Procedure today

When I got to the hospital this morning, the nurse told me that the doctors had finally scheduled the gastrographin enema scan. Basically this means they put this enema of gastrographin contrast in and scan him with the fluoroscope to find where the blockage is. The side effect of this test generally is that the person poops. Ricky's blockage was in the lower bowel, not even as far as the transverse (across) bowel. It was blocking things so much that it forced the enema catheter out three times.

Even with the versed sedation, Ricky had a really hard time even letting them insert the thing the first time. He wanted me to do it. Well obviously they needed someone with a bit more education and experience! But they all pretended that I was doing it and he let them do the test. The radiologist was unable to budge the blockage, but he theorized that regular enemas or soapy water enemas could get it out.

The whole procedure was excruciating to watch. I felt so bad for him. It must have been scary and humiliating all at once. He was so brave and I am so proud of him.

Not long after Ricky got back to the room, he did go to the bathroom and go a LOT but we weren't sure if the blockage came out. So it's a wait and see thing now, probably with more enemas. After he went, though, his belly looked a lot less distended already and he was breathing easier. Yay! He is still on the oxygen but if he keeps pooping, he'll be able to get off of it very soon I'm sure.

So, keep your fingers crossed. :)

Nothing to report, really.

Just saying goodnight. Just got home. Still not a substantial amount of poop, despite one more gastrographin enema after midnight. His x-ray looked better, though, so maybe the earlier one was better than we thought.

I can't remember what I've posted already so please forgive me if I repeat. They gave him lots of Go-Lytely in the NG tube in the afternoon. His belly got distended and he was having a lot of pain which is why they decided to draw it back up the tube with the suction machine and try another enema, which took 4 hours to, err, get going.

Late in the evening he got a big headache accompanied by blurry vision. I suspect from lack of sleep. Misty and Andrew both dozed while I waited to do that last enema, and once Ricky was settled back in bed we went home.

He is still on oxygen by mask, and he still needs it. :( His belly looks awful. He can't sit upright, only lay at an angle or stand up, and when he stands up he is hunched over like a little old man. I have to help him to the bathroom and help him in and out of bed. I HATE THIS. I mean, I'd do anything for Ricky but I hate that he's going through this.

He got to have clear foods this afternoon. He had a little Jello and a little broth. He hates taking pills (or swallowing) with the NG tube in and finally did take his evening ones when he was allowed to do it with a cup of broth. The warm liquid feels better.

It is funny, when he was little I stayed with him there 24/7 when he had to be in. Now I don't really have to... Except when he's really sick I feel like I have to. I'm not working til he is over this bowel obstruction. My boss will understand; she has already made that clear.

Okay, must sleep. Goodnight.

Update

So, Ricky's pain got very bad early in the morning, 3ish? or so. The nurse gave him some Tylenol but he was vocalizing rather vehemently about his belly hurting. This kid has a rather high pain tolerance so it must have been pretty bad. I asked the nurse if he could have something stronger and she paged the resident, who had been in shortly before, and he said Ricky could have Toradol (sp?). She got it stat from the lab and gave it by IV. Ricky had instant relief, which was relief for Mom too, as it is so hard to watch your own child in pain.

The resident had said to me that he'd never seen this treatment regimen not work on someone. He was a bit flummoxed. Another resident came in early this morning and said they were going to do a gastrographin enema on Ricky.

I took that opportunity to get Misty and me home for a shower (me) and change of clothes (both of us). We went to my mom's to bring Easter stuff to Andrew and do an egg hunt. A little normalcy was nice. Then back to the hospital with both kids.

So a bit after we got back to the hospital, I gave Ricky the gastrographin enema. It was actually a combination of things that nearly always works. Dave (Misty's dad, a peds nurse) calls it "roto rooter". Ricky has been wanting me to do the enemas. Shy and not feeling well.

The enema produced some poop, but not really enough. Ricky was exhausted and proceeded to sleep for quite a while.

Our friend Rachel brought her kids to visit (and took Misty for a while so I could rest!). While they were gone, Ricky's O2 sats dropped into the 80s suddenly (it's usually high 90s, and has been low to mid 90s through this hospitalization). Through this whole poop thing, at least his lungs were doing better. Now the nurse said he sounded bad on the left. The RT came in to sit him up and do his breathing treatment (no easy task when someone is asleep). He was still satting low so he had to go onto oxygen. He wouldn't tolerate the nasal cannula because he still has the NG tube in (he's getting a lot of Go-Lytely again) so he had to go with the mask, which has minimum flow of 6L. Oh well, one battle at a time.

So now we are waiting for poop. Hey, why have lofty goals? :)

Bad day

Six enemas (five Fleets and one Mucomyst -- nasty stuff), an NG tube (Ricky did great with the placement with the help of Versed), and 1000ml of GoLytely later, Ricky has still not pooped more than just a tiny bit post-first-few-enemas.

I'm at the hospital. Ricky is so exhausted and crappy feeling that he'll only let me do the enemas. Somehow I ended up with Misty with me. She's sacked out on the cot and I'm in a recliner. I dropped Andrew off at my mom's this morning and he's still there. I am feeling incredibly guilty, anxious, and lonely.

I don't know what's going to happen next.

I hate uncertainty.

I don't remember whether I ate today.

Ow.

Check out that belly! I found out today that Ricky has been continuing to refuse his Miralax and hasn't pooped in at least 3 days. The nurse and psychiatrist first called me wen I was on my way up there because Ricky was refusing to let the nurse change his port needle. I kept trying to speak with Ricky on the phone and he kept hanging up on me! SIIIIGH.

Dave had gotten Misty from the house for his weekend, so it was just Andrew and me, which was good. When I got there I put the numbing cream on Ricky's port area, gloved up, and with the nurse's assistance I accessed his port. Just like that.

But the emergent issue was his belly. It was huuuuge. The pulmonologist was really irate about it even though I tried to explain that Ricky's bipolar disorder makes things more complicated.

So they said he needed to drink 2.5L (8 cups I think?) of the lovely Go-Lytely so he would poop. The whole evening he managed to get down 5 cups and it was nauseating him. He was in a LOT of pain too. He also had an enema and that was the only time he pooped -- and it wasn't very much.

When he had finally had enough and was curled up on the bathroom floor :( the nurse paged the resident. And continued to page him for two hours while he was admitting another patient. Sigh again. When he finally showed up he said that was enough Go-Lytely. I had my doubts but I was (am) exhausted so I settled Ricky in bed with a hot pad on his belly and Andrew and I left.

I sure hope the kid poops. I know for sure he won't be refusing his Miralax again. When he was writhing on the bathroom floor, he swore it!

Tomorrow we'll be having Easter preparations at my mom's and at the hospital. I haven't seen my mom since Tuesday, and I miss her!

Goodnight.

Just another update!

Today I heard from Ricky twice before I got up there... And while I was driving there I heard from a psychiatrist. The nurses or doctor on Ricky's unit had called her in to deal with Ricky not taking a medication -- specifically his Miralax.

When I got to the floor I asked the nurse to page the psychiatrist ans she sat down and spoke with me. I liked her a lot. By the time she got in to see Ricky earlier today, Ricky's nurse had made a contract with him to take his meds even if he didn't feel like it. The psychiatrist and I went over his history briefly and she promised to contact Dr. J, Ricky's psychiatrist (and her colleague) to update him and ask him to call me. So that was that.

Other than that, our visit was fairly mundane. I did manage to snag a tamale for Ricky (his favorite!) in the hospital cafeteria and he ate that in lieu of most of his dinner. He still hasn't been eating breakfast but today I got some specific input from him about what he wanted for tomorrow's breakfast so perhaps he'll eat that.

His sats were still right around 95 so he's still sick. His sinuses sound better but still a bit congested. The nurse didn't know whether there was going to be an ENT consult as was suggested upon admission. Maybe I can find out tomorrow.

That's it for now! Goodnight!

Ricky update for today

Ricky apparently slept much of the day, and missed school even though I signed the paper to enroll him.  Sigh.  Oh well.  He has been enjoying the used PS2 games that I picked up for him, and has already unlocked all of the characters, tracks, and vehicles on "Simpsons Road Rage".

Today we got there at about 3 and stayed until 8.  The other two kids and I got dinner in the cafeteria and ate with Ricky.  He had not eaten any of his breakfast or dinner and the trays were still sitting there in his room untouched.  :(  He really needs to STOP THAT.  At least he ate all of his dinner.  It was hummus and pita along with vegetable fried rice, and apple crisp for dessert.  Part of the problem with his other two meals is that they were NOT what he ordered at all.  Every day he has been having spring rolls and vegetable fried rice for lunch and today they gave him chicken legs and french fries.  I do wish we could figure out what he likes for breakfast (I thought I knew!) because he has not eaten breakfast any day since he has been in.

I remembered to ask the nurse how his O2 sats have been.  She said he had not been requiring O2 at night but other than that she wasn't sure.  I also asked about his sputum cultures, and she found out that so far they aren't growing anything but they have not been finalized yet.  I asked about his pulmonary function test from Monday and she gave me a copy of the report.  His FEV1 was 81%.  That's not great... I'm fairly certain he was at 86% in clinic two weeks ago.  So it's a good thing that he is in and getting taken care of.


(Click to enlarge.) Sorry about the poor picture quality! I took it with my Treo's camera. I'll scan it another day.
Okay, I am off to bed.  Stayed up way too late last night finishing a great book -- An Exact Replica of a Figment of My Imagination.

today's update

Ricky 4-7-09
Originally uploaded by Beckerbuns

Ricky called me several times today, wondering when I'd be up to visit him. :) I was at work, but only for four hours, and was anxious to get up to the hospital. I did have to go to an appointment after work, but as soon as that was done, Andrew and Misty and I made the drive and visited Ricky. I brought along a wireless controller for the PS2 in his room, which was nice so we weren't tripping over the cord constantly. I also brought a memory cartridge so he could save his game progress.

Healthwise, Ricky is doing okay. His sinuses finally seem a lot better. He has been on the IVs more than expected because he is not drinking (and therefore, peeing) enough. While I was there the nurse did tempt him to drink a whole carton of chocolate milk and a little container of lemonade with the promise that she would hep-lock him. It worked!

He is also not eating well. The other day, and I am not sure whether I mentioned this, I brought a bunch of his favorite foods to the hospital so that he would eat more. These included:

rice (to be eaten either with sugar and milk or with soy sauce)
blueberries
strawberries (to be dipped in sugar)
sliced apples (to have peanut butter spread on them)
vanilla yogurt (his favorite flavor)
salt and vinegar potato chips
licorice
Pringles in various flavors
a warehouse store-sized jar of giant dill pickles

So far he has eaten part of one pickle, about half of the rice (with sugar and milk), both cartons of blueberries (with the help of his siblings), all of the strawberries (again, with Andrew and Misty's help), and most of the salt and vinegar chips (yeah, we all helped with that!).

His eating is still not great. At home he eats pretty well except when he's sick. I hope we can correct this trend.

A couple of other things to note... On Sunday night the lab tech came in to take blood for a tobra level from Ricky after he was already asleep. Ricky was apparently very upset about this and pitched a fit. I guess the staff handled it because I didn't hear about it until Ricky told me the next day. He was mad that they didn't draw the blood out of his port. Well, the reason they can't do that is that the sample would be contaminated, since the tobra is infused through the port. A Monday morning test was done with a finger prick rather than a veinous draw and Ricky was a lot more amenable to that.

Yesterday Ricky also went for PFTs (pulmonary function tests). I don't know what the results were but I'm going to ask the nurse tomorrow, along with what else is going on with him and if anything has changed in his treatment/discharge plan.

Guess that's about it for now! I want to thank all of you who have sent Ricky the virtual-actual cards. The volunteer who brings them to him (several times a day due to the volume!) has remarked that Ricky gets more than any other patient. Keep it up! He is enjoying the attention! :) If you want to send one of these free cards, as a reminder you can do that here and his name is Richard Whicker. Tomorrow I think I'll post a list of all of the card-senders' first names so you know we got your cards! :) You guys rock!

Goodnight!

Ricky update for today

The other two kids and I visited Ricky this evening at dinnertime after a long day. Andrew and I had taken my mom to see her surgeon for follow-up. Ricky had been calling me all day asking when we were coming but when we got there, he was fast asleep. At 5pm!

We hung around and finally went and got some dinner. Ricky woke up at about 6:30 and played one of the PS2 games I'd gotten him (there's a console in each patient room). He also ate some dinner, including rice I'd made for him, with sugar and milk. :)

Overall he seemed to be feeling rotten and discouraged, but I hope our visit helped. It must stink to be cooped up. Tomorrow the hospital is having a spring (Easter) festival but CF patients are not allowed to leave their rooms so he's going to be out of luck. :(

The hospital school teacher stopped by today and left some literature. I'll need to call there and let them know that he's on spring break this week but that I'll bring in his work for next week.

Guess that's all for now!

Ricky's in the hospital

Ricky's just kickin' back, originally uploaded by Beckerbuns.

Yeah, so...

Ricky was out of school all week with the sinus infection. He was plugged up, lethargic, and generally miserable. I was getting concerned because usually Septra does the trick when Ricky is sick. So Friday afternoon I got in touch with the CF nurse and she offered to get him a bed. I told her I didn't know if he really needed one but that I thought he should be looked at. By that time we didn't have many options and I decided to take him to the ER.

We got to the emergency room at about 6:30pm. The nurse and doctor saw Ricky, and he got blood drawn from his port. Luckily there is a separate waiting room for pediatric patients, so Andrew and Misty waited in there with me. As other families came and went, Andrew played on a Mac and Misty played with toys. It was a little sad for Misty as she kept making friends and then they left again.

Eventually, Ricky's port was accessed for infusion and when I went to see what was going on, his nurse ran by (ER was busy by then) telling me that Ricky was going to be admitted. I talked to Ricky, who was being bolused fuids, and he said the doctor had told him he'd be in for a few days.

The ER doctor finally came in to see me well after midnight. It was really frustrating not to know what was going on. He informed me that Ricky was pretty dehydrated and also that he and Ricky's CF doc (who happened to be the pulmonologist on call this weekend) were also concerned about the sinus infection that wouldn't go away. So yes... Ricky was being admitted. It would take around 14 hours to rehydrate him and anyway, that had been interrupted in order to start him on antibiotics. They were going to have him on three different IV antibiotics. The doctor also mentioned that they were going to try to have ENT come consult about the sinuses, and maybe scope them.

There were no rooms, so we had to wait for a room. We finally got transferred up to a room at 2:30am. Misty and Andrew (and Ricky!) were still awake! When we got to the room, I grabbed some toddler hospital pajamas for Misty and put her in them. She was asleep, in my arms, by 2:45.

The nurse took all of the admitting information, and then the resident (who had been on for 22 hours) came and went over things with us. We finally left the hospital at... Wait for it... FOUR A.M. So, 9.5 hours from entering the ER to admittance.

Somehow I drove us home safely. Misty fell asleep in the car and Andrew was close. Got them to bed and crashed myself.

Visited Ricky once yesterday afternoon, after I got my mom home from the nursing home where she was recovering from her broken leg and subsequent surgery. Yes, yesterday was a long day. Anyway, he was doing fine. They got some sputum from him yesterday morning (and more today) so we should find out what bacteria he's growing. Hopefully just the same old ones; they're sensitive to many antibiotics.

Today one of his antibiotics was switched. He's now on three IV antibiotics: Septra, Tobramycin, and Ceftazidime. His oxygen saturation was a bit low in the emergency room, and whenever they take his vitals it's still a bit low. His sinuses are still bad. He's getting lots of treatments with a therapy vest... And it's a new one, a RespirTech vest. I WANT ONE. It is computerized. So much more advanced than what we have and I would bet that it is a lot more effective at airway clearance.

The resident that first morning told me that I should plan on a 12-14 day stay for Ricky. So he's there for the duration.

He hasn't been inpatient since February of last year. That's not bad really. Hopefully it all goes well.

By the way, if you'd like to send Ricky a card, you can go to this page to select and write one, and it'll be printed and brought to Ricky in his room. His full name for the card is Richard Whicker.