Purgatory

This post is an extremely long winded explanation of the past two weeks of our lives.  I have included specific details and links for our own benefit and future reference.  If you are only marginally interested, read the summary post above.  Photo disclaimer: all of the photos posted below were taken with my camera phone, which is less than desirable.

Purgatory: any condition or place of temporary punishment, suffering, expiation, or the like.

So I have complained a lot about how awful last winter was for our family…, the chronic ear infections, RSV, pneumonia, ear tubes, the vomiting, the list goes on and on.  I thought because we suffered so much last year, that maybe this year we would be spared just a tiny bit.  Not so. 

First was the beginning of another round of chronic ear/sinus infections for Elise in September.  Then it was H1N1 in October.  November is kind of a blur, but Julia came to visit and her oldest son Andrew broke his femur on the slopes at Breckenridge, so we’ll claim that as well.  I’m pretty sure there was some vomiting then too.  By December we were still in infection/antibiotic cycles with Elise, which included allergy testing and blood work.  Plus there was more vomiting—including me.  Then January came and we had our first bit of good news when Elise went in for an ALL DAY food challenge to see if she had grown out of her milk protein allergy.  Yay, hooray!  She passed. 

Then during the last week of January, Grace started coughing and had a high fever.  She threw up all night long and then fevered for the next couple of days.  On Saturday, January 30th, Elise started with the fevers and vomiting.  Her fever got pretty high ~104, so I called the after hours nurse line and because of her respiratory rate, they advised me to take her to the ER.  After a couple hours there, they released us.  We watched her over the weekend and talked with the doctor on Monday.  He said the virus going around was a 3-5 day thing, and if she wasn’t better by the next day, to bring her in.   I talked with the nurse on Tuesday morning and told her Elise’s fever was down to about 101 when she woke up.  I was waiting to hear back from her to see if I should take her in then around 2:00 pm, I felt like I really needed to go in and wake her up from her nap and take her temperature.  104.7.  So at this point I am pretty much freaking out, yelling at the kids to get in the car, crying because my little almost 2 year old is a limp noodle.  Totally lethargic.  We got an appointment right away and the doctor told us she had pneumonia and he wanted her in the hospital immediately. 

When we arrived at Littleton Hospital, we were almost immediately taken from triage back to a room because her oxygen saturation was so low and her fever was so high.  We spent 2 or 3 hours in the ER, getting chest x-rays, breathing treatments, IV fluids, IV antibiotics, etc. 

Then they admitted us up to the Pediatric floor.  After the blood work and x-rays came back, they told me she had RSV, and pneumonia.  They put her on high flow/positive pressure oxygen to keep her bad lung inflated.  She had breathing treatments, and more IV antibiotics one of which--Vancomycin—is a last resort antibiotic drug with dangerous side effects.  She had a reaction to it (of course), and then had to be administered Benadryl every time they gave her the Vanco.  The doctor told me the worst case scenario would be that we would get transferred to a different hospital where she would need surgery.

We spent the next 6 days there in isolation in the Pediatric Intensive Care Unit.  We had one to one nursing until the day before we were released.  Every nurse, doctor, respiratory therapist, etc. had to wear gowns, gloves, and masks when entering our room—even housekeeping.  Elise would cry before anyone ever even touched her, and started to put her arm over her eyes so she could “hide”.  She didn’t talk much, didn’t eat, barely drank, and did not stand up or walk until the day they discharged us.  It was a very slow process for her to improve, but gradually they started turning her oxygen down, until finally she was on “room air”.  They took her IV out the night before the discharged us.

Then to add insult to injury, both Stuart and Grace had pretty bad coughs all week, so on Friday morning, Dave took them into the pediatrician.  After listening to both of them he said, “Don’t freak out, but they both have pneumonia.”  They were lucky enough to have the lesser or “walking” pneumonia, and went onto oral antibiotics for the next 5 days.

They discharged Elise on Sunday, the 7th of January.  My mom also flew in that afternoon.  By Sunday night her fever was back up to 103+ and she was vomiting.  I paged our doctor and the on-call doc told me it might be just a lag in the oral antibiotics catching up where the IV meds left off.  Monday she looked a little better, and Tuesday she had a follow up with her pediatrician.  She had continued with the high fevers on and off all day Monday and Tuesday, so by the time we got there and he listened to her, he told us she most likely had a pleural effusion and sent us to the Children’s Hospital in Aurora on the East side of Denver(almost an hour away). 

After a couple hours in the ER, they did a CT scan of her lungs and more blood work.  We were admitted upstairs to the pulmonary inpatient unit.  By Wednesday morning we were able to talk to the pulmonary specialists and they explained that she had a pleural empyema as well as a Pneumatocele.  Normally they would schedule her for surgery right away to drain the fluid surrounding her lungs, but because of the pneumatocele, the surgery would be a little more complicated, so they wanted to make sure they got the right surgeon.  They were able to get one of the top surgeons in the country for this procedure, video assisted thorascopic surgery (VATS) to agree, and she was scheduled for mid-morning on Thursday.  As soon as the pulmonary doc told me they had scheduled the surgery, I felt so relieved and knew it was the right thing for her.

On Wednesday night, our former bishop came out to visit us, (Dave was also there that night), and together they gave Elise a priesthood blessing, then they also gave me a blessing.  It was a great comfort to both of us and I had no anxiety at all about her surgery. 

On Thursday morning, Elise slept in very late, and I spent most of the morning crying.  Not because of fear or anxiety, but because I felt so much love and support from so many people.  We had a literal army of people praying for her and it totally overwhelmed me.  About 1:00 pm, they came in to transport us to surgery.  They gave her a little sedative or something before we went in and I think she was totally hallucinating.  She kept holding her hand in front of her face and looking at it like it was detached from her body.  We were able to walk her into the operating room and stay with her until she went under.  Since we were dressed in full operating room regalia, with bunny suits, shower caps, and masks, I am not sure she really knew who we were or cared too much.

Dave and I went to get lunch in the hospital cafeteria, and Dave did his best to make me laugh.  At this stage I was so run down from lack of sleep I was totally laughing at the slightest things.  I managed to get a sinus infection sometime towards the end of our first hospital visit, but I was trying to downplay it while the doctors and nurses were around so they wouldn’t kick me out.  About an hour after we finished lunch, the surgeon came out and told us she was fine and we’d get to see her in another 15-20 minutes.  This is how she looked when we found her:

 

She was pretty disoriented and would wake up intermittently and cry like a new kitten.  That is her baby in the top left side of the crib with an oxygen mask on.  After about a half hour she was able to go back up to her room.  Part of the surgery included leaving a chest tube in so she could continue to drain.  Here is a picture of the “collection box”.  

I kept asking how it worked because the left side was a bubbling column of blue water hooked up to a vacuum in the wall.  Dave was trying to explain the physics behind it and it was making my brain tickle, so here we are hovering over our post-op baby with like 25 different tubes and wires coming off of her body and I am giggling like a school girl.

She continued to have fevers for the next couple of days, but they were able to take the chest tube out on Saturday.  I hadn’t been home since they admitted us on Tuesday, and I hadn’t seen the kids since then as well, so Dave drove out with my mom and the kids, and since the kids couldn’t come up to her floor, I took them out to lunch and took them to Target to pick out some new toys.  Because it was nearly an hour drive home, it wasn’t worth the round trip.

I wanted to be there when they took the tube out, but didn’t make it back in time.  I told Dave to make sure my mom was out the door, down the hall, in the elevator, in a soundproof chamber while they took the tube out.  They gave her some morphine, but essentially, they just pull the tube right out—and there was like 6 or 8 inches of it inside her body.

Sunday and Monday she improved drastically, and she was able to get out of the crib and do this:

 

and this:

and they removed the isolation status on Monday morning, so we were able to go to the playroom and do this:

and we got to walk the halls in this:

 

They discharged us on Tuesday morning. 

We are so incredibly grateful that she is doing better each day.  It will take many weeks for her lungs to heal and be at full capacity again.  We had ample warnings about exposing her to germs these next several weeks, and it will be a challenge to keep her (and her siblings) healthy.  She has lost a lot of weight and seems pretty breakable, but hopefully we can inject butter into her food when she is not looking.  We feel blessed that she received great care and attention from the doctors and hospital staff. 

Lastly, we are thankful for and indebted to so many friends and family members who brought us meals, took care of our kids, and offered their support, prayers, and concern over these past weeks.