Hospital Day 2

BIG NEWS today - Toe has learned how to swallow pills on his own!!  This is huge. We have been giving him capsules of medicine sprinkled in applesauce since he was two weeks old. Today, TODAY he started swallowing pills on his own. No more applesauce in my purse. J and I did a happy dance all around the room.

Another busy day here, but I can now see how a routine might start shaping up. Four breathing treatments a day, three bouts of IV antibiotics, meals, vitals and there's not much down time.

After breakfast, first IV antibiotics, and first breathing treatment, the doctors did their rounds and came in to visit us. They took Toe off the IV drip, so now he is only connected to the IV drip machine when they administer antibiotics (three times a day). After his second breathing treatment, playing XBox, and lunch, Toe met with one of the hospital teachers who spent time helping him do some homework and playing cards with him (J and I were able to take a quick walk together!). They have a classroom for most kids, but because Toe is in isolation here, he gets one on one time with a teacher.

Toe is in isolation with "contact protocols" to help prevent him from getting other infections in his lungs. Patients with CF can transmit various bad lung bacteria through body fluids (including sneezes and coughs). Toe must have his own room. Anyone visiting us who sees other patients (doctors, nurses, people delivering food, etc.) must wear a disposable protective gown and gloves in Toe's room. Everyone must wash hands upon entering and exiting his room. Toe must stay in his room or wear a mask if he leaves his room. He is allowed to go around the hospital with the mask on but is not allowed to linger in the unit where we stay (it is a respiratory wing). He may not spend time in common areas near the unit...

We had our first visitors today. It was great to see friendly faces and exchange hugs. I can see how we will need to keep visits short and only have maybe 1 or 2 at the most during a day - Toe was exhausted this evening and our friends had to leave rapidly as Toe started to melt down when we told him it was time to rest and watch a movie before dinner. We're now having quiet time and watching a movie. We still have dinner and one more breathing treatment before Toe can sleep. You wouldn't think a day staying in bed would be exhausting, but Toe has been up since 6:30 and his body is working so hard.