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

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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.