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.
Sunday, July 26, 2009
Saturday, July 25, 2009
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. :(
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. :(
Thursday, July 23, 2009
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.
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.
Tuesday, July 21, 2009
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.
Saturday, July 18, 2009
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!
Thursday, July 2, 2009
long-overdue update
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...
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...
Thursday, June 18, 2009
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!)
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!)
Friday, June 12, 2009
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!
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!
Tuesday, June 9, 2009
potpourri
Ricky, my soccer hero
Originally uploaded by Beckerbuns
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.
Wednesday, June 3, 2009
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.
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.
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