Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #27: Great nurses rock our world.

While we have had our share of nurses that didn’t make us swoon, Theresa and Jan are forever ingrained in my heart as Heaven-sent women who were exactly what I needed at exactly the right time.

Theresa met Tessa within her first minutes in the NICU.  They bonded right away because of their common given name (little known Tessa fact: she’s actually a Theresa) and very quickly, Theresa claimed Tessa as her patient.  Theresa was outgoing and athletic.  Tessa has been our little scooter/swimmer/mover since long before she was born.  These two were kindred spirits from the get-go.

Our new little baby, exhausted from a feeding 

IMG_3935

Within the days that followed, Theresa and I chatted (and chatted and chatted) about everything under the sun while we waited patiently for Tessa to be well enough to come home.  I told her about our family and Ellie’s crazy antics.  She shared stories of her childrens’ wrestling tournaments and other quirky behavior. We talked about the struggles of now being a mom of two.  She encouraged me to take breaks to enjoy my older daughter.  At times, there may have been a few tears, but goodness, did we laugh!!  On more than one occasion in the week we spent tucked into that little corner room, other nurses from the floor came by and shut our door because we couldn’t keep the volume down.  We got a lot of “looks.”

Totally worth it.

She was exactly what I needed.  Theresa loved my little girl immediately.  She forced no unsettling stereotypes on us.  She helped me feel normal during a very unusual time.

She came in on her day off (which happened to be Christmas Eve) to say goodbye as Tessa was discharged.  We all cried.

Home at last…

IMG_3989

Jan was a different kind of perfect nurse.

In April, I was frustrated.  Overwhelmed with a hectic schedule, not able to get my students back on track after my maternity leave, tired of being a Grad School/Track Coach widow, stir crazy for warm weather, broke, and cranky, pneumonia struck and we spent a well-documented week in the PICU (here is the start).

Pitiful.  😉

IMG_5012

When Jan was assigned to Tessa, I was a little worried.  She was no-nonsense.  She was pushy.  She was on duty for the next week with only 24 hours off.

She was exactly what we needed.

There was no pity.  There was no woe-is-me.  We were to get the baby well and get on it with.  Jan was caring and compassionate, but she was on a mission to get our girl discharged.  And so we did.

Freedom!!

IMG_5058

 

We are so fortunate to have been under the care of these amazing women.  While I pray that we don’t end up back in the hospital, if we do, I hope that we will be lucky enough to cross paths with these ladies again!

 

Advertisements
1 Comment »

Home

We are home. 🙂

It has been 24 hours since we returned. Everyone under one roof.
Everyone (mostly) healthy.

We are so thankful for our nurses – Aida, Sheila, Jodi, Mary Ellen, and most especially, Jan. Jan, who was no-nonsense but lovingly devoted to taking care of our girl, who didn’t give anyone any chance to feel sorry for themselves, who calmed our nerves and got us home as fast as she could.

Here is life back to normal:

20140506-201737.jpg

20140506-201753.jpg

20140506-201803.jpg

20140506-201817.jpg

20140506-201830.jpg

20140506-201854.jpg

1 Comment »

Upward movement

In the Hunger Games of pinkeye, I am still winning.

However, much to the delight of my husband, I woke up this morning without a voice. Not just a little hoarseness… this is full-on, my-lips-are-moving-but-no-sound-comes-out laryngitis. So that’s fun.

I spent my day with Tessa as usual, while The Pinkeye Crew hung out at my mom’s house. John is the only one who is still technically contagious, but I’m trying not to take too many chances and am staying away as much as I can!

At the hospital, Tessa was much more herself. She was ready to talk and play and roll onto her belly… The wires weren’t quite ready for that rolling, but she was pretty amused by the tangled mess that she could create. While her personality is slow to emerge, we already feel like she might be very social and a bit dramatic. This morning, if I wasn’t standing where she could see me, she complained until I came back into sight. High maintenance. At least she’s feeling better!!

I am super thankful today for the company of one of my dearest friends, Ashley. She and I got through our first year of teaching together and have remained friends since then. Tessa adores her and so does the rest of my family! Not only did she come to see me and the girls, but once Ellie went home for a nap and Tessa was calm in her bed, Ashley took me out for a margarita. It was a much needed break!! And while it must have been hard for her to hear what I was saying 96% of the time, she’s a great conversationalist and it’s nice to have someone to vent to.

As far as an update on Tessa, she’s making upward progress! When I went back tonight to kiss her goodnight, she was on the regular flow oxygen! That’s the last level to clear before she won’t need it anymore. They took out her NG tube (feeding tube) this morning. Most importantly, her status was downgraded tonight to a regular pediatrics patient instead of a PICU (intensive care) patient. Yay!! The means she lost a couple more wires and is starting to require less monitoring. Great progress for one day!!

20140503-211150.jpg

20140503-211216.jpg

1 Comment »

PICU Day 2

We came in this morning to an angry baby.

Tessa basically has two cries – a weak, pitiful, won’t-you-please-make-me-happy sob and a full on, all-Hell-has-broken-loose scream. We were greeted with the latter today.

When we saw her, she stopped, smiled, and then started up again. The good news is that because of this (and because our room is directly outside of the nurse’s station and everyone was tired of enjoying her anger) they let us hold her.

20140501-100042.jpg

We also got to feed her a bottle because we thought she was sick of having an empty tummy. Just two ounces (and two great burps!) and she was exhausted, but content.

A little bit of normalcy. 🙂

This morning, they set her oxygen back up to 30%. The goal is to get it down to 21% on the CPAP so that we can start weaning from it and get her onto the high-flow oxygen cannula. There are three levels of oxygen input – four if you include total intubation – and CPAP is the highest that we are dealing with. It forces the lungs open more than the other types. Since she’s working so hard to breathe, the extra force of the CPAP is needed for now, but the oxygen need going up a little is a minor setback. The nurse says it’s pretty insignificant and we’re trying to see it that way as well. As the doctor reminded us today, this is just going to take time. A week? Maybe longer? We don’t know.

Ellie’s pink eye is improving. She hates the drops. Even my assurances that Doc McStuffins herself called me today to recommend them to help her feel better weren’t helpful. My next step is to put on a Doc McStuffins costume and convince her that way. Not really… But sometimes desperate times call for desperate measures. 🙂

9 Comments »

PICU

The smell first hit me as I was riding in the front seat of the ambulance.

Sterile, yet pleasant, like nurses and latex and clean receiving blankets covered with blue and pink feet.

We are back in the hospital.

As I wrote the other day, Tessa has had a cough and a fever for a couple of days.  We decided to take her to the doctor to have her checked out.  She seemed to be breathing a little faster than normal and had not been able to eat as well as she normally can.

In the doctor’s office, the nurse wanted to get an oxygen level reading on Tessa to make sure her levels were good.  This is a reading that we are very familiar with.  It’s the blue number on the monitor.  We know quite well that it needs to be in the upper 90s-100.

It’s never a good thing when the nurse tells you that she doesn’t think her machine is working right and wants to try a different one.

When she left the room, John peered at the number.  77.  We knew that we were hospital-bound.

The nurse practitioner that we were scheduled to see came in quickly, did another reading on the new machine and said that she was sorry to have to tell us this, but she was going to call 911 and have the paramedics take us to the ER because Tessa was in respiratory distress.  Soon her pediatrician was in the room explaining things to us in more detail.  She was working really hard to breathe; at one point they counted 100 respirations a minute.

Meanwhile, Ellie is sitting next to me playing with my iPod and announced that it was time to dance.

The paramedics loaded me up onto the stretcher, Tessa in my arms, and sent us to the hospital.  It’s kind of odd to be wheeled out through the waiting room holding a teeny baby in an oxygen mask.  People stare.  I totally would stare, too.

Once Tessa and I left, Ellie looked up at John with a little quiver of the lip and he told her that everything would be fine.  She responded, “Yeah, but where are those boys??” She was far more concerned about the paramedics being gone!

In any case, we ended up in a Pediatric ER and once we had her stabilized there, they transferred us over to the hospital where Tessa was born.  We wanted to be where her doctors were, where her records and history were already established.  On the way over, they put her into a little isolette (one of those incubator things) and she was MAD.  Literally and figuratively, Tessa does not like to be put into a box.  She likes to be free to be herself.  🙂

Here is what we know:  Tessa has pneumonia in her left lung.  We have her on an antibiotic to fight any bacterial infection that may be present and are testing for viral infections.  She does not have RSV.  They are doing a full panel to try to find the cause of her illness.  When we were leaving the ER and headed to the NICU, she was on 100% oxygen.  She’s now down to 65%.  They have her on a Bubble CPAP (same type of thing used for sleep apnea).  The goal today is to get her off the CPAP and onto the high flow oxygen.  She has been on an IV for nourishment and they will place an NG feeding tube today so that she can get some food in her tummy.  She has felt very, very hungry and, like her momma, when she’s hungry, everyone suffers.  A full tummy should bring back some smiles!

Also, Ellie has pink eye.

When it rains, it pours.

5 Comments »