Monday, April 27, 2015

RSV #2

I can’t believe that I am at home sitting in my bed within 48 hours of our daughter being in critical condition in a Pediatric Intensive Care Unit (PICU).  My mind is tired and a bit numb, so I feel the urgency to share this testimony before I forget all the amazing details.

Let’s start at the beginning.  As many of you remember,  "T" came down with RSV last October and ended up in the PICU.  She was in the hospital for a week, and even that recovery seemed to be a miracle, but nothing like this.

In my mind, I NEVER thought she would get RSV again.  I had heard that it could happen but not to my baby.  So on Monday, when she started "dripping", I thought it was  just the common cold.  Tuesday, we happened to have a well-baby visit but it still wasn’t anything the doctor was worried about.  On Wednesday, I even took her to Bible study.  I just didn’t take her into the nursery.  However, I did notice that toward the end of the night, she seemed to be struggling a little more.  I  gave her a breathing treatment and put her to bed, thinking that she just needed some rest.

At 2am, I heard her crying and went in to feed her.  She wasn’t sitting or standing, just giving a weak cry and tossing and turning.  At that point, I woke up my husband and we counted her breaths.  I  soon realized she was hyperventilating.  Then I called her pediatrician and she told me to go right to the ER.  I had to throw some clothes on, so I turned on the hot shower and had hubby stand in the bathroom with her.

He came out very soon and told me that I needed to call 9-1-1; he didn’t think we were going to make it to the hospital. The poor little miss just needed some oxygen.

Skipping ahead, we got to Nemours Children's Hospital, where she was admitted into a room and put on some oxygen. Then they gave her a test and,  VOILA,  it was a dear “friend”-- RSV.  When we got the diagnosis, my heart sank, but at the same time I THOUGHT I knew what to expect.

Now, there are about 5 different levels of machines that aid breathing, from oxygen connected to the wall to a respirator that breaths for you.  It seemed that they continued to have to raise the air flow and levels of machines.  She kept on pulling in and trying to suck air like a fish out of water.

Then on Friday night she became very critically ill.  I had a friend visiting and we were chatting when the doctor came in.  The doctor took her hand and performed some tests to make her respond, but "T" just laid there, not even fighting at all.  They got very serious and put her on a non-intrusive ventilator.  Then we were told that if she wasn’t better soon, they would have to put her on the breathing tube and respirator where the machine breathes for you.  At that point, the machine she was hooked up to was doing 80% of the breathing.

They also hooked her up to machines to watch her carbon dioxide, another deciding factor for the respirator.  Even though my husband had already put our son to sleep at home, I told him that he needed to come.  He got some babysitters and came right away.  One of my close friends and her husband came as well to be with us.

I started letting people know how serious it was and that she needed prayer.  My sister started getting the news out and soon we had many more people praying, in addition to our family and church.   People started sharing the news and the Lord was hearing a lot of prayers for our sweet "T".

We made it through the night and the next day.  It touched me to see how many people were praying.  I logged into Facebook and just cried over the responses of people praying for our little girl.

At that point, "T" was stable but so weak.  She needed sustenance, so they started talking about a feeding tube.  Our next prayer was that she could be weaned off the ventilator and onto a 3rd level machine. That was about the time when a big change began to occur.

The nurses were able to wean her off the ventilator but, since she had been so bad, they didn’t want to let her eat and risk aspiration, in case she had to go back on the ventilator.  BUT it was like "T" had so much strength from all the prayer that she just started taking things into her own hands.  I joked with some of the nurses that they were going to see this little black-outfitted ninja baby crawling/sneaking out of the hospital.

It started with her IV.  "T' somehow yanked it out of her arm.  So they tried to stick her again.  (Too many times--I had to leave the room).  Finally they decided to put the IV in her head since the veins were so prominent there.  However, she has hair that pulls too.   She was miserable!  The tube kept kinking and when they were fixing it, she reached up and yanked it out.  She was DONE!  They decided at that point that they would let me nurse her; if she didn’t get enough liquids they were going to put her on the feeding tube.

….ummmm "NO!”  Once she started eating, she really started improving. She began sleeping better and her fight REALLY came back.  She played with her daddy and started yanking.  We put her in arm restraints even she got out of those.

Finally this morning, she yanked the breathing canula off, again, tape and all.  Since she yanked it all off, they had to order more tape and stickers to keep it on.  During that ten minutes, she kept fighting me to keep the oxygen away from her face and I just let her.  When they got back and saw how well she was doing without the oxygen, they decided to give her a trial to see how she would do without it.

They had been weaning her slowly but it wasn’t fast enough FOR HER.

The doctor said that if she could do well overnight, we could go home Monday morning.  However,  "T" did so well during the day,  that the doctor let us do an early discharge and go home.  So I am home typing this testimony.

I am so grateful to all the people who went WAY out of their way to provide meals, to come visit, to take care of our needs, to babysit Avery, and especially to pray.

"T" is still not 100%, of course.  She is still healing.  So please keep her in your prayers. Also please pray for wisdom for us.  We are going to need to take some measures to try to build up her immune system and keep her away from germs as best as we can. Ultimately she is in God's hands and,  can I just say, He does an awesome job!!   :-)



  1. What an amazing story, God provides. Not just physical but emotional also. Thanks for the update, I am in Indiana and have been watching for updates. LUV U

  2. Wow! What a story! I pray for the Lord to watch over this child today, and every day of her life May He shower her with blessing to last a lifetime! I am also praying for you, Joy, and the rest of your family.