Doing great!

Just a quick update... Ricky is doing a lot better. He even went to PE today though I'd bet he didn't do a lot there.

I made his favorite dinner tonight, tuna casserole.

We are back to the same old arguments about taking a shower, doing treatments, etc. But it is still WAY better than being in the hospital!

tough kid

Ricky is still struggling, but he's an amazingly tough kid. He's tired and dizzy a lot, and has a hard time with strenuous activity. Today he did go back to school; they were so happy to see him there! However, he struggled with staying awake and finally ended up napping the last couple of hours. Poor kid.

At home he was tired and whiny too, and realllly wanted to go to bed at 7:30 even though he was supposed to take a shower first. ;) I know that the more he moves around and exercises his lungs, the faster he'll recover from this. I called the CF nurse to confirm this and ask if there was anything else we should be doing and she basically said to get him to do some minor to moderate activity to get his lungs working. She is also concerned about his bowels; turned out she saw him on rounds with the doctors when he was in and knows about his backup problems. The good news is that he has been pooping since he came home. ;) Eating, not so much!

Guess that is all from here for now...

good to be home

Sunday was a day of ups and downs for Ricky. He frequently found himself sick to his stomach, exhausted, winded, you name it. It's tough trying to get around and get back to normal after you have been in bed for three weeks. During his last hospitalization, last year, there were an OT an PT who walked him around to get him used to movement again. This time, nobody did that. He got out of his bed and left the hospital, just like that. And he's paying the price in exhaustion.

This morning Ricky had one of his big dizzy spells, the kind where he ends up sleeping for a long time. He slept in the van (with the windows down) while Andrew and I went to Petco to get litter and cat food. I did manage to get Ricky out of the van for lunch. He had meat raviolis with creamy pesto sauce and proclaimed his lunch delicious!

I went ahead and had Ricky get into his soccer uniform even though I figured he wouldn't play, because today was picture day. I figured he could at least show up and support his team, and take the formal pictures with them. That went pretty well although he was still winded and dizzy from walking around. I know it will keep getting better as long as he keeps walking around, although sometimes with the dizzy spells I wish I had a wheelchair for him, poor guy. Here's a poor quality Treo photo of the group photo taking... Ricky is sitting on the bench on the far right (in red).


After soccer we picked Misty up and ran a couple of errands. One thing we did is go to Baskin-Robbins. Ricky got a large Jamoca malt (6 scoops of ice cream!) and sucked it down in a hurry. Then he got sick to his stomach and lay down at my mom's for a while after we got there. Poor kid!

Once we got home, Ricky did okay. He ate most of his dinner before he felt sick to his stomach (I'm wondering if that is an after effect of Friday's anesthesia) and had a quiet evening doing his breathing treatments. He is eager to get back to school, so I made sure that he got to bed on time, or, well, nearly on time. He is not going to be doing PE for a while, that's for sure!

We are HOME!

Yes, home! Ricky called me this morning and told me that the nurse said he'd be coming home at 5:00pm. I dropped Andrew off at my mom's (Misty is at her dad's this weekend) and got up there as soon as I could. The plan was to finish the day's antibiotics and then go home. Yay!

I packed up a wagon with the rest of Ricky's stuff (I'd taken most of it home yesterday) and washed his laundry since he was out of underwear. Then it was a lot of hurry up and wait. Ricky ate his lunch and then lay down to sleep.


The resident came to speak with me and just went over a few last things. He said that the EEG was interpreted as being "abnormal" but yet... No seizures. Hmm. So that's something we need to investigate with the neurologist in June. We are also supposed to go to the pulmonologist in 4-6 weeks.

Ricky slept for several hours and then the nurse finally pushed the last flush through the IV and I deaccessed Ricky's port. He was still sleepy and he lay back down while we waited for the paperwork.


The nurse brought the discharge papers and I signed off on them. I helped Ricky get dressed. He was woozy and nauseated so when he finished getting dressed, I went to ask for someone to bring him to the car in a wheelchair; it was clear that he wouldn't be able to walk down. A nurse brought him down in the wheelchair and they waited while I got the car. I helped Ricky into the car, loaded all of his stuff into the back, and we were on our way!





Ricky continued to be a little nauseated and dizzy. I think it's probably a combination of being in bed for three weeks and also the general anesthesia from yesterday.

We went to my mom's to get Andrew and then went home. I can't even begin to tell you how wonderful it was to be home! I was weepy and happy and excited. Ricky took it all in stride. He and Andrew played video games. He had his meds and dinner and breathing treatments... AT HOME. Hooray!!!

Procedure a success!!!

Yay!!!! Ricky is unblocked! We went down a little before 1pm. Apparently this morning's x-ray showed that the stuff was already almost out, but the residents still wanted Dr. M to to the procedure.

So before they put him under, Ricky had a doppler echo test on his heart. Apparently this was negative. He probably has some pulmonary hypertension, but this is fairly common to some degree in many people with CF. So in other words it's not the cause of his dizzy spells.

Dr. M came to tell me about what she was going to do. She figured if the stuff in there was not solid, it would come right out.

And it did! Within an hour, it was all finished. (Meanwhile, Misty and I read every single book in the waiting room.) Everything came out with ease. (And without eating Chinese food!)

Went to see him in recovery fairly quickly and he was already awake. No 2 hour nap this time like he did the other day!

Now we are back up in the room and he has his NG tube out too! He started the day in a great mood and now he's feeling even better. The deal with the NG tube coming out was that he has to do all of his vest and neb treatments and all of his medications (especially Miralax) without complaint. If he refuses anything, he'll lose his electronics.

Ricky's having some fluids and then if he doesn't puke those up, he gets to have a REAL DINNER. Hooray!

The Reglan was giving Ricky major hand tremors. So I asked the resident if it could be DC'd now that he's cleaned out and he agreed.

The neurologists came and told me that the EEG was normal. The last test they might do would be an MRI to look at the blood vessels in the brain. We see the neurologist next month and we'll talk about stuff then.

I'm going to head to my mom's for OUR real dinner. Ricky should be coming home tomorrow or Sunday. Hooooooray!!!! :)

Thanks, everyone, for your support and encouragement! What a long haul it has been! Three weeks ago tonight we went in to the ER. Holy cow!

Anxious...

Let's try this again... First time I posted this it apparently broke the blog! Sorry about that!

Why am I still awake? I'm guessing I'm still up because I'm anxious about tomorrow (Friday). Ricky is going under general anesthesia again, this time for manual bowel disimpaction. Basically the doctor (his gastroenterologist, who has known him since he was born) will rub his belly to get the poop worked down to the rectum, where she can remove it more easily. I signed the consent today. I'm glad it's Dr. M who is doing the procedure, but I still worry.

The neurology team apparently decided today to extend the 24 hour video EEG to 48 hours. Ricky is annoyed because the cap is irritating and makes him itch. Of course he is still also highly annoyed by the NG tube. He says it hurts his throat and he has been refusing meds because he doesn't want to swallow. When I am there I am able to get him to take them with broth, thank goodness.

The docs ordered two enemas for today. Ricky doesn't even want to sit up, let alone get out of bed. He says it's because of the NG tube but I suspect that at least part of it has to do with his belly being distended and uncomfortable. :( He is on gallons of Go-lytely through his NG tube anyway. So I respectfully refused to give the enemas.

A cardiologist came to see Ricky today because there was a possible cardiac cause for his dizziness that has been under consideration. She went over his entire history and our family history with me, and then examined him. She said that he has a "loud second heart". I looked this up and apparently it can refer to A2 or P2. I take it those are heart chambers. Anyway, one cause of this could be pulmonary hypertension, which a lot of people with CF (and other pulmonary issues) apparently get by nature of their lung condition. She is ordering a heart ultrasound and if his heart is enlarged, PH is something to think about.

I'm not sure if I'd be more worried if the cause of the dizzy spells is his heart, or if it is his brain!

Ricky's having another belly x-ray in the morning. He has been pooping but pretty loose stuff. If the x-ray shows resolution to the poop problem, they'll cancel tomorrow's procedure.

I'm taking my mom to the doctor at 9:30 and then I'll head up to the hospital for Ricky's procedure.

Goodnight!

Hi/Lo Thursday

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.

Seems like a good week to do this...

Our HIGHS
-Stellan's hopefully successful procedure and recovery. It was so heartwarming to hear about!
-Ricky's lungs are sounding great!
-My little one, Misty, growing and changing each day. She is such a remarkable little individual!
-My new laptop ships today!

Our LOWS
-Ricky's still in the hospital and having a hard time. Procedures to unblock his bowels aren't working.
-I had a nasty attack of diverticulitis.
-Andrew and Misty have been struggling with seasonal allergies.
-Read sad news about Kayleigh.

Rotten day

Poor Ricky. Today was terrible. He fought the respiratory therapist and nurse before I got there, and then was angry about having to get the NG tube.

Our neurology consult finally came through today of all days, and Ricky cooperated with the neurologist for the neuro exam after I gave the guy a history.

There was some back and forth about whether to go with Versed sedation again for the NG tube placement, or jump to Haldol. Eventually they went with Versed, which I was trepidacious about but ended up working okay. Ricky flipped out and it took three nurses and me to get the job done, but we got the tube placed. Boy was he mad!!! I cried afterwards. It was tough to go through. :(

Not long after that, I was going to leave when I found out that the neurologist had ordered a 24 hour video EEG. So the techs came in to fit the wires and cap on Ricky and show the nurse and me how to use the camera and how to record "events". They were just finishing when the x-ray guy showed up to take a portable x-ray of Ricky's abdomen, and just as he finished, the respiratory therapist showed up!! Anyway, once that was all settled, I left to get Misty and Andrew.

We came back later and Ricky was tired and resigned, and not very happy. But it was good to see him for a little while.

I'll be there all day tomorrow and Friday. Friday his gastroenterologist is, if necessary (probably will be), doing a manual bowel disimpaction, where she'll massage the blockage down his large intestine from the outside (his belly). He'll be asleep for that.

I'm ready to collapse. Goodnight!

Before I forget

A few of you have asked for me to repost the link to send Ricky a free card. I am blogging from the Treo so it's hard for me to find the direct link, but it's on the right side a little ways down at http://www.lpch.org and his name for the card is Richard Whicker, DOB 11-26-95, room 3315. Thanks!

Frustrated!!

So today started out with Ricky refusing to take his morning meds unless he got an abdominal x-ray. He didn't believe that he needed the gastrografin scan.

So instead of getting myself to the doctor, I had to go running up there to deal with the crisis. By the time I got there, he'd destroyed a bunch of papers in the room, and then they actually gave him his x-ray. Yes, they did what he wanted. *sigh* I got him to take his meds. The resident told me that Ricky may or may not have the scan based on the x-ray results.

Results? Poop. Plenty of it. So at 2:00, after being NPO (nothing by mouth) all day (and plenty cranky about it), I walked down with Ricky on the gurney (and hospital personnel of course) for the dreaded scan. At least he got Versed beforehand and was asleep for the actual procedure.

The procedure only took about half an hour and Ricky finally woke up two hours after that! I sat with him and the recovery room nurse and I tried to get him to wake up. Kid just wanted to sleep. :)

Eventually he gave up and woke up and then rode back up to his room in a wheelchair. He was cranky as hell, wanting to eat. He got a popsicle and his psych meds right away. I hung around and waited for the scan results but finally had to leave because I was already way late to pick up Misty.

The resident had been consulting with the radiologist and finally called me with the news: The scan was mostly unsuccessful. This time the contrast made it up to the transverse portion of the colon before it hit a blockage, and they were unable to get it further.

So the plan for tomorrow is: NG tube with lots of Go-Lytely down it.

*sigh* Tomorrow's gonna be a GREAT day. Yes I'm being sarcastic. Ugh!!!