The past few days have truly been amazing.  I can say that I am truly surprised, as are most of those that have cared for Jemma, how well she has done since being moved to the conventional ventilator.  I mentioned in my last update that on Monday, the 21st of January, she was moved to the conventional ventilator.  She continued to do well and was weaned each day.  On Thursday, the 24th of January, I was given the best blessing.  My baby girl was extubated!!!  She passed all her tests and they came in about 2pm on Thursday and pulled the ET tube out.  It was amazing to see her without it.

Jemma extubated

The first time I have seen her without a tube in her mouth for 13 days.

Jemma continued to improve and her oxygen was weaned during the day and overnight.  She was on room air just over 24 hours after being extubated.  It was amazing.  Jemma had her last chest tube removed Friday morning and xrays showed some change (for the worse) but it isn’t anything at this time that can’t be handled with what they are currently doing.

The biggest problem Jemma is having is with the withdrawals from the pain medications.  They started weaning her on Thursday but we hit a road block yesterday afternoon when she started shaking, gagging, flushing and sweating.  She just wasn’t feeling well.  They bumped her dose back to the previous one and gave her a bolus of Morphine.  Since then, she has had several instances of the same.  She looks horrible and it breaks my heart when it happens but the extra dose always helps.  They brought in pain management docs (anesthesiologists) today to take care of the weaning process for her.  A plan is in place and they will get her off the IV meds and on oral as soon as they can so we can go home.  When she is not having withdrawal symptoms, she is in good spirits and plays.  One of the first things she did was play with my Kindle.  We have seen her beautiful smile and even heard some giggles and it is like music to my ears.

Mommy snuggles

I finally was able to HOLD my baby girl!  We both really enjoyed the snuggles.

We were moved out of the ICU about 2am this morning.  Jemma was originally going to stay another day there to try to get a handle on that withdrawal issue but they needed the bed for a child who was vented so we were going.  I was okay with it as long as her withdrawals were managed well on the floor and it was a bumpy morning with it but it all worked out and Jemma is okay.  That is all that matters.  We have a private room due to her isolation requirements and are told we will likely being going home next week (barring any other problems).  She will go home with her PICC line and medication for her Staph pneumonia.  She also will have several doctor visits over the next few months (and longer) to follow up and make sure her lungs are functioning properly and there is no long-term issues due to the extreme lung disease, if the staph has cleared up, how her blood looks, if she has any other complications and more.  We have a long road still ahead of us but the worst is behind us and I am so happy.

Again, thank you everyone for all that you have done for our family but especially for the prayers for Jemma.  It is so nice to see a light at the end of the tunnel with this.  We are on day 26 of her hospitalization and when it is all said and done, we will be here for a month or longer.  I can’t wait to get out of the hospital and just be able to take care of my baby at home.  But, until then we will sit and be thankful for all that we have.

I will leave you with one more picture from today.  Jemma was playing peek-a-boo.  She is just so beautiful and I will thank God every day the rest of my life that I am so blessed to be her mommy.

Jemma 1/26

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My little fighter keeps on fighting #PrayersforJemma

January 23, 2013

Hanging out with my big kids.  It is so hard being away from them but they are doing great with my mom and dad.  I am so blessed to have them in my life to take care of my babies for us. Wow, it has been a whirlwind of activity and change the past few days.  I left off with weaning Jemma off the oscillator vent.  Well they decided to make the jump early (were planning by Wednesday) Monday morning because she had so much stuff in her chest that they could not get to with the oscillator vent.  They needed airway clearance and the only way to get that was to switch her over to a conventional vent.  With that they could suction more […]

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Touch and go… and then go some more!

January 19, 2013
Jemma Hair fixed

Jemma with her hair fixed like her momma got done I left the hospital yesterday for a few hours.  A friend of mine from high school set it up for me to get a complimentary hair cut at a local beauty school.  I hesitated but asked the nurse straight out if Jemma was good for me to leave and she said she was and to go.  So, I did.  When I got back, Jemma had the pink barrette in her hair and her nurse said she got her hair fixed since her mommy did.  So sweet. Last night, Jemma’s chest tube stopped draining and bubbling again.  I was worried because they couldn’t do anymore of the TPA to break up the clots.  If her chest […]

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A small hope from Jemma #PrayersForJemma

January 18, 2013
Jemma ToBeThode

This is what I have seen every day for the past week.  One week ago today my baby went for a procedure and came back to me like this… my heart hurts. It has been a week since I have seen the beautiful smile of my precious baby girl.  A week since I heard her cry.  A week since she said “mama” or “baba”.  Her limited vocabulary grew as we have been here in the hospital.  Prior to her PICU stay, Jemma had learned to say “no”, “go”, and my personal favorite “all done”.  She would tell the nurses or doctors to “go” when they came in.  She would have enough with whatever they were doing and say “all done” or hear the sound of the isolation […]

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The continued nightmare

January 17, 2013
Jemma Thode

One thing I forgot to mention in my last post was one thing that set me off when we were in APC getting ready for the procedure.  They wanted to put dilating drops in her eyes and check her eyes.  I was adamant that I did not want her to feel those drops.  I have had my eyes dilated and it doesn’t feel good.  I did not want her to have to deal with that because I could not explain it to her.  I was lied to though and this was part of my very large rant that day.  The eye doc came in and just put the drops in her eyes.  He just did it after I was told he would wait until she […]

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