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!
Friday, October 16, 2009
Thursday, October 1, 2009
Update!
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. :)
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. :)
Friday, September 11, 2009
Update on Ricky! (long overdue!)
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!
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!
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.
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