Harlie's Birthday Eve

Ahhhh, Harlie's birthday is tomorrow....  Such a difficult set of emotions.  It shouldn't be like this. And it shouldn't have been like this...

Do you see my face?  That is what heartbreak, confusion, fear and utter devastation looks like. When I think about all the thoughts in my head at that moment, I don't know how I survived.  How did I put one foot in front of the other?  Day after day? Month after month?  Year after year?!

Combine congenital heart defects, lung defects and the inability to breathe through your mouth and nose and you get a blue baby.

Beautiful, wasn't she?  Go on ahead and admit it.  She would've scared you, too.  And, for the record, I don't mean scary in looks, although that might be somewhat true, too (in this picture!).  I mean scary as in how scary it is to be responsible for a medically complex and fragile infant.

They took her away just seconds later and I couldn't hold her again until she was three weeks old.  She looked better a few days later...you know after heart surgery.

At four days old (right after her first heart surgery).

This is why we couldn't hold her.  The ET tube is what
was keeping her breathing.

At six months old, after her second heart surgery.

What? This isn't what every baby album looks like?

Ahhh, that's better.  At one year old.

Can you tell I'm a bit grumpy today?

I just keep thinking of what it was like exactly seven years ago at this moment.  It's 5:30 pm as I'm writing this.

We had checked into the hospital after the 1 o'clock Steelers football game versus the Cincinnati Bengals.  The Steelers lost.  Typical.  We went to a bar in DC to watch it to try to give our minds a bit of break from the chaos that was about to begin.  I couldn't eat.  I wasn't hungry.

They started all the stuff to induce labor.  It was a long night.  I didn't want to have her.  I wanted her to stay where she was - safe and sound.  I knew her life would be hard, however long it lasted.

What a horrible thought the eve before giving birth!  I knew her life would be hard, however long it lasted.

I think that's why I'm grumpy.  So many wonderful experiences were taken away from us.  From her.  Replaced with a life full of hospitals, ambulances, medical supplies, doctors, nurses, surgeries, doctor's appointments, time spent in waiting rooms, traveling all over for medical care, medical supplies, suctioning, oxygen tanks, breathing treatments, infections, antibiotics, tube feedings, home health nursing, physical therapy, speech therapy, feeding therapy, stitches, bruises, recoveries, medical supplies, communication devices, trach changes, suctioning, years with no vacations, no beaches, no pools, no sleep, no sound, no voice, no words.  And did I mention medical supplies? Or suctioning?

Thirty freaking nine surgeries and seven years later, she's writing her name on her homework.

Today - September 24, 2013

She has homework.  And she's writing her name on it!

She is amazing.

I honestly don't know how we have made it.  That first year was a doozy.  But we have.  We have survived.  All of us.  And we continue to, every single day.  How have I not lost it?  How do I not have an ulcer?  How have Tom and I survived?  How did we have another child after her?  I don't know.  It's really crazy to think back on the last seven years and know that we are "fine" most of the time.  Heck, I'd even say happy.  Okay, maybe I have lost it.

The love I have for this child is unmatchable.

The love for her is different.  To watch your child go through as much as she has gone through changes you.  It changes your relationship.  To love - through the fear of losing her - is indescribable.  To love her is to feel pain.  And you have to be accepting of that.  There are no barriers in the way of my love for Murphy and Cooper.  I can love them openly and securely.  I can dream about their future and know that the odds are in their favor.  It is different.

I wish I could be one of those parents who says "I wouldn't have it any other way."  But, that is simply not true.  And, personally, I think those parents are crazy.  I would wave a magic wand without hesitation if I could.  There are no doubts about that.

There is a lot going on in our lives right now.  After a lot of thought, we decided to make some changes in our home nursing.  Terri is no longer with us.  And Brandy is coming "back." She never left, but now she will go with Harlie to school a couple/few days a week.  And we have a new nurse starting next week who will work part-time to share the school days with Brandy.  Home nursing is a difficult thing.  It is not something you want to need.  And need it, we do.  There is little privacy, a lot of trust, and I'm betting there's a lot of judgment going on.  So, making a change is never easy.  No matter the circumstances.  Terri was with us for two years.  I would give anything to have a conversation with Harlie about it.  To see how she feels and what questions she must have.  But, at least I know that she loves Brandy and what a great day for her to take her to school for the first time in two years - her birthday!

Huh, I feel less grumpy now.  Sometimes I guess you need to embrace the bitterness, the anger and the grief.  And then go tell a bunch of people, whom you may or may not know, all your inner most thoughts.

Happy Birthday, Harlie.  I am grateful for every day I get to see you smile.

Thank you for the love, the support and the friendship.
~Christy xo

PICC Line

I've been wanting to give you more details on Harlie's PICC line.  It is a central line that allows the patient to go home while receiving IV antibiotics.  This was Harlie's second PICC line, and it was necessary for the exact same reason...  infection in her jaw following jaw surgery.  Last time the culprit was a bone graft taken from her skull and implanted into her jaw (the bone graft died and an infection appeared 10 weeks post-op).  This time it is most likely because of some kind of bug living on the hardware that is still in her jaw following her jaw distraction back in July.  We are trying to leave that hardware in until October 30.

Anyway, here is one med that she was on - Zosyn.  The meds come in these cool balls that you hook up to her PICC line.  Once connected and unclamped, it just flows in.  This one particular med took an hour to infuse.

After it's done, it looks like this...

I think it's pretty cool.

Last Thursday, on September 12, we went for Harlie's follow-up appointments to see her pulmonologist and infectious disease doc.  She had been on IV meds for three weeks by then.  So, they pulled the PICC line out and put her on Clindamycin (another antibiotic).  She will stay on Clinda until the hardware comes out - currently scheduled for October 30, in Boston.

Here is what the PICC line looked like on her arm.

Here is a bruise that we must have given her while holding her arm during dressing changes.  When you have a PICC line, the dressing on top of it must be changed once a week.  And she's a fighter.

I told the docs who pulled it that Harlie is deceptively strong - so they should prepare themselves.  No one ever really believes me.  At first.  Then she fights, and they tell me they are shocked.  Her doc was so funny.  He told Harlie that he was going to have to go back and read more about Goldenhar because he didn't remember it saying that it came with super-human strength.  Cute.

She was happy it was gone, that's for sure.

This appointment was actually pretty fun, all things considered.  I think I might be full blown crazy to think a doctor's appointment can be fun.  But, I do love her docs.  And they are funny.  I told both her pulmonologist and ID doc about something that happened a few nights prior.  I had a really bad night one night and got virtually no sleep.  So, the next day, I was especially tired.  Her last IV med was given at 9pm and had to be disconnected and flushed with saline and heparin an hour later.  Tom said he would take care of it so I could get some sleep.

The next morning Tom asked me if I had ever had blood come back from the line.  No.  I thought maybe he had just pulled back on the syringe by accident when he flushed it.  So, I went in and saw what had happened.  Instead of disconnecting the med from the cap - he unscrewed the whole cap off!  Well, blood just flows right out when you do that.  And that's something we are not supposed to do!  He didn't realize it, of course, it was late and dark.  So, when he turned to get the saline syringe, she was bleeding.  Then he saw it, screwed the syringe on, flushed it and when he unscrewed it to get the heparin, the same thing happened (because nothing was stopping the blood from flowing out - since it was now an open line).  If you look at the picture above, you'll see the clear caps attached to the colored ports.  The med connector is clear, too, so I can see how it happened late at night in the dark, by a man.  ;-)  You'll also see the clamps.  He said he had to clamp it shut to keep the blood from coming out.  Whew!  We were one click away from a whole different story.  And since it was now an open line, the risk of infection was WAY higher.  Especially since she slept all night like that!  The next morning, I washed the cap and alcohol swabbed all parts, and put it back on.

I went to tell her doc that story and I started it with, "So, I let my husband do the last IV treatment the other night..." and he stopped me and said, "That's like starting a sentence with, here, hold my beer and watch this."

When you have conversations like this - it's hard not to have fun!

So, just to recap her antibiotic treatment - from July 3rd (date of surgery) to October 30th (date of hardware removal), which is 17 weeks, she will have been on antibiotics all but two weeks in that time frame.  Crazy.

When we got home from the appointment, I went straight to the refrigerator in the garage (those medicine balls are stored cold) and said to Brandy, "Which med does she get at 1pm again?"  And Brandy said, "None, they pulled the PICC line."

Duh!

Wow, it's amazing how fast that routine set in and how crazy I was about trying SO hard to remember it all.

Of course, the past few days, she has been pointing to the same area where the infection was and signing "hurt."  And she flinches really bad when I brush her teeth on the bottom right (which is directly above where the infection was).  I cannot see anything amiss.  And she has not had any fevers (which she never does).  Clearly, I'm worried that we won't make it to October 30th before this infection overpowers the antibiotics.

I spoke with her infectious disease doc about this yesterday.  I would love to be able to take her in and get a white blood count (which is usually elevated when the body is fighting an infection).  However, that doesn't work for her.  Of course.  He said that when she was in the hospital in January (with a respiratory bug) her WBC was 11.5 (which is not that high).  When she came into the ER with the abscess, her WBC was 7.  That makes no sense.  That, combined with the fact that she doesn't get fevers (another indicator that your body is fighting something) means that her body doesn't fight infection on a systemic level (whole body affected).  It fights it on a local level - at the point of infection.

I don't know why she has to be so different in so many ways.  It makes keeping her safe and sound much more challenging.

So, the plan, should she get an infection before October 30, is for me to take her to our local ER, have them start IV antibiotics, and then have them transport her to Boston Children's.  Clearly, I am hoping it doesn't come to that.

The last time she was transported from an ER, was on a helicopter and I had nothing with me.  I had to call 911 from the house, and was in no way prepared for a hospital stay, especially out of town.  My phone died within a few hours and I had no charger, hadn't eaten, didn't have a toothbrush and had to sleep in the waiting room.  At that time the hospital's PICU was one big open room separated by curtains, and you couldn't sleep bedside.

Harlie was about 11 months old at the time and she was sporting a helmet.  This is a picture of her a few days after the helicopter ride.

11 months old

She was the sweetest baby ever.  Anyway, she was still really small, I think she was about 15 pounds at the time.  They put her in the pod thing to transport her and they couldn't shut the top of it because of her helmet.

Ahhhh, memories.

Anyway, where was I?  Oh, yes, she has been communicating to us that her jaw is hurting.  So, I emailed her surgeon in Boston, just to give her a heads-up and make sure she was on board with the plan.  She replied and said yes, plan is good, but that she's out of the country until the 27th.  So, we just have to get through another week with no abscess.  Then, every day after that is bonus.  If I were a betting kinda gal, I would bet that we aren't going to make it to October 30.  We'll see.

Oh, and if we do make it, we are going to have a Halloween party at our house for the kids before we go to Boston.  Thank you to all of you who gave me suggestions on how to give Harlie a Halloween experience!

Also, one more thing before I wrap this one up... last week we received an anonymous donation to The Harlie Fund.  It was very generous.  I have no way of thanking who donated it, other than here, so thank you.  We are so thankful for all the wonderful people who give so generously to us.  We just couldn't do it without all the support and love from you all!

Much love,
Christy xo

Harlie's first day of school...

My posts are going to be out of order.  But, it's the only way I can post right now.

Over the weekend, Harlie's Vest arrived.  A nurse called me to make sure everything was in order and to schedule our training time.  On Sunday, she came over to train us.  It took over an hour.

We have to do it for twenty minutes, two times a day.  Harlie isn't a fan.  The vest inflates and then air pulses through the tubes into the vest.  It's purpose is to help move mucus from her lungs.  Hers is ordered for use all the time - not just when she's sick.  I guess if she doesn't get sick much this winter, then that means it's working.

Last night was our first time doing it on our own.  We put it on Murphy and Cooper first, just so Harlie would think it was "fun."  But, she's smarter than that.  She knows it's not fun.  I was a little nervous about this morning's routine, with the Vest added into it, since it was going to be Harlie's first day of school!  The problem is that the Vest can't be done near a tube feeding time - which was 6am. So, I had Tom give her the first half of the can at 5:30 when he left for the gym.  Then I got up at 6am to give her the rest of the can and her meds.  Then I let her rest a little while longer before I got her up and dressed.  We started the Vest treatment a little ahead of schedule, before 7am.  She gets her breathing treatment at the same time.
 

Not a fan of the 20-minute treatment.
Bribed her with the iPad.

This bad boy is NOT cheap. (like $16,000!)
It's also not light.  And we will have to take it with us
when we travel to Boston, or anywhere else.  

Of course my healthy kid asks if he can have a turn next.
And then she kicked him. Sibling love...

Despite her initial reaction when told it was a school day,
I think she was probably a little happy to be going.

We travel light.

She's going to have to use her chair for a while.  Her classroom is SO far from the parking lot!  There is no way she can walk that far in a reasonable amount of time.  Especially with her oxygen requirement.  And her questionable spinal pain.  I'm rationalizing that it will mean for more energy for her work.  But, secretly, deep down inside, it kills me that she needs it.  I never thought we'd be here when she was this age (almost 7!).

Since I didn't get to go to open house at her school, I wanted to go in the class and meet her teacher.  As we got to her classroom, the class across the hall saw her and they all said excitedly, "Harlie's here!"  I had to really choke back the tears.  Just thinking about it now makes me cry.  They all seemed genuinely happy to see her.  Her teacher said that every day they would ask her about Harlie.  I love how kids are so concerned about her and how she's doing.

In class and somewhat cooperative.

Terri said she did all her work.  She just did it at her own pace.  Which is slooooow.

Last week her teacher sent home this banner the kids made.  The kids signed their names on a heart and glued it to the banner (and her teachers, too).  It is very big and takes up most of my main wall in my office.  I love it!

And I've been meaning to show you this puzzle a group of girls made for Harlie.  It is one of those really big floor puzzles.  A friend of mine has a summer camp for girls and they did this puzzle and made some other cute stuff for Harlie.  I love all the sayings on it - Never give up, Be yourself, Just keep swimming, She leaves a little sparkle everywhere she goes, Don't worry be happy, Be unique, Spread love, etc.  So cute!

In preparation of Harlie going to school today, I made a few checklists to make sure we had everything we needed.  I got a little chuckle out of her backpack checklist.  Notice the last item... oh, yeah, that school book.

We're going to need a bigger backpack.

Seriously, when I picked her up today (half days until she builds up a little endurance) I had to carry her school stuff in my hands.  We really do need a bigger backpack.  The one she has is a kid backpack (large, but designed for a kid to wear).  But, considering we are the ones carrying it, we need to get an adult backpack this time.

I have more to write and more pictures to share, but will have to do it tomorrow.  Thank you for all the love!

~Christy xo

Quick Update - Wednesday

I don't even know where to begin...  Things are "fine" here.  Harlie is "fine" but still not at school.  Normally, I send her as soon as I think she can handle it.  But, I don't think she's there yet.

Anyway, she is home.  We were able to come home Saturday afternoon.  On Friday night, I was getting very worried about her and the direction in which we seem to be heading.  She never seemed to fully recover from when she got sick right after Christmas last year.  We've struggled to get her off the supplemental oxygen and she's been on it WAY more than she's been off.  I don't want a new normal.  I want her to be "healthy" and happy the way she was before then.

But this summer, it's just been one thing on top of another and I guess it's all caught up to her.  After all the specialists looked her over and put their heads together, it came back to her heart.  She's been stable for three years (when she had the Fontan) and I have been able to focus on other medical issues, without giving much thought to her heart.  I really don't want to have to go there again.

So, on Friday night, I left the hospital at 9:30 pm.  We had one of our nurses that night, Harlie was ready for bed and I was tired.  And sad.  She was on 60% oxygen - too much to go home.

When I got there at 7:30 am the next morning, she was on 40% oxygen!!  Woohoo!  Now that's progress!  I think I blogged that I thought she was dry (as in dehydrated).  Well, they agreed with me and when they gave her more fluids, she did way better.  With her passive blood flow, she cannot get too dry.  So, hydrating her was the answer.

The cardiologist that was on that weekend came by to see us.  He walked in and said something like, "You have no idea how many people I've talked to about Miss Harlie."  And I said, "Now you know how I feel."

Let me see if I can make this simple... her blood flows like this... oxygen rich (red) blood leaves her heart and goes to her body, oxygen deprived (blue) blood returns and goes straight into her lungs to get oxygen and then goes to her heart to be pumped back to her body again.  That's not normal, by the way.  ;-)

He said that we have re-routed her blood flow and it doesn't work the way God and nature intended.  So, her body has, most likely, formed collateral vessels that carry blue blood to her heart.  So, the blue blood mixes with the red blood that just came from her lungs and it pumps a mix of the two, instead of just red blood.  So, that lowers her oxygen saturation, hence the need for additional oxygen.

To fix it, she needs a heart cath and the doctor will shut down the collateral vessels, which will stop the mixing of oxygen rich blood and oxygen deprived blood and allow the heart to just pump oxygen rich blood to her body.

Easy.  Awesome.  When can we do it?

Not until she's at her baseline best.  Which is not when she's on IV antibiotics.  I don't know exactly when that will be.  So, we are most likely stuck on oxygen until the heart cath.

So, which do we do first?  The jaw hardware removal surgery or the heart cath?  Unfortunately, the hardware removal.  Which was scheduled for November 20.

Well, in light of this infection, I asked her surgeon if she could move up that date.  She wanted three months from the date of surgery (July 3).  That puts us at the beginning of October.  I want the date moved up because I don't think we can risk Harlie getting another jaw infection.  The sooner that hardware comes out, the better, as far as I'm concerned.

Well, I got a call this week with a new date.  It is the absolute soonest her surgeon could fit her in - October 30th.  Crap.

So, now Harlie gets to miss Halloween.  And I get to miss it, too.  I know it's just Halloween and she doesn't even eat the candy anyway.  But, STILL!!!  I'm trying to not be sad about it.  So, I found myself saying, "I should be grateful" to another special needs mom friend of mine, and Susan said, "Grateful for what exactly?"  Good question.  Well, we haven't had to spend many holidays in the hospital, overall.  Not Christmas (and I'm not going to mention anything about her birthday since that is coming up soon).  But then I realized that in order to feel better, I had to think that we are lucky that we haven't had to spend Christmas in the hospital.

Who the hell thinks like that?  When something has bad timing in your life do you say, "Well, at least it isn't Christmas, so I should be grateful."  No.  But that's where I am.  How sad is that?!  Can you get much lower than that?

I love seeing how excited the boys are about their costumes.  And I loved that last year Harlie could pick out what she wanted to be.  She was excited about it, too.  Even though she gets nothing from the work of trick or treating.  Now, what am I going to do about costumes?  Let the boys get theirs and not let Harlie?  Let her pick one out and then she just misses the event?  I suppose I could let her wear it to the hospital or something.  So not fun.  Ugh.  I'm just bummed.  Really, really bummed.  It just seems that there's no letting up on the discomforts and sacrifices that Harlie has to make in this life.  So. Not. Right.

She had a dentist appointment today.  It was at a new to us place.  It was the first time a full (ish) exam could be done.  It was torture for her.  As is most of anything having to do with her mouth. She bled for hours afterwards.  The amount of times per day that we have to force something on her that she doesn't want or like is ridiculous.  And I HATE it.  And it is wearing on me, and my spirit.  I find myself thinking I don't know how much more I can take more and more often.  It's killing me.  And she's not happy about it, either.

Tomorrow won't be much better.  I have to get her up and out the door by 8am to go to some follow-up appointments downtown.  Luckily, I don't think there will be any pain involved.  But, it will be work and will take energy, which she doesn't have much of lately.  Me either, for that matter.

Okay, that's it for tonight.  I have way more to talk about it, but it will have to wait.

Thank you, as always, for reading and caring.
~Christy xo

Friday Update

Harlie is still in the PICU.  They put her on a Lasix (diuretic) drip through her PICC line.  So, she's been able to pee off a lot of the fluid.  Of course, it probably helped that she wasn't getting any of her feeds or water flushes, so her body didn't have to process that fluid, too.  We fed her at 10am on Tuesday and she didn't get another tube feeding until 4pm on Thursday!  Poor kid.  The saddest part is that she didn't even care.  Not once did she indicate that she was hungry.  She must feel hunger pains, right?  I guess in her world, that just isn't uncomfortable enough to register or complain about.  :-(

Anyway, yesterday afternoon (Thursday) they took her off the Lasix drip and switched her to a different diuretic via the g-tube.  For some reason, they have her back on Lasix (via g-tube) AND the other med today.  I thought they said that they wanted to give her body a break from Lasix.  Apparently your body can become unresponsive after continued use - even though she's really not had continued use.  I don't know.  Things are always changing.  I got a little education on diuretics/kidneys.  Apparently each one targets a different part of the kidneys and/or tubes.  So, that's why they prefer to use one versus the other, or why they want her on both.

How are you living without that knowledge???

All joking aside, my brain feels as if it's reaching some kind of maximum capacity.  I'm forgetting the little things.  Like last night (Thursday), Tom brought me dinner.  And he let me leave afterwards to go get the boys and tuck them in, while he stayed with Harlie until she was settled for the night.  Unfortunately I missed a visitor - Aline from Saxon Shoes...

Harlie and Aline

She brought gifts for Harlie and me from her and Sarah - thank you so much you two!!

Tom and Harlie.

Before I left he told me that the boys did NOT need baths and I said, "Oh, good, thanks!"  But, when I got home, I gave Cooper a bath. Despite the fact that when I told Murphy to get in the shower, he told me he got one last night.  You'd think that would trigger something, right?  Nope.  Then after I gave Cooper a bath, I went into Murphy's room and said, "Why aren't you in the shower?"  So, he told me again that he got one last night.  Still nothing.  So, when Tom got home, I told him that Murphy didn't listen to me and never took a shower.  Oh boy.

I am always more energetic in the hospital than when I leave.  I guess some guard is up, or adrenaline, or something.  And when I leave, I relax and realize how freaking tired I really am.  So, when I pulled into our driveway, I couldn't wait to be horizontal.  I went inside to get the dog.  Tom didn't feed him, so I assumed he needed food and to go outside.  He wasn't home.  So, I went across the street to see if they had the dog with the boys.  And they did.  They even fed him and took him out.  I love my neighbors.  After I collected the boys and the dog, I thought I should walk him one last time so I wouldn't have to do it later, when I was in a coma.  Plus, I thought that would be a good time for the boys to tell me about their day.  Cooper took a toy with him and during the walk (it was getting dark by this time) he lost a piece from the toy.  So, we had to walk back and get a flashlight so we could go find it.

I probably should have said, "tough it, kid, don't bring toys" but I couldn't.  They haven't seen much of me and I didn't want to be a jerk.  So, we walked our path with the flashlight.  Still couldn't find it.  So, we walked back.  I was SO freaking tired.  And annoyed.  And I was trying so hard to be patient and loving, too.  Murphy told Cooper he would go find it in the morning.

Then we went inside and they wanted bedtime snacks.  Oh, please just kill me now.

So, I gave them chips and watermelon.  Then I went upstairs and gave Cooper that unnecessary bath.  Awesome use of the very little energy I had remaining.

Finally, I went downstairs, made a drink, folded a load of laundry and watched my new favorite show, The Big Bang Theory.  Then I tried to stretch my injury (piriformis) and fell asleep on the floor.  By that time, Tom was home and he told me to go to bed.

Also, on Wednesday night (did I already blog about this?) I couldn't find a parking spot when I took her to the ER.  I had to go through both garages and still no spot.  They gave me a card for valet parking, which I never do.  I'd rather park myself.  Anyway, I had to valet and then we went into the ER, etc.  When I left that night it was 10:30pm and I looked for my car keys and couldn't find them.  Then I remembered that I used the valet.  I asked the security guard downstairs how I get my car.  She said, "They left at 10pm."  Sigh.  She found my keys and said my car was somewhere in the garage next door (a totally different garage than the one I know and use).  She said a guard would walk me to my car.  But, they never came.  So, I went off to find my car.  In a dark garage. Alone.  At 10:45pm.

Now, if you know me well, you know all my alarms were blaring.  I've watched enough true crime to know this was NOT smart.  Yet I went anyway.  You either have to go up or down the ramp and I chose to go down.  Because in every scary movie they always go up and that never ends well.  I walked around a few corners and found my car.  I'm alive, so that's good.

Anyway... whew I digressed!

I think these are the problems with Harlie:

• Oral diuretics were not working, and she continued to accumulate fluid.  Why were they not working?
• The chest x-ray shows edema (too much fluid), despite the fact that she is peeing well (on diuretics) and that her weight is down to pre-infection weight.  If she has too much fluid, she would weigh more.
• Her Creatinine levels have been high.  I'm not sure if that's still a concern or not.  
• She's still on 60% oxygen (which is more than I could give at home).
• Why has it been a struggle for her to get off the oxygen all year long?  Is there a connection?

I think that's it.  So, they called nephrology (kidney docs) into the mix.  They came and spoke to me yesterday.  Again, I had to say that I am not accepting new specialists.  I will say that she seemed to get (and perhaps even like) my sense of humor.  She mentioned us seeing her as an outpatient.  Ugh.  I showed my disappointment, but said that I will work it into our schedule if necessary.  I just need to see that it is, in fact, necessary.  So, they might do an ultrasound of her kidneys today.  We'll see.

They took another chest x-ray this morning.  To my untrained eyes - her left lung looks better, but the right looks no better at all.  Her abdomen looks more cloudy in the earlier x-ray and it looks more clear in today's.  They are about to round, so maybe I'll have more info in a few.  I guess I'll just wait to type anymore until then since things might change.

Okay, they rounded.  She is negative 700 mls or something.  And with that, they would have expected for her x-rays to be better and for her oxygen requirement to be lower.  However, that is not the case.  So, they are going to be more aggressive with the diuretics, upping both medications in dosage.  They are going to do that for the next day and see where we stand tomorrow.

Her trach secretions are real thick and sticky, and all things aside, if I were at home, I would up her water intake via the g-tube.  But, that complicates the fact that we are trying to get rid of fluid.  So, I don't know what they're going to do as far as that goes.  Clearly we need to get her to the point that she's on her home regimen, and able get rid of fluid appropriately.

To hear them discuss her, is both comforting and scary.  Comforting in that I'm not an idiot when she stumps me and I don't see a clear answer.  Scary in that they are very educated, she is stumping them and there isn't a clear answer.

It is now almost 5pm, and I am just now able to try to finish this post. We had lots of visitors today...

Amy (Harlie's speech therapist).

And Terri, Harlie's home nurse.

Lynda came by earlier and brought me some apples, Diet Coke and peanut butter M&Ms.  The meal of champions!  And she brought Harlie some Lego Friends mini sets with a cat and bunny.  She's been playing with that almost all day.  She plays with it even while watching her iPad.

And Melissa came by (a friend and Girl Scout mom) to see us.  We had a full room with lots of laughs!  While Terri was here, I ran an errand.  There is a toy I wanted to get Harlie for her birthday.  But, I thought she would like to play with it here, so I went and got it.

Squigz!  She loves them!

Harlie got that ultrasound of her kidneys...

 A different nephrologist came and spoke to me.  He is great.  And after looking over everything, he determined that her kidneys are working fine.  Because of her heart defects, her kidneys are going to be negatively affected.  But, in her case, it's still very mild.  Before the ultrasound he said if her kidneys are full, that's good (because it's an acute problem, and not a long term problem), but if they are small, that's bad.

Hers are plump, so that's good.  That means there's an acute problem that we can (hopefully) find and fix.  His theory is that her gut is not absorbing the diuretic.  Her gut is not absorbing the diuretic because it is not well perfused, which points back to the heart.  For now, we have to help her with the fluid problem.  He said he can fix the diuretic issue with more meds.  Something he said made me ask - short term meds or long term meds?  LONG TERM!!!  WTF?

So, now the fear is that she won't be able to get rid of fluid on a regular basis?

In thinking everything through - nothing is really adding up.

It is now 6:15pm and she is STILL on 60% oxygen.  They added some feeds back into her schedule.  She is now negative 400 mls (700 earlier).  Her trach secretions are DRY.

When they rounded this afternoon they said the goal is to get her negative one liter (1,000 mls).  They are expecting her to be there tomorrow.

At this point, I am starting to doubt how fluid overloaded she really is.  But, I'm no doctor.  And her blood pressures are low.  And to fix that, you usually give more fluids.  Another indicator that she's dry?  I don't know.  I asked the nephrologist how accurate those chest x-rays are - could it be something else other than edema???  He said he would talk to her pulmonologist.  Maybe a bronchoscopy would be helpful.  I don't think the team agreed necessarily.  But, we'll see where tomorrow puts us.

The bottom line is that we don't know what's going on.  I wonder if the underlying problem of what's currently going on, has always been there (well, at least in the last eight months of her needing oxygen) and that the trauma of the infection and the subsequent OR trips have tipped her balance.  Now, the fluid got the best of her, the diuretic wasn't working and she's way out of balance.  And now that underlying (unknown) problem that made her require oxygen all year is finally becoming more apparent.

Does that make sense?

I don't want to over think it and I don't want to make this more complicated than it is.  But, something isn't right and I've been thinking that ALL of 2013.

Okay, so the PICU attending just came in and went over a new plan.  He wants to slow down on the diuretics.  He thinks she's dry.  And I totally agree!  So, he made some new goals - sats above 85, and negative 500 instead of 1000.

It still doesn't make any sense that she's on so much oxygen - she was on 60% when she was edematous and she's still on 60% now that she's dry.

He said that he thinks that it goes back to pressure.  She has passive blood flow, so if there is too much pressure, blood won't flow where it's supposed to and if there's not enough pressure, it won't be able to get to where it needs to go.

If we don't have a better situation by Monday, we are probably looking at more invasive studies - bronchoscopy and/or a heart cath.

Her trach secretions have been so dry and sticky that I haven't been able to get a suction catheter through it.  Seems she's been completely plugged.  If she she's been plugged, how the heck is she breathing through it?  Maybe that means she's breathing through her mouth and nose.  So, the oxygen is at her trach - how much is going in through her mouth and nose?  Maybe that's why her oxygen has to be so high?  And if she's so dry, maybe she's plugging in her lungs, too, which would definitely lower her sats.  ARGH!!!

At this point, my head hurts.  As it is now 9pm, it is has been a few hours since my last conversation with the doctor.  After he left, I felt very heavy.  And full of worry.  I don't want to go down this road (heart/pressures/lung issues).  But, my hope is already refilling - hoping that somehow there is any easy answer to all of this (mucous plugging) that we somehow overlooked.  I don't know how possible that is, but it is what will get me through to Monday, when more decisions will be made about further testing, future plans, etc.

Until then I will hope and pray that upping her fluids will somehow fix everything.

Sorry for the crazy, long, all-over-the-place blog post.

Much love,
Christy xo

Back in the hospital

Whew!  I can't seem to keep this blog updated.  Harlie is a moving target lately.

Monday was Labor Day.  Tom and I took the boys to the pool.  Harlie can't go because of the PICC line (which can't get wet) and of course, the insane amount of oxygen she's on.

Cooper, Philip (our neighbor) and Murphy

Tom throwing Cooper.

Murphy, Philip, Kaden and Cooper.

I took the last photo and posted it on Facebook.  After seeing so many happy pictures and status updates about how great summer was and how sad most people were that it was over, it made me think about how I felt about this summer.  My caption - Good effin' riddance Summer 2013!  I wish I could have hash tagged it (which I never do) as "worst summer ever" but - sigh - it's just too close to call a clear winner.  There was that one summer that I feared her death the whole season... so that sucked, too.

Anyway, I'm not sure where our current situation falls.  The end of summer or the beginning of fall?  Because if it's the beginning of fall, that's not a good sign.

Tuesday, September 3

The first day of school!  Murphy rushed out the house to go get Philip, so I missed our photo of him under our tree.  Darn it.  So, Philip's mom and I followed them there.  I carried Murphy's school supplies (since I forgot them the other night) and took photos.

Philip and Murphy

Philip and Murphy.  I don't know why Murphy
has such a hard time with photos... grrrr.

Crazy.  

Murphy unpacking.  

Murphy ignoring my request for a smile.
Looks like he wanted to get serious about school.

Of course the bus came to the house for Harlie.  When they tried to reach me last week, I was in the hospital, so we never spoke.  The bus came and Tom had to go out there to tell the driver she would not be taking the bus for a while.  It made us both very sad.  To be surrounded by healthy children and know that one of yours isn't, is hard.  Living with grief every day....  And I've been feeling a lot more anger than usual in the past eight months.  I just feel like I'm running low on grace.  We have such an extreme situation in so many ways.  She's not textbook anything.  One problem complicates another problem's solution, etc.  And when things are bad for a while, I always start to wonder, is this the beginning of the end?  Is this going to be our new normal?  I hope not.

I spent the morning making a bunch of phone calls and sending emails.  And I scheduled an appointment with Harlie's pediatrician for 1pm.   I sent Cooper to Bethany's house, and Terri and I took Harlie.  As we were walking out the door, she realized where we were going, and started to cry.  She really has so little energy and had no interest in getting off the couch.  Then she signed "potty."  Never fails.  She cried and sat on the potty for a little while.  It occurred to me that she could have been stalling.  So, I told her that Dr. Derco was not going to hurt her.  And she got off the potty and went into the car.

Her doctor said that she had pitting edema, which basically means that fluid was accumulating in her soft tissues.  I guess her lungs were running out of room.  She's also up four pounds from just three weeks ago.  Anyway, he said she needed more Lasix (a diuretic to help her body move the fluid into her kidneys so she could pee it out).  Unfortunately, her one daily dose was scheduled for 2:30, so it was going to be a while before we would be able to see a difference from adding a dose.  He called her cardiologist and then her cardiologist called me a little while later.  After her doc was done with his exam, I said, "See?  No hurt.  Remember when I told you that it wouldn't hurt?"  I really want to get her to the place where she trusts what we say.  What a difference that would make with her fears (and subsequent behaviors)!

We rushed home after the appointment because I really wanted to walk with Murphy home so he could tell me about his day.  At about the time I was leaving to get him, Harlie's Medicaid case worker got to my house.  She did an overall assessment of our situation and upped our nursing hours from 10 a day, to 16 a day.  So, that's good.  Luckily, the school was running late (first day and all) so I made it in time to chat with a few parents and then walk home with Murphy.

Classmates after school.

He had a great day and likes his teacher, so that's awesome.

Then we went home and I spoke to Harlie's cardiologist.  He wanted her to have IV Lasix instead of oral Lasix.  So, I called the infusion company to see if they could provide the IV Lasix.  The manager that I spoke with said it wouldn't be until Thursday till he could get it.  And if she needs it, she can't wait that long.  He also said that he wouldn't even be comfortable with us giving it to her at home.  It lowers blood pressure, so he would rather her be monitored.  I think the general thought was that if she needed it, she needed to be in the hospital.  But, we are not the norm, and I have IV access (clearly not the norm) and I have a mini-ICU at my house.  Maybe that makes me feel like I'm more capable than I really am to keep her home and nurse her through this.  I don't know.

Yet I still made her come with us on a walk in the evening with the dog.  She didn't want to go, but we put her in the jogging stroller with an oxygen tank and I think she enjoyed the fresh air.  It's always so fun to see Rooney run his heart out!

Anyway, come bedtime I gave her a second dose of Lasix.  After that she only peed once.  Whereas the last time I gave her a second dose at bedtime (Saturday night) she peed twice.  The night was rough and I had to get up several times to see why she was alarming.  Now that she's on so much oxygen, if she alarms, I have to go in immediately to see why.  Her tubing could be disconnected or something and without the oxygen, her sats sink in to the 60s in a matter of seconds.  No exaggeration.  Anyway, I was tired this morning for sure!

Wednesday, September 4

Once I was up and Murphy left for school, I emailed her cardiologist and pulmonologist to give them an update (and to tell her cardiologist that we couldn't get the IV Lasix).  Dr. G. (cardiologist) emailed right back and after going back and forth a few times with more details, he said it would be best if I just brought her into the ER now.  Her belly is distended and that might mean that oral Lasix wouldn't work as well, so she needs IV Lasix.

I was walking the dog with Cooper when I got that last email and was kinda far from the house.  So, it took me a while to get back.  But, that gave me some time to get Cooper squared away.  My friend Michelle had just sent me a text telling me she was available, so I called her.  Her and Sally came right over.  They took Cooper to the park.

Then Cooper and Rooney went to Bethany's house for the rest of the day.  And Murphy went there after school.  Then the boys went across the street to Philip's house for dinner.  His mom is making dinner for them tonight and tomorrow night.  Oh, what would I do without my neighborhood???  Even though our life is kinda crazy, they are entertained, loved and well taken care of.  So, thankful!!!

As we pulled into the parking lot of the hospital, Harlie saw where we were and yelled, "No!" from the backseat.  Ugh.

So, we got to the ER and saw some old friends.  A nurse that we had years ago was back!  It was so good to see her!  She went to a different department for four years and today was her second day back in the pediatric ER.

Then Dr. G. (her cardiologist) came by to see us.  And they did an echo (ultrasound of her heart) just to make sure all the extra fluid wasn't negatively affecting her heart.  Then they got a chest x-ray and an abdomen x-ray.  Her chest x-ray definitely shows a lot of fluid - on her right side especially.  And it's now in the chest cavity instead of just being in her lung tissue.

She's now been admitted into the PICU (last time we were in the progressive care unit, which is a step down from the ICU).  Funny how you get comfortable somewhere.  At first I hated the PPCU, but being in that room made it so much better.  And I got to know the nurses and team.  In the PICU, it's a whole different team.  Of course, I'll get used to it here, too.

She's also doing a lot better than when we got here.  And she immediately asked to sit in the chair, with the table and the computer.  Of course, she's not been fed or had any water flushes since 10am.  And apparently, you can be dry in some ways and fluid over-loaded at the same time.  So, that makes getting her balanced easy.  Not.

They have now started her on an IV Lasix drip.  Her blood pressures have been low today, so they had to get some meds to have on hand just in case they need to give her something quickly to raise them.

We already had some visitors - Niki and Katherine - some of my running friends.  I forgot to get a picture.  Darn it.

It is now after 9pm.  And I am pooped.  We are about to give Harlie a bath, and put her to bed.  Then I think I'll go home for the night and return early tomorrow.

Oh, one other thing... today at Harlie's school, a lot of the moms organized all the kids who had We heart Harlie t-shirts to wear them today to school.  So sweet!

This morning.

Thank you for all the wonderful support and love!!

Much love,
Christy xo

Friday - Sunday Update

Hi!  All is well here.  Harlie is progressing nicely.

I "slept" here Wednesday night.  I felt so awful, but it had to be done.  They took her down at 6am Thursday morning.  We sat there for TWO hours until they FINALLY took her into the OR.  Luckily, she slept.  I played Candy Crush on my phone until I wanted to poke my eyes out.

Unfortunately she was asleep when they took her back.  I tried to wake her so she would know what was going on, but she's stubborn in her sleep, too.  I must say that I was really, really, really ready to for this process to end.

The surgeon came out afterwards and said that her wound looked great and that she closed it!! SHE CLOSED IT!  Woohoo!!!  I was so happy!!!  She sent a text to Harlie's surgeon in Boston to give her an update, gave me her card and said to call her if I ever needed anything.  It feels SO good to close this chapter!  Now it was time to focus 100% on her lungs, then we could go home.

Earlier in the am I sent a text to Tom that I wished I had some tissues with lotion in them.  The tissues at the hospital are only a touch better than sandpaper.  And my nose was already raw.  Just a little while later, I got a call from our friend Mike and he said that he heard I needed some Kleenex and that he was on the way.  I love my friends.  He brought them up to me right after I talked to the surgeon.  When I told him that she closed the wound, I couldn't hold back the tears of joy (and of pure exhaustion).  Ugh.  It's almost over.

Harlie woke up happy.  It was as if she actually understood.

She signed "home", something she rarely does while in the hospital.  I can't help but wonder if she was listening and understood that closing that meant no more OR and that she could go home.

Our wonderful neighbor, Cami, and her family, sent Harlie the cutest package with a coloring book and an adorable dog Webkin - and the best balloon ever!  Harlie saw it through the glass doors and said, "Mama! Look!" and pointed and I was so thrilled when they brought it to her!  You should have seen her face!

First time she wanted to do something other than watch tv.
Woohoo!!!

She clearly has a thing for snails...

And PT and OT came by today and they got her to play on a mat on the floor and got her to sit in the chair.  They brought her Legos and she played with them for hours.

Then my friend Miriam brought me a gift bag from her and Allison.  They were so generous and kind!  Thank you!

Thursday night was open house for the elementary schools here.  I asked my mom if she could come and sit with Harlie from 4pm till she went to sleep.  That way I could just stay home after the open house and get to bed early.  I was really feeling crappy by then.  Oh, I forgot to mention that since I was sick, the docs ordered a viral culture on her, so she went on contact precautions.  What a pain in the butt.  Every hospital employee has to gown up and wear a mask when they come into the room until the culture comes back negative (which takes days).

Anyway, as I was walking out the door a new doctor I have never seen stopped in to talk to me.  That conversation took way longer than I wanted, so I was way late leaving the hospital.  She was a Hematologist (blood doc).  Harlie's clotting levels (PT and PTT) were high(?) during her last stay (in February) and were high again this time.  From what I could gather, that means that she has a hard time clotting (and is an easy bleeder).  She's on aspirin, so I thought that was the reason.  But, no.  In this case, that has nothing to do with it.  It has something to do with Vitamin K and her lack of it in her system.  She went on to say that it was due to one of the following reasons:

1) She doesn't get enough of it in her diet, which we can immediately rule out since she's on formula.
2) Her body isn't processing and she's just pooping it out (her words, not mine!).  She said that seems unlikely, too, since that would cause poor weight gain.  And she's gained three times the expected amount this summer!

or...

3) She has some very rare autoimmune blood disorder that's called... something-or-other.  It's genetic and caused by a recessive gene and that both Tom and I would have to be carriers, and we should get genetic testing done blah, blah, blah.

I think at this point I stopped listening.  I actually told her that I was sorry, but we are not accepting new specialists until 2015.  We are booked solid.

The bottom line is that I really don't see how this can be a big deal.  Every surgeon has checked her PT and PTT levels (she's had major surgery more times than I can count) and it's never been mentioned before.  Whatever is going on cannot possibly be severe.  And us get genetic testing?  Hell no.  It would take months and months and we would walk away with nothing.  No, thank you.

I'll skip ahead a bit just to end this chapter since I'm talking about it now.  A few days later I was told that her odd levels were probably due to her being on antibiotics.  So, they added Vitamin K into her medications while she's on IV antibiotics.  Good.  Problem solved.  Although, I don't recall her being on antibiotics back in February, but whatever.  Moving on...

I left the hospital at 5pm.  UGH!  I knew I was tired because for the life of me I could NOT remember where I parked.  Eight levels.  I knew it wasn't the first several, so I took the stairs down and peeked out at each level.  I couldn't even remember where on the level I parked!  I finally found it.  Then crappy traffic!  Open house was 4pm to 6pm.  I wanted to go home and take a shower and look halfway decent, but that obviously wasn't going to happen.  So I got home at 5:30, ran upstairs and put on clean clothes and then we walked down to school.  Of course we forgot his supplies.  It took me a while to change gears from Harlie to Murphy.

We met his teachers.  He has two.  Meeting his homeroom teacher went fine.  After meeting him, we went next door to meet the other teacher.  She asked him if he was excited about school and he said, "No. It's like a prison. I'd rather stay home and play video games."

Seriously.

I wanted to smack him.  Right then and there.  The worst is that he completely misrepresented himself.  We don't own a Play Station or Nintendo.  The video game he was referring to was Minecraft.  Not exactly what I would think of when you say "video games."  And like a prison?!  Oh boy.

After that, Tom went out to eat with some friends that were in town.  Mary Ann (Tom's mom) got us Chinese food and then I headed to bed early.  My mom stayed with Harlie till well after 10pm!  I think they had a good time hanging out.

Harlie was still sleeping when I got to the hospital on Friday morning.  As soon as I walked in, Harlie woke up and asked to sit in the chair.

She really seemed so good.  Our goal was for her to get down to 35% oxygen, consistently, with no crazy desats for 24 hours.  By Friday morning, she was down to 30%.  Woohoo!

They rounded on her and the attending went over what needed to happen to get us discharged.  It was Friday before a holiday weekend.  All the follow-up appointments had to be scheduled, new meds had to be prescribed and sent to the appropriate places (IV meds come from a home infusion company vs. a regular pharmacy), an order for the chest PT vest had to be sent, all the docs from all the specialties involved had to give their okay, etc.  I was thinking late in the day, tops, for discharge.  Perfect, because Tom could come and help me after work.  

Soon after they rounded, our friend Dale came to visit!  We had a great time chatting - despite the fact that Harlie kept me hopping.  Thanks Dale!!

Dale and Harlie

 I tried to blog, but it was just too busy.  I guess since it was a Friday before a holiday weekend, everyone was working really hard to get out of there - so they were ready to discharge us by 3pm!  I sent a text to Tom asking him how soon he could get there, but apparently he didn't get it.  I packed everything up and took all I could carry to the car.  Then I came back for her and the rest of the stuff.  Then the nurse that has to go over all the PICC line stuff called.  She said she could be there by 4pm.  So, I just hung out and waited for her.  She went over how to use it (a refresher for me since it's been a few years since Harlie's last one).  And she said that our home health nurses (Terri and Brandy) aren't allowed to touch the PICC line.  So, that means we have to do it.

Luckily, they changed Harlie's IV meds on Friday.  She's on Zosyn, three times a day and Daptomycin, one time a day.  She was on Vancomycin, which was three times a day, too.  But, they switched her to Dapto to make our life a little easier.

Anyway, after that, it was time to go.  Harlie kept on pointing to her arm signing "off."  Normally, IVs are the last to go.  But, clearly, this one wasn't coming out.  So I told her that it was staying.  And she cried.  Oh, when she cries like that it kills me.  It's the defeated, I'm so sad cry.  Breaks my heart every time.  The only thing I could tell her was that it was either go home with it, or stay in the hospital.  She was happy after that.

 I know you can't see it all.  But there are three bags hanging from her chair.  And then I have her backpack on, and her oxygen tank across my chest.

So, we go out to the security desk to "check out" and the alarm is blaring.  Which shuts down the elevators.  Awesome.  So, we stood there for about 10-15 minutes.  Patience....

Then on our way out, a family of three held the elevator door for me when I was still pretty far away.  It was really cute.  Then when we got on the elevator in the parking deck, the people that got in with me squished all around so we could all fit in - but in a nice way, you know?  The elevator stopped on my floor first and the gentleman got out of the elevator to open the door and hold it for me to the deck.  I said he didn't have to do that because I didn't want him to lose the elevator - but then the woman in the elevator said, "Nope, I'm going to hold it for him."  And they didn't even know each other.  Something about them going out of their way to be so nice to me really got to me.  Keep in mind I was tired and sick.  So, I was weepy.  Plus, I think I was so happy to be leaving and going home.

Since it is now Sunday night - I can't remember the rest of Friday.  It was busy.  And Tom and I were both so tired, so we were not exactly getting along.  Plus, there was just so much stuff to have to put away and we had to figure out a new routine.

So, we were in her room, getting ready to hook up her last IV med of the night.  I reached into her closet to get a box of alcohol swabs and a shelf completely fell apart from the wall.

Awesome.

I had to laugh.  Even though I really didn't think it was funny at all.  Now I have another thing to do.

Friday night was fine.  Harlie slept all night.

Saturday was our 11th wedding anniversary.  We went out and ran some errands trying to get some finishing touches for my new home office.  I'll post pics soon.  I love it!  Now, if I could just get some time to focus on getting everything moved in and organized, that would be great!

After we had an early dinner, we came back home so we could help give her bath.  Since she can't get her PICC line wet, we have to give her a bath, not in the tub.  When we put her to bed, her sats just wouldn't come up.  We had a 5-liter oxygen concentrator, and she was on 5.  Still not getting into the 80s!  So, Tom brought up some tanks and hooked one in the line and we had to turn that up to 5, too!  That is way too much oxygen!  I can't give her much more at home.  I was definitely getting nervous.  So, I called our equipment company and told the respiratory therapist on call our problem.  She said that she would go to the office and see if they had a 10-liter concentrator.  Our pulmonologist was on call and she was going to call him to get an order.  So I asked her if she could ask him if I could give her a second dose of Lasix, since she only peed four times that day.  Both were fine.

So, she came out with three more tanks and the 10-liter oxygen concentrator.  She did ask me why they discharged her on so much oxygen.  This is definitely the most she's ever been on at home.  But, she was looking so good and her oxygen requirement was decreasing while in the hospital.  Ugh.  I was really hoping we didn't make a bad decision.  While she was changing out the concentrators, I was working on Harlie's new schedule.  Here it is.  Click on it to make it bigger.

Well, it's a work in progress.  A lot of work in progress.  She is a full time job!

While I was doing that, Tom wrote this on Facebook:

11 yrs ago today I married Christy Holton. Our lives have been quite challenging these past few days, months, okay years. Regardless, after these past 24 hours there isn't a doubt in my mind that we don't belong together. Our day was difficult and our night is shaping up to be even worse. We have no cards nor gifts for each other. Our date consisted of a few hours doing errands and a quick meal of Vietnamese food. Currently we are watching TV with my mom (thank you mom) and a stranger is swapping out Harlie's O2 concentrator ( cause well yea ours just died). BUT....I have a nice home, 2 reliable cars, a few awesome bikes, Rooney, a job I love, 3 beautiful children, and a nice glass of bourbon (thanks Neal). AND I have Christy by my side, til death do us part. Happy anniversary babe!

He is so good at that.  And he was right.  The night was horrible.  The RT did ask me why they discharged her on so much oxygen.  But, she was getting so much better!  And she was happy!  So I started to think about what's changed since discharge.  Three things...

1) They changed Vancomycin to Daptomycin.  Vanc covers more lung stuff (like pneumonia).  But Dapto is less high maintenance at home - if she doesn't have pneumonia (which we don't think she has).

2) She was getting chest PT, two times a day with the Vest.  But, we don't have one here at home yet.  So, she went from two times a day, to none.

3) I could have sworn there was a third thing, but it's late and I can't remember it right now.  Oh, yes!  They were giving her different breathing treatments.  But, I found the same meds in my closet (you know when I was cleaning up that freaking mess?).  So, we started them today.

Anyway, we were very worried that we were going to have to take her back to the hospital.  Ugh.  But, we managed to get through the night.  I gave her manual chest PT (which she hates).  And since I gave her a second dose of Lasix late at night, she had to get up twice to pee.  Which stinks for us, but is good for her lungs.

It is now Saturday night.

She had a good day.  She was very playful and happy.  And her sats were better than yesterday.  So, I'm hopeful that tonight will be a better night.

This morning I walked the dog to Starbucks and met some friends after they ran 14 miles.  I haven't been able to blog about it, but I haven't been able to run in weeks.  Well, I guess that was pretty easy to figure out from how crazy it's been.  But, I have an injury and it is killing me.  So, I walked the dog instead.

And I re-organized Harlie's closet.  I didn't take a picture.  But I will later because I know you're dying to see how much better it looks.

Okay, that's it for now.  I must stop.  If I could only blog more often, I wouldn't have to write such looooong posts.  Sorry about that!

Thank you for all your continued support and love!

Much love,
Christy xo