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!
Friday, September 11, 2009
Saturday, August 15, 2009
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.
You can see it here.
Tuesday, August 4, 2009
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!
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!
Friday, July 31, 2009
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. :)
Thursday, July 30, 2009
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...
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...
Monday, July 27, 2009
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!
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!
Sunday, July 26, 2009
yesterday was rough
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.
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.
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.
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