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!

vacation pictures!

Also, we got back from vacation on Thursday. I've finished uploading all of our pictures, and thought you all might be interested in seeing what Ricky and the rest of us were up to on vacation. The pictures are here.

my first post for Hopeful Parents

I'm a contributor now for Hopeful Parents, and I just submitted my first article. I'll be writing on the 15th of every month.

You can see it here.

home! and on vacation!

Just wanted to let everyone know for sure that Ricky got to go home on Monday. His PFTs in the morning were improved, though not back up to baseline, but they were willing to let him come home as long as I was comfortable with that. I said "YESSSS!!!" and he got some oral antibiotics and orders to start back up on the inhaled ones and we were on our way by about 2. Hooray!

Now we are in the Portland, Oregon area visiting Misty's dad's parents (aka the kids' grandparents). On Friday we're driving to Seattle and then on Saturday out to Quincy, WA to visit my friend Kat and her family. Then hooommmme 14 hours though I'm contemplating stopping partway back (in a place we can visit more friends -- Redding!).

Ricky has been more tired since he came home... He did sleep much of the way here in the car... But he overall seems to be doing BETTER now that he is out of the hospital. Who wouldn't, really?

Goodnight -- I'm exhausted!

well, darn it. :(

He is NOT going home on Saturday. Probably not on Monday, either.

His PFTs today were bad, down at least 10%ish in the areas I was told about.

The resident was alarmed to find out that Ricky had not been doing his vest treatments all week (since being on the NG tube; he says it hurts to do the vest with that in). This likely caused the drop in his PFTs and his need for oxygen for several days.

It is so frustrating that she just realized this. Everyone else has known this all week.

So yeah, he can't go home Saturday. He is having more PFTs Monday and then IF those are good, he MIGHT go home on Tuesday. The resident is not optimistic about him being well enough on Monday.

I am so, so disappointed. Crushed. No Ricky home. More hospital. Delayed, or no, vacation.

This disease SUCKS.

Just feeling sorry for myself tonight. :(

Ricky was a little disappointed but mostly said... "The vest hurt me." "I was sitting down when I did my PFTs so they weren't very good." "I got dizzy when I stood up so I had to sit down." I think he's resigned already. I'm just disappointed. :(

I know the picture above looks dramatic, but it's not really. It was taken last night (Wednesday); Ricky was sleeping and Misty was just making sure he was okay. :)

Ups and downs!

Hi everyone! Ricky's had some ups and downs the past few days.

On Tuesday I got to the hospital at about 2:00, ready to re-access Ricky's port (it can only stay accessed for 7 days at a time). The nurse told me that by 4:15 his meds should be finished infusing and I could do it. At 7:00 I asked her again and she said it would be another 20 minutes or so. At 8:30 I was getting really frustrated because I wanted to get Misty home and put her to bed at a reasonable hour so I asked the night nurse what was going on. Turned out that Ricky was infusing on maintenance (saline)! Which meant that he could have been disconnected already! So she disconnected him from the line and by 9:30 he was finally deaccessed and reaccessed. We got home late that night.

On Tuesday, Ricky was also able to stop having Go-Lytely but then he was put back on it yesterday because he's still a bit plugged up. The doctors have been reluctant to pull the NG tube because they want to make sure Ricky will still drink his Miralax and Mucomyst. Yesterday I tried to convince them to take it out -- because he always drinks his Miralax at home -- and does he really need to have Mucomyst still? It is nasty and he really won't drink it. The lead resident was reluctant to do this, still wanted Ricky having Mucomyst, and finally decided to keep the NG tube in until Saturday -- but the good news was that they planned on discharging him on Saturday.

Fast forward to today... Ricky called me to tell me that they're taking out his NG tube today. A little while ago he called me again to tell me that it's out!!! Yay!!!

The new therapy vest arrived last week and we're going to be trained on how to use it today when I go see Ricky. Then we can take it with us on vacation when we leave on Monday. Hooray!

That's all for now...

holding steady

Ricky's GI cleanout is nearly complete. He will likely get the NG tube out within the next day or two.

He was still needing oxygen yesterday so he had another chest x-ray, but it still looks pretty good. So the doctors weren't sure why he was still requiring oxygen to keep his O2 saturation up. Today, however, he was able to be weaned off of it, quite suddenly! Yay Ricky!

He's getting to the point that he's a bit stir-crazy. He wants to do stuff, eat real food (still on clear liquids right now), etc. Hopefully soon!

As long as things continue to improve, Ricky should be able to be discharged by the targeted two weeks that is a usual CF hospital visit. Keep your fingers crossed!

I have more photos, from yesterday, but I'm pretty tired so they'll have to wait. Thank you all for your good thoughts for Ricky!

yesterday was rough

Ricky at the hospital, pretty worn out today
Originally uploaded by Beckerbuns

Andrew and I got to the hospital (after a fairly restful night) at about noon. The nurse kept us out of the room because Ricky had just had umm, just started to unplug, and there was a mess being cleaned up. She told me that Ricky's blood oxygen levels had started to drop overnight, into the high 80s, so he had gone for a chest x-ray in the morning. Since then the saturations had gone up into the low 90s, which is still low for him.

Eventually we got to go in and see Ricky, who was all cleaned up (along with his room). We hung out with him for a while, but as we did his oxygen saturation was dropping and dropping. 90, 89, 88, 87... As far down as 86. Nobody did anything. I finally went and talked to the nurse. Were they going to do anything about his oxygen levels dropping?? The nurse finally paged the respiratory therapist.

The respiratory therapist came and did a treatment. Ricky had been feeling too poorly to do his vest but at least he did the treatment. Problem was, though it did bring his sats up to the low 90s, they dropped back to 86ish right after that.

I went and asked the nurse to page the resident so I could ask about the x-ray and the plan for treatment. I waited for the resident for almost an hour before I had to go get Misty from her dad's.

We got Misty and came back... The resident had just left. D'oh. They paged her and she came to talk to me. She said that his chest x-ray was actually much improved. She thought it was possible, though, that he had aspirated during the traumatic NG tube placement the night before and the resulting congestion just wasn't showing up on the x-ray yet. He also had a small portion of possibly collapsed lung on the lower left. She said it was okay for him to be on oxygen if he needed it.

I asked whether the NG tube could be pulled soon. She said they wanted his stools to be clear before they'd take it out. He has a long way to go before he gets to that, it sounds like... He was very full of poop the last time they did an x-ray of it.

After the resident left, Ricky's O2 saturation continued to deteriorate. It never got about 90 after awhile (before that, it had been fluctuating a bit). He had fallen asleep and a nurse came in and put the oxygen mask on him. He doesn't like cannulas even under normal circumstances, and especially when he has the NG tube in. The problem with the mask is that they have to crank the O2 up to 6 liters or it isn't effective.

Ricky slept for several hours. He slept with his brow knit into a wrinkled expression -- he was clearly not feeling well. When he woke up he was still drowsy and looking uncomfortable. He lay there looking sad and in pain for the rest of the time we were there. He had another breathing treatment as well.

When it was time to go, it was really, really hard to leave Ricky. I gave him a hug and a kid and told him I love him. He said he loved me too and squeezed my hand. My poor guy. I hope he got good rest last night.

This morning I spoke with Ricky and he sounded cheerful. Yay. :) He is still on O2 and still has the NG tube but it sounds like maybe he did get that rest.

Going up to see him shortly.

we have an NG tube

Two enemas on Thursday. One on Friday. A moderate amount of poop Thursday and a ton on Friday morning. But the doctors told me that it wasn't enough. A KUB (abdominal) x-ray on Friday morning showed even more stool than the one from a few days ago. It had moved around some but it wasn't coming out.

Many hours after this afternoon's enema he still hadn't had any poop. Or anything else (the Mucomyst enema didn't come out either, which was weird). Around dinnertime the resident started talking to me about an NG tube to run Go-Lytely through and make things move along. Apparently they had wanted to do it on Thursday but held off. She said that even if he pooped, or we did more enemas, he'd still need the NG tube. I told her I wasn't sure what to do. I had convinced Ricky to do the earlier enema by promising him he wouldn't have to have an NG tube if he did it, which I thought was the truth. I felt like a big meanie.

After 8 the resident came to ask me what the decision was. I told her I guessed the should do it, but I didn't want to be involved in holding him down. I did say I would hold his hand and/or be there if he wanted me. I just wasn't happy about the situation.

I held off as long as possible to tell Ricky that he was going to have the NG tube placed. He started covering up his nose and protesting. Close to midnight, the nurses finally came in to do the NG tube placement. With three of them and me (yeah, they asked me to help hold him) we did not have enough strength. Ricky scrambled and squirmed and buried himself under his blanket. A nurse called for help from another unit and a big male nurse and another strong nurse came. So in the end I did not have to hold him and there were four people holding him down and one placing the tube. Ricky kept asking if he could just drink some Mucomyst so they wouldn't have to do this, but we all knew that would not work for him. It was all or nothing. Finally he started pleading: "Mommy, help me!" :(

Finally, the NG tube was in. Of course, then they couldn't tell if it was placed correctly. They listened and listened and didn't hear the proper sounds. But finally... It was in the right place. And now his nurse just came in and started the pump with the Go-Lytely.


Ricky is tired and sweaty and Andrew is playing Wii. I think Andrew and I will lie down soon; he's not supposed to stay overnight but I'm going to see if we can swing it anyway. I have nowhere else for him to go as my mom is still recovering from surgery and she is really our only option. At least Misty is with her dad overnight.

Exhausted. :(

today's update

Ricky has had a rough time of it these past couple of days. He started off on Tuesday night (after I had returned home from going there to re-place his port needle) refusing to take his meds or do his vest treatment. I went up there to see him yesterday after work and together with the child psychiatrists, we worked out a plan for him to earn video games if he does his treatments and meds like he's supposed to.

Ricky has pretty much lost his appetite, and has had a couple of uncomfortable procedures yesterday due to the fact that he is now also developing a bowel obstruction. Argh!!! These treatments continue today and hopefully things will improve soon. I'm going to talk to the resident about getting Ricky home on home IVs soon so we'll be able to go on our vacation starting August 3. He also does better with his eating at home and doesn't develop these pesky bowel issues.

To see the photos I'm uploading during this hospitalization, you can go here.

If you'd like to send Ricky a virtual card, you can go here and do it for free. You will need to give his name, Richard Whicker, and room number, 3341.

Did you know that Ricky has a Facebook fan page? You can find it here and become a fan. :)

Finally, Ricky's doing a Tupperware fundraiser for CFRI and Packard Children's Foundation. ALL of my consultant profits for this fundraiser are going to those two organizations in Ricky's name. If you're interested in helping out, you can go here to shop.

back in the hospital :(

Ricky's back in the hospital.

It all happened rather quickly, actually. Sunday night after he had done all of his breathing treatments, he informed me that he was wheezy and his chest was tight. I put my ear to his chest and I could hear whistling and rumbling. This should not have been the case after his treatments. I called the CF doc on call and he told me to give Ricky treatments every three hours all night. I had Ricky sleep next to me (he has a loft bed, which would have been difficult to deal with) and I did the treatments throughout the night.

In the morning, things were not much better. I called in sick, and called the CF nurse to let her know. She called back a while later and, to my surprise, said they would be directly admitting Ricky. This hasn't happened in a long time. Usually we have to go through the emergency room first.

I packed a bag for Ricky and we headed up to the hospital. He fell asleep on the way and was still sleepy and woozy when we got there, so I put him in a wheelchair. He was definitely short of breath. He got admitted fairly quickly and then it was so much hurry-up-and-wait.

It was nearly impossible to get him to wake up. I had to hold him and stand on the scale. Yes, he weighs about 100 pounds. Urgh! Because he came in with a cough (duhhh... He has CF) they had to do a nasal swab to test for "flu A" which I understand includes swine flu. We couldn't get him to cooperate, and he was still sleepy, so I had to help two nurses and a CNA hold him down so another nurse could swab his nose. That was tough. :(

After that he was moved, still sleeping, to a double-doored isolation room just in case he did have the flu. I still think it's unlikely since he didn't have a fever (though he rarely does) or any other flu symptoms...

When he woke up, after several hours, I accessed his port (these days he only likes me to do it, sigh) and he started being infused. I left to get Misty from her dad's and Andrew from home, and brought them back up to see Ricky for a while. Then we headed home at Misty's bedtime.

Today I went to work and I got a call within the first hour to tell me that Ricky's port had been contaminated, and they couldn't risk infection by using it any longer. He would need to be reaccessed, but he apparently still only trusted me to do it. *sigh* So after my 10:00 meeting I drove up there and took care of getting him deaccessed, numbed (found a new numbing patch that is GREAT, works way better than the topical ointment we use at home to flush the port), and accessed.

The nurse informed me that Ricky had refused to use his chest therapy vest this morning. *sigh* So I hung around and made sure that he used it for his afternoon treatment. Then I left, because we were celebrating Misty's birthday (which was yesterday) at my mom's.

I got a call as the other two kids and I were leaving my mom's, from Ricky's nurse. She informed me that he had been sleeping since approximately 3:00 and was refusing to take his evening meds. I talked to him on the phone and he just kept saying he was tired. *sigh* The nurse said they'd try at 8 to give him all of his evening meds and that she'd call me if there were any problems. It's almost midnight and I haven't heard a peep so I guess that's good news.

Tomorrow I need to ask about the flu test, yesterday's and today's chest x-rays, and today's pulmonary function testing. Just wondering if this will be a short stay or a looong stay. Or maybe somewhere in between.

So far he is taking his Miralax okay, as far as I know. So hopefully no bowel blockage this time...

Guess that's all for now.

Update

Us on the fourth!
Hi everyone! Sorry it has been so long since I updated.

Ricky has been in summer school so I've had to get him back onto an earlier bedtime schedule. I am lucky that he has agreed that this is a good idea. He has been really good about his treatments, etc. Speaking of which... He's getting the new Respirtech vest system! He already has the Hill-Rom version but it's old and (and analog). The Respirtech vest is digital and automated and COMPACT! We will have it in time for our vacation the first week of August! Hooray! Look at how small it is! Here is more info about how this machine helps people with CF.

By the way, Ricky is still dizzy-spell-free! We have maxed out the Topamax dose... He was on 3/4 dose and still had very occasional spells so we went up to the max we are allowed to use. Hopefully this does the trick. I am just so relieved that he doesn't have to go through those anymore!!!

Still fighting those stupid insurance battles. It seems like every other med for Ricky requires a prior authorization. It is incredibly frustrating.

Ricky's gearing up for bipolar camp at the beginning of August. This will be his fourth year going and they've had it for five years now. He missed it two years ago because he was unstable.

Guess that's it for now!

long-overdue update

Ricky holding baby Elliot
Originally uploaded by Beckerbuns

I know, I know, I've been bad about updating! Had a little staycation at home when my BFF from Washington came to visit.

Last Tuesday, Ricky had his appointment with endocrinology. The good news is that he has grown an inch and is showing signs (I'll spare you the details) of puberty. The endocrinologist checked the computer for the MRI results and found that there were some interesting things found, but nothing significant to the growth issue... Which I suppose is now a non-issue! I got a copy of the neurology report. We did not need to make a follow-up appointment but we're following up with the CF doc of course, and she'll refer us back to endocrinology if Ricky shows signs of CF-related diabetes or anything else of concern.

A couple of days later I got a call from the neurologist's office saying that his MRI was essentially normal... Nothing to worry about.

Good news on the neuro front... Ricky's dizzy spells have STOPPED. That's right. No more. He is at 3/4 of the total dose of Topamax that was prescribed to him. I hesitate to be hopeful because my hopes have been struck down so many times. But... This IS hopeful stuff.

Ricky has still been tired a lot and has the chronic cough going on... But he is still healthier than he has been in a long time. Yay, Ricky!!!

He had an orthodontist appointment last week. We have been going back periodically because Ricky's teeth have been around 5 years behind. The last time, we went back to the dentist and Ricky had four teeth pulled. Luckily (?) after that he lost a bunch of teeth in quick succession (including one a couple of weeks back), and now in fact he is about to lose the last baby tooth he has.

The problem with the teeth is that he is already growing in permanent teeth that have nowhere to go because his mouth is so small and his teeth so plentiful. It is possible to see permanent teeth under the surface trying to come in. So in a few months he'll have to have some permanent teeth pulled and move into orthodonture (oh joy). The dental coverage we have right now doesn't cover orthodonture, so we'll have to cross that bridge when we come to it.

In case you're wondering about the picture attached to this entry... That's not some sneaky surprise of mine. That baby is Elliot, new baby son of our friend Rachel. Ricky still remembered how to hold a little baby without being shown! :)

Guess that's it for now...

MRI today

Ricky had his MRI today. He had a dizzy spell/fatigue episode right before it but was okay by the time they did it. They accessed his port for the contrast that was going to run through while the MRI was done.

He got to watch "Little Vampires" in goggles while they did the MRI. Funny thing, the MRI tech had me take off my watch and glasses and remove my ATM card from my pocket before we went into the MRI room. She didn't notice my barette! Whenever I leaned over to talk to Ricky, my hair lifted up into the air. It felt like I was brushing my head on something. It was, in fact, the MRI machine trying to steal my barette! Hehe!

Once he was settled, I went out to the waiting room and my friend Kat and I went to get lunch while waiting. (Poor Ricky hadn't been allowed to eat since 9 -- poor kid! We took him for food afterward.)

Ricky did fine with the MRI. I'm not sure when we'll get results but we do see the endocrinologist next week and might find something out from him or her about what's going on with the pituitary gland (MRI was of the brain and pituitary gland, along with an additional MRI of the brain with contrast).

I'm proud of my boy. I hope this test offers some answers. Hopefully something that we can do something about!!

On the way home, we stopped for some geocaches and were visited by some friendly, curious, and affectionate ponies... (I'm assuming they're ponies since they were so small!)

Neurology visit

Went to the neurologist on Wednesday and it went well. It was a pretty quick visit, but the good news is that Dr. O had followed Ricky's case in the hospital in April so I didn't have to go over everything with him again.

He did a neuro exam and then said he wanted to put Ricky on Topamax, a very tiny dose, to see if it helps with the dizzy spells. If it doesn't work, it doesn't work. We'll titrate it up until it does work (if it does) up to 50mg total per day.

He also wants to do a head MRI as well as a specialized MRI that looks at the blood vessels in the head to see if there is a problem there. I mentioned that the endocrinologist might be wanting to do a CT of the pituitary gland (it's something we were going to discuss at his appointment later this month) and he said he'd add that on.

I Twittered about the Topamax and got a number of responses from people who have been on it for various things. The terms like "dopamax" and talk of appetite suppression (the last thing Ricky needs) and mood swings worried me... So today I left a message for the neurology service and a nurse practitioner called me back. She said that the effects like those are from very LARGE doses, and Ricky will be on a very, very small dose. So... I think we are going to go ahead and try it.

Today was Ricky's last day of school. I guess it was a busy one because this afternoon and evening he was very tired and grumpy. :P Starting tomorrow he'll be off for a few weeks until he starts summer school.

Guess that's it for now!

potpourri

Ricky, my soccer hero
Originally uploaded by Beckerbuns

Check out the video I made of Ricky! It's a very preliminary attempt at video editing and it's kind of pathetic but I thought you might all enjoy it. (I mean the video editing is pathetic -- not the subject!)

Ricky had his last day of soccer for the spring on Sunday. He played hard and scored multiple goals. He was only able to play so well the last couple of weeks because he was sick for so long. :( Hopefully in the fall we will have better luck.

If you would like to see the rest of Ricky's pictures and videos from this season of soccer, they are here.

So, tomorrow is Ricky's long-awaited neurologist visit at Stanford. We used to have a pedi neuro in San Jose but he's not on the newest insurance and the docs at Stanford are. This one is highly regarded by Ricky's pulmonologist so he should be worth the wait.

Ricky has continued to have dizzy spells and spells of extreme fatigue. I hope that the neurologist has some ideas, because everybody else has tapped out their ideas. I found the CD of Ricky's brain MRI from two and a half years ago. I am hoping that this might help the doc, though he might want to do an MRI that shows different stuff. Not sure. I hope he will have had the time to review all of Ricky's test results from the hospital stay (echocardiogram, video EEG, etc.) because he had almost a full neuro workup. There isn't much left.

We saw the psychiatrist yesterday. Which reminds me, we finally got Ricky's meds late last week. It was a close call. He was actually out of meds and I was getting desperate, crying in desperation and wanting to throw the phone every time I had another frustrating conversation with the insurance company or doctor's office. Finally what it took was Dr. J, Ricky's psychiatrist, CALLING the insurance company to see what the heck they wanted from him. He had faxed the prior authorization forms repeatedly.

And finally, we are in the process of trying to get a new chest therapy vest from Respirtech. They make a newer, more technologically advanced, streamlined vest machine that can be programmed. (!!!) It is also smaller. We have the giant mondo original vest from Hill Rom and it is completely impossible (well, mostly) to take it on vacation. Hopefully we get the Respirtech vest (depends on CCS and insurance) because it would be great to have on vacations. Other methods of airway clearance just don't work as well for Ricky.

Ricky's last day of school is this Thursday. He has a little break and then has summer school during July. In August we (the three kids and me) are planning on going on a road trip to Oregon and Washington. We'll visit Dave's (Misty's dad) parents, do the tourist thing in Seattle, and then visit Kat in eastern Washington. We are really looking forward to the trip.

Guess that's it for now! Thank you all for keeping Ricky in your thoughts.

I am in shock.

I know that many of you are readers of Emily M., mom of Dakota, via the "Two Premies and the Big Sister" blog and her other blogs. Emily and I shared lots of information with each other about chronic lung disease and commiserated about our children's medical issues.

I got word today that Emily has been arrested. Details are here and many other places in the Texas media.

I am in total shock. Oh my God. It sounds like Emily needs help but I am so sad for her husband Raff and her kids. Please keep them all in your thoughts and prayers (if you pray).

Edited to add: Per Austin CPS, anyone with information about the case is asked to call 512-974-6880.

Ricky's day at MakerFaire

From beginning to end. A very full day!

See the full gallery on posterous

Posted via email from becky's posterous

CF clinic follow-up visit

Today (Tuesday) at 11 Ricky had a follow-up visit with the CF doc. I needed to do something quickly at work, so I took him there with me for just an hour. Right before we left the house, he started complaining of a headache, chest tightness, dizziness, and a stomach ache (the last one being a new thing). When we got to my work, it started to get worse and by the time we left there, he was hobbling along unable to stand. At one point he even lay down on the floor. I limped him out to the car and we drove up to the CF clinic. He had his seat back and looked like death warmed over. He was pale and looked terrible. I debated about whether I should take him to the ER instead but he started to come around as we got closer to the clinic and he was finally okay. I took him inside in his wheelchair because he was a bit unsteady, but soon he was back to himself. It sure was scary.

The CF clinic visit went fine. He has lost a little bit of weight, about 3 pounds. Not good. :( However, his lungs sounded crystal clear and his spirometry was "stellar"... Some of the numbers the best they've seen in years. His vital signs were all great too. It was interesting to have his vitals checked right after one of his dizziness episodes... Proves the lungs basically have nothing to do with what is going on. Still don't know what does, though! We do go to the neurologist next month.

We are still waiting for the Seroquel that I posted about last week. The psychiatrist's insurance auth person was supposed to fax in the prior auth form (AGAIN) today but I didn't hear from her that it was done, and she didn't return my call. I checked with the pharmacy and the prescription still isn't going through. I tried to refill his 25mg Seroquel prescription today and found out that that one had been revoked as well. ARGH!!!!! When I got home I downloaded the form to file a grievance with the insurance company. If that doesn't get us anywhere, I go to the Department of Managed Health. I had to do that two years ago when Blue Cross was denying and/or not paying for all of Ricky's hospital and ambulance bills.

I hate insurance companies. Have I mentioned that lately? Oh, probably. :)

That's it for now...

What is CF and what is the defect?

Well, May is CF awareness month and I haven't done much in the way of promoting awareness, have I? So here is my contribution. Well, not mine exactly... But a grad student made this incredible animation to show what CF is and what the defect is that causes the disease's progression. Please check it out!

little update

Most of what we have been dealing with this week is Misty's illness (a stomach virus combined with pneumonia) but I did want to update about Ricky.

On Saturday he had a rage at a baby shower we were at because of a misunderstanding. I managed to get him to the car and calm him down eventually. It didn't even require extra psych meds. But it was scary. And frustrating because it was the first rage in a LONG time.

And then there is MORE stupid insurance company BS. And I am going to call these jerks out by name in this blog entry so that anyone who is considering signing up for this company through Healthy Families will think twice.

Tonight Misty and I went to Walgreens to fill her antibiotic prescription (Amoxicillin) and pick up several of Ricky's prescriptions. Guess what? The insurance company decided to REVOKE or CANCEL the prior authorization for one of Ricky's psych meds, Seroquel 100mg, that was issued in March. They say he should only take 30 pills per month. He takes four per day. The insurance company (Anthem Blue Cross) is power crazy and out of their heads. The representative of Anthem Blue Cross told the pharmacist on the phone that they WOULD pay for 400mg tablets, since he takes 400mg per day. If only it were that simple! He takes 250mg in the morning, 150mg at noon, and 150mg at dinner. The 50mg each time is made up by two 25mg tabs that we also get. 400mg tabs would not work. And with the prior auth revoked, we have to jump through the same hoops we jumped through in March, all over again. That took three weeks. If it takes that long again I'm going to write to the California Department of Managed Care. No, screw that. I'm going to write to them anyway. This is ridiculous. And you know what else? We were never treated this way by Blue Cross when we had them through Dave's employer. I am just about convinced that all of the hoops they've made us jump through since January are because the kids are covered under a state-sponsored plan. In my eyes, that is discrimination, and it's a big load of BS.

I feel a lot better having gotten that off my chest. And now, it's bedtime.

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.

Our HIGHS
Ricky's lungs are staying well! He also had a successful visit to the psychiatrist.

Our LOWS
Ricky continues to have dizzy spells and exhaustion of unknown origin. None of the doctors have answers.

Ricky

Ricky was doing fine yesterday and went to school. I was almost to work, about 9:00, when I got a call that he wasn't feeling well. He said it felt like a bubble was in his chest, and he was very, very tired.

So he went to sleep and I went to get him.

I took Ricky to the pediatrician and his lungs apparently sounded fine. The doctor prescribed some prednisone but meanwhile I had been in touch with the CF nurse and I waited to hear from her to find out what to do. There was a possibility of Ricky going up to see the CF doc.

Well, we never heard from the CF nurse. But Ricky was feeling a bit better so we went on with our day.

He did have a dizzy spell as we were getting to the psychiatrist appointment that he had at 1:30 so I brought him in there in a wheelchair. I kind of vented at the psychiatrist about everything that has been going on with the dizzy spells and all, and he was very sympathetic.

Ricky's appetite has been much decreased, and in fact according to the scale at the pediatrician's office he has lost weight. :( Gotta work on that.

Today he went to school after a full night's sleep and seemed to be doing okay. Yay!

now you can rest, sweet girl.

Kayleigh passed last night in the arms of her parents. She was just shy of 11 months old and had spent her entire life in the NICU.

Rest in peace, Kayleigh.

Update

soccer boy
Originally uploaded by Beckerbuns

First of all, happy Mother's Day to all of the moms, grandmas, aunts, sons, and daughters out there! :)

This past week, Ricky saw the gastroenterologist. He has grown almost an inch and is doing well healthwise. She said his belly was good, and that he needs to stay on Miralax two times a day now. I asked if he was more likely to have a blockage again because of having these blockages in the hospital. She said that, to the contrary, he is more likely to have blockages again just because he was born with peritonitis due to a blocked and ruptured bowel. In other words, he was already more likely.

She said that his lungs were a little crackly, but not unusually so for someone with CF and definitely better than they were when he was in the hospital. (That's one thing I like about her -- she always listens to his lungs too, even though she's a tummy doctor. I like that she is thorough.)

Ricky has still had some trouble recovering from his hospitalization. He was out of school one day this week and slept much of the day on another day. He also had a couple of major dizzy spells. I'm getting so frustrated... I wish I knew why these were happening.

I came to a decision after Ricky got out of the hospital that we needed to get a wheelchair for him. Mind you, it would only be used when he is having one of his spells and can't walk without being about to pass out. So I started searching Craigslist, Freecycle, and the local Las Madres bulletin board to try to find a used pediatric wheelchair.

Someone responded to my Craigslist ad that she had a small adult-sized wheelchair, used. She lives in Watsonville, quite a distance away, and was willing and able to drive in from there to show us the wheelchair. I met her at a local Wendy's (the one where the infamous "finger in the chili" incident happened, incidentally) to check it out. It's definitely used, but fully functional and just the right size for Ricky. I bought it. I feel a lot better now being prepared.

There's no soccer today because of Mother's Day. The kids and I are taking my grandmother to the airport today. My mom's going to be on her own briefly and then have people around most evenings to help her. She's recovering nicely from her leg injury!

Finally, Ricky got a package from Fed Ex this past week... In it were discs of all of the photos from his Genentech photo shoot back in November. The picture you see here is one of them and some more are here. They turned out great, didn't they?

Wow. Just wow.

(click the picture to see it bigger on Flickr)



He's so TALL. *boggle*

Blah.

Ricky seemed to be doing better so he suited up and went to soccer today. But he was almost immediately hit by a headache and dizziness episode and we left after about 20 minutes. He really did try but it just wasn't meant to be. :(

Then he napped for 4 hours at my mom's! He slept right through dinner. He was sweaty and felt warm so at one point I checked his temp, but it was normal (his always seems to be, even when he IS sick).

Still recovering from the hospital I guess. It's scary to me that it has taken this long, because it hasn't in the past, but then, this time he was in a lot longer than usual.

Guess that's it for now...

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!!!

somewhat discouraged...

Ricky 4-19-09
Originally uploaded by Beckerbuns

Ricky's belly started to look distended again yesterday. I called his gastroenterologist and she came in to check things out. An abdominal x-ray was done and yes, the blockage was still there. Sigh.

So he's been having enemas again (at least he's letting people other than me do them now) and tomorrow (Tuesday) they are doing the gastrografin enema scan again -- this time under general anesthesia.

I did not go into too much detail about the scan the last time he had it. Oh, it is not a pleasant procedure at all. We did it last Monday as you might recall. They hang a BIG bag of this gastrografin contrast stuff and then shoot it into his butt (sorry to be blunt there) while they scan with a fluoroscope (kinda like a live x-ray). Originally this procedure was used or diagnostic purposes but it turned out to clean people out so well that they started using it for that purpose.

As you may recall, when they did it last week, even under awake sedation (versed) Ricky was very freaked out and scared and didn't want to cooperate. Versed is also supposed to make a person not able to remember anything that happens when they are on it, but with him he remembered EVERYTHING so I'm pretty sure the doctors just figured that it was better to put him under this time. His gastroenterologist also mentioned the possibility of working the blockage out manually (pressing on his abdomen) while he is out but I don't know if they'll be doing that.

Last week, the blockage was not too far in from the rectum, but too far in to be reached by traditional enemas. On Sunday via x-ray it still looked like that was the case. When they did the scan last week, it was persistent enough that it forced the enema stuff right back out. :( It was awful. I am so glad he is going to be asleep this time.

In other news... I reaccessed his port on Saturday and for some reason it clotted up today already. So I accessed it again today. It is funny how excited the nurses get when they find out that I am going to do this task instead of them!

Also, the respiratory therapist this afternoon let me know that Ricky's lungs sound GREAT. Yay!

Ricky did pass a lot of gas and poop some yesterday and today, and while he feels a bit better, he is still distended. So I think the procedure is probably a good idea, as much as I hate the idea of it.

To top everything off... Because you know, not enough stress yet... My diverticulitis flared up yesterday... Likely due to stress and eating crummy food due to always running back and forth to the hospital. I was in misery all last night and still weak, dizzy and dehydrated today. I need to be strong for Ricky but I also need to take better care of myself or I am no help to him. Do me a favor and keep reminding me of this, okay? :)

Goodnight...

Going to be here a little while longer...

Ricky doing his vest 4-18-09
Originally uploaded by Beckerbuns

Yesterday Ricky went downstairs to do pulmonary function tests (PFTs) in order to find out whether he is ready to come home yet. The verdict: Not yet. The doctors came and told us later that, in fact, his lungs are back to where they were upon admission. *sigh* That's what happens when you don't do your vest for a while because your tummy hurts too much...

So the plan is to check his PFTs again on Monday to see if he's ready to come home then. He may be sprung on Monday.

His tummy is still a bit distended but is way better than it was. You can bet he's not refusing his Miralax anymore!

So, that's where we are at, for now.

Also, here is a video of Ricky doing his vest and treatment:

Still lookin' good!

Today Misty was home sick so I did not go to work after all. She and I did go up to visit Ricky for a little while, but not too long. It happened to be good timing as he was just about to get his NG tube pulled. He had already ordered up a big anticipatory lunch. They didn't bring him what he wanted, but he still liked what they brought (taquitos and refried beans, and a cookie that he gave to Misty) so as soon as that tube came out (which was no biggie, but he held both of my hands just in case) he went to town on those and the jumbo-sized Jamba Juice smoothie that I got for him (I had called the nurse in advance to make sure that he'd be able to eat it).

He was off oxygen, but only satting in the low 90s, so I wouldn't be surprised if he had to go back on it tonight. He is apparently still pooping, but his belly still looks distended to me. I guess it could take a while for all of it to come out! While I was there, his gastroenterologist from San Jose called and asked how he was doing. I filled her in on things resolving and she said if he is still there this weekend she would come see him.

Ricky also seemed in generally better spirits. He had a breathing treatment (with the Vest -- first time for that since he started with the bowel problems) while we were there. He was talkative and active and awake. (He was asleep when I got there but that didn't last long.) One weird thing he mentioned was that he was hearing Pokémon battle music in his right ear when he was trying to sleep. Isn't that strange? He called his class on the phone and talked to each of his classmates (there are only 5). He was watching "Home Alone 2" when we left and I told him I'd be back tomorrow. I need a break tonight, especially now that things are going well with Ricky.

Later on, I called and talked to Ricky's nurse and asked some things I had been wondering. First, when were we looking at for discharge? She said that he is having PFTs tomorrow and if those are good, he could go home tomorrow -- but that the doctors feel that it's more likely he'll be there through the weekend. That sounds about right to me... His lungs still need to catch up from the losses they made when his bowels were messed up. The vest machine really makes a difference for him.

If Ricky does stay past tomorrow, this will be his longest hospitalization ever (either than when he was born and in the NICU for 7 weeks). Of course, it has been quite an unusual hospitalization this time. Whew!

Things are looking up!

Right, well, Ricky has been pooping all day! Hooray! The other two and I got there about 2:30pm and an x-ray was taken then. The resident told me that Ricky was still pretty full of poop, which was also easy to see by his distended belly.

So the plan was to finish giving his NG tube Go-Lytely, run the NG tube on suction for a while to get the air out of his belly (he has seemed to have a lot this whole time), and then remove the NG tube tonight. At some point I was also supposed to give what would hopefully be the last enema. (Ugh.)

Plans changed only slightly over the evening. He was put on suction indefinitely actually, and they'll keep checking his belly distension. The NG tube was not removed yet. I actually explained to the chief resident (when he came to check Ricky out) that I was afraid of it coming out too soon. What if he remains blocked and we have to put it in again? Ugh!!

Good news is that Ricky is hungry ("for real food! Not Jello!") but bad news is that they won't let him eat yet. He is a pain about taking pills because it hurts to swallow with the tube in. He refuses to drink anything cold (including the apple juice with his Miralax in it) because it hurts.

But at least we have poop!!! Yay! :)

While we were waiting for things to happen (which always take forever in a hospital) Misty and her buddy, Ricky's neighbor Jaden, who is 3, went to visit the therapy animals -- three dogs and a bunny! I have a great Polaroid of Misty with the bunny but there are some cute pictures with this entry as well, and also Ricky's daily picture!

Thank you to everyone for your support. Couldn't do this without all of the encouragement!

melancholy day bordering on awful

Ricky 4-14-09
Originally uploaded by Beckerbuns

I managed to get to bed at a reasonable time last night. Then at 1:30 in the morning I got a call from Ricky. He had thrown up all over himself. The nurse got on the phone and told me that he'd been having the Go-Lytely through the NG-tube since 6pm and had just thrown up all over. I talked to him and told him things would be okay. He sounded a little scared and sad. :(

Got another call at about 4:20am. This time, it was the nurse. Ricky had had a coughing fit and was having trouble breathing. He was panicking and she needed me to talk him down (he had asked for me). He was wheezing and gasping and sounded AWFUL. I know that coughing and throwing up disturbs the NG tube. I asked the nurse if she'd called respiratory and she said she'd paged the doctor to come listen to Ricky's lungs, and had cranked up his oxygen. I talked to him again and calmed him down and told him I'd see him in a few hours.

After Andrew went to my mom's and Misty was at day care, I drove up to the hospital and got there at about 9:30am. Ricky was asleep. My timing was perfect because right after I got there, a hospital gastroenterologist walked in to talk to me about Ricky's condition. I learned that he had actually thrown up THREE times, and pooped once, although it wasn't very much. The pulmonologist arrived at that time too, and said that a KUB (abdominal x-ray) was going to be taken. The gastroenterologist said that Ricky was plugged up below the transverse colon (which I knew from yesterday's procedure). I told her that I had called Ricky's gastro doc (down here in San Jose) to let her know what was going on and he agreed that was a good idea. At that point I was still waiting for her to call me back.

Right after the docs left, the portable x-ray machine arrived and the lady took Ricky's x-ray.

While that was being done I went out to the nurses' station to chat with the charge nurse, who I knew from previous stays. The pulmonologist was out there and for the first time I heard the "S" word... Surgery. I struck it from my mind and didn't think about it for a long time, but basically what he said was that if none of these interventions worked, we would be looking at surgery. *shudder* He also mentioned that he was very concerned because Ricky's vomit had been filled with green bile. Sorry to be graphic here, but... That was what was in it on Saturday too and it is NOT a good sign.

I went back to Ricky's room. Things were quiet for a while and then the nurse brought in an enema. The x-ray results had apparently come back and this is what the doc wanted done. I never did find out what the x-ray showed but Ricky also pooped while I was there, yay. Still, it wasn't a lot.

Ricky's gastro doc from San Jose called me back and I filled her in on all that had happened. Almost everything she suggested, had been tried. Her final suggestion was simple stool softener, Dulcolax. She said she'd call the hospital gastro team and talk to them about it. I really wish I had called her sooner but it sounds like the docs at the hospital did the same stuff she would have. She has privileges there and was actually there over the weekend seeing another patient. She is going to come see him in the next day or two. She also said that the fact that he does not tolerate Go-Lytely is a "bad sign".

The resident psychiatrist also came to visit and we went over what had been going on. She promised to pass everything on to Dr. J, her colleague, Ricky's psychiatrist.

He slept all morning (probably because he had been up most of the night before? not sure) and around lunchtime the nurse reminded me about the enema. I told her I would wake him up soon to give it to him.

It ended up taking an hour and a half to get Ricky awake and convinced that he needed to have the enema. I had to take his Nintendo DSi away. But finally he let me do it. As has been our routine, he laid down on a blanket and his pillow on the bathroom floor and I did the enema. Then he went back to sleep. I had to leave to go get Misty, and Ricky ended up sleeping there for another hour and a half before he got on the toilet and pooped, but not a lot. I found this out later from the nurse. She said he'd gone right back to bed.

So I got the other kids, visited with my mom and grandma for a bit, and then drove back up to the hospital (with Misty and Andrew). When we got there, Ricky was sleeping. I took the picture you see here at this time. His oxygen saturation monitor probe was malfunctioning, but once the nurse replaced it, he was satting in the high 80s to low 90s. He had been on 6 liters of oxygen since I think Saturday? (minimum with a mask is 6L) and I cranked him up to 8, and then 10, before his oxygen level looked adequate. That was scary. The nurse and the RT this afternoon both said that he was diminished in his left lung. He has been unable to do the therapy vest since all of this started because of his distended belly and the pain it would cause.

After I had left earlier in the day, he had been started on a new medication, Reglan. I had, and still have, my reservations about this med because of the CNS side effects it can cause and the fact that you're not supposed to take it if you have a history of seizures (which Ricky does) or a bowel blockage (which he doesn't strictly have, but might as well have, IMHO). I am trying to let go and trust the doctors. They know about all of Ricky's issues and still want to try this medication. Obviously they wouldn't do it unless it was necessary. We are running out of options.

He had also been started on Go-Lytely in the afternoon, at a very low flow rate so as not to cause the major vomiting of the night before.

Ricky basically lay there and slept most of the evening while we were visiting. He refused his apple juice with Miralax, and only took his meds with broth because I coaxed him to do it. At one point I put on the Simpsons movie DVD for Andrew to watch and Ricky actually woke up and watched the last 45 minutes or so of it. Misty and Andrew went walking around the floor with a child life specialist, and I took that opportunity to get Ricky out of bed to give him his evening enema. He didn't protest at all. In the morning, he'd gotten out of bed quite easily; this evening he had a very hard time of it and was walking like an old man again. :( He got on the toilet only 10 minutes after the enema and pooped just a little bit, and got right back into bed and slept again.

We left at 10pm. I felt (and feel) so brokenhearted. My boy is not himself. His belly is distended, his innie belly button poking out like a pregnant woman's. He shuffles around like a little old man. He can't eat (doctor's orders) not that he would want to even if he could, I think. He is on oxygen because his digestive system is squeezing his diaphragm up into his lungs. He even has to have oxygen from a portable tank when he goes to the bathroom. His lips are angry looking and chapped and he won't let me put Carmex on them. Maybe I will sneaks some on sometime when he is asleep? There is, or was, a large amount of stool in there. There might be some getting out around it, but it's probably not enough. He will certainly require some other intervention this week. It could be an endoscopy, or another gastrografin enema (with scan?), or something more drastic.

I hate things being so out of control. I hate not knowing what the outcome is going to be. I want to make him better. I want to take it away from him and give it to myself.

I want this to be over. I want my boy home with me and healthy, back in school. That reminds me, his annual IEP was scheduled for tomorrow and his teacher has canceled it. There weren't any surprises in store anyway; we'll just meet next month. That's one less thing on my plate.

Guess that is it for now... Goodnight and thank you all for keeping Ricky in your thoughts.