Another Day Much Like Before

*Written Thursday April 11, 2019:

Each day is beginning to look very much like the day that went before it. Lilyan wakes up feeling pretty okay, drinks well, even eats her breakfast, and then around lunch time or so, her heart rate starts to increase, respiration speeds up, severe chills make her little body tremble, and then the fever starts climbing and she loses her appetite. They give her Tylenol (or Motrin), and the fever continues to climb; an hour later, they give her Motrin (or Tylenol), and over the next couple of hours, things start to calm down again for awhile. A few hours pass, and we repeat this cycle.

Today, this first round, sadly, coincided with a visit from a few of her siblings. She was so excited about them coming, and she tried hard to enjoy her time with them. We even managed to get a couple of smiles, but she just couldn’t do it. She was too sick.

Kids Come for a Visit 4-10-19 #1

Here comes her first fever for today

Kids Come for a Visit 4-10-19 #2

One of a couple of smiles we got while her sibs were here

While all of this was going on, the ortho/spine team dropped by. The plan has changed a number of times today, but they have decided now (for good, we think) to take her into surgery tomorrow instead of Saturday. They seem to be pretty worried about why she isn’t responding better to the antibiotic, even though the culture has confirmed that she is definitely on the right one for this bacteria.

We don’t have any idea what time her surgery will be since she is an add-on. So we will get up and be ready early, but also be prepared to wait until late in the afternoon.

Sadly, when it was time for Lilyan to tell her visiting sibs good-bye, she broke down. She pulled herself back together pretty quickly, but has remained sad since they left. Our hearts are so tired of watching her hurt — physically and emotionally.

Kids Come for a Visit 4-10-19 #3

Stopped the tears, but not the sadness

She has had both her Tylenol and her Motrin over the past two and a half hours, but no change yet. She gathered her animals around her and is watching Zootopia for now while we wait for the fever to give her a break again.

Kids Come for a Visit 4-10-19 #4

Once we get more info after the surgery tomorrow (or if plans change again), we’ll try to post an update.


5 thoughts on “Another Day Much Like Before

  1. Praying that God will heal Liliyan and it will be a successful surgery. I know your hearts must break to see her in pain….praying that God will comfort you and give all of you rest tonight.
    “You are my hiding place and my shield; I hope in your word”. Psalm 119:114


  2. This just breaks my heart for your little one. I am so sorry you all have to suffer through this but how grateful I am that you have such good care both here and from heaven. She is a mighty little one who loves deeply and is deeply loved. My prayers continue.


  3. Pingback: Third Surgery is Behind Us | Where Love Learns Its Lessons

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