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.
Friday, April 21, 2000
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.
Sunday, February 20, 2000
We're going home! and more!
Hi all...
We finally talked to the pulmonlogist today and the one whose rotation it is, is OURS, Dr. Conrad, so we had a nice long conversation. She is discharging him tomorrow! Hooray! She said if want to have that sinus surgery on Thursday she could probably think of something to keep us in for, such as further play therapy (he's gotten rather aggressive lately though I think it's more from being cooped up in the hospital) or speech therapy (which I don't think he needs anymore).
I told her we'd rather have him go home and shoot for having the surgery a few weeks down the road so we could prepare him for it in the meantime, also have a lengthier conversation with the ENT and work him up for surgery more properly.
The pH probe results, he has no reflux. Zero. This is without meds! So she wants to take him off propulsid and prilosec (which we had recently switched to from zantac). Hallelujiah! She's going to be in touch with the gastroenterologist so things may change at some point but for now HOORAY less meds. As I am sure you know this comes as a welcome surprise.
He still hasn't cultured anything. Not even pseudomonas, which he last cultured two years ago. Dr. Conrad said they'll probably culture the mucus they get out of his nose to see if that's what's in there. I'm nearly positive it is. What else could muck things up so badly?
Ricky also has a large number of this particular kind of white blood cells in his blood which indicate a sensitivity to aspergillus though it hasn't shown up anywhere else. I guess this shouldn't come as a huge surprise to me either but wherever it is, it sure is hiding well!
Last night, when Ricky was asleep, Andy and I had an opportunity to visit our little friend (age 2) with CF, a little girl, who had the surgery on Friday. She's in a room down the hall. She was doing great, up and around, she just gets upset when the flush out her sinuses! She also had a g-tube put in at the same time. It looked a lot less scary than I expected. It was a great learning experience.
That's it for now... Hopefully next time I write we'll be home!
We finally talked to the pulmonlogist today and the one whose rotation it is, is OURS, Dr. Conrad, so we had a nice long conversation. She is discharging him tomorrow! Hooray! She said if want to have that sinus surgery on Thursday she could probably think of something to keep us in for, such as further play therapy (he's gotten rather aggressive lately though I think it's more from being cooped up in the hospital) or speech therapy (which I don't think he needs anymore).
I told her we'd rather have him go home and shoot for having the surgery a few weeks down the road so we could prepare him for it in the meantime, also have a lengthier conversation with the ENT and work him up for surgery more properly.
The pH probe results, he has no reflux. Zero. This is without meds! So she wants to take him off propulsid and prilosec (which we had recently switched to from zantac). Hallelujiah! She's going to be in touch with the gastroenterologist so things may change at some point but for now HOORAY less meds. As I am sure you know this comes as a welcome surprise.
He still hasn't cultured anything. Not even pseudomonas, which he last cultured two years ago. Dr. Conrad said they'll probably culture the mucus they get out of his nose to see if that's what's in there. I'm nearly positive it is. What else could muck things up so badly?
Ricky also has a large number of this particular kind of white blood cells in his blood which indicate a sensitivity to aspergillus though it hasn't shown up anywhere else. I guess this shouldn't come as a huge surprise to me either but wherever it is, it sure is hiding well!
Last night, when Ricky was asleep, Andy and I had an opportunity to visit our little friend (age 2) with CF, a little girl, who had the surgery on Friday. She's in a room down the hall. She was doing great, up and around, she just gets upset when the flush out her sinuses! She also had a g-tube put in at the same time. It looked a lot less scary than I expected. It was a great learning experience.
That's it for now... Hopefully next time I write we'll be home!
Saturday, February 19, 2000
Sinuses
We finally saw the ENT (otolaryngologist) yesterday. Our appointment got delayed and we got a big runaround, I guess she was in surgery most of the day. Ricky, meanwhile, was thrilled to be out of his room (we were seeing the doc in the clinic downstairs) and was going ape**** (the only word I feel is appropriate here) crazy, acting terrible and not listening to a word I said. So anyway, our appointment was at 2:15 and we finally saw Dr. Messner at 4:30.
Firstly she showed me the CT's. Ricky's ethmoid (between the eyes) and maxillary (under cheekbones) sinuses are completely clogged full of crud. So of course she recommends surgery. The catch, she is not available till Thursday and that means we'd have to stay inpatient till then. Or we can go home but then the insurance authorization takes 2-3 weeks. I am leery of styaing in the hospital any longer than we have to. She says he'd probably need another surgery in a year if we could not get him to do flushes in the meantime. Which I am nearly positive he would not do (I mean he would probably not be able to sit still for them).
I had done my research and asked her if it would be possible to just take out his adenoids (also enlarged) because that has been shown (admittedly, in non-CF patients) to help with sinusitis. She said we could certainly try to do that and see if it helps, then do the sinus surgery later. It was a bit of a frustrating conversation because I wasn't able to get a straight answer, like, what would she do if it were her kid. It was like "well, every kid is different..." and then another emergency came up and she just rushed out of the room in a big hurry without a goodbye or anything... I did get the nurse practitioner's number to call if I have questions or decide to do the surgery.
I think we will probably do the whole shebang. The literature says that adenoidectomies usually don't work on kids with CF for this kind of problem,
though no formal research has been done. I want to go home for a while though so I can schedule vacation time and such. One thing that encourages me is all the success stories I am hearing from so many of you.
It looks like we'll be going home on Monday. That's tentative but we'll keep everyone updated. We don't have the pH probe results yet but I hope to get them today. Talk to everyone later!
Firstly she showed me the CT's. Ricky's ethmoid (between the eyes) and maxillary (under cheekbones) sinuses are completely clogged full of crud. So of course she recommends surgery. The catch, she is not available till Thursday and that means we'd have to stay inpatient till then. Or we can go home but then the insurance authorization takes 2-3 weeks. I am leery of styaing in the hospital any longer than we have to. She says he'd probably need another surgery in a year if we could not get him to do flushes in the meantime. Which I am nearly positive he would not do (I mean he would probably not be able to sit still for them).
I had done my research and asked her if it would be possible to just take out his adenoids (also enlarged) because that has been shown (admittedly, in non-CF patients) to help with sinusitis. She said we could certainly try to do that and see if it helps, then do the sinus surgery later. It was a bit of a frustrating conversation because I wasn't able to get a straight answer, like, what would she do if it were her kid. It was like "well, every kid is different..." and then another emergency came up and she just rushed out of the room in a big hurry without a goodbye or anything... I did get the nurse practitioner's number to call if I have questions or decide to do the surgery.
I think we will probably do the whole shebang. The literature says that adenoidectomies usually don't work on kids with CF for this kind of problem,
though no formal research has been done. I want to go home for a while though so I can schedule vacation time and such. One thing that encourages me is all the success stories I am hearing from so many of you.
It looks like we'll be going home on Monday. That's tentative but we'll keep everyone updated. We don't have the pH probe results yet but I hope to get them today. Talk to everyone later!
Wednesday, February 16, 2000
More hospital
Good news... Ricky has gained a few pounds since being in the hospital which is always good in a kid like him.
Bad news... he's having sinus troubles (he has dark circles under his eyes from the sinus problems) and had a sinus CT the other day. We are seeing an ear-nose-throat doc (ENT) on Friday who will probably suggest surgery. The sinus problems probably caused all the problems he's having that put him in the hospital... post-nasal drip and all.
He's had lots of CF-related tests since being in the hospital and tomorrow is a pH probe to test for reflux. He hasn't had this test in a couple of years. He's also having a body mass test which involves pinching calipers. I'm sure he's going to love that.
Third IV put in last night. The first one lasted four days, which I tell you was a miracle, the second one lasted almost two days, and then the tape over it got wet in the tub (Ricky was being very careful but sometimes these things happen) and the IV slipped out a tiny bit causing the vein to clot. d0h! Last night, though, we got the master IV putter-inner and for once it didn't take 5 people to pin him down. She
slipped it right in there!
He will be in the hospital a full 10 days, no going to home IVs after all (the docs don't think we are ready for it. HELLO I think I can handle it.) So that means we are going home Sunday or Monday. I am hoping for Sunday because we have Little Mermaid on Ice tickets for that evening.
Bad news... he's having sinus troubles (he has dark circles under his eyes from the sinus problems) and had a sinus CT the other day. We are seeing an ear-nose-throat doc (ENT) on Friday who will probably suggest surgery. The sinus problems probably caused all the problems he's having that put him in the hospital... post-nasal drip and all.
He's had lots of CF-related tests since being in the hospital and tomorrow is a pH probe to test for reflux. He hasn't had this test in a couple of years. He's also having a body mass test which involves pinching calipers. I'm sure he's going to love that.
Third IV put in last night. The first one lasted four days, which I tell you was a miracle, the second one lasted almost two days, and then the tape over it got wet in the tub (Ricky was being very careful but sometimes these things happen) and the IV slipped out a tiny bit causing the vein to clot. d0h! Last night, though, we got the master IV putter-inner and for once it didn't take 5 people to pin him down. She
slipped it right in there!
He will be in the hospital a full 10 days, no going to home IVs after all (the docs don't think we are ready for it. HELLO I think I can handle it.) So that means we are going home Sunday or Monday. I am hoping for Sunday because we have Little Mermaid on Ice tickets for that evening.
Sunday, February 13, 2000
Hospital update
Ricky is doing well. Today he had an ECG (because he takes this drug called propulsid which can cause heart arrythmia... luckily it turned out fine). Otherwise it is the same as usual. He gets IV Tobramycin at 11 p.m., 7 a.m., and 3 p.m. What drives me crazy is that they do the pre- and post- blood draws with the 11 p.m. draw, so they have to wake him up. Why can't they do them mid-day??? At least I make them do finger pokes rather than full-blown blood draws.
I worked yesterday and I'm working a four hour shift today, but I got Monday off. The next day I work is Wednesday and I'm hoping we'll be out by then (and on home IV's). Right now he's with a volunteer (as he was most of yesterday since my shiftless soon-to-be-ex-husband (can you tell I'm bitter?) didn't show up when he said he would) which makes me nervous but since he's 4 he understands a lot more of what we tell him about his IV, etc.
The IV is the original one and they'll probably switch him to a PICC line which he can have at home and have home IV's which will be either good or bad... I'm not sure which...
So we're hanging in there... Just wanted to update everyone...
I worked yesterday and I'm working a four hour shift today, but I got Monday off. The next day I work is Wednesday and I'm hoping we'll be out by then (and on home IV's). Right now he's with a volunteer (as he was most of yesterday since my shiftless soon-to-be-ex-husband (can you tell I'm bitter?) didn't show up when he said he would) which makes me nervous but since he's 4 he understands a lot more of what we tell him about his IV, etc.
The IV is the original one and they'll probably switch him to a PICC line which he can have at home and have home IV's which will be either good or bad... I'm not sure which...
So we're hanging in there... Just wanted to update everyone...
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