In other news, I'm about a week overdue for a Charlie update. Long story short, Charlie was admitted to the hospital on Monday. I didn't update at the time because I already had my book release posts scheduled and knew I wouldn't have time to post in the hospital anyways, so I just kept the schedule as it was.
Basically Charlie had been feeling "off" for a few weeks. He had a low grade fever, he was very tired, he wasn't eating, had an ear infection, and in the past 2 weeks developed a nasty cough. We tried Bactrim which didn't help with any of his symptoms. After that we brought out the "big guns" in terms of oral antibiotics and tried Levaquine, which didn't help at all either. After 2 weeks of antibiotics/steroids not helping we were told the best bet was to bring him in for an admission and a course of IV antibiotics.
So on Monday we brought him to CT Children's Medical Center and had him admitted. They couldn't fit him in to do a PICC line (this is a catheter that runs from a vein in your arm or groin into your heart that can deliver medication) so he had a peripheral IV for the first day. He was not happy about this, but he did get lots of toys from the wonderful staff so that helped a bit. All the nurses were shocked there was a 3.5 year old CFer that they hadn't met yet! I guess that's a good thing that he's so healthy, but also pretty sad that so many young kids with CF need such frequent hospitalizations.
(A PICC line on the right and an IV on the left, but he's happy as clam just looking out the window at the buildings with his daddy)
He got his PICC line on Tuesday but couldn't get his peripheral IV out until Wednesday. He was started on 2 antibiotics that are administered every 8 hours by IV. He was released home on Wednesday and we all learned how to do home IVs. This is much easier than I thought it would be- I was very nervous. Luckily it's totally manageable (although our fridge is bursting with IV bottles at the moment!) and Charlie is being an awesome sport about it. He's been awesome about everything really-- such a badass kid.
So since this was our first hospital visit I thought I'd summarize some of the things I learned in list format. He were go, in no particular order!
1. You don't need to bring meds/nebulizer pump/ nebulizer parts/ vest compressor as all of this is supplied by the hospital. The only medical supply we really used was his vest (not the compressor or tubing)
2. The nurses and respiratory therapists bring all his medications pre-measured and do treatments. It is VERY wierd; after 3.5 years of doing it mostly ourselves it seems lazy to sit there while someone else does all the work lol.
3. Charlie had to pee in a cup (he thought this was great fun) and we had to save poops in the potty so the nurses could track input and output.
(Chilling before getting his IV)
4. I was always nervous about Charlie being in a hospital on IVs because he's so energetic and boisterous and grabby. Turns out, he was so tired from being sick, and worn down from being poked and prodded, that he was perfectly content to sit in bed for a few days and watch TV and play with cars.
5. Bring snacks. I was always starving. It's like being at an airport, something about being there just makes you want to eat
(IVs, Nebs, Vest, and iPad all at once-- what a multitasker!)
6. Charlie is the toughest dude I know. I saw him down 6 oral meds like it was nothing and then immediately do a vest physiotherapy treatment, while doing a nebulizer treatment, while getting an IV infusion. Like a bawse.
(They sent us a LOT of stuff, took up a buttload of space in our house! This is our little "clean station", the drawer organizer holds saline syringes on the top, heparin in the middle, and alcohol wipes/sterile caps on the bottom. The bottles on top are the actual medication)
8. Beware of letting your son play with the hospital bed. Charlie pressed the up button and got the bed up so high that it knocked out the cord and within 20 seconds 6 out of breath nurses sprinted to our doorway to see what the emergency was. I felt so bad!
9. All 4 physiotherapy treatments need to be 4 hours apart at the hospital, so it goes from 8am to 9pm (they're never on time). WAY past bedtime, but Charlie did fall asleep really easily both nights. Typically at home we do them closer to 3 hours apart so he's not up too late.
10. Charlie was segregated because he was showing signs of illness. This meant no play-room and all the nurses/doctors had to fully gown up to enter our room. Our garbage was filled to capacity every morning by 10am because of all the gowns/facemasks, it was crazy.
11. They'll let you watch the PICC line insertion if you want. At first I said no thanks because I thought it would be too hard, but once I saw him knocked out I couldn't just leave him alone so I stayed. He woke up towards the end and that was hard to see, but they knocked him back out pretty immediately.
(Charlies favorite toy from this admission was a car transporter and 5 hotwheels-- talk about the toybox jackpot!)
12. The toys you donate at Christmas time that go to sick kids at the hospital? They're a godsend. Charlie got so many great toys and it made our stay SO much more manageable (and made him quite happy!). Please donate toys to hospitals, it makes a really shitty situation a lot better for those kids.
13. The people that donate their time and services to children's hospitals are amazing, too. In the short time we were there we were visited by a movie cart (where we could pick out DVDs), a clown (who brought presents- including a clown nose! She couldn't come in to the room because of the isolation but she had Charlie cracking up from the doorway!), and we were given a homemade Lightning McQueen blanket which Charlie adores. THANK YOU to these wonderful people, who, again, make a shitty situation a lot better for everyone involved!
(Hungry Hungry Hippos + Tobramycin)
14. Charlie can still play and move around while connected to his IVs (which is good as it takes 6 hours per day). He just needs to remember to take his "bubba" with him. We call it a Bubba because the medicine is in a bubble in the bottle, and when the bubble is gone it means he's done. So bubble = Bubba. I need to get him a little fanny pack to carry it in, I looked at Target and couldn't find one.
OK so that's my update! Charlie's been home since Wednesday afternoon and his appetite and stamina are both better. His cough is still there though, and junky as ever! He will be on IVs for at least 2 weeks, possibly 3 if he doesn't get rid of his cough. Luckily it's not pneumonia or anything and his lungs still look OK so that's the silver lining! Thanks to all of our friends and family that have stopped by to visit, called, emailed, and sent us encouraging messages throughout all of this! I means a lot to us :)
I'll leave you with one last Charlie picture that keeps making me smile :)