We already do presents there. 

Eve is hanging in there.  Her cough is gone and she's still a little junky sounding.  She's back to not smiling as much, and she's in a lot of pain.  She's been having nightly pain episodes (and even one this morning at 5am - which NEVER happens) and can't seem to stay in her wheelchair during the day for very long at all. 
Her pediatrician has listened to her lungs and thinks they're not concerning (which is great).  We're going to step up the morphine that she gets to try to get her more comfortable.  Also, she had blood work done today.  The doctor wants to test her thyroid.  I noticed that she has lost small clumps of hair behind her ear.  The skin is smooth and the doctor confirmed it is alopecia.  This can be caused by problems with the thyroid, which her mito doc had said can be related to her mitochondrial disease. 
We continue to keep an eye on her.

Eve is sick

Poor Eve.  She's been sick since April 1st.  She's got a horrible junky sounding cough.  She doesn't have the muscle strength to cough productively, so she just hacks and hacks and doesn't get anything up.  Sometimes, she vomits the mucous up.  This is good for clearing her, but she could aspirate which is scary.

We went to the pediatrician twice, and kept an eye on her.  Monday, she was very uncomfortable and moaning a lot.  She also started sucking in her breath like she had a sharp pain.  This continued on Tuesday and the sharp pains got worse.  She'd start to cough and immediately suck in her breath and cry out.  She did this if startled, too.  We went to the doctor and she had developed a low grade fever.  The Dr. heard the beginnings of crackling in her lungs.  Eve also had smelly urine for a few days.  The Dr prescribed an antibiotic to take care of both a possible chest infection and UTI. She said the pain reaction could be from sore throat or muscles from coughing for 2 weeks.   It's been 3 days since we started the antibiotics.  Eve is in a much better mood - laughing and smiling, which she hasn't done easily for a while.  The smell went away in her urine.  However, she is still coughing horribly and doesn't sound any better.  She's coughing more throughout the night as well.

I'm pretty concerned.  Not in crisis mode, but pretty concerned.