For quite a while now, Ricky's gastroenterologist has wanted him to have an abdominal ultrasound to rule out other issues that might be causing the pain he's been having for a couple of years now. We've always figured it was bowel issues, common in CF, since he had such a hard time with bowel obstructions during his last two hospitalizations.
In recent months, CCS and Medi-Cal have decided that the gastroenterologist, who has seen Ricky since he was a neonate in the NICU, is no longer someone for whom they will pay for services rendered. So I had to turn to the CF doc (lung doctor) to get Ricky's ultrasound ordered. Today he had it, at Packard.
First off... The tech asked if anyone had ever mentioned Ricky having situs inversus. I said no, I didn't think so -- what was that? He said it was where the organs are reversed. He said that Ricky's liver seemed to be in a different place. I quickly Googled the term on my phone and puzzled over it.
Then the tech asked if anyone had ever told me anything about Ricky having issues with his pancreas. I said that other than pancreatic insufficiency, no.
I was asked about whether he'd had surgeries. I mentioned the several centimeters of small bowel that were removed when he was a few hours old. I said as far as I know, nothing else had been removed then.
Then things got really weird. He couldn't find Ricky's gallbladder. He had him turn this way and that, hold his breath. No gallbladder. And as it turns out... No right kidney either. What. The. Heck?
He called in another ultrasound technician. She couldn't find either organ either, after a lot of looking. Then the two of them brought in a radiologist. Even with his help they couldn't find the right kidney or the gallbladder. Curiouser and curiouser.
The exam was wrapped up with ultrasound tech #1 saying that the report would be completed soon. He mentioned that other imaging studies would probably be ordered.
When we got home I left a message on the CF nurse's voicemail. I talked about the weird ultrasound and asked that she call me as soon as the results were received, since I figured it would be pretty soon with how weird things were. I got a call back shortly thereafter from the patient care coordinator. He let me know that they felt Ricky needed to be referred to a gastroenterologist, I'm assuming one there at LPCH. So... results of the ultrasound? We don't have them yet.
How does someone lose their kidney? And gallbladder? He's had so many x-rays and at least one other ultrasound and CTs and... No one noticed this before? Or the strange liver placement or pancreatic issue? I'm so confused.
Hopefully more answers are forthcoming this week.
UPDATE: I heard back from the gastroenterologist eventually. She said that, in fact, both kidneys were visible, but the right kidney was obscured by bowel gas (which was odd, since he hadn't eaten since dinner the night before). The gallbladder was there, but greatly compressed. The gastroenterologist said this could be indicative of a number of problems, and suggested that Ricky have an abdominal MRI. This will have to wait til we see the new gastroenterologist at LPCH. We're waiting for that to happen... Hopefully soon.
Wednesday, December 28, 2011
Sunday, November 27, 2011
Guest Post: To Ricky From Nana
A note from Rebekah: My mom wrote this for Ricky and gave it to him on Saturday for his sixteenth birthday. Every year, I blog about the day Ricky was born and the weeks and years that followed. This year I want to share what my mom wrote. She says it all so well!
Here are some things I remember:
Your mom was taking good care of you even before you were born. We had Thanksgiving, and soon after that she noticed that you were having trouble – not moving as much as you had been. Thank goodness she called the doctor so they could start taking special care of you and of her.
I remember the first time I ever saw you. Pop and I, Grandma and Grampa Senn, and lots of other people were looking through a little window at a tiny baby with a very fat tummy, hooked up to lots of tubes and wires, wondering if we’d ever get to see you grow up. I’m so glad we have!
You were in the hospital in the Neo Natal Intensive Care unit for about two months right after you were born. You slept in a special little bed, hooked up to lots of tubes and wires – it was pretty scary.
After a while, we were allowed to hold you, being careful of all your connections. I was too afraid I’d do something wrong, so I don’t think I ever held you in the hospital, but I did love to touch you and just watch you. While you were in the hospital, Pop went to see you every single day. He’d stop there on his way to work and take your picture and cuddle you. Then he’d take the pictures to work and show them to all his friends and his customers, so lots of people knew all about you! He loved you so much and was so proud of you.
One day while you were still in the hospital, your mom and I went shopping. As we were parking, she saw a lady get into the car with her baby, but instead of putting the baby in a carseat, the lady held the baby in her lap and they drove away. I thought your mom was going to jump in front of the car and strangle that lady – how dare she take chances with her baby, when our baby was so sick? Didn’t the lady appreciate what a treasure she had?
The first time I ever got you to myself, your mom and dad and Pop went to a CFRI meeting and I got to babysit at your apartment. I’d promised myself the whole time you were i he hospital that someday I’d get to just sit and hold you. And that’s what I did. I think they were gone for about 3 hours, and I just sat on the couch and held you and touched you and loved you and looked at you. It was wonderful!!
Since you’d been so sick and had such a hard time digesting your food, Mommy wasn’t able to nurse you. Instead, she pumped out her milk and donated it to other little babies who couldn’t drink formula. She gave GALLONS! Your dad called her the “Dairy Queen”. You, meanwhile, had to have this really smelly special formula. We had to open up an enzyme capsule, dump it into your mouth, then give you your bottle and hope you’d stay awake long enough to drink it. I must admit, lots of times I’d promise to buy you a pony if you’d drink the whole bottle. I think I owe you a few ponies.
For a long time after you came home, you had to wear a monitor and we had to have oxygen available just in case you needed it. It was quite a production taking you anywhere, but it was worth it! Sometimes I think about that when I see you with your DS carrying case – you’re still attached to electronics!
One of the funnest things to do with you when you were little was to show you the white nose-and-mouth mask that’s hanging by my front door. You really liked it, and you’d do your funny happy thing – making a little circle with your mouth and making your arms go in and out.
Whenever you came to visit, Pop could hardly let you go. He wasn’t very good at sharing you! And when you left, you always wanted to have “datchers” - that was your word for crackers. You’d look for something in the treat drawer, and we’d have to put some in a baggie for you to take along.
After you got a little bigger, you and Mommy would go to Pop’s work. You loved to get onto the creeper and roll under the cars with him to help. He’d let you use his tools to “work” on the cars. You were so proud of yourself, and Pop was so proud of you! Nobody who came in to the shop when you were there could get away without Pop taking you up and introducing you. Then you and Mommy and Pop would walk down to the Juicy Burger and have lunch.
Ever since that first day, your mom has been a tiger when it came to taking care of you and getting you the things you needed. When we found out you had CF, she learned all about it and insisted that all the doctors talk with her and gave her lots of information. I remember her trying to get Dr. McCracken to have a meeting with her. I think the doctor thought she was just a worried mom, but after she finally met Becky she understood how smart Becky was, how much she knew, and how dedicated she was to you. Whenever your mom has heard about anything that might help you, she’d do her research and see to it that you had the very best care.
I love you so much, Ricky. I am so proud of you, and so glad to be able to see you grow up into such a great young man. I wish Pop could be here to know you now. He’d be proud of you, too, and you guys would have such a good time together!
Here are some things I remember:
Your mom was taking good care of you even before you were born. We had Thanksgiving, and soon after that she noticed that you were having trouble – not moving as much as you had been. Thank goodness she called the doctor so they could start taking special care of you and of her.
I remember the first time I ever saw you. Pop and I, Grandma and Grampa Senn, and lots of other people were looking through a little window at a tiny baby with a very fat tummy, hooked up to lots of tubes and wires, wondering if we’d ever get to see you grow up. I’m so glad we have!
You were in the hospital in the Neo Natal Intensive Care unit for about two months right after you were born. You slept in a special little bed, hooked up to lots of tubes and wires – it was pretty scary.
After a while, we were allowed to hold you, being careful of all your connections. I was too afraid I’d do something wrong, so I don’t think I ever held you in the hospital, but I did love to touch you and just watch you. While you were in the hospital, Pop went to see you every single day. He’d stop there on his way to work and take your picture and cuddle you. Then he’d take the pictures to work and show them to all his friends and his customers, so lots of people knew all about you! He loved you so much and was so proud of you.
One day while you were still in the hospital, your mom and I went shopping. As we were parking, she saw a lady get into the car with her baby, but instead of putting the baby in a carseat, the lady held the baby in her lap and they drove away. I thought your mom was going to jump in front of the car and strangle that lady – how dare she take chances with her baby, when our baby was so sick? Didn’t the lady appreciate what a treasure she had?
The first time I ever got you to myself, your mom and dad and Pop went to a CFRI meeting and I got to babysit at your apartment. I’d promised myself the whole time you were i he hospital that someday I’d get to just sit and hold you. And that’s what I did. I think they were gone for about 3 hours, and I just sat on the couch and held you and touched you and loved you and looked at you. It was wonderful!!
Since you’d been so sick and had such a hard time digesting your food, Mommy wasn’t able to nurse you. Instead, she pumped out her milk and donated it to other little babies who couldn’t drink formula. She gave GALLONS! Your dad called her the “Dairy Queen”. You, meanwhile, had to have this really smelly special formula. We had to open up an enzyme capsule, dump it into your mouth, then give you your bottle and hope you’d stay awake long enough to drink it. I must admit, lots of times I’d promise to buy you a pony if you’d drink the whole bottle. I think I owe you a few ponies.
For a long time after you came home, you had to wear a monitor and we had to have oxygen available just in case you needed it. It was quite a production taking you anywhere, but it was worth it! Sometimes I think about that when I see you with your DS carrying case – you’re still attached to electronics!
One of the funnest things to do with you when you were little was to show you the white nose-and-mouth mask that’s hanging by my front door. You really liked it, and you’d do your funny happy thing – making a little circle with your mouth and making your arms go in and out.
Whenever you came to visit, Pop could hardly let you go. He wasn’t very good at sharing you! And when you left, you always wanted to have “datchers” - that was your word for crackers. You’d look for something in the treat drawer, and we’d have to put some in a baggie for you to take along.
After you got a little bigger, you and Mommy would go to Pop’s work. You loved to get onto the creeper and roll under the cars with him to help. He’d let you use his tools to “work” on the cars. You were so proud of yourself, and Pop was so proud of you! Nobody who came in to the shop when you were there could get away without Pop taking you up and introducing you. Then you and Mommy and Pop would walk down to the Juicy Burger and have lunch.
Ever since that first day, your mom has been a tiger when it came to taking care of you and getting you the things you needed. When we found out you had CF, she learned all about it and insisted that all the doctors talk with her and gave her lots of information. I remember her trying to get Dr. McCracken to have a meeting with her. I think the doctor thought she was just a worried mom, but after she finally met Becky she understood how smart Becky was, how much she knew, and how dedicated she was to you. Whenever your mom has heard about anything that might help you, she’d do her research and see to it that you had the very best care.
I love you so much, Ricky. I am so proud of you, and so glad to be able to see you grow up into such a great young man. I wish Pop could be here to know you now. He’d be proud of you, too, and you guys would have such a good time together!
Saturday, November 26, 2011
Sixteen years ago...
Sixteen years ago right now I was lying in an uncomfortable hospital bed, scared and exhausted, having sporadic contractions. Eight hours later Ricky was delivered by emergency c-section. 9:26 a.m. on Sunday, November 26, 1995. 33 weeks' gestation. That's when this incredible journey began. I'm so challenged and so lucky and my life has been changed in ways I never could have imagined!
Friday, November 18, 2011
Hypoglycemia and other stuff
I called the nutritionist today to ask what was up. Basically, Ricky's glucose test last week showed that he has reactive hypoglycemia. Basically his CF affected pancreas sends out the insulin late, causing a late precipitous drop in blood sugar (in this case 2 hours after he drank the stuff). His blood sugar during the test spiked like it was supposed to, to 220, but then at the 2 hour mark the insulin hit and it dipped to 50. (That's when he passed out in the parking lot!) It took him the rest of the day to recover.
What does this mean? Basically he needs to be careful to eat three moderate meals per day and snack in between, and not eat a huge amount of carbs at any time. Carb overload followed by reactive hypoglycemia may be what has caused his dizzy/sleepy spells (with irritability) over the past few years. We just finally happened to catch it in a test.
I asked if this meant he will develop CF related diabetes. I was told there's a 50% possibility of this anyway, but he could go on for years this way before developing full blown CFRD. So he'll just keep having the annual testing (oh, joy).
It feels good to at least have some answers.
Going home now... Ricky's bone scan went fine and so did his PFTs. He brought his FEV1 up 10% to 81% in the brief time since his CF clinic visit. Go Ricky!
What does this mean? Basically he needs to be careful to eat three moderate meals per day and snack in between, and not eat a huge amount of carbs at any time. Carb overload followed by reactive hypoglycemia may be what has caused his dizzy/sleepy spells (with irritability) over the past few years. We just finally happened to catch it in a test.
I asked if this meant he will develop CF related diabetes. I was told there's a 50% possibility of this anyway, but he could go on for years this way before developing full blown CFRD. So he'll just keep having the annual testing (oh, joy).
It feels good to at least have some answers.
Going home now... Ricky's bone scan went fine and so did his PFTs. He brought his FEV1 up 10% to 81% in the brief time since his CF clinic visit. Go Ricky!
Thursday, November 17, 2011
Update
Ricky had a rather traumatic blood test last week. This included his annual labs followed by a 3 hour blood glucose tolerance test. That test involves blood being drawn periodically throughout the 3 hour wait after taking a big drink of disgusting glucose solution. A lot of pregnant women have had this test in 1 or 3 hour varieties.
Poor Ricky started to feel badly right before the half hour draw. He was fasting, so I don't know whether he was just hungry or what. We had to battle him for 10 minutes to get the 3rd draw, making it late. He was tired and hungry and physically fought. The fourth draw went off without a hitch. After the fifth and final one, he was dizzy and unsteady, stumbling around, and on the way out to the car he passed out cold on the pavement. It was scary. And the CF nurse, when I called her, said she hadn't heard of that sort of reaction before. She suggested he might be dehydrated and I did let him rest and give him fluids.
After waiting a few days this week for all of the blood test results to come back, this afternoon I heard back from the CF clinic. Sort of. Ricky's labs are all back, but the nurse is going to talk to the nutritionist about the vitamin levels and glucose tests before they get back to me. That doesn't sound good, does it? (The glucose part; we've had to add extra vitamins before -- that's no big deal.)
Also heard back from the gastroenterologist's office today. Ricky is supposed to have an abdominal ultrasound to rule out other stuff given his frequent abdominal pain. But CCS and Medi-Cal will not cover the GI doc anymore, for bizarre reasons known only to them. So the GI doc is going to call the pulmonologist to strategize. Ricky will probably end up being referred to a GI doc who's also at Stanford and getting that test. It's kinda sad, since the original GI doc has seen him ever since he was diagnosed at 3 weeks old. But we will deal.
Tomorrow (Friday) Ricky's having his annual bone density scan and full pulmonary function test. And we will hear back about the blood tests. What a week it has been!
Poor Ricky started to feel badly right before the half hour draw. He was fasting, so I don't know whether he was just hungry or what. We had to battle him for 10 minutes to get the 3rd draw, making it late. He was tired and hungry and physically fought. The fourth draw went off without a hitch. After the fifth and final one, he was dizzy and unsteady, stumbling around, and on the way out to the car he passed out cold on the pavement. It was scary. And the CF nurse, when I called her, said she hadn't heard of that sort of reaction before. She suggested he might be dehydrated and I did let him rest and give him fluids.
After waiting a few days this week for all of the blood test results to come back, this afternoon I heard back from the CF clinic. Sort of. Ricky's labs are all back, but the nurse is going to talk to the nutritionist about the vitamin levels and glucose tests before they get back to me. That doesn't sound good, does it? (The glucose part; we've had to add extra vitamins before -- that's no big deal.)
Also heard back from the gastroenterologist's office today. Ricky is supposed to have an abdominal ultrasound to rule out other stuff given his frequent abdominal pain. But CCS and Medi-Cal will not cover the GI doc anymore, for bizarre reasons known only to them. So the GI doc is going to call the pulmonologist to strategize. Ricky will probably end up being referred to a GI doc who's also at Stanford and getting that test. It's kinda sad, since the original GI doc has seen him ever since he was diagnosed at 3 weeks old. But we will deal.
Tomorrow (Friday) Ricky's having his annual bone density scan and full pulmonary function test. And we will hear back about the blood tests. What a week it has been!
Saturday, September 17, 2011
Sleep study
Ricky is having a sleep study tonight. This one is for clinical research. He's happy that he'll be getting $100 plus a gift card, but he also knows it's important that he'll be helping scientists to learn about how sleep is affected by cystic fibrosis. So, yeah, awesome.
We had to get here at 6:00, two hours before his expected bedtime, but by 6:30 he was already getting sleepy and asking if he could sit down. That's my boy, always a great sleeper. He was all hooked up and nodding off by 7:30, and now I'm in my separate little bedroom, which is pretty nice, with a double bed and Ikea furniture... A mirror opposite of the room Ricky is in.
Ricky has been coughing more lately. We are a few months short of the two year mark since his last hospitalization. I know it's inevitable that he'll end up in there again one way or another, but I hope it's not soon.
Okay, I am off to try to sleep myself. I can't find my headphones so I can't listen to my iPod, and somehow the battery on my Nook is dead even though I haven't been using it. But I have an actual physical book I can read, Breathing for a Living, by Laura Rothenberg, an adult with CF. Fitting! A week ago I saw the Bay Area premiere of "The Power of Two" with Ana Stenzel and Isa Stenzel Byrnes. Guess it's a CF month!
Ttfn.
Friday, August 19, 2011
Long overdue update
I just realized how long it's been since I updated. Ack! Sorry about that. The good thing is... No news really is good news.
We moved in May due to my lease ending and our desire to move in with my friend Liz and her son Kevin. We now live in the Rosegarden area of San Jose, in a charming little 98 year old farmhouse on a 10,000 square foot lot. Our rent is actually less because of the house sharing arrangement.
Ricky started school (he's a sophomore) on Monday the 15th.
His health has been great. He has finally started growing like crazy (several inches this year alone) and I'd bet he'll pass me up in height by the end of the year. After not growing for several years! Yay Ricky! He has been out of the hospital for coming up on two years now. Yay! We have his genetics appointment later this month where he will finally be tested for Ehlers-Danlos.
That is it for now and I'll try to be better about updating. :)
We moved in May due to my lease ending and our desire to move in with my friend Liz and her son Kevin. We now live in the Rosegarden area of San Jose, in a charming little 98 year old farmhouse on a 10,000 square foot lot. Our rent is actually less because of the house sharing arrangement.
Ricky started school (he's a sophomore) on Monday the 15th.
His health has been great. He has finally started growing like crazy (several inches this year alone) and I'd bet he'll pass me up in height by the end of the year. After not growing for several years! Yay Ricky! He has been out of the hospital for coming up on two years now. Yay! We have his genetics appointment later this month where he will finally be tested for Ehlers-Danlos.
That is it for now and I'll try to be better about updating. :)
Friday, April 29, 2011
Endoscopy and other updates
Wow, already 10 days since Ricky's endoscopy. Anyway, it went well. We got a call the day before from the surgery center saying that we needed to get to LPCH at 1:15 pm. Shortly thereafter, we heard from the gastro doc's office that Ricky needed pre-procedure paperwork. Uhhh. Eek!!! So I found a lab that was going to be open late enough, and I rushed Ricky there to get his blood drawn.
We got to the hospital early for once, and went to the surgery center. After checking in, we went to an exam room and saw a parade of people for exams, paperwork, a review of Ricky's meds, and port access... A couple of nurses, the gastro doc (who would be doing the procedure), the anesthesiologist... And then finally it was time.
We walked upstairs to the ambulatory procedure unit. I got to go in and watch them put Ricky under. It was funny. The anesthesiologist pushed in Versed, which made Ricky all woozy and loopy. Then she pushed in this white stuff and his eyes rolled right back into his head and he was out. He was holding my hand still but he was OUT.
So I went out to the waiting room, plugged in my poor dying phone, and read my book for a while. He was done fairly quickly. And by the time I got to recovery he was already awake! Usually he takes a long time to wake up.
The doctor let me know that his endoscopy went fine. She did also do a short flexible sigmoidoscopy and she found a polyp in his colon. She even showed me a picture of it. She said she should it was likely just a "juvenile polyp" but that she had biopsied it. If it was just that, he would need a colonoscopy in a year to check on it. If it turned out to be cancerous, we would have to do something sooner, but she was pretty sure that wouldn't happen. Bad news about a colonoscopy is the preparation... Go-Lytely, etc. She figured he'd have to go into the hospital in advance for an NG tube to administer that stuff.
Yesterday I got a call from the doc saying that the biopsy had revealed that the polyp was actually just an ulcer. These are usually caused by constipation, that sort of thing. She emphasized again that he needs to be using his Miralax regularly and taking care of his body. Man up, be a big boy. I agreed and Ricky and I have been talking seriously about this. The good news? No colonoscopy in a year! Hooray! She does want to do an ultrasound soon because of Ricky's belly aches. Just to make sure he doesn't have kidney stones or gallstones going on in there.
More good news, Ricky was at school every single day this week, although one day I did have to pick him up early because he was so sleepy.
We also had his triennial IEP and he had extensive testing done. His eligibility designations were changed from Other Health Impaired (CF) and Severe Emotional Disturbance to OHI and Learning Disability. It was nice to hear that the SED is gone... But on the other hand this newly diagnosed learning disability (in mathematics) is sad to hear about. But at least now he can be getting some help with that. He was also found to be deficient in a few other areas, including reading comprehension.
It was also suggested that Ricky be considered for a course at another local high school in our district where he would learn life and job skills in addition to academic courses. I am going to go tour there soon. Though with us moving soon, and not knowing which district we'll end up in, who knows where he will end up? Ugh.
Ricky's dad had his blood drawn a few weeks ago for the duplication in the seventh chromosome. Finally! We waited a long time for the prison doctor to get off his butt and order the test. Soon we will know if Rick also carries that mutation. One way or another Ricky will eventually have other testing for other stuff like connective tissue disorders.
Also went back for the twice-yearly neuro appointment. Since he's been doing so well, I asked whether he could be taken off of the Topamax, since it makes him so dopey and sleepy. The neurologist agreed that we could start backing off slowly on it and to immediately call if he had seizure activity or other adverse events. So, yay. :)
Guess that is it for now. Goodnight!!!
We got to the hospital early for once, and went to the surgery center. After checking in, we went to an exam room and saw a parade of people for exams, paperwork, a review of Ricky's meds, and port access... A couple of nurses, the gastro doc (who would be doing the procedure), the anesthesiologist... And then finally it was time.
We walked upstairs to the ambulatory procedure unit. I got to go in and watch them put Ricky under. It was funny. The anesthesiologist pushed in Versed, which made Ricky all woozy and loopy. Then she pushed in this white stuff and his eyes rolled right back into his head and he was out. He was holding my hand still but he was OUT.
So I went out to the waiting room, plugged in my poor dying phone, and read my book for a while. He was done fairly quickly. And by the time I got to recovery he was already awake! Usually he takes a long time to wake up.
The doctor let me know that his endoscopy went fine. She did also do a short flexible sigmoidoscopy and she found a polyp in his colon. She even showed me a picture of it. She said she should it was likely just a "juvenile polyp" but that she had biopsied it. If it was just that, he would need a colonoscopy in a year to check on it. If it turned out to be cancerous, we would have to do something sooner, but she was pretty sure that wouldn't happen. Bad news about a colonoscopy is the preparation... Go-Lytely, etc. She figured he'd have to go into the hospital in advance for an NG tube to administer that stuff.
Yesterday I got a call from the doc saying that the biopsy had revealed that the polyp was actually just an ulcer. These are usually caused by constipation, that sort of thing. She emphasized again that he needs to be using his Miralax regularly and taking care of his body. Man up, be a big boy. I agreed and Ricky and I have been talking seriously about this. The good news? No colonoscopy in a year! Hooray! She does want to do an ultrasound soon because of Ricky's belly aches. Just to make sure he doesn't have kidney stones or gallstones going on in there.
More good news, Ricky was at school every single day this week, although one day I did have to pick him up early because he was so sleepy.
We also had his triennial IEP and he had extensive testing done. His eligibility designations were changed from Other Health Impaired (CF) and Severe Emotional Disturbance to OHI and Learning Disability. It was nice to hear that the SED is gone... But on the other hand this newly diagnosed learning disability (in mathematics) is sad to hear about. But at least now he can be getting some help with that. He was also found to be deficient in a few other areas, including reading comprehension.
It was also suggested that Ricky be considered for a course at another local high school in our district where he would learn life and job skills in addition to academic courses. I am going to go tour there soon. Though with us moving soon, and not knowing which district we'll end up in, who knows where he will end up? Ugh.
Ricky's dad had his blood drawn a few weeks ago for the duplication in the seventh chromosome. Finally! We waited a long time for the prison doctor to get off his butt and order the test. Soon we will know if Rick also carries that mutation. One way or another Ricky will eventually have other testing for other stuff like connective tissue disorders.
Also went back for the twice-yearly neuro appointment. Since he's been doing so well, I asked whether he could be taken off of the Topamax, since it makes him so dopey and sleepy. The neurologist agreed that we could start backing off slowly on it and to immediately call if he had seizure activity or other adverse events. So, yay. :)
Guess that is it for now. Goodnight!!!
Wednesday, April 20, 2011
Endoscopy
So, tomorrow Ricky is having an endoscopy. He's supposed to have these periodically to check on his reflux and stuff. It took a couple of days this week of hair-pulling bureacracy dealing to get it approved for payment by California Children's Services, but finally today when I called them, I was told it was approved yesterday.
A while later someone from the gastro doc's office called to say they'd left me a message yesterday about Ricky needing bloodwork before he could have the procedure. What? I had received no message from anyone and I had checked my voicemails just this morning. This ended up with them faxing a lab requisition over in a big hurry and me rushing to get Misty from preschool and take Ricky to get the blood drawn. It was drawn STAT and hopefully that was good enough. :P
The endoscopy is at 1:15 and he's not allowed to eat after... Well... Midnight. Now. And he can have clear liquids in the morning up until 11:30am. He's gonna be a very unhappy camper.
A while later someone from the gastro doc's office called to say they'd left me a message yesterday about Ricky needing bloodwork before he could have the procedure. What? I had received no message from anyone and I had checked my voicemails just this morning. This ended up with them faxing a lab requisition over in a big hurry and me rushing to get Misty from preschool and take Ricky to get the blood drawn. It was drawn STAT and hopefully that was good enough. :P
The endoscopy is at 1:15 and he's not allowed to eat after... Well... Midnight. Now. And he can have clear liquids in the morning up until 11:30am. He's gonna be a very unhappy camper.
Wednesday, April 13, 2011
So, how is Ricky doing? :)
Ricky is doing okay. He's had a few random bad days, being tired, not feeling well, etc. but he is actually doing great in general. School has been a struggle again (still?) -- getting him there and actually having him work. At his annual IEP it was decided that he is going to be attending half days. He leaves after four periods + lunch. But so far he's still struggling to get through the day. *sigh*
Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.
Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.
He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!
Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)
Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.
Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.
He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!
Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)
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