Walk 'n' Roll

2012 Team Diffee

Alex loves Cat

Alex & Zach

Alex and daddy

The Diffees

It was our third year attending the Spina Bifida association of Colorado's Walk 'n' Roll event and we had our biggest team yet.  Thanks to everyone who came out and supported Alex and for all those who donated.  We truly appreciate the love.  The SB association helped fund Alex's zipzac chair last year and they continue to be an amazing resource for our family.   

Happy (late) Easter

 We took the girls to their first Easter egg hunt.  Can you tell they had fun?

Surgery follow up went well

So far so good. The g-tube is working well...no infection. And we're
already g results. Alex is doing great off of her Oxygen.

Home sweet home

Alex is rockin it at home

 

 This is how we divide and conquer  

G-tube teaching

Lots of g-tube and bi-pap teaching before we go home.  Equipment for home had to be lined up before a discharge plan could be made and we were told it could take as long as Friday or Monday to get everything lined up.  Ugh.  Luckily the medical team worked diligently and reps from two different home healthcare companies came to the hospital yesterday to drop off equipment and supplies we'll take with us. This moves our discharge date up to this afternoon.  The nurses are having me doing all of Alex's g-tube care and the respiratory therapists did cut me loose with bipap. Setting it up is easy but getting a good seal on the mask is next to impossible.  Alex tolerates it really well which is half the battle so we are thankful for that.

Alex is in spirits and seems to only be in mild discomfort from the surgery.  She has a million follow up appointments the medical team is setting up for us including bipap clinic, g-tube clinic and another visit to the sleep lab for an overnight sleep study to titrate her bipap settings.  It's going to be a busy spring for the Diffees. We love to hear from all of our friends and family and appreciate the love and encouragement we read from your comments.  Until the next post....

Still my kangaroo

Bipap is back

I'm so over this 

Alex had a sleep study Sunday night and half way through the study she was taken off her oxygen and put on bipap.  An arterial blood gas was drawn early the next morning with not much of an explanation except we should be hearing from the sleep lab soon.

Shortly after we got home we got a phone call explaining significant findings. The most concerning being Alex hypo-ventilating throughout the night which often leads to increased levels of carbon dioxide in the blood. This is especially dangerous when present in those with sleep apnea. A person will naturally adjust to the hypoventilation while awake, taking deeper and/or longer breaths as needed. During episodes of apnea though, where the body forcibly slows or shuts down breathing entirely in spurts, this can lead to dangerously high levels of carbon dioxide in the blood, and can be life threatening in the most serious cases.  Her carbon dioxide levels came down significantly after being on Bipap which works by providing air pressure to keep the airway open, and also assists inspiration (breathing in).  The machine contains an airflow sensor that determines when she is inhaling and exhaling. When she is inhaling, the machine increases the flow of air through the mask to make it easier for her to inhale.

These findings were shared on Monday and because Alex was scheduled to have surgery the following day,  the sleep team wanted to start her on the Bipap right after surgery. This kind of put a wrinkle in our plan of being in and out of the hospital by Wednesday.  It's also a little nerve racking starting both at the same time.  The bipap can potentially fill the stomach with air and cause the abdomen to be distended which can cause her stomach to be upset if we are also putting fluids through the g-tube. The plan for Alex is to start slowly on her fluids and be monitored closely for tolerance before we can go home.  So far she is recovering beautifully so we pray she continues to do well.