status quo for now

Wow! It has been a long time since I posted... Over two months!

Just wanted you all to know that Ricky is doing very well. We have had a couple of emergency room visits for CF issues that turned out to be not as serious as we feared, thank goodness.

He still hasn't entered puberty, so we're going to the endocrinologist soon, and we will also be visiting the geneticist again, in March. We are supposed to go there periodically for a chat and further blood tests, since it's suspected he's got something else going on (yeah, like we need something else!) and there are new genetic tests available all the time. Also have a pulmonology appointment coming up, the same day as the endo visit, and he'll also have full PFTs that day. Going to be a very exhausting day.

Unfortunately, Ricky's dizzy spells are back in nearly full force. The neurology nurse gave me the go-ahead to up his dose of Topamax to see if that helps, so I've started the titration process. I hate that these spells are back because they totally incapacitate him and make him miserable.

Things are going well in school. He continues to be a teacher's aide in the office and they all love him there. We are gearing up for the transition to high school (!!!) this fall. I'm not sure yet where he's going to be going, but one of the options is my alma mater! Now that would be weird! Anyhow, we're having the transition IEP meeting in March and I should get more details then.

Keep your fingers crossed that Ricky stays healthy through the winter!

new post on Hopeful Parents

I have a new post over at Hopeful Parents and it's right here. We had a great weekend at mother-son camp and I hope to get some pictures up soon!

Home!

Ricky got home on Monday! Everything was looking good over the weekend. Monday morning, he had a fasting glucose test and lipid panel (both turned out fine) and spirometry that looked around 10% better than at admission.

So we left the hospital at around 2:30 on Monday and Ricky was even back at school the next day. This kid is so resilient. He came home on oral antibiotics and is back on inhaled.

Go Ricky, go Ricky! :)

Update

Hi everyone! I'm happy to say that the past few days have been uneventful. On Tuesday, people at the hospital became concerned that Ricky was getting backed up, like during the last two hospitalizations. They upped his Miralax to 4x a day (!) and started him on mag citrate. On Thursday, the doctor said he had one more day to unplug or he would have to get an NG tube. I spoke with her at length about my concern that being restricted to his room, as all CF patients are now, has caused him to get backed up every time he's been in this year. She really listened to me and she wrote orders for a physical therapist to come work with him.

FINALLY, on Friday things, well, improved. He was officially out of danger. It was also clear that he had started to feel better. Yay!!! The plan for discharge became official: He will have spirometry done on Monday and come home if he has improved. That will have given him a full week of antibiotics and he might come home on oral antibiotics.

Friday night, Ricky got angry when he was woke up to take his meds. In the end, he had TV, his DSi, the phone, and his Halloween candy taken away from him. Today he started cooperating again and he got everything back. Whew!

Friday and today Ricky and I went for a walk around the roof (the only place he's allowed to go outside of his room). Sunday I'll see him for a couple of hours and Monday I'll go hang out with him til he gets to come home. Yay! I need to remember to remind him that he kept himself out of danger by following directions, taking his Miralax, etc. He did well!!

Ricky update, again!

Today I couldn't get to the hospital til after I worked. By the time I got there, Ricky had already called me twice wondering if I was coming yet. :)

He had had spirometry at 11:30. After I got there, the resident came to talk to me. Ricky had scored only 70ish percent on his FEV1, which is way lower than his usual (in the 80s or 90s). We both agreed that if he would just do his vest, his lung function would improve and he could get home soon. I convinced Ricky to do the vest for at least 10 minutes during his next treatment. He'd been without a fever all day (yay). He was still a bit subdued and not himself, and said he was coughing more, but he's definitely had a huge improvement.

The resident also said that the more sensitive and accurate H1N1 test had come back negative. That means he doesn't have *any* type of flu A. Just some mystery flu! She wanted him to get the H1N1 vax as soon as possible, but wanted to check first to make sure whether it needed to wait til his Tamiflu was finished.

Later on, the nurse came in with the H1N1 vax syringe in hand. I asked her if he was supposed to get it before finishing the Tamiflu. She paged the doc and hadn't heard back when I left at 4:15... He'll probably have the shot tomorrow.

The respiratory therapist was just getting started with the treatment when I left. Ricky called me a little later and announced proudly that he'd done it for the whole 30 minutes. Yay!! I praised him a bunch. Hopefully he was also able to cough up some sputum for testing. They want to make sure he's on the right antibiotics. Chances are he is (IV Septra, Tobramycin, and Ceftazidime), but this will give us a better idea of what he's growing out right now. (Isn't it cool how they tailor the antibiotics to which bacteria the patient is growing? CF care has come a long way from the guesswork of yesteryear!)

A cool thing that happened while I was there... Ricky has been wanting rice to eat ever since he was admitted. (He has been drinking his orange juice + Miralax and sometimes his nutrition shakes, but other than that just eating rice with soy sauce.) Today around 3:15 I went down to the cafeteria to see if they had any. They did not, but when he heard how much Ricky wanted to have rice (with soy sauce) the worker offered to put some in the steamer. He said to come back in 20 minutes. I came back and his coworker gave me the rice, two generous containers full. He said it was FREE because of it being for a patient!! Isn't that awesome? I'm going to be sure to write a letter to the cafeteria manager. These guys went above and beyond!

Guess that's it for now. Oh, it's possible that he could have only a week's stay, if he can bring his spirometry numbers up by the end of the week-ish. That would be nice. I even offered to do IVs at home. :)

Some news

So, today I spoke with one of the residents who's taking care of Ricky. The first, less-reliable H1N1 test came back negative. The second one, the more accurate PCR, should have results tomorrow. The resident feels that the first one being negative *is* a good sign. If it turns out that he doesn't have H1N1, he can finally get the shot for it, because they just got them today.

Ricky's okay, a bit listless, tired, achy, and when I left him he'd begun to run a fever again. He has very little appetite (I was like that a week ago -- but he needs the calories!) except for rice. He napped for close to 4 hours and I had to tell several different people *not* to wake him. (If they'd needed to wake him for important stuff, I would have let them!)

He's been refusing to do his vest therapy because he's achy and sweaty. This presents a problem because the only way that junk is coming out of his chest is by using the vest! IMHO, within the next day or two he'll stop being so achy and he'll do the vest. Guess we'll see.

His O2 sats are, not surprisingly, a little low, but he's not in danger of needing oxygen, yay. He's been very quiet today, a little out of it. They wanted him to go down and do his spirometry this afternoon but he was sleeping so I asked them to reschedule... (It would have been difficult to get a good result with him so sleepy.) Now he's going to go tomorrow morning.

Based upon the results of the flu test and the spirometry, the docs will decide if this is going to be a full course visit (the whole two weeks) or not.

The docs treating Ricky apparently called for a psych consult proactively, because of behavior he has had in the past. I spoke with a med student and at some point one of them is going to come back and talk to him. It's good to have them involved *before* there's a problem.

LPCH doesn't allow visitors under 16 this flu season, so it's going to be difficult for the other kids and me. We'll just have to take things one day at a time.

Thank you, everyone, for your kind wishes and prayers for Ricky. He's a tough kid. :)

Ricky update

Ricky's spent all day in an emergency room bed and just made it to an inpatient room.

He came in with almost all of the signs of H1N1 (fever, chills, dizziness, lethargy, cough, headache, body aches, vomiting) and they eventually swabbed him for it. We'll have the results tonight.

His fever is now 103 *with* Tylenol on board. His chest x-ray, which looked perfect a week ago, is now not so great, with infiltrates in the left lung. His sats were 96ish when we got here and now he's around 90 and on the edge of needing oxygen.

He's started getting IVs of the antibiotics that treat his usual bugs to protect him from secondary bacterial infection... Fortaz, Tobramycin, and Trimethoprim. He also got a first dose of Tamiflu. I was ambivalent about that because of the side effects, but given how bad this got in a hurry, I finally consented.

Yeah, he went downhill quickly. Whatever this is, H1N1 or not, it's kicking his butt. His little sister is at her dad's while we're here, on her third day of fever, achiness, congestion, and possibly ear infection. My mom, Andrew and I have had various versions as well.

Hopefully he's on the road to recovery soon.

If you'd like to send him a virtual card, he is in room 3541 and his name is Richard Whicker. The link is right here.

new post on Hopeful Parents

I just published a new post on Hopeful Parents. Please check it out:

two steps forward, one step back

I am going to post an update here soon, I promise! Things are just, as usual, crazy!

Update!

IMG_3732_cropped
Originally uploaded by Beckerbuns

I am not sure how or why I somehow go weeks between updates. Things are still happening around here, but maybe I am just too tired most of the time to blog about them. :)

Ricky saw his neurologist on September 15 for a checkup. I was happy to report to the neurologist and his nurse practitioner that Ricky has been seizure-free and nearly dizzy spell-free since his last appointment there. The Trileptal is working well for his seizures and the low-dose Topamax is working great for his dizzy spells (migraines?). Usually, after 2.5 years of no seizures, a person would be taken off of his seizure med, but I agreed with them that in Ricky's complicated case, it would not be wise to do that. So he's staying on both meds. And we don't have to go back for a whole YEAR! Yay!

Ricky started back in soccer again and he's doing well. He is usually the goalie but he also likes to kick off, so at times he runs back and forth and does both. :)

Last week and this week, Ricky has been out of school six days due to a sinus infection. He was finally put on oral antibiotics a couple of days ago but thus far he is not improving. It has had him run down, cranky, and at times dizzy. He has also almost completely lost his appetite. :( Hopefully he turns a corner soon and turns back into happy, funny Ricky!

Guess that is all for now. :)

Update on Ricky! (long overdue!)

Ricky's first day of school
Originally uploaded by Beckerbuns

Sorry it has been so long since I posted an update on Ricky. He is doing great! He went back to school a few weeks ago and is doing great there, better than last year. He is in the eighth grade now! (Andrew is now in the sixth grade -- at a different school -- so now I have two middle schoolers!)

Week before last, Ricky had his hospital follow-up appointment with the pulmonologist. His lung function testing was great, and his sputum grew only one of his usual bugs, S. maltophilia. Unfortunately, his weight was down to 92 pounds. The nutritionist is helping us get some weight gain shakes, but it's taking a little time to wrangle with the insurance about what they will cover. Don't you just love insurance companies?

Last week Ricky went to the gastroenterologist for a routine follow-up. We discussed his hospitalization and his weight loss. She is of the opinion that he will end up with a g-tube and Nissen fundoplication eventually because his has CF and is skinny. It's just a matter of when. She's not ready to do it yet (whew) but would like to see him drinking shakes. When he had shakes before he was drinking two of them per day. Maybe we can get him to do that again.

Anyway, that is all for now. His next upcoming appointment is with the neurologist, whom I feel like giving a hug to because of Ricky's recovery from the debilitating dizzy spells now that he is on Topamax!