A while back I picked today to volunteer in Ricky's pre-K class because Thursdays are my day off and this week is F week (starting at the beginning of the school year they do a letter per week), and I wanted to bring my french fry cutter and make french fries with the kids.
Rick took the boys to school because I had my polygraph for the dispatcher job at 8:30. I think it went well.
Right when I got there at around 10:30 they were slicing up FRUIT for fruit salad (it being F week and all). Ricky didn't get to do it because he was really, really naughty yesterday -- kicking and screaming at the teacher and writing on the wall at naptime. So I got him and a few other kids involved in slicing up the potatoes with the special safe french fry slicer (really easy, fat free fry recipe by the way, I'll pass it on sometime) and sprinkling the salt and garlic powder.
Two little girls carried one of the cookie sheets and a little boy carried the other cookie sheet into the kitchen where I put them in the preheated oven.
Then I hung out with Ricky's class till it stopped raining and we all went outside. It was kind of muddy and the 2's (including Andy), 3's, and pre-K were all wound up from being inside all that time, so it was sort of an emotional recess. Lots of crying and one little boy got so upset he threw up on the Director. The school isn't usually like that. The teachers were glad to have me there to help. I mediated a few disputes and even helped a little girl find her hair clip. I have to admit I don't know much about little girls but I did o.k. with that.
Andy found me outside and decided to sit on my lap for a lot of the time and play with my hair and blow zurbits on my cheek. Very cute and cuddly. Ricky showed me how to make a fort with the egg crates and stomped in puddles with his buddies.
We went inside for lunch and the pre-K had some french fries with their lunch. Ricky and his little friends (and some of the girls) all wanted to sit by me which was really cute. They all loved the french fries by the way. Well, almost all. One little boy politely refused.
Then it was naptime, and I helped a bunch of the kids set up their mats with their sheets and blankets, and rubbed Ricky's back and held his hand for a little while. He doesn't nap, but rests instead. I told him I'd be back to get him later in the afternoon.
I went away from there feeling really fulfilled and contented. And really having an appreciation for what Ricky does all day and being happy that he was so glad and excited to have me there. I couldn't do it every day like those teachers do, but I really want to go back and volunteer again. In two weeks I am going to volunteer in Andy's class. And I'm going to make it a point to do this once in a while from now on, maybe on a regular basis like once or twice a month. I love spending time with my boys no matter what we are doing. :)
Just wanted to share. :)
Thursday, October 26, 2000
Sunday, October 1, 2000
Ricky mini-update
Well, as most of you know, we've been having a hard time with Ricky for a while. Around the end of last year he started being very angry and spiteful and aggressive. When he was in the hospital in February they actually gave him a diagnosis: adjustment disorder with emotional features. Whatever that means. I didn't find out about this till last week.
You might recall that a couple of months ago I took him to a psychologist who decided without even seeing him that he had ADHD, which I basically rejected as being beside the point -- even if he does have it, that's not what's bugging him at the moment.
Anyway, the past couple of months he's been even more aggressive at school, doing things like attacking kids at preschool (including his brother -- he threw shovelsful of sand in Andy's face last week) for no reason. And talking about killing people, chopping off their heads, and things like that. The teachers have been working with him but a few weeks ago I decided he needed more help.
We think that a lot of Ricky's anxiety and acting out might be caused by his health being worse this year. (Just a refresher, he was in the hospital for a tuneup in February and in for sinus surgery in March.)
Our insurance does cover psychological stuff with the exception of ADHD. They mainly cover "disorders," which it sounds like he has. We finally found out what to do to get him evaluated (took three weeks for the pediatrician to get around to calling us back, but she called me herself and apologized so I am not too mad... LOL). All we had to do was call the behavioral health insurance division and ask for help. They told me that he can go to Stanford -- hooray! Which is where he has two of his other specialists. Early this coming week the folks at Psychiatry Intake at Stanford are supposed to call me to make an appointment for a full evaluation. They probably can't see him till November. But it will be worth it.
We're gonna help this little guy. He is so wonderful and so worth it. Thanks for listening...
You might recall that a couple of months ago I took him to a psychologist who decided without even seeing him that he had ADHD, which I basically rejected as being beside the point -- even if he does have it, that's not what's bugging him at the moment.
Anyway, the past couple of months he's been even more aggressive at school, doing things like attacking kids at preschool (including his brother -- he threw shovelsful of sand in Andy's face last week) for no reason. And talking about killing people, chopping off their heads, and things like that. The teachers have been working with him but a few weeks ago I decided he needed more help.
We think that a lot of Ricky's anxiety and acting out might be caused by his health being worse this year. (Just a refresher, he was in the hospital for a tuneup in February and in for sinus surgery in March.)
Our insurance does cover psychological stuff with the exception of ADHD. They mainly cover "disorders," which it sounds like he has. We finally found out what to do to get him evaluated (took three weeks for the pediatrician to get around to calling us back, but she called me herself and apologized so I am not too mad... LOL). All we had to do was call the behavioral health insurance division and ask for help. They told me that he can go to Stanford -- hooray! Which is where he has two of his other specialists. Early this coming week the folks at Psychiatry Intake at Stanford are supposed to call me to make an appointment for a full evaluation. They probably can't see him till November. But it will be worth it.
We're gonna help this little guy. He is so wonderful and so worth it. Thanks for listening...
Tuesday, August 22, 2000
Sympathy for a worn out mom?
Ricky has had a chest infection for over three weeks now. Below is my latest update to one of the CF lists that I wanted to share with you guys cause I'm more likely to get sympathy from you. I am so worn out.
The Ricky saga continues. He's been on Zithromax since Sunday and has had four poop accidents since then. I know the very strong dose of Zithromax is wreaking havoc with his digestive system. I offer sympathy and repeatedly change his bed sheets (time to do more laundry). The acidophilus isn't doing him a bit of good. Is there any anti-diarrheal that will help him and is okay to give to a little kid or should I just let nature take its course?
It would maybe be worth it if the Zithromax was doing any good. He's being really good about taking it and doing extra treatments + inhaled Tobi every day and yet he still has this horrible cough that isn't bringing anything up but just getting worse. It feels like an uphill battle I am fighting alone because Dad (from whom I am separating, but he still lives here) just doesn't do Ricky's treatments when I'm not around, and then lies about it.
And here's the really fun thing. Every 6 months or so, Ricky's gastroenterologist does a large battery of blood tests. This one showed high IGE levels (this is a measurement of allergy sensitivity apparently) which in pwCF can mean that a person is growing aspergillus (fungus) in their lungs or elsewhere. I know what aspergillus is and everything. This same result came up in February when Ricky was in the hospital and nothing was done, no testing or anything. I wonder when they are going to take it seriously.
Then again maybe he just has allergies like his mom. And not aspergillus. Wouldn't surprise me.
Once again his throat culture showed zippo and I'm beginning to think they might finally take it seriously and do a bronchoscopy on him so we can figure out what we're battling.
This is the first time I've really felt overwhelmed. I feel like Ricky is depending on me and only me to fight this fight for him and I'm letting him down because it's totally overwhelming me. I feel like crying at any moment. I am afraid of him going in the hospital and yet afraid of him being at home and getting sicker. Last hospitalization I tried to get them to send us home with a PICC line (March moms and Shane, this is a semi-permanent IV line) and IV antibiotics and they didn't even think we could handle it, which I found incredibly insulting. They wouldn't even put in a PICC line and so once he was feeling better (3-4 days) he popped out his first IV and proceeded through 3-4 others. So I don't know what is worse, aggravating here at home or having him in the hospital.
Some sympathy, advice, doctor bashing... anything would be greatly appreciated at this point. I can't believe the guilt, anger, disappointment, frustration, discouragement I'm going through.
The Ricky saga continues. He's been on Zithromax since Sunday and has had four poop accidents since then. I know the very strong dose of Zithromax is wreaking havoc with his digestive system. I offer sympathy and repeatedly change his bed sheets (time to do more laundry). The acidophilus isn't doing him a bit of good. Is there any anti-diarrheal that will help him and is okay to give to a little kid or should I just let nature take its course?
It would maybe be worth it if the Zithromax was doing any good. He's being really good about taking it and doing extra treatments + inhaled Tobi every day and yet he still has this horrible cough that isn't bringing anything up but just getting worse. It feels like an uphill battle I am fighting alone because Dad (from whom I am separating, but he still lives here) just doesn't do Ricky's treatments when I'm not around, and then lies about it.
And here's the really fun thing. Every 6 months or so, Ricky's gastroenterologist does a large battery of blood tests. This one showed high IGE levels (this is a measurement of allergy sensitivity apparently) which in pwCF can mean that a person is growing aspergillus (fungus) in their lungs or elsewhere. I know what aspergillus is and everything. This same result came up in February when Ricky was in the hospital and nothing was done, no testing or anything. I wonder when they are going to take it seriously.
Then again maybe he just has allergies like his mom. And not aspergillus. Wouldn't surprise me.
Once again his throat culture showed zippo and I'm beginning to think they might finally take it seriously and do a bronchoscopy on him so we can figure out what we're battling.
This is the first time I've really felt overwhelmed. I feel like Ricky is depending on me and only me to fight this fight for him and I'm letting him down because it's totally overwhelming me. I feel like crying at any moment. I am afraid of him going in the hospital and yet afraid of him being at home and getting sicker. Last hospitalization I tried to get them to send us home with a PICC line (March moms and Shane, this is a semi-permanent IV line) and IV antibiotics and they didn't even think we could handle it, which I found incredibly insulting. They wouldn't even put in a PICC line and so once he was feeling better (3-4 days) he popped out his first IV and proceeded through 3-4 others. So I don't know what is worse, aggravating here at home or having him in the hospital.
Some sympathy, advice, doctor bashing... anything would be greatly appreciated at this point. I can't believe the guilt, anger, disappointment, frustration, discouragement I'm going through.
Monday, June 5, 2000
another update
Ricky is now 4-1/2 and has topped 42" in height and 36 lb. for weight (both 50th percentile). His speech difficulties continue to be a bit of a problem and if he still has these problems in the fall, I'm going to see about getting him into speech therapy at the local school district. I was going to do it sooner but we ran out of time for this school year.
He's interested in activities that allow him to manipulate objects with his hands, and he's quite adept at it. He is just starting to recognize numbers and letters, and school has really helped him with this. My example of this is the fact that they do one letter each week and following that week he'll find that letter everywhere. It's a hurdle we've finally cleared and it sure is great!
Ricky has been hit very hard with the death of my father 2 weeks ago today. He has exhibited violent and acting-out type behavior which we think is understandable considering how close they were. Ricky has an appointment with the pediatrician this Thursday and I'm going to ask her what we should say or do.
Ricky's been doing pretty well since his sinus surgery in March, but I'm still somewhat disappointed. He's been sick off and on and he'll go on antibiotics and be fine for a while and then be sick again as soon as he goes off of them. I know the doctor mentioned doing surgery again after a year or so but to me it looks like it might be sooner. I sure hope not. Right now he, Andy and I are all battling a sinus infection which is nothing new for any of us!
He's interested in activities that allow him to manipulate objects with his hands, and he's quite adept at it. He is just starting to recognize numbers and letters, and school has really helped him with this. My example of this is the fact that they do one letter each week and following that week he'll find that letter everywhere. It's a hurdle we've finally cleared and it sure is great!
Ricky has been hit very hard with the death of my father 2 weeks ago today. He has exhibited violent and acting-out type behavior which we think is understandable considering how close they were. Ricky has an appointment with the pediatrician this Thursday and I'm going to ask her what we should say or do.
Ricky's been doing pretty well since his sinus surgery in March, but I'm still somewhat disappointed. He's been sick off and on and he'll go on antibiotics and be fine for a while and then be sick again as soon as he goes off of them. I know the doctor mentioned doing surgery again after a year or so but to me it looks like it might be sooner. I sure hope not. Right now he, Andy and I are all battling a sinus infection which is nothing new for any of us!
Friday, April 21, 2000
email I sent to the CF email list
Catching up on email after a day off of work (wow, lots of digests) I saw all the posts about "Alex: the Life of a Child".
I never saw this movie till it was on TV a couple of years ago; I taped it at that time and still have the tape. However, when I was about 12 I read the book because it sounded interesting and I was in one of those pre-teen "morbid" stages where I was reading books about people dying. Little did I know that CF and I would become close acquaintances later on in life!
I have to say that I agree that things are VERY different than they were when Alex DeFord lived and died. And thank goodness. I have to disagree with Laura who said that the life expectancy has not changed since her son Graham was born. I know that can't possibly be true because the life expectancy has increased by 2 years just in the four years that my Ricky has been alive.
But that's not really what I'm writing about.
When Ricky was first diagnosed, he was a very sick premie in the NICU having already had one surgery and scores of tests. I was devastated. I cried my eyes out whenever anyone asked me how my baby was doing. I read about CF on CF-Web and in the antiquated books at the library (since I started working there in '96 you can bet that they've updated their collection) and all I saw were all these bad things. Of course I was remembering "Alex" and the other book about CF that I'd read, Belva Plain's "Daybreak" where the CF patients died in their childhood. I was totally devastated. My husband was in the classic "denial" mode.
Gradually we both came to see that there was, and is, much promise in CF research and that every patient is different. From that fear of the unknown that we grew to know our son and what his baseline was. We learned while he was still in the hospital to give him his meds, do his treatments, and treat him like a regular kid. Eventually he came home and we started going to support groups and conferences, and I became active on Cystic-L. We were and are a regular family with a regular kid who just happens to have CF (and now he just happens to have a healthy little brother).
I have to believe that there is hope, that we are close to a cure or a treatment for cystic fibrosis. How can I not believe? I admit I am not optimistic all the time. Sometimes (like when we waited for 4 hours yesterday for Ricky to have his sinus endoscopy) it just seems impossible. But we persevere and we take it day to day and that's what keeps us sane.
I hope this made sense. Sometimes I just have to say what I have to say.
I never saw this movie till it was on TV a couple of years ago; I taped it at that time and still have the tape. However, when I was about 12 I read the book because it sounded interesting and I was in one of those pre-teen "morbid" stages where I was reading books about people dying. Little did I know that CF and I would become close acquaintances later on in life!
I have to say that I agree that things are VERY different than they were when Alex DeFord lived and died. And thank goodness. I have to disagree with Laura who said that the life expectancy has not changed since her son Graham was born. I know that can't possibly be true because the life expectancy has increased by 2 years just in the four years that my Ricky has been alive.
But that's not really what I'm writing about.
When Ricky was first diagnosed, he was a very sick premie in the NICU having already had one surgery and scores of tests. I was devastated. I cried my eyes out whenever anyone asked me how my baby was doing. I read about CF on CF-Web and in the antiquated books at the library (since I started working there in '96 you can bet that they've updated their collection) and all I saw were all these bad things. Of course I was remembering "Alex" and the other book about CF that I'd read, Belva Plain's "Daybreak" where the CF patients died in their childhood. I was totally devastated. My husband was in the classic "denial" mode.
Gradually we both came to see that there was, and is, much promise in CF research and that every patient is different. From that fear of the unknown that we grew to know our son and what his baseline was. We learned while he was still in the hospital to give him his meds, do his treatments, and treat him like a regular kid. Eventually he came home and we started going to support groups and conferences, and I became active on Cystic-L. We were and are a regular family with a regular kid who just happens to have CF (and now he just happens to have a healthy little brother).
I have to believe that there is hope, that we are close to a cure or a treatment for cystic fibrosis. How can I not believe? I admit I am not optimistic all the time. Sometimes (like when we waited for 4 hours yesterday for Ricky to have his sinus endoscopy) it just seems impossible. But we persevere and we take it day to day and that's what keeps us sane.
I hope this made sense. Sometimes I just have to say what I have to say.
Tuesday, April 11, 2000
Update
This week we got Ricky's pre-K "IEP". He has shown progress in his fine motor skills and major progress in his gross motor skills. He has also started talking up a storm! The teacher loves the little chats they have at playtime. Finally, the IEP stated that he is probably not emotionally ready for kindergarten. They're pretty sure that, given his attention span, he'd have a hard time staying interested in group activities. He will be 5 on November 26 so it was touchy anyway, but that pretty much settles it.
Ricky is going to be starting up speech therapy again most likely, probably through the local school district. The pediatrician had so much trouble understanding him at his 4 yo appointment that she recommended he start (he had it from 2 to 3 and then we were told he didn't need it anymore, which I knew was BS). I want to get him assessed and enrolled (the papers are the same ones they use for kindergarten, so I guess it's a little "practice") before the school year is out. It's going to be difficult to do but I'd like to be ready to start in fresh for speech therapy in the fall.
At the 4 year old appointment the pediatrician noticed that he has a lazy eye... Something the ENT doc noticed previously and the pulmonologist noticed later on. No one had EVER noticed it before so it's got to be a new thing. Something else to worry about! So we are going to get that taken care of, too. He will see an ompthamologist in May.
Ricky was hospitalized for 11 days for a CF tuneup in February and had sinus surgery in March. Since his sinus surgery, his whole attitude has changed. While we still have what I call "whiney moments", he seems so much happier, content, and BOY DOES HE HAVE AN APPETITE! It's great! What a change I see in him, those sinuses were probably giving him so much pain and discomfort and now he is doing so much better. Any doubts I had about the surgery are SO far gone!
Ricky is going to be starting up speech therapy again most likely, probably through the local school district. The pediatrician had so much trouble understanding him at his 4 yo appointment that she recommended he start (he had it from 2 to 3 and then we were told he didn't need it anymore, which I knew was BS). I want to get him assessed and enrolled (the papers are the same ones they use for kindergarten, so I guess it's a little "practice") before the school year is out. It's going to be difficult to do but I'd like to be ready to start in fresh for speech therapy in the fall.
At the 4 year old appointment the pediatrician noticed that he has a lazy eye... Something the ENT doc noticed previously and the pulmonologist noticed later on. No one had EVER noticed it before so it's got to be a new thing. Something else to worry about! So we are going to get that taken care of, too. He will see an ompthamologist in May.
Ricky was hospitalized for 11 days for a CF tuneup in February and had sinus surgery in March. Since his sinus surgery, his whole attitude has changed. While we still have what I call "whiney moments", he seems so much happier, content, and BOY DOES HE HAVE AN APPETITE! It's great! What a change I see in him, those sinuses were probably giving him so much pain and discomfort and now he is doing so much better. Any doubts I had about the surgery are SO far gone!
Wednesday, March 22, 2000
Ricky is home! (long update)
Okay, here is the total lowdown.
We arrived at the hospital Day Surgery department on Monday at 10:45 for the anticipated 12:15 surgery time. Ricky got into hospital jammies and bracelets and got his temperature taken. A lady from Play Therapy came to talk to Ricky and she showed him pictures of a little girl going to get surgery, and told him what was going to happen.
So me, Rick, my mom, and Rick's mom hung around and waited and waited and waited with Ricky. And waited and waited and waited. Ricky was very cranky, and hungry and thirsty, not having been able to eat or drink after midnight the night before.
Finally around 1 the anesthesiologist came and we talked about Ricky a bit, and learned what to expect. Then the nurse came and gave him vercid which is this fun stuff that within 20 minutes or so made him totally stoned out of his mind. He was lolling his head around and laughing and acting dizzy. I carried him and Rick came along and we followed the anesthesiologist to the door of the hallway leading to the operating theatre. I handed Ricky over and Rick and I waved to him as he was carried away. Ricky looked over the anesthesiologist's shoulder, lolling his head and waving giddily. We couldn't stop laughing.
So then the four of us went to have lunch in the main hospital and hung around there for almost two hours. Still no page on the parent pager. So we went back to the waiting room, and waited some more. Finally I went and asked the receptionist what was going on. She phoned Dr. Messner in the operating room and found out that everything went fine and she'd soon be out to see us. So I went and sat down.
Dr. Messner came and talked to us. She said that everything went great and she didn't even get close to his eyes and brain (which is a good thing). There was a ton of gunk in his ethmoid and maxillary sinuses, lots of polyps (news to us) and old goo and stuff to clean out. Poor little guy. We asked lots of questions and she was really in her element, answering all the questions about the surgery. It was amazing to see how different she was after surgery from at a clinic visit.
By this time Rick had had to leave to go get Andy from day care (it was about 4) so my mom, MIL and I went to see Ricky in recovery. He'd just woken up and was very combatant, pulling at his IV and nasal catheters. The nurses had to give him two doses of morphine to calm him down and then he was OUT. He fell asleep so fast he was still holding the popsicle they gave him, and as it drooped out of his hand I caught it with a paper cup.
My mom and MIL called their husbands to let them know how things went, and after a long while we got transported to a room on 3South. We finally got there about 6:30 and I ran to get some dinner before the dining room closed.
We had a rough night. He really wasn't feeling well. He watched a lot of videos and finally fell asleep around 1:30 morning after his first sinus flush. I had fallen asleep around 10 only to be woken by Ricky and the nurse at 1 when she came in to flush his sinus catheters. That was a true nightmare and so I'll spare you the details.
Tuesday morning Ricky was very out of sorts. Kind of staring into space. It was very sad. But throughout the day he improved (despite getting sinus flushes three times in the day) and by the time Rick brought a Tarzan video in the evening, the worst was over. Ricky was wiggling and thrashing in his bed and raring to go, fresh from several nice long naps. At lunchtime he had finally eaten for the first time... Two chicken nuggets, but better than nothing at all! Also, he drank lots of chocolate milk... His favorite drink!
The IV remained in, and Ricky finally fell asleep at around 11 thanks to the "mood" channel on the TV which features nature scenes and classical music. About 4:30 a.m. he woke up wet, having wet his bed in deep sleep, and while the nursing assistant was changing his bed we discovered that the left sinus catheter had fallen out. Upon further examination we discovered that the right one was out too. They had been hoping those would stay in for about 4 days but the nurse wasn't surprised they were out already. No more sinus flushes, hooray!
We got discharged today bright and early at 9:30 a.m. (Ricky was actually still asleep!) Fastest discharge ever, and boy were we ready! We were delayed a bit because the hospital was showing Toy Story 2 on their movie channel (not even on video yet, what a treat!) but Ricky got tired of it and we were OUT OF THERE!!!
Ever since we got home he's been playing and so happy. We're having some great time together, just Ricky and me. He's been highly into creative stuff... He did Play-Doh, watercolors, and now he is doing fingerpaint. We are so glad to be home.
Thanks to all who called, sent cards, prayed, and just thought about us. You guys are great!
We arrived at the hospital Day Surgery department on Monday at 10:45 for the anticipated 12:15 surgery time. Ricky got into hospital jammies and bracelets and got his temperature taken. A lady from Play Therapy came to talk to Ricky and she showed him pictures of a little girl going to get surgery, and told him what was going to happen.
So me, Rick, my mom, and Rick's mom hung around and waited and waited and waited with Ricky. And waited and waited and waited. Ricky was very cranky, and hungry and thirsty, not having been able to eat or drink after midnight the night before.
Finally around 1 the anesthesiologist came and we talked about Ricky a bit, and learned what to expect. Then the nurse came and gave him vercid which is this fun stuff that within 20 minutes or so made him totally stoned out of his mind. He was lolling his head around and laughing and acting dizzy. I carried him and Rick came along and we followed the anesthesiologist to the door of the hallway leading to the operating theatre. I handed Ricky over and Rick and I waved to him as he was carried away. Ricky looked over the anesthesiologist's shoulder, lolling his head and waving giddily. We couldn't stop laughing.
So then the four of us went to have lunch in the main hospital and hung around there for almost two hours. Still no page on the parent pager. So we went back to the waiting room, and waited some more. Finally I went and asked the receptionist what was going on. She phoned Dr. Messner in the operating room and found out that everything went fine and she'd soon be out to see us. So I went and sat down.
Dr. Messner came and talked to us. She said that everything went great and she didn't even get close to his eyes and brain (which is a good thing). There was a ton of gunk in his ethmoid and maxillary sinuses, lots of polyps (news to us) and old goo and stuff to clean out. Poor little guy. We asked lots of questions and she was really in her element, answering all the questions about the surgery. It was amazing to see how different she was after surgery from at a clinic visit.
By this time Rick had had to leave to go get Andy from day care (it was about 4) so my mom, MIL and I went to see Ricky in recovery. He'd just woken up and was very combatant, pulling at his IV and nasal catheters. The nurses had to give him two doses of morphine to calm him down and then he was OUT. He fell asleep so fast he was still holding the popsicle they gave him, and as it drooped out of his hand I caught it with a paper cup.
My mom and MIL called their husbands to let them know how things went, and after a long while we got transported to a room on 3South. We finally got there about 6:30 and I ran to get some dinner before the dining room closed.
We had a rough night. He really wasn't feeling well. He watched a lot of videos and finally fell asleep around 1:30 morning after his first sinus flush. I had fallen asleep around 10 only to be woken by Ricky and the nurse at 1 when she came in to flush his sinus catheters. That was a true nightmare and so I'll spare you the details.
Tuesday morning Ricky was very out of sorts. Kind of staring into space. It was very sad. But throughout the day he improved (despite getting sinus flushes three times in the day) and by the time Rick brought a Tarzan video in the evening, the worst was over. Ricky was wiggling and thrashing in his bed and raring to go, fresh from several nice long naps. At lunchtime he had finally eaten for the first time... Two chicken nuggets, but better than nothing at all! Also, he drank lots of chocolate milk... His favorite drink!
The IV remained in, and Ricky finally fell asleep at around 11 thanks to the "mood" channel on the TV which features nature scenes and classical music. About 4:30 a.m. he woke up wet, having wet his bed in deep sleep, and while the nursing assistant was changing his bed we discovered that the left sinus catheter had fallen out. Upon further examination we discovered that the right one was out too. They had been hoping those would stay in for about 4 days but the nurse wasn't surprised they were out already. No more sinus flushes, hooray!
We got discharged today bright and early at 9:30 a.m. (Ricky was actually still asleep!) Fastest discharge ever, and boy were we ready! We were delayed a bit because the hospital was showing Toy Story 2 on their movie channel (not even on video yet, what a treat!) but Ricky got tired of it and we were OUT OF THERE!!!
Ever since we got home he's been playing and so happy. We're having some great time together, just Ricky and me. He's been highly into creative stuff... He did Play-Doh, watercolors, and now he is doing fingerpaint. We are so glad to be home.
Thanks to all who called, sent cards, prayed, and just thought about us. You guys are great!
Friday, March 17, 2000
Update!
The boys both saw their pediatrician yesterday for a well-baby appointment. The best I remember (bad Mom, I forgot to write it down), Ricky is 42.5" and 38 lb., and Andy is 32.5" and 26 lb. They both plot out to 25-50%ile for weight. Ricky is 75%ile for height and Andy is 25-50%ile for height.
Dr. Lee (the pedi) said that Ricky definitely still has a speech delay, and she wants us to pursue this with the school district (who would be responsible for doing speech therapy at this point). Andy definitely still has eczema, and obliged Dr. Lee by having a nice big patch on his arm to show off to her at the appointment. We're going to keep applying lotion unless it gets worse, in which case she'd prescribe some sort of cortisone cream to put on it.
After that it was off to the ENT doctor for Ricky's pre-op appointment. The visit was a large nightmare thanks to appointment delays and both boys being very tired. To top it all off the nurse practitioner noticed that Ricky has a lazy eye (his left) when he is tired. Yet another thing to worry about... But I refuse to worry about it until after the surgery!
Surgery is all set for Monday at either 1:15 or 12:15 p.m., depending on who you talk to (hopefully we'll get it straight before then). He can't eat or drink any time after midnight the night before. He can drink clear liquids and eat Jell-O for three hours before. (Now THAT should be interesting) We're getting there 1-1/2 hours before the surgery.
The nurse practitioner (surgeon herself didn't make an appearance) felt it necessary to tell me that complications can include vision loss and leakage of brain fluid because of the proximities to the sinuses. So now there is something for me to feel guilty about if this surgery goes wrong.
Please think about us now as we wait for Ricky's surgery to be over! He will be in the hospital for three nights.
Dr. Lee (the pedi) said that Ricky definitely still has a speech delay, and she wants us to pursue this with the school district (who would be responsible for doing speech therapy at this point). Andy definitely still has eczema, and obliged Dr. Lee by having a nice big patch on his arm to show off to her at the appointment. We're going to keep applying lotion unless it gets worse, in which case she'd prescribe some sort of cortisone cream to put on it.
After that it was off to the ENT doctor for Ricky's pre-op appointment. The visit was a large nightmare thanks to appointment delays and both boys being very tired. To top it all off the nurse practitioner noticed that Ricky has a lazy eye (his left) when he is tired. Yet another thing to worry about... But I refuse to worry about it until after the surgery!
Surgery is all set for Monday at either 1:15 or 12:15 p.m., depending on who you talk to (hopefully we'll get it straight before then). He can't eat or drink any time after midnight the night before. He can drink clear liquids and eat Jell-O for three hours before. (Now THAT should be interesting) We're getting there 1-1/2 hours before the surgery.
The nurse practitioner (surgeon herself didn't make an appearance) felt it necessary to tell me that complications can include vision loss and leakage of brain fluid because of the proximities to the sinuses. So now there is something for me to feel guilty about if this surgery goes wrong.
Please think about us now as we wait for Ricky's surgery to be over! He will be in the hospital for three nights.
Thursday, March 2, 2000
Sinus surgery scheduled (again)
Well, we have a fourth date now for Ricky's sinus surgery. I wish they would make up their minds. THis sound like it's for real.
Surgery on Monday, March 20, and staying overnight for three nights before coming home. Pre-op appointment the Thursday before. Andy's birthday party is on Saturday the 18th (his actual birthday) which works out okay still.
Surgery on Monday, March 20, and staying overnight for three nights before coming home. Pre-op appointment the Thursday before. Andy's birthday party is on Saturday the 18th (his actual birthday) which works out okay still.
Tuesday, February 29, 2000
Sinus surgery scheduled
Got word today that Ricky is scheduled for sinus surgery a week from this Friday... March 10! Wow! I guess we had better start getting ready.
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