Postscript: Recovery

Everyone is fine.  We're all healthy and breathing normally.  I am eating a great deal and perhaps consuming a bit more wine than usual.  And the week after Bridget went back to school, Lord knows I slept my ass off. (Or ass "on," as the scale may suggest)

I'm still feeling numb about the whole thing, which I think is ok.  Bridget's life was never in danger.  Even in intensive care, the first thing the doctor said was that she would be ok, but she needed a nurse to be able to respond to her instantaneously, which is not possible on the floor.  The only times I had that pit in my stomach was on Tuesday when 5 days in we weren't seeing any improvement and on Wednesday night when Type I diabetes was on the table.

This was not a fun experience.  But this wasn't cancer, cerebral palsy, or Long QT syndrome. We have friends who have these challenges and many of the other families we met at Hemby were dealing with these bigger issues.  I don't ever want to spend another night in the hospital, but emotionally, thank the goddess, we have never been down those other paths.

Still, I expect that we'll have those unexpected shocks to the system like we've had with Christopher over the last year--when he gets a cold, starts wheezing, or starts coughing more than he should. The unexpected part is going to the doctor and NOT being sent to the hospital and the shaking and adrenaline rush I get afterwards. I don't expect to get a jolt of electricity when we go to the doctor and get an OK check up.

Enough of the maudlin stuff.  I cannot stand that part of blogging.  Let's instead talk about how freaking amazing Hemby Children's hospital is.  In our 8 day, the kids had two "parties", a visit from the Discovery center, daily visits from the child life specialists delivering toys, DVDs and books, and two therapy dog visits.

This picture is of Jeff Taylor of the Charlotte Bobcats and two of the Ladycats who came by. Here is a better picture from the official Bobcats folks.  Jeff gave a donation to Hemby for parents to use iPads during their stays there.  I think it was generous both for the donation and to meet Bridget.  It was definitely a highlight of her day.

In fact, this next picture is Bridget showing ZeeZee (her new Zebra) the picture of all of them.  That's one of my favorite pictures of Bridget.  And ZeeZee seems pretty into it, too.  

 The next day, a therapy dog came to visit Bridget.  God bless therapy dogs.  She LOVED meeting this gentle, sweet dog.

In case you are wondering, yes, all of these things make a big difference.  The visits of folks break up the monotony of sitting there and waiting for the next respiratory therapy treatment. Even 10 or 15 minutes is wonderful.  And GOD KNOWS, there is NO SLEEPING in hospitals.  My first time in the hospital 5 years ago, one of the first memories that stands out for me after getting out of surgery is the nurse laughing when I told her that I was tired and just wanted to sleep:  This is a hospital!  You don't get to sleep here!

In any case, we are done with that.  I don't want to be back in the hospital ever again.  Done! Done. Done. Done done done.  

We Are Blowing this Popsicle Stand!

Part 1

Part 2

Part 3

The first three posts about being in the hospital were mostly written about the first 24 hours of being here. I had that much emotion to process from Bridget’s dramatic arrival into the hospital.

Fortunately, no other day was as dramatic as Friday. Unfortunately, Bridget didn’t really progress from Saturday afternoon until Wednesday afternoon. In fact, on Monday, Bridget took a significant and scary turn back. From NICU and Christopher’s RSV, I’m used to two steps forward and one step back. But after PICU, Bridget didn’t take any steps forward at all. She couldn’t keep her oxygen saturation levels up without a good deal of extra oxygen.  

By Tuesday, Dave and I were getting more concerned. This isn’t our first trip to the pediatrics party and Bridget’s recovery did not seem to be playing out like we expected. However, it was when some of our caregivers started to act more concerned about her lack of progress that we decided to act.

Thank God for Dave.

Dave knows the healthcare system better than I do and probably better than most people do. His family is chock full of medical doctors and other forms healthcare professionals. He works in the healthcare industry and he teaches in UNC Charlotte’s MHA program. He knows the paths to getting things done and the words one should use to get on those paths. I’ll be honest with you: I’m used to getting a bit of respect as a PhD. Nonetheless, it’s hard to look smarty pants to a doctor when you’ve just woken up and you’re in your owl pajamas. I’m just saying.

So I found an ally among our caregivers who started the ball rolling in the background. That brought the right people to our room to check in on us.  And that let Dave say the right words to the right people in the right tone of voice. Also, he was not wearing owl pajamas.

We finally got an explanation of why things may not be progressing: a) perhaps Bridget’s lungs were taking much longer to heal than expected or b) perhaps something worse was starting to develop and surgery may be involved. Option A was more likely, but her lack of progress suggested that Option B was also on the table. Dave asked for a consult with a pulmonologist o.  

The advice we received from our advocates was that we might have pulled the trigger about a day early on the pulmonologist, but it was certainly reasonable at this point to start figuring out why she wasn’t getting better.

Turns out, we pulled the trigger about a day early on calling in the pulmonologist.

Around lunch at Wednesday, Bridget started to turn that infamous corner that everyone had been talking about. But Bridget, being Bridget, didn’t just turn the corner. She peddled furiously around it on her tricked out bicycle at high speed and stuck out her tongue. I may have been running alongside her flipping a couple of birds and otherwise taunting it.  In actuality, she went from 3 liters of oxygen at 10 a.m. to a ½ liter at 4 p.m. That’s an enormous improvement in just 6 hours.

Of course, the pulmonologist arrived at 6 pm on Wednesday. We spent a boatload of money to find out that 1) Bridget had just needed a little more time to let her lungs heal (FIGURED THAT OUT!!) and that 2) normal lung cells have cilia that move massive amounts of dust and other crap up out of your lungs every moment of every day and that you are constantly swallowing said crap (ewww). Further, new lung cells, which develop after pneumonia, do not have cilia so all that crap stays down in your lungs. Hence, you need to cough. Or something like that. Better to have had him there and not needed him than him not be there and we did.

ANYHOO, there was one more curve ball this hospital trip wanted to throw us. And it was so bad, I couldn’t even post about it on Facebook. Wednesday night, when things were looking so much better and it was clear we were going home soon, our doctor ordered Bridget’s IV drip removed. Then she told me they were going to do some additional testing on Bridget in the morning.

Apparently, they found sugar in Bridget’s blood and urine when she checked into the hospital. Although they could explain the sugar in her blood from the steroids, the sugar in her urine was more puzzling. They tested her for diabetes Thursday morning.

Holy. F*cking. Shit. Were we going to come into the hospital with pneumonia and leave with Type I diabetes?!? Have you ever had one of those moments where you know you are supposed to be emotional and yet you are perfectly calm?  That is how I was. I didn’t even turn to Dr. Google. Fortunately, Dave did and sent me a couple of good links for me to read Thursday morning before we got the results.

I’m not going to draw this out: Bridget does not have Type I diabetes. The stress from the steroids and the pneumonia and PICU caused sugar to “spill” out of her kidneys and into her urine. The sugar in her urine is not normal, but nothing was “normal” during that time they were testing her. She does not have diabetes and this is not an early indicator of her getting Type I diabetes. Every time I say that to myself, I let out an enormous sigh of relief. Thank GODDESS no one mentioned this to us until the pneumonia resolved. If I had to be dealing with that issue along with Bridget’s lack of progress, my head would have POPPED off my body and spun around the Pediatrics ward like an over-aged Medusa. 

So the good news: Bridget has been off any oxygen support for 24 hours.  Everything is fine.  Everything is going to be fine. And we are going to go HOME TODAY!!

NICKY, PICKY: FRICKY Ewe (Part 3)

How we got here.

PICU sucks.

There has been unexpected phrased that comes in a close second to “Where did she get that scratch on her forehead?”

It is:  I remember you!

I have run into a lot of people from Christopher’s stay last year and we recognize each other.  The first time, I saw a nurse on Saturday morning and we were both like “I know you.”  I mentioned Christopher. She gave me the sweetest touch on my arm and said “I remember you!” 

A few hours later, our dietary aid dropped off lunch and I said, “I remember you!” and she replied, “Yes, I saw you sleeping in PICU. I didn’t recognize your daughter but I knew you!”  Obviously, she had seen me sleeping with Christopher and my drooling, snoring, wild-haired image had been seared upon her brain.  I remember her because of the outstanding job she did then (and does now) at making sure my children and I have good things to eat.

Monday morning, both our nurse and our respiratory therapist walked in the room and immediately said, “I remember you.”  Our nurse, in fact, remembers amazing details about our family! 

I think I figured out this morning why everyone remembers me so well.  Apparently, I am one of the few parents who sleeps with their sick child in their hospital bed. Last night, I surprised our nurse when she didn’t see me on the sofa and then saw a big lump in Bridget’s bed. Later, when I asked Bridget if she wanted me to move and she cut me a sideways glance that questioned my sanity. 

Speaking of Bridget….

I’ve fallen so in love with her during these last 5 days.  She is an extraordinary child in normal situations. But here, she is so strong and charming, that sometimes I find my heart exploding with love for her.

On Friday, she “won the prize” for being the best intake in the hospital:  she received her IV without any screaming or no crying. She was shocked they did that to her, but she didn't even have tears in her eyes.  My brave little squirrel even had to have another blood draw a few hours later from her other hand and didn’t cry then either. 

In PICU, when they were trying to reposition us to go to sleep, they tried to get her into a more prone than a sitting position.  She was screaming NO!! and hitting at the nurse when I realized that the previous nurse had told her that sitting up straight would help her get better quicker.  She is going to do what she needs to do to get better. 

She has this sly, charming smile when she thinks adults are being silly or are telling her some untruth.  We were watching Madagascar last night, and during the song “I like to move it, move it!”, the nurse started to dance.  Bridget gave her that smile and I swear the woman’s socks just shot right off of her. 

The doctors, nurses, and therapists have been encouraging us to get her moving.  We’ve had to explain to every single one of them that the problem is NOT getting her up and out of bed.  It is that she wants to run the halls right now for the whole day.  They finally let her walk around for just a little bit yesterday, but it was too much.  She pooped out last night and had to go back on major oxygen.  Today, she is not allowed to even walk to the bathroom.

The problem is that she has asthma and pneumonia or asmonia as the PICU docs called it.  The issue is whether the asthma or the pneumonia is worse and when do you treat which one and how since treatment of one (exercise for pneumonia) aggravates recovery in the other (asthma). Bridget apparently has a much worse problem with pneumonia than asthma. We are on Day 5 right now and although she is better than we she went into PICU, she is not progressing.  We are exploring our options on how best to help her out. 

She is tired of being here.  Even a super squirrel like my Snidge can get down. There are two ways I’ve discovered I can help when she gets really upset about being here.  One, we have an ongoing story about Pirate Bridget who sails the seven seas with her six pirate chickens.  Pirate chickens are quite a sight, in case you are wondering.  Two, I tell her what is wonderful about herself and I give examples about why I think that from what she’s done here. It lets her drift off to sleep feeling good about what is going on here and it lets me share with her how much in love I am with her.

NIC, PIC: EFF U (Part 2)

This is how we got here. (Part 1)

We were in our room for only about 4 hours when they started broaching the intensive care option. Bridget, at this point, was on 5 liters of oxygen and couldn’t keep her saturation above 92.  As I learned, at that much oxygen she should have easily been at 100% saturation.  They had also tried albuterol every 1 to 2 hours and nothing was working. 

The mention of intensive care scared me. First, I was under the impression I couldn't spend the night with her, and that was terrifying (for me and Bridget).  Second, intensive care is for sick kids.  Was Bridget really that sick? 

Fortunately, they told me NO ONE was in PICU and hadn't been all week so we could get the one private room in PICU.  And second, they said Bridget would be fine, she just needed focused help to get over this hump.  In fact, by being the only child in PICU, there would be two nurses and one doctor dedicated solely to her. 

Like with the ER decision, I felt the PICU decision was more on the border than it was.  Even as they processed her into her new “room”, they said as much: Maybe she needs to be here and maybe she doesn't, but let’s be safe.  The PICU doc even refused to believe Bridget’s oxygen sats were what they said because Bridget looked so good—pink cheeks and red lips.  She even replaced every piece of equipment they were using to monitor her until she believed Bridget’s lungs sucked in as little oxygen as they did. 

This is where our story takes a negative turn. Until this point, Bridget’s version of a hospital visit was similar to Christopher’s:  some medicine, some inconveniences and a lot of attention.  PICU, on the other hand, was no fun at all.

She had to have continuous albuterol for 14 hours.  This was delivered to her along with her oxygen via a face mask that had to stay on while she slept.  We did not sleep.  It fell off when she rolled over and when she dozed, she pulled it off.  I tried, while I was awake, to put it back on.  The overnight PICU nurse told me that at one point when I slept for 2 hours, he spent 10 minutes hovering over her putting it back on while she whacked at him and the mask in her sleep.

During this night, both Bridget and I also processed our negative emotions.  This is fancy psychology speak for saying we broke down and cried.  I cried quietly.  She did not.  In all honesty, it’s the most upset she’s ever been since she was an infant and was convinced that all adults were idiots. (That has not really changed) She was distraught and scared and angry and uncomfortable and very, very tired. She was nearly hysterical and it was an awful.

The morning was a bit better.  They put her on nasal oxygen, which improved everyone’s mood.  This is her when they  put her back on nasal oxygen. She is a bit puny here.  And one may notice a scratch. I did not get any pictures of her on her full time face mask, because that’s a memory I can let go (to haunt me in my vulnerable times).

   

They also started a chest therapy called The Vest which literally shakes the crap out of her.  Fortunately, this video is only time she hasn’t screamed through it, so I’m glad it caught it.

Note:  This is video of a very sick Bridget in PICU only a few hours after the first picture, yet she looks like a boatload of charm and fun.  She is an amazing girl, isn’t she?

The good news is that she was able to graduate from 4 liters to 2 liters nasal oxygen over the course of Saturday and that scored her a room on the regular floor.  WOO-YAY-HOO!  Things haven't been all rosy since then (except, of course, her cheeks). She's still sleeping at 3 liters of oxygen.  That is not "bad" in that it's dangerous.  But it is not "good" in that they are not going to let her escape from here any time soon.

Part 3

NICU, PICU: F*ck You (Part 1)

While I can have quite salty language in real life, I tend not to use it as much in this blog.  And, indeed, I planned on titling this entry “Well, Crap” when we checked Bridget into the hospital on Friday.  However, we she ended up in PICU (Pediatric Intensive Care) after a few hours, this title phrase stuck in my mind.  It actually became so much of a chant in my head that for the 1 or 2 hours I actually slept Friday night, I dreamed that it was a common, humorous phrase among the intensive care staff and they were delighted that I had figured it out.

I’m pretty sure it is not a phrase among the staff in NICU or PICU. And I want to be clear that any negative sentiments I have about NICU or PICU are about being there and have nothing in this universe to do with the staff.  The strongest positive feelings I have about nurses come from the relationships we’ve developed in our times being there.  These are talented, kind, and often very funny people (they are treating children AND helping parents not freak the freak out, you know).

Finally, if you notice that your child over two years old is breathing more than 40 breaths per minute (Count ‘em!), you need to get your sorry ass to the hospital because your child is VERY, VERY SICK.  It doesn’t matter if her lips aren’t blue or she’s a happy child or she is even playing or you’ve got her fever under control.  Bridget is a very happy, funny, positive, upbeat charming girl with deep pink cheeks and lips and she can charm the socks of everyone—even when she is sick enough to be intensive care.  So this is one time you can count the breaths and ignore the child.

So, now we can start the story.

Thursday, I came home and noticed the big scratch across Bridget’s forehead.  We need to discuss that scratch, because Every. Single. Person we met on Friday asked about the scratch. We don’t know how she got the scratch.  I left for work on Thursday morning, came back Thursday night, and there was a prominent scratch on her noggin that someone who shall remain anonymous BUT IS MY HUSBAND has no idea what happened.  PICU doctor called it a tattoo from Daddy daycare.  Ahem. 

So after determining that the previously unnoticed PROMINENT scratch was of undetermined origins, I noticed Bridget was not doing well.  Her fever was up to 102, she was puny and she seemed to have shallow breathing.  I counted her breaths, and they were hovering a bit above 40.  That is the cut off.  We decided to eat a quick meal and then go to the hospital. She actually ate dinner and afterwards was literally running around the house and played 3 or 4 rounds of hullabalo with Christopher.  Huh, I thought, I must have over-reacted.  

We went to bed and she slept with us as is the norm when someone is sick. (And is usually the norm when they are not, but I won’t mention that)  I heard her shallow breathing and her cracking breaths and thought, should I go to ER right now??  No, she’s sleeping, ER sucks and she seems fine.  We’ll see our pediatrician first thing in the morning.  So I went back to sleep.

There is only one other time I feel more guilty about a decision I made as a mother and that was my miscarriage with Colleen. I do not feel guilty about 7 of my 8 miscarriages.  But the 8^th one is when I went running when I was pregnant with Colleen and her heartbeat was too high and we (I) lost her.  So yeah, not going to the doctor on Thursday night is currently reigning as the second shittiest decision I’ve made as a mother thus far.

Skip to Friday at our pediatrician whom I love.  Bridget’s lungs were “wet and clamped down,” which is apparently very bad.  They gave her two nebulizer treatments at the office, but her oxygen went from 93 to 92 to 89.  Less than 90 is bad.  The doctor suggested a trip to ER for more nebulizers. She suggested that because Bridget looked so good, she probably wasn’t that sick and wouldn’t need to be hospitialized.  But I was concerned we’d end up in the hospital anyway so she checked us in.  (I DID SOMETHING RIGHT! WOOHOO!)

At this point, I still felt like I was over-reacting.  The nurse checked her in and began her intake.  Bridget was still being “Bridget”—lots of energy, laughing, smiling, talking to everyone one, and charming the socks off everyone.

Then the nurse listened to her lungs and said, “Wow. Her lungs are really wet and clamped down.”  Apparently, “wet and clamped down” is not some quirky phrase my pediatrician uses to explain to me what she hears.  It’s apparently a thing, and it is Not Good.  Then they hooked Bridget up to the oxygen saturation monitor, which read 85. 

“WOW,” the nurse said.  “She is a lot sicker than she looks.  Kids don’t look as good as she does as sick as she is.”

It was the first clue that I didn’t over-react by suggesting we skip the ER, and that things were actually pretty bad. 

Part 2 tomorrow.  Sorry to serialize the story , but I am processing a lot emotional poop right now. 

Not Our Healthiest Week

Despite  Christopher's asthma diagnosis in October and Conor's funky fever in December, the kids have been quite healthy this winter.

Then, apparently, came spring.

I really don't mind fevers and viruses.  I can handle those problems.  Even with Christopher's asthma, we have learned how to handle respiratory problems and keep him healthy.  So Christopher kicking off Spring Break with a 102.6 fever is no big whoop-dee-doo except it means we skipped the Easter Egg hunt and Easter Services.

I do not, however, like these two things:
1) fatigue and lethargy (with a fever)
2) rattles/gurgles at end of  an exhale.

Both of those have been pretty strong indicators of pneumonia in our family.

And Christopher's extra long naps over the weekend and his refusal to wake up in the morning were diagnosed with pneumonia on Monday and Bridget's rattling breath on Tuesday night got her the diagnosis on Wednesday.  They are both on antibiotics and Christopher is responding very well.  I'll tell you though: Thank God(dess) bless albuterol.  Monday night, Christopher was hacking up a lung every two hours and within seconds after treatment, he was back to sleep, gently snoring.  Bridget is not doing as well, but she hasn't been on the daily steroids like him, so I'm hoping she turns her corner soon, too.

On Tuesday between the twins' pneumonia diagnoses, I went to the orthopedic surgeon to have an ongoing pain looked at in my foot.  I have enormous feet that were only made larger by the twins' pregnancy.  When I started running back in September, I had no problems, but I failed to change my shoes in time when they wore out, and apparently, the middle bones of my feet have been taking on too much stress and pressure and are irritated.  (Of course my feet are irritated at me)  I thought I had a stress fracture, so I'm thrilled I do not.

And despite having bunions that the PA declared as "impressive," I do not have to have surgery.  And indeed they do not recommend it.  So I will state what those of you who know me in real life must have figured out:  my feet are hideous!  I mean horribly ugly.  Even if they score in the top 99th percentile of big ass bunions to orthopedic surgeons, to the rest of the world: AVERT YE EYES!

I don't care.  I am past being embarrassed about my feet and their horrible misdirected toes. (Hammer Toe!  Da-du-duh-duh. Da-duh. Da-duh. Can't touch this!!) They let me run all over the place and they keep me healthy.  I am completely off high heels and am probably going to be Birkenstocks for the rest of my life, but I CAN and hopefully WILL ALWAYS run. So phhhht on my ugly ass feet.

I've got a boot to wear for a couple of weeks and some strong anti-inflammatory meds and then I'm good to go.  Just don't look below my knees and you won't be scarred for life.

I'm hoping the kids (right now, actually, just Bridget) get their lungs back in order.  After the surprise RSV trip-to-the-hospital for 5 days, I expect the unexpected at the doctors office.  Of course, the unexpected rarely happens, so it is unlikely for us to get to the hospital again (YAY!).  Nonetheless, I still carry that around inside me when they get sick.  I know that like NICU, it will recede.  But it still surprises me when that anxiety over their health and going to the hospital pops up.

Off to snuggle with my squirrel since we both sleep better cuddling each other.

I mean Bridget, not Dave.  ;-)  He's my smoochie muffin, not my squirrel.

On Smart TVs and Less Brilliant Humans

To remove any doubt, I will "reveal" up front that the Less Brilliant Humans in the title are us.

Nonetheless, we've had quite a few neighbors and friends ask us about our ongoing experiment with ditching cable and watching everything online and I have promised a blog entry about it, so here we go.

We got rid of cable and our phone in Fall and have not missed either since then.  Instead, we watch local TV through an antenna, rent and/or buy movies from Amazon Instant Videos, watch other movies and TV shows through Netflix, and if we really want to see something current, we hook up the laptop to the TV and watch shows (for free) through Hulu (not Hulu plus, which costs, but regular Hulu which is free).  We are cheap, so this all works for us.

We have two HD TVs.  One we bought 4 years ago from our TMZ winnings.  This TV was recommended by Consumer Reports Best Buy and we have it hooked up through another Consumer Reports Best Buy Blu-ray device.  We are very happy with the quality  of that TV and the Blu Ray is like WOW as far as detail and clarity.  However, note that we are cheap.  These are the Best Buys, which means 1) they are NOT the best rated and 2) they are not necessarily from Best Buy, they are just the Best Bargain.  The Blue-ray device is key to this whole thing working because it has the internet connections in it.  When one turns it on, there is automatic access to Netflix and through a menu, one can get to Amazon, Pandora, Flickr, games, sports info and all sort of other things we don't pay as much attention to.  It also has Hulu Plus as an option, but see the info about being cheap above; we're only subscribing to one TV service and Netflix works for us.

The second TV is a Smart TV.  We bought that with a small part of our tax refund this year.  It's theoretically the grown up TV, because I can only take so much Fresh Beats Band before my head explodes.  (Side note: this TV is in the front room of the house, the only room of the house that used to always be clean because no one used it.  Now it is used and it is no longer clean.  At least EVERY SINGLE ROOM OF OUR HOUSE IS USED NOW.  And no room is clean!)  So because this TV is "smart", we don't need to Blu-ray to access all the internet stuff.  Netflix, Hulu, Flickr, Amazon, Pandora, and, oddly, a boatload of Fox local news stations from around the country are available on the basic menu of choices.  Also, this is a Best Buy from Consumer Reports, but is actually cheaper than our first TV and the quality...HOLY COW!  It's amazing how much better both the video quality and its ability to get the local TV stations.  I don't see why anyone would want a Smart TV if you have cable.  But if you don't, it's a great idea.

So if we don't have cable, what do we have?  We have the highest speed internet access available.  And most of our devices are running wirelessly (two laptops, iPad, Smart TV) and we are not noticing an access problem.

So for nearly $100 less per month, we like it.

What we do miss is access to ESPN sports.  We can get other big sports events off the local TV, but we no longer have access to ESPN.  We do, ahem, have access to someone-who-gave-it-to-us cable access code, so we can watch ESPN on the iPad and the laptops.  But that would be the big downside for folks who really like ESPN.  And there is the issue of just leaving the TV on for background noise.  I don't do that.  I'd rather have the radio on.  But late at night, when my brain cannot handle thinking, I really miss House Hunters and House Hunters International as something to put on and enjoy but not think about.  For some reason, I don't want to put on any of my netflix TV shows unless I can sit down and actually watch them.  (Or actually, I watch them when I'm doing elliptical at the gym. I'm working my way through Parenthood right now)

So there.  I'd love to hear your solutions and strategies to save money and still be mindlessly entertained by TV!