Happy Halloween

So far so good

Everything went well according to the surgeon and we are safely home.  Alex had an eye muscle surgery to help straighten her eyes out and tubes put in her lower tear ducts to help them drain properly.  It's been a long day, with pain control a top priority.  Alex's eyes will be red for several weeks, however after this weekend she should be ready to return to school and work (as in therapies, appointments and her busy little life).

Surgery #7

Checking in for eye surgery

It's so hot out...

Appointments

appointments and more appointments

 enjoying the weather outside at Children's

sisterly tug of war

Of course Ryan is very involved in Alex's care, therapies and daily life.  She's a free spirit and always testing boundaries so we have to rein her in when we are out and about  

Time for an update

Alex had a four month hiatus from going to school during respiratory season and had a home bound teacher work with her for a couple hours each week to keep her up to speed until we decided it was time to send her back. She finished out the last month of school in her classroom.  She continues to work with a teacher as well as OT and PT each week in-home.  She's probably the busiest three year old I know.  

Alex's g-tube has been problem free and we are happy to see a positive change in her respiratory condition.  Initially we took Alex off her oxygen for a couple hours each day and then for longer periods and now she is completely off while awake.  The g-tube has also made it so much easier to keep her hydrated, especially with her no longer having to gulp down pudding thick milk and juice everyday.  All of her liquids and medications go through her tube and she is still eating solids by mouth. The bipap however has been a different story and it's been a long few months with little sleep.  She wakes up several times a night, sometimes four or five times.  It's most likely just going to take time for Alex to adjust to sleeping with something that is so uncomfortable.  She has another sleep study coming up this summer and best case scenario is they tell us she no longer needs the bipap at night.  We'll see. 

Ryan is still our feisty one and growing up so fast.  She climbs on everything and keeps us on our toes.  She plays well with Alex and they really do enjoy each others company.

I'm still working at Children's and making my way through nursing school.  I'm currently in my pediatric rotation and doing my clinical hours at the University of Colorado hospital in the neonatal intensive care unit (NICU), which I love.  I'll have a little break in August before I start my last and final semester this fall.  I look forward to graduating in December and finally becoming an RN.  I know Jimmy is excited too as it's been a long few years for him as well.  He's been amazing about taking on additional responsibilities at home and with the girls whether I'm doing long clinical hours, working weekends or studying. Life is busy but good for the Diffee's.             

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. 

Get back to work

Alex is back to her old self telling the nurses to get back to work.  She's been on bipap since her surgery yesterday and it just came off this morning so it's good to see her cute little face again.   She did have some pain last night, mostly associated with us moving her around to adjust her mask or change her diaper but we had an awesome nurse who was on top of her pain management. We are waiting on rounds to see what the plan is.  Most kids who get a g-tube are admitted to the floor after surgery, start getting nutrition through their tube and go home the next day.  Because Alex was started on bipap (another story for another post) the same time as her g-tube placement she does not fall into the typical category.  She is still NPO (no food by mouth) and we've yet to start liquids in her g-tube.  Hoping to get this ball rolling very soon. 

Surgery went well

In recovery now, she's awake but groggy - as to be expected.
Everything went without a hitch.

-Jimmy

----
Sent via iPhone

Surgery day

Alex had a swallow study recently and unfortunately the results were not what we were hoping for.  Her problems with aspirating have gotten worse and she is not safe to have any liquids by mouth even thickened like she's been doing.  She will be getting a gastrostomy tube (g-tube) placed this afternoon for hydration.  It's basically a tube inserted through the abdomen that delivers nutrition directly to the stomach.  Good news is that she will still be able to eat solid foods by mouth. We'll keep you posted on the surgery.

Happy Valentine's Day

Alex's bus driver Wendy and her bus monitor Stacey stopped by recently and brought Alex and Ryan Valentine's day gifts.  Ryan was so excited to see the bus stop at our house again and Alex as so happy to see her old buddies.  Thanks ladies for thinking of our girls and making a special stop.

Waiting for an appointment

Waiting for an appointment

Alex is doing much better and she's almost over her latest cold.  She tested positive for rhinovirus again (common cold) but luckily was able to fight it off at home.  She says "hi" to everybody.

Lock Down

We've been home for over a week now and have been busier than ever.  Alex hasn't come back down to her oxygen baseline requirements so we've had several outpatient visits to get things checked out.  Then on Saturday night she became congested once again and we are suspecting a new cold.  Poor thing just can't catch a break. We are waiting to see if a nasal swab she had done shows a new viral infection.  She's managing ok at home but we've had a couple of close calls and have our hospital bags packed just in case.  Needless to say, Alex will continue her hiatus from school and we are going on lock down for awhile.

Nana Carol is here and the girls couldn't be happier.  We've been playing "catch up" every since Alex came home. We've been busy scheduling scopes, clinics, studies and follow-up appointments with several different specialties.  Because Alex was inpatient status, she was discharged from her home physical and occupational therapies and we are in the process of getting those set back up again.  Always a lot to do after a hospital stay.  We had our Christmas celebration at home this past Sunday and it's been back to the grind ever since.            

Home at last

Havin a great day

Alex has been doing great, and she's able to get up and around in her
wheelchair. They're saying if she keeps doing this well, she could get
out as early as tomorrow.