Saturday morning I was heading out to drop stuff off at the post office. I got Misty ready, and Andrew got ready, and Ricky told me that he was dizzy and tired and wanted to lie down. This is unusual for him, though it has happened a couple of times recently. I did check his blood sugar and it was fine. (If you did not already know, we have been checking it routinely because he shows some signs of being pre-CF-related-diabetic.)
So the other two and I headed out and dropped the stuff off at the post office. We came back home to get a few things and then were going to go for a walk at the community center track. At first I planned on coming back for Ricky before we went to our lunch date with my friend Leann, but I realized he needed his rest and so we planned to head straight to lunch after our walk. Misty, Andrew and I went to the track and walked. After that, we went to lunch at Fresh Choice with my friend.
When we got home, Ricky was still sleeping, and ended up sleeping from I think 10:30 til 3 or 3:30. Dave went to Ikea to get furniture for Andrew’s soon-to-be-organized room. I made tuna casserole for dinner, and while it baked I bathed Misty and called the pediatric pulmonologist on call. She decided to call in a prescription for Bactrim but said that I should take Ricky in if I was concerned. He was doing his treatment at that time, clearly retracting and otherwise working hard to breathe. I decided that as soon as we’d all eaten dinner, I’d take him up to the ER. So I packed a bunch of stuff up and after dinner we headed out — just Ricky and me.
When we got to the ER, he immediately grabbed a mask to put on, without me even reminding him! This is so important with all of the sick people coughing and carrying on. I realized that I had forgotten to bring the med lists I’d printed out, and asked Dave to email the list to me — then I was able to read them off to the triage nurse (there are a lot of meds). They have a children’s ER waiting room there but we didn’t even make it there… Straight into an exam room. The doctor got a history and ordered a chest x-ray, keeping in communication with the pediatric pulmonology resident and attending.
For the first time, I heard Ricky say that his chest and sides hurt. :( I wish he had told me these things, but at least he told the doctor. The kid seems to have such a high pain tolerance! He had a breathing treatment (I LOL’d at the RT who said “Have you had one of these before?”). We got moved into a different room, he got an IV started, got labs drawn, and we got word that he was being admitted because the x-rays were lousy on top of his lungs being crackly. We waited and waited and waited. Ricky almost fell asleep a couple of times, but we kept getting interrupted. The nurse started an IV, at first putting on a Tegaderm dressing, which Ricky is allergic to, but then switching it to a tape dressing. Ricky had a full dose of IV antibiotics while we waited. And finally he got transported up to a room at LPCH, by wheelchair.
Once in the room, the resident came and talked to me. She had been all through Ricky’s recent history and some of the older stuff, thankfully, so I didn’t have to tell her much, which was nice since it was around midnight. I emphasized how important it is for him to have his psych meds at exactly the right times and not stay up too late. I really liked her, and she used to work at the children’s hospital up in Portland and thinks she remembers Dave from there. I emailed her the med list from my phone. She mentioned that the lab had forgotten to do a gram stain on the sputum culture that had been done from the ER, so they’d need to get another one. Ricky has no trouble producing sputum, let me tell you. They also needed to take more blood from him.
After the doc, the nurse came and checked Ricky in. I got him settled and he went to sleep around 1:30am when I was leaving. I stopped by admitting to sign a few papers and get my parking pass and parent badge. Then I had to walk all the way through both hospitals to get to my car and then beyond, to the lower parking lot. (Just realized I hadn’t yet mentioned the $8 valet parking in front of the emergency room. BS in my opinion!)
Got to sleep around 2:30. Misty had been up and down all evening and Dave was glad to see me. Got up about 7 on Sunday morning and took Misty out to Dave in the living room. I got to sleep a couple more hours, whew. The two kids and I headed up to see Ricky at about 11 on Sunday morning. I had visions of Ricky being on oxygen, and sure enough, when we got there, he had a mask on. I asked the nurse what had happened. She said that early this morning, on the previous shift, while sleeping, he had been dropping his oxygen saturation to 80% after a coughing fit, very very not good. So he was currently on 6 liters of oxygen. Whenever they took it off, he dropped to 89-90%, still not good. Ricky was kinda shifty yet lethargic, anxious and irritable on Sunday. He was very very paranoid about his IV tubing. Usually he lets Andrew sit in bed with him while they watch TV, but on Sunday he wouldn’t. He was scared about his oxygen tubing and IV tubing getting squashed or disconnected. He was all sweaty under his mask, but when he took it off to eat or do his breathing treatment, his sats dropped again and he had to put it back on. He was being very good about it.
The boys watched “Harry Potter and the Chamber of Secrets”, which we’d brought from home. Roo, Misty and I did go and have lunch in the big hospital cafeteria. Mine was pretty bad, but Andrew had some yummy looking broccoli. After lunch, the RT came to do Ricky’s treatment and he got really upset when she wanted to percuss him. He said his skin was sore, but we suspected it was actually his bones and muscles from all of the
coughing. Eventually she got a vibrating percussor and used that instead, and he seemed to like it better. I finally got Misty down for a nap around 2, and she and I both napped (with one break after an hour) for two hours. Ricky’s IV beeped off and on, he got up to pee a couple of times (with help, him being hooked up to the heart and O2 monitors and oxygen and all). Misty and I got up around 4. At 4:30 I helped the nurse test his blood sugar, and eventually the rest of us headed out and left Ricky there, which is always hard for me. I got out some of the clothes I had brought for him and told him to change.
Monday, my mom met us at our house at 8:15 and she and Andrew in her car followed Misty and me in the van up to the hospital. Dave’s meeting was canceled so he went over to see Ricky. He texted me that the doctor was already there and I texted him questions to ask. Answers: No, sputum culture results had not come back yet. X-ray had shown major consolidation on the right side. Dave informed me that Ricky was still on oxygen, 6L by mask. We got there and Ricky was having his breathing treatment and chest percussion. He was still complaining about being sore. The RT and Dave informed me that the doctor wants him to have CPT every time, or maybe CPT AND the vest, because it might help him clear the secretions better.
Dave headed out, and a little while later Ricky and I went down for his spirometry while my mom stayed with Roo and Misty. The idea was that he’d be switched to a nasal canula when we got back. Well, it turns out that we should have switched him first, because he had to take his mask (hooked up to a portable oxygen tank) off. Then he was too lightheaded to stand up to do his spirometry, and couldn’t breathe hard enough out to do well. He tried to do it standing up, and had a huge coughing fit. His FEV1 was then only in the 50%s, but the RT said it probably could have been 10-15% higher if he’d been on a nasal canula and thus able to breathe harder through his mouth. Argh. We got a canula onto Ricky, and he complained about it hurting his nose and sinuses. I guess I don’t blame him — it is a pretty uncomfortable feeling until you get used to it! When he first got it on, his oxygen was turned down to 4L, but his oxygen saturation went down to 80 and wouldn’t come up and I called the nurse. She was about to call respiratory when he coughed a bit and apparently cleared a mucus plug or something, and his numbers came back up. Whew — scary!
At some point, my mom and Andrew left. We hung out in the room, with Misty trying to destroy things. Eventually, an OT and PT came and asked some questions about what kind of therapy Ricky has at school (none, but has had it in the past and has recently been reassessed). They made him get up and walk with portable oxygen. We couldn’t get up to the roof because the elevator wouldn’t come. :( But we did go out to the patio and Misty played while we watched. On the walk there and back, Ricky was very wobbly and needed the PT to support him while the OT pushed the oxygen. It was so weird to see him this way. When we got back to the room, they showed me how to use the tank and encouraged me to take him out to walk each day and to get him to sit up in his bed.
Lunch came and he did pretty well at eating it (better menu options than last time… for lunch he had taquitos). He was pretty out of it, but the nurse and I got him to sit up on the side of his bed to eat. The afternoon wore on. Misty took a brief nap from 1 to 2. A lot of beeping from Ricky’s monitors and IVs woke her up eventually. :( The nurse tried to wean his oxygen down from 4L to 3L but it wasn’t good enough and they had to bump him back up (his oxygen kept getting down to 90ish%).
At about 4, Misty and I left. Ricky was a little sad to see us go. :( I feel bad that I have to leave him there. I did plant the idea of a PICC line into the day nurse’s head… Maybe she remembered to ask the residents? I also asked her to see if Ricky could be encouraged to shower. She said either that or they’d get the fire hose. :) I am worried about him this hospitalization. This is the sickest he’s been in about 5 years I think. That time, he had to have continuous albuterol for a couple of days, Solumedrol that messed up his bowels for good (always constipated), and oxygen. Hopefully this time turns out to be better. It’s worrying me.
Aside from the obvious niceness of not having to do treatments and meds, I really miss having Ricky around. It is quieter around here, sometimes in a good way but most of the time not. I need my ducks in a row. Plus, I worry about him because he has not been this sick in a long time.
And there it is, probably more than you ever wanted to know!
