February was definitely a "down" on our roller coaster ride of a year. In January we tried to get you vaccinated for RSV, but the exact minute insurance called to inform me that we were denied, we were sitting in Dr. Pat's office with a positive RSV test.
We decided to admit you to the hospital overnight to monitor your breathing, and that night you were urgently moved to the PICU and intubated. Again, you just couldn't breathe. For the next 8 days you were breathing with assistance from a ventilator, sedated so you didn't pull the tube out of your mouth, or feel uncomfortable. You didn't hardly move for 8 days. I have never felt more hopeless and horrible. Since you couldn't move your body, your little eyes started to swell along with your arms. We spent a lot of the day talking to you, putting ice on you face, and laying with you in your crib. For a while there was no end in sight, so we got a hotel room at the hospital hotel. Your dad and I traded off sleeping in your room, while the other slept with Ly in the hotel room. After the 8 days being ventilated we stayed 6 more days to help you gain some strength, and to monitor your breathing. Then we went home.... for one day (:
moments after extubation (:
You dealt with some serious drug withdrawal from the heavy sedation and pain meds you were on, so they gave you some Ativan to help you relax. Unfortunately instead of relaxing you decided to stop breathing periodically into a daze. With a little stimulation from us (shouting your name and breathing in your face - sorry!) you would "come to" but we were re-admitted and we discovered that seizures were causing your apnea. You had a CT Scan to check your brain pressure on one of your final days, and when asked by one of my dear hospital friends what the scan was for I replied "to see if she needs brain surgery" and couldn't help but laugh out loud at how ridiculous that sounded after the few weeks we had just gone through. We'll fast forward to that in our next post (:
After a few EEGS and adjusting of you seizure medication we pulled through a final week in the ICU and were home for good. I couldn't be more impressed with the ICU Doctors and nurses that we met, and it is a blessing to know them.
You know I never realised how much you guys went through... I'm over here thinking that everyone else with LP babies is home from the hospital within a week or two and it's relatively smooth after that... and I'm feeling sorry for myself that Maddy's been in there for 6 weeks already. I know that I'm not alone in all this, that others have been through similar (if not the same) kinds of things with their kids... Thanks for sharing your journey - like I said, I never realised just how up and down it was for you guys...
ReplyDeleteA great big wonderful Happy Birthday to you Evie! The Stein's said a Happy Birthday Prayer for you tonight! I hope it was the best. I'll bet your Mom, Dad and Big Sis thought so. :)
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