What Happened?

As I posted on FB and have talked about with most of my family we had a stay at Camp Dell this weekend.  That would be Dell Children's Hospital.  Not fun.  Here's what happened.

Friday we drove over to Dell to see Isabel's allergist for her egg challenge.  We have been avoiding egg since she had reactions last year to some fried rice with egg.  Since then she has had negative blood and skin tests for egg and can eat things with eggs cooking in them fine.  We just avoid scrambled egg things.  Heat denatured the egg protein that causes the allergic reaction.  Heating scrambled eggs isn't enough to get the protein denatured enough, but baking is, so that's why she can eat baked goods with eggs.  We think that the reaction she had with the fried rice was most likely cross contamination from peanuts.  We were eating Chinese takeout.  This was pre-nut allergy diagnosis.

Anyway, we get to Dell for the egg challenge and Isabel coughs a few times.  Nothing alarming, just a couple of coughs.  She had done the same thing earlier in the morning.  The nurse wanted her allergist to come listen to her just in case she heard wheezing.  Sure enough, the allergist said she heard a tiny little bit of wheezing and that the egg challenge was canceled.  She sent us home with an albuterol inhaler (we had previously only been using albuterol with the nebulizer) and told us to do 2 puffs every 4 hours for the rest of the day and possibly Saturday.  So we went home and did as told.

Isabel seemed to be doing ok.  After waking up from her nap I noticed wheezing and decided to do the nebulizer with pulmicort.  Did that and she seemed to be doing ok.  She was playing with Logan, etc.  I tried to put on a movie and have a low key evening.  We did the albuterol nebulizer again right before bed.  Isabel was tired and asked to go to bed.  Brian and I went to see a movie while my Mom was watching the kids.  My mom texted us that Izzy was uncomfortable so we left the movie and I called the pediatrician's office on the way home (1 mile away).  As I was talking to the nurse Brian went to give Izzy another nebulizer treatment, but he just called down that we needed to head to the ER.  I told the nurse we were heading in and asked her if we should go to the ER closest to us or to Dell.  She told us Dell without actually telling us Dell.  Brian drove quickly to Dell.  He missed the sign for the ER and ended up in the ambulance bay.  Izzy meanwhile started puking.  A lot.  I ran her in to the ER and they immediately did a pulse ox reading that was low.  I think 84 or so and rushed us back to a room and started the albuterol.  The RT gave albuterol every hour and we saw the ER doctor who basically just called the IMU doctor (intermediate care).  The resident came down and talked to us about what they were doing and what the plan was.  His attending came down and talked to us some more a little while later.  I said to the doctors "Do you think she has pneumonia or a collapsed lung?"  They asked if Izzy had had a chest x-ray.  I said no and they said it wasn't needed and that it seemed like it was 'just' asthma.

Sick sick girl in the ER

So we got a room in the IMU.  We are there a few minutes when the doctors started paying attention to Izzy's blood pressure.  It was consistently very very low.  At one point it was something over 19, but it was almost always in the mid 20s.  So the IMU doctors said they were going to consult with the PICU doctors.  The PICU doctors were there in about 90 seconds and said she was going to the ICU.  So we headed up to the ICU.  Not a place you want to be.  Absolutely terrifying.  The doctors were debating on giving her blood pressure medication, but ultimately decided against it.  The first thing they did in the ICU was take a chest x-ray.  Sure enough, it showed a partially collapsed lung and one of the doctors said it was most likely due to viral pneumonia.  The first 6-8 hours in the ICU were indescribably terrifying for us.

Izzy was on continuous albuterol for the rest of Friday night and into Saturday.  She was weaned down to once and hour and then once every 2 hours and then 3 and then they started decreasing her dose and her blood pressure started to come up.  Saturday she was doing SO much better than Friday night.  None of us slept at all Friday night.  Isabel was up for 36 hours before taking a 1 hour nap.  Brain and I were at 43 or 44 hours before we got 4 hours of sleep.  Honestly I really didn't notice it except that my eyes kept literally burning and watering, but besides that the adrenaline kept me alert and going.  I couldn't eat anything until yesterday morning.  I just couldn't think about eating anything and keeping it down.

Not feeling so great.

Saturday Logan came to see her for about 2 minutes before we realized it was a bad idea.  She was happy to see his face though!  Thank goodness Grandma was in town to help out with the egg challenge!!!!  She took care of Logan until Grammy and Papaw came to help out Saturday afternoon. Taking care of Logan is a big job, so I'm thankful!

Tater tots for breakfast, lunch and dinner!

We had a couple of friends come and visit Isabel too.  I know Isabel appreciated the familiar faces.  Isabel was doing pretty well in the ICU on Saturday except that she just couldn't get off of the oxygen.  She was doing CPT therapy every 6 or 8 hours which was this vibrating vest that is designed to get the crap out of her lungs and get the collapsed part working again.  She would sing songs and 'call' people while being vibrated.  It was SO funny.

I saw this guy in the hallway that looked SO familiar, but I couldn't place him.  Turns out it was our very favorite doctor!  Dr. Finnegan, Isabel and Logan's cardiologist!  He is seriously the best doctor the kids or I have ever had.  He is phenomenal and doesn't take any crap.  One of Izzy's nurses (our not favorite one) was complaining about him.  Brian and I were both like 'oh no you di-in't!" (that was said with a sassy attitude).  Brian was like 'well, he probably expect nothing but perfection and you're not perfect' or something along those lines.  I really can't say enough good things about him.  He's also constantly asking about Grandpa and if he's gotten his AID yet.  He asked about him in the hospital too!  I wish Grandpa was there to get a lecture from him!  :)

Feeling better and getting out of the ICU in a few hours!

We graduated from the ICU to the regular floor Sunday afternoon.  A few minutes after we got there the resident came in and told us the plan.  We would continue with the albuterol and start titrating down to her home dose.  If she could tolerate the home dose twice in 8 hours and her didn't need oxygen we could go home.  Great!  So at 4:30pm it had been 4.5 hours since her last albuterol treatment.  She needs them every 4 hours.  The RT came in to do her CPT with the vest and I was like 'um, they usually do the albuterol with the vest.'  The RT goes 'they cancelled the albuterol order 15 minutes ago.'  Umm...what?!  Albuterol is what is keeping Isabel breathing, so I'm SURE they didn't cancel it.  She goes out and 'double checks' and comes back and says, yes, they just did it 15 minutes ago.  I said 'well, I would like to speak with the doctor because that isn't correct.' as I was trying not to take it out on the RT who was just following orders.  I was FURIOUS.

So the doctor gets paged and comes in and I explained that Isabel needs albuterol (DUH).  The doctor said this: 'before sending kids home we like to have them on the dose of medicine that they would be on at home.'  I said "right, so why isn't she on albuterol?'  and the doctor just kept nodding her head.  It was effing insane.  It was like she was on drugs or just kept agreeing with me because she didn't want to admit to a mistake?  It was SO strange.  By this time it was almost 5 and Isabel was (obviously) starting to have problems.  Brian and I were so focused on getting Izzy her damned medicine that we didn't realize how effed up the conversation was until about 30 minutes later.  I wonder how long it would have been until they realized that Izzy was in trouble?  Scary.  Scary.  Scary.  Note to parents (or anyone):  double check EVERYTHING while in the hospital a sick loved one.  Had I not been a complete bitch to the RT who knows what would have happened.  I complained to the next resident and the nurse and will be writing to Dell when they (hopefully) send me a comment card.

I really wanted our experience at Dell to be awesome.  It definitely fell short.  The ICU met and exceeded my expectations, but the regular cow pasture room sucked.  Might as well have been in a doctor's office waiting room.  Dell, I think you are maybe getting too big to provide complete, quality care.  :-(  I was treated and cared for so much better with my 3 c sections than on the regular floor at Dell.  Children should receive better (or at the very least the same) care than grown adults, IMO.

So we're back home now and Isabel is doing very well.  We're still on a lot of meds, but she is doing fine.  Running around (although we're trying to limit it) and very happy to be home.  We told her that we were going to be waking her up in the middle of the night to give her medicine and she asked if she could go home afterwards.  :(  She thought we meant we were going to be taking her back to the hospital.  We will see the good doctor Frank tomorrow morning.  He just happened to do his specialized pediatric training in pulmonary kids stuff (technical term I made up).  It was a billion years ago, but he's great and he cares about my kids a great deal.  I'm actually looking forward to seeing him.  The last couple of times the kids have been sick we've seen other doctors in the practice.

Today (Tuesday) I took Isabel in for a follow up with Dr. Frank.  He increased her flovent dosage and wrote a prescription for a xoponex inhaler (better side effects for Izzy than albuterol but it's like liquid gold and is very very $$$).  So now we'll be down another couple hundred bucks with the new meds, but I will gladly pay it.  Dr. Frank said all of Seton (Dell is part of the Seton network) has recently gone through a big cost-saving program that includes no xoponex in the pharmacies at the hospital, so that's why she didn't get it.  Thanks Dell.  We appreciate that Isabel's heart rate was in the 170s at times and her blood pressure was so low, but save $100 by not giving her xoponex, by all means.  I'm sure the stay in the ICU saved you money, right?!  I really don't know if xoponex would have been any better, but it still pisses me off.

So I talked to Isabel's preschool teacher today and explained what to do if there is a problem.  Basically give her the rescue inhaler and call me. If it's really bad give her the inhaler, call 911, and call me.  Her doctor said she could go back to school, but I wasn't feeling comfortable with it just yet.  When we got to school Isabel clearly was doing fine and wanted to stay and play so I told her I would be back in a couple of hours.  So she'll be there a total of 2 hours today.  I'm still tempted to go check on her.  I know her teacher will call me if anything changes, but still.  For just being released from the hospital it seems crazy that she's doing so well.  The doctor said it will be good for her to see friends and get back to her normal routine as quickly as possible, so we will try to do that.

*a side note for me (since this journal/blog is basically for me to remember things).  We took both Isabel and Logan in to the doctor this past month for persistent fevers.  Logan fist and then Isabel about 2 weeks later.  They did a CBC on Isabel and decided that it was a viral infection.  This was about 2 weeks ago.  She had no other symptoms besides the fever.

Not sure what's up with the captions, but I'm tired of trying to fix it.  Here are some pictures.

TV watching, but actually feeling better (even though it doens't look like it)

Possibly the worst food I've ever taken a bite of.

TV time. SO much TV

More candy bribery in the regular room.

Going home home home!

Maze at Dell

Butterfly wall before leaving

Thumbs up with the nose pinched. It smelled like puke.

Being silly with Logan

 

Dr. Frank's office today.