Training Day 2 on Ventilator Training

We had a pretty good day today on the ventilator training. We went over the settings again and were quizzed individually. We made a huge dent in our checklist in order to go home.

We also demonstrated changing of Leah's trach. That went really well!

Leah, however is acting up a bit - the hospital tried to wean her albuterol treatments and slowly take it away eventually as well as made a few minor adjustments on the ventilator. Leah is telling the hospital that she didn't appreciate these changes... she has been wheezing more and is having a hard time keeping her sats up. We are on 10 Liters of oxygen at the moment and satting 93 - Got to try and wean that back to her base line of 3 or 4 liters.

This reaction she is doing is her pulmonary hypertension playing again. When she doesn't feel good and they try new things, she tends to desat - you have to leave her alone and let her recover before you can mess with her again. if you would like to read up on pulmonary hypertension, feel free to take a look at this resource...

Pulmonary Hypertension: A Patient's Survival Guide

All, in all, it was a productive day - a little concerning and stressful though! Praying she recovers in a timely manner so this doesn't prohibit us from going home soon!

Training to Take Leah Home

Here we are - we finally left Children's Hospital 5 months later and now at a rehab center just for us as parents to train on a home ventilator and a few weeks later actually get to take her home!

Earlier, I forgot to mention, she has a g-tube for feeding that she got while in the NICU and now she has a Trach for the ventilator.

First Day of training -

An overview of the LTV950 Home ventilator.
What to expect in the days to come and what we will be training for and doing. Preparing ourselves for the checklist of multiple things we have to know before we can take her home!

Just a few things we have to prove -

We have to demonstrate we that are capable of her trach care, as well as troubleshooting the ventilator.

Changing out the Trach
Suctioning sterile and inline
Keeping her stoma clean
Changing her Trach Ties

Prove we can do CPR along with all the medicine she receives throughout the day which it seems like she gets something every hour.

Once we complete their checklist - We can finally take our little girl home and start the healing process away from all the infected hospitals!

Introducing Leah ...

Leah is our precious little girl born 8 weeks early. When she was born by emergency C-Section, the doctors said she had the characteristics of having Down Syndrome. We were totally unaware! She was in the NICU for 7 weeks and we were release to go home.

Long story short, here is where our journey begins -

She was diagnosed with Pulmonary Hypertension just 2 weeks later and we were back in the hospital. She has since then been diagnosed with Chronic Kidney Disease where she has 30% use of her kidneys. Over her 15 months, she has had her bowels reconstructed due to perforation of the bowels and is now borderline "Short Gut Syndrome". We were able to do a heart cath a short time after that and found she has Pulmonary Vein Stenosis as well, which just means the 2 of the veins from her lungs to her heart are narrowing preventing the oxygen to flow correctly.

In the midst of all this she has been on the ventilator so many times and so often, this has damaged her lungs so now she has Chronic Lung Disease.

Here is where we are today! Follow us as our story continues!

It's Been A While ...

It has been awhile since I have posted anything! While at the hospital with my little girl, I have been hard at work revamping my website, http://www.leahsboutique.com/! Hope you enjoy taking a peek at all the different items I have added to my site, I think you're gonna like it.

Please excuse the mess though - I am still tweaking everything!

Have a great day!