Thank you for all of your cards and good wishes. I really appreciate it. Ricky is doing great. His mood has been way better this week. And the great news is that he’s coming home on Sunday! He had spirometry (breathing function test) this morning and everything was way better — 30% better! The port didn’t happen on this stay because the surgery schedule was packed with more urgent procedures. Looks like we will be back next week or sometime shortly thereafter for the surgery. It’s generally a fairly quick procedure and he’d go home the same day. Ricky’s been having some dizziness still, and they’ve been unable to figure out why, so we’ll follow up on that with his doctors on an outpatient basis.

Guess that’s it for now. Thanks again for the cards and all!

Hi everyone! Sorry I have not sent an update sooner. In my heart I was waiting for Ricky to turn the corner and start doing better, and he finally did. Thursday, I think it was, Ricky finally got off of oxygen. Rather than weaning him off of it, which they couldn’t do because he refused to the nasal canula and was instead on a mask, he went cold turkey at bedtime and never looked back. At first he was still a little dizzy when he stood up and/or tried to walk around, so I was pushing him around in a wheelchair, but gradually he started moving more and now we have taken walks around the floor, gone to the playroom, and also gone downstairs to the cafeteria to get snacks with his cafeteria pass. I am so proud of him! He does complain about his legs aching when he walks, but that will get better. A physical therapist and an occupational therapist have been helping him exercise too, so he won’t be so sore.



He was also on isolation pending his sputum culture results, but luckily they turned out just fine. He’s culturing normal staph aureus (non-resistant) so he is free to go outside of his room and people don’t have to wear masks/gloves/gowns when they are in the room. After he blew two peripheral IVs (through no fault of his own… One of them a nurse accidentally pulled out when she was changing the tape, and anther one infiltrated on its own), on Tuesday it was decided that he’d get a PICC line, which is a vein catheter that is more invasive and goes almost to the heart. The nurse got it to midline (somewhere between peripheral and PICC area) and then it was stopped because of scar tissue from past placements (this happened the last two hospitalizations as well). So he was taken to fluoroscopy where they managed to sneak it up to PICC area. Yay! Meanwhile, though, the resident and attending doctors decided with the medical team that it would be best for Ricky to get a port-a-cath put in. Basically it’s a more permanent line that goes directly into the major vein near the heart, by way of the upper chest. It rests under the skin and is accessed through a silicone skin after piercing the person’s skin. A person can continue to swim and bathe as usual when they have a port, and it lasts for years. It’s a sort of a surgical procedure to put it in, sometimes done under conscious sedation and local anesthesia, but with kids they like to put them to sleep for it.

After the child life person came to explain the procedure to him, Ricky was okay with it and not as anxious as he first was. Whew! Right now he is just anxious about the general anesthesia. I will admit that Dave and I are too, since he has a history of being combative after waking up from anesthesia. The port surgery will most likely occur Wednesday or Thursday. I hope they tell us soon, because I’ll need to make arrangements to change my work schedule if it’s on Thursday.

Okay… That is it for now… I’m going to take Ricky and Misty to the hospital playroom for a while! :) Looks like around another week for Ricky in the hospital. I’ll send another update as soon as there is more news! :)

Take a deep breath and read my novel of an update!

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!

Ricky’s doing pretty well. He has off-and-on had coughs and a sore throat, but his lung function has continued to be impressive. He also battled some wicked thrush that took two medications to knock out! Ricky’s mental health issues have been much trickier, but at the moment, things are under control.

Another issue we’ve been dealing with is the fact that Ricky has not grown substantially taller (or put much weight on, for that matter) in two years. He was first evaluated by the diabetes clinic, and after some random blood sugar testing over several months it was determined that he was not diabetic. However, subsequent blood tests ordered by the endocrinologist have shown that he might have a pituitary disorder, and we’re having the blood tests repeated this week to see if the results hold true. He’ll have an MRI if the blood tests are still wonky.

Ricky has been homeschooled (with curriculum from the school district) since school started in September, while we wait for a school placement for him (in a special education class at a middle school). It is taking FOREVER but hopefully we’ll have news soon.

Misty (now 18 months old) and Andrew (almost 10!) are also doing great. Dave is working as a nurse manager still, and I’ve been working scattered hours here or there as a temp library clerk. I will post some pictures to Ricky’s picture album soon.

We want to thank Ricky’s regular correspondents, including Shayne and Julianna, as well as the other kind people who have written to him and sent him things. The past year has been very difficult for our family in many ways, and we really love that people are still thinking of Ricky and wishing him well.