After my last discouraging doctor's appointment, etc. I decided our best approach was to take action and make an appointment with an infectious disease doctor. In fact, the doctor we ended up seeing was a pediatric infectious disease doctor! Even better!
Two weeks ago this Thursday Courtney finished a 10 day round of augmentin and one week's worth of antibiotic drops. I was starting to either worry or hope, I am not sure which one, that her ear was going to be all cleared up and we weren't going to have any more problems. This would be good if it were really the end, but bad since we had the appointment scheduled with the doctor for today. Did the antibiotics really work? If it wasn't draining yet, would the doctor still take it seriously and move forward with an action plan? I just wanted a concrete plan.
I think with a little divine intervention, Courtney woke up this morning with drainage. I know this seems terrible that I wanted her to have drainage. It is kind of like that squeak in your car that you want fixed, but whenever you take your car in it doesn't do it! You want it to squeak, I wanted it to drain! And it did! So here is the plan!
We had blood work done today which wasn't easy, but she did it. Thankfully we did at Methodist Children's so they had tiny needles, yet it still took a stick in each arm to get enough blood for today. She has to go back again to do the rest because they are only allowed to take a certain amount of blood in one day. The bottom line is the doctor wants to check her immune system more thoroughly, boost it and find out why she can't clear up the infection completely.
To start off we are on two types of antibiotics for 14 days versus the normal 10. She is on a stronger dose of augmentin and rifampin. She did warn me, thank goodness, that rifampin will cause her tears, urine, snot, etc. to be orange so don't freak out! She is leaving drops to Dr. Not so Happy to prescribe tomorrow at our follow up from the ear infection that is already back! We will go back to her in two weeks to get all of our results and determine our next steps based on the results, etc.
In the meantime she ordered a regular ol' CBC which will basically measure the concentration of red blood cells, white blood cells and platelets in the blood. She also ordered autoimmune deficiency testing for subclasses Ig C, Ig E, Ig M, Ig I, Ig G, and Ig A. In addition to that she did the pneumococcal titers (14 serotypes). This will determine if Courtney fails to make an antibody response to any of the 14 serotypes. One of the tests we have to still do is the allergy RAST test which will determine if the drainage is allergy related and the infection is really a secondary infection. Apparently this test alone takes up the one day allotment that can be taken from Sassy Pants. After the blood draw, she got a dose of the pneumovax! The thought behind this was to boost her immune system and cover more types of pneumococcus. And last, but not least she ordered a streptococcus pneumoniae urine test. From my understanding this will test if streptococcus pneumoniae is in her urine, but I don't know at this point, why that is important! This by the way, has to be done on a non potty trained little girl and taken to San Antonio on ice within 4 hours after she goes. Okay Heavenly Father, a little more divine intervention might be needed here!! Timing this between the commute to school, work, doctors appointments and a non cooperative 2 year old should be interesting!!!
The only other thing she would like to do is to have her vaccinated with the newly FDA approved Prevnar 13. This was just approved February 24, 2010 and will cover 13 strains of bacteria versus the 7. Because Courtney had the other vaccine today she wants to wait for one month.
Okay, that was more medical talk than I know what to do with!! I feel really good about this plan and really good about this doctor! She wants a handle on this, wants to know why she continues to have these ear infections AND she has a plan!! I will keep you all posted!
Tuesday, March 23, 2010
Wednesday, March 3, 2010
Reaching Out
I haven't been the best blogger, and I don't know who all reads this, but I need help. This is our situation.
Courtney has chronic ear infections with drainage. We do countless rounds of oral antibiotics, and I think we have gone through at least a half dozen bottles of antibiotic drops. It will clear up and then within a few weeks to a month, at the most, it will begin draining again. It is always the right ear, we are on our second set of PE tubes and have done an adenoidectomy. We have ruled out a biofilm and an infected implant due to two cultures a year apart, but both came back with the pneumococcal bacteria.
This past week we went back to Dr.Not so Happy with Him Right Now and found out the recent culture showed pneumococcal bacteria. He prescribed oral antibiotics and drops and sent us back to our pediatrician - what? You are the ear doctor!! He said that he was not okay with the situation, but since the implant wasn't infected we needed to go to the pedi to explore blood work for an immune deficiency and possible discuss seeing an infectious disease doctor. So, I am at an ear "expert" and you are sending me to my pedi with a chronic ear infection!?
I was able to get in yesterday with our pedi, he was great, but obviously isn't familiar with everything with cochlear implants, etc. We did the blood work which came back normal and he said there isn't anything more he can do. What? What the heck am I supposed to do now!? I called our pedi ENT office for a 2nd opinion or something, but can't get in until April 26th!
Has anyone experienced chronic ear infections like this? There normally isn't fever, but always drainage with or without odor and turns tan or yellow or greenish. Should we try to get into an infectious disease doctor? Is it okay to just keep doing oral antibiotics and drops?
Any advice would be great!
Courtney has chronic ear infections with drainage. We do countless rounds of oral antibiotics, and I think we have gone through at least a half dozen bottles of antibiotic drops. It will clear up and then within a few weeks to a month, at the most, it will begin draining again. It is always the right ear, we are on our second set of PE tubes and have done an adenoidectomy. We have ruled out a biofilm and an infected implant due to two cultures a year apart, but both came back with the pneumococcal bacteria.
This past week we went back to Dr.Not so Happy with Him Right Now and found out the recent culture showed pneumococcal bacteria. He prescribed oral antibiotics and drops and sent us back to our pediatrician - what? You are the ear doctor!! He said that he was not okay with the situation, but since the implant wasn't infected we needed to go to the pedi to explore blood work for an immune deficiency and possible discuss seeing an infectious disease doctor. So, I am at an ear "expert" and you are sending me to my pedi with a chronic ear infection!?
I was able to get in yesterday with our pedi, he was great, but obviously isn't familiar with everything with cochlear implants, etc. We did the blood work which came back normal and he said there isn't anything more he can do. What? What the heck am I supposed to do now!? I called our pedi ENT office for a 2nd opinion or something, but can't get in until April 26th!
Has anyone experienced chronic ear infections like this? There normally isn't fever, but always drainage with or without odor and turns tan or yellow or greenish. Should we try to get into an infectious disease doctor? Is it okay to just keep doing oral antibiotics and drops?
Any advice would be great!
Sunday, February 28, 2010
Quick Update
We ended up doing a culture on Courtney's right ear. We find out tomorrow what it is and how we will treat it. The options are more oral antibiotics, going to an infectious disease doctor, removing the tube they just put in, patching her eardrum and doing more antibiotics, or iv antibiotics. So, we shall see!
On another note Jeremy has decided not to play baseball. He was all signed up, but hadn't started yet. Bryan and the boys went down to the mission by our house (big lawn area) to play ball. Logan can't get enough baseball and would sleep in his baseball pants if he could! They were playing and then somehow Bryan and Jeremy started talking. Bryan asked him if he really wanted to play. Apparently Jeremy hesitated and then told Bryan that he really didn't want to. Bryan told him it was okay and that he just needed to tell him, etc. So, Bryan came home feeling bad, not so much because Jeremy didn't want to play (he was a little bummed about it) but because Jeremy thought Bryan would be disappointed!
Oh, my heart went out to both of them. Late last night the little ones went to bed so Jeremy and I had ice cream cones and Bryan sat at the table with us. Jeremy is really into music and loves to sing, etc. He asked if he could take guitar lessons. Bryan told him at the table he could and we discussed practicing and the responsibility, etc. He was and is truly excited about taking lessons, he lit up. Never did so much about baseball.
As for Logan - he is great! It is never a dull moment with him! Our house has been on the market so the other day we had a showing. Jeremy wasn't too happy about it as he doesn't want to move. I went on to explain that the Lord is in charge and we will move in His time, etc. So the next morning after breakfast Logan asks me, "Mommy, when is Jesus going to sell our house." It still makes me chuckle!!
And last, but certainly not least, Bryan has started taking, drum roll please...................................... bagpipe lessons!!! Yep, my hotty, fireman hubby is going to be wearing a skirt, I mean kilt!!! It is for the fire department and he is getting better every day, but this too, makes me chuckle!! Love ya babe!
On another note Jeremy has decided not to play baseball. He was all signed up, but hadn't started yet. Bryan and the boys went down to the mission by our house (big lawn area) to play ball. Logan can't get enough baseball and would sleep in his baseball pants if he could! They were playing and then somehow Bryan and Jeremy started talking. Bryan asked him if he really wanted to play. Apparently Jeremy hesitated and then told Bryan that he really didn't want to. Bryan told him it was okay and that he just needed to tell him, etc. So, Bryan came home feeling bad, not so much because Jeremy didn't want to play (he was a little bummed about it) but because Jeremy thought Bryan would be disappointed!
Oh, my heart went out to both of them. Late last night the little ones went to bed so Jeremy and I had ice cream cones and Bryan sat at the table with us. Jeremy is really into music and loves to sing, etc. He asked if he could take guitar lessons. Bryan told him at the table he could and we discussed practicing and the responsibility, etc. He was and is truly excited about taking lessons, he lit up. Never did so much about baseball.
As for Logan - he is great! It is never a dull moment with him! Our house has been on the market so the other day we had a showing. Jeremy wasn't too happy about it as he doesn't want to move. I went on to explain that the Lord is in charge and we will move in His time, etc. So the next morning after breakfast Logan asks me, "Mommy, when is Jesus going to sell our house." It still makes me chuckle!!
And last, but certainly not least, Bryan has started taking, drum roll please...................................... bagpipe lessons!!! Yep, my hotty, fireman hubby is going to be wearing a skirt, I mean kilt!!! It is for the fire department and he is getting better every day, but this too, makes me chuckle!! Love ya babe!
Wednesday, February 10, 2010
Monday, February 8, 2010
Late Catch Up
A week has already passed since my baby boy turned 4! Logan James is now, "A different person," according to him! We had a joint birthday party with a friend from Jeremy's class at Sunshine Cottage (pictures to come). All he wanted was cake and balloons, but he also got a rented jump castle, friends, pizza and presents! He was so cute. Logan is our funny guy, all middle child! He has a twinkle in his eyes and such a love bug! When he is really buttering you up, he, "Gets some sugar!" Oh, we just love him so much!
This past Saturday he had a T-ball clinic. He was so excited. Bryan took him the day before to Academy for baseball pants and socks. He woke up a little after 6am Saturday asking if he could put on his new baseball pants and if it was time to go to his game yet! He also got a new bat a few weeks prior, but it was on timeout since Logan hit Courtney in the face with it and gave her a black eye! Anywho, he loves baseball and can't wait for Saturday to come again to go to his "game".
On another note, Courtney is in a big girl bed! Her crib turns into a toddler bed and since Logan and Courtney are so close in age, we never used it that way before!! I am a believer of keeping kids in cribs as long as you can. Well, the time came! I heard a blood curdling scream and found her face down on the ground. Yep, she tried to climb out. I knew it was coming, but the boys would just monkey their way down, not Courtney! So far it hasn't been too bad. However, it is difficult trying to tell a deaf girl to get back in bed. It's kind of interesting!! I am seeing that she can read lips. I told her after laying with her for a while, "Okay, Courtney it is time to go night night." She said, "Okay, night night." People told me she would do this and in the middle of the night if she woke up sick or whatever that we would be able to carry on a "normal" conversation, but it was hard to believe. It's actually kind of amazing!!
The flip side of Courtney is that she is battling an ear infection even after removing those adenoids and 2nd set of tubes. So, we are on a high dose of antibiotic ear drops and a wick in her ear to keep the drops in. We go back on Thursday to take the wick out. Then we wait 72 hours. If there is any drainage at all we have to do a culture. Depending on what the culture comes back with, if we have to do it, we will either do IV antibiotics or re-do the tube. This isn't the first time we have done a wick and a culture so we shall see!! I'm just really hoping for no drainage after Thursday!!
Jeremy is doing great in school and just went to a baseball clinic on Saturday as well. He loved it and did great! He also gave his first talk in church on Sunday. Oh y goodness it warmed my heart! He did so good! He was so nervous, but didn't need any help. We practiced reading it and then he skyped with his grandparents in CA and practiced for them the night before On Sunday he was so scared he just couldn't look up at anyone! He has such a sweet spirit! It worked out for Bryan to be there as well to see his first talk, yahoo!
Well, that is about it for now! I am really trying to post more regularly, but it is hard!! More pictures to come soon!
This past Saturday he had a T-ball clinic. He was so excited. Bryan took him the day before to Academy for baseball pants and socks. He woke up a little after 6am Saturday asking if he could put on his new baseball pants and if it was time to go to his game yet! He also got a new bat a few weeks prior, but it was on timeout since Logan hit Courtney in the face with it and gave her a black eye! Anywho, he loves baseball and can't wait for Saturday to come again to go to his "game".
On another note, Courtney is in a big girl bed! Her crib turns into a toddler bed and since Logan and Courtney are so close in age, we never used it that way before!! I am a believer of keeping kids in cribs as long as you can. Well, the time came! I heard a blood curdling scream and found her face down on the ground. Yep, she tried to climb out. I knew it was coming, but the boys would just monkey their way down, not Courtney! So far it hasn't been too bad. However, it is difficult trying to tell a deaf girl to get back in bed. It's kind of interesting!! I am seeing that she can read lips. I told her after laying with her for a while, "Okay, Courtney it is time to go night night." She said, "Okay, night night." People told me she would do this and in the middle of the night if she woke up sick or whatever that we would be able to carry on a "normal" conversation, but it was hard to believe. It's actually kind of amazing!!
The flip side of Courtney is that she is battling an ear infection even after removing those adenoids and 2nd set of tubes. So, we are on a high dose of antibiotic ear drops and a wick in her ear to keep the drops in. We go back on Thursday to take the wick out. Then we wait 72 hours. If there is any drainage at all we have to do a culture. Depending on what the culture comes back with, if we have to do it, we will either do IV antibiotics or re-do the tube. This isn't the first time we have done a wick and a culture so we shall see!! I'm just really hoping for no drainage after Thursday!!
Jeremy is doing great in school and just went to a baseball clinic on Saturday as well. He loved it and did great! He also gave his first talk in church on Sunday. Oh y goodness it warmed my heart! He did so good! He was so nervous, but didn't need any help. We practiced reading it and then he skyped with his grandparents in CA and practiced for them the night before On Sunday he was so scared he just couldn't look up at anyone! He has such a sweet spirit! It worked out for Bryan to be there as well to see his first talk, yahoo!
Well, that is about it for now! I am really trying to post more regularly, but it is hard!! More pictures to come soon!
Friday, January 22, 2010
We survived!
W did survive, but it was a challenge!! When we arrived this morning Dr. Syms informed me with Courtney's history of ear infections that we should go ahead and remove her adenoids! A little longer of a procedure and a whole lot more anesthesia and all that comes along with that, but we survived! We felt it best to do it while she was under rather than schedule another procedure.
Courtney is soundly, safely sleeping in bed! Glad it is over and that Bryan is home! Note to self, never schedule a 10 minute procedure of any kind unless both parents can attend! You never know what the doctor may want to do!!!
Courtney is soundly, safely sleeping in bed! Glad it is over and that Bryan is home! Note to self, never schedule a 10 minute procedure of any kind unless both parents can attend! You never know what the doctor may want to do!!!
Thursday, January 21, 2010
Frazzled, but survived!
If you know me and I mention that I am going to take all 3 of my children to a 3 hour doctor's appointment (yes, I knew it would be 2.5 to 3 hours BEFORE I went) please try to talk me out of it. Especially if I mention that all 3 of them will be getting up at 6am and Courtney won't be able to take a nap.
Yep, I took them all to a have their eyes checked. Logan had a follow up and Courtney and Jeremy needed to be examined. The staff and doctors were great and very patient with us. It was the worst Courtney has ever behaved. Ear piercing screams at the top of her lungs, running and slamming the exam room door, and collapsing on the ground are just a few of the tricks she used. I sat with her, I talked, I distracted, I fed her, I tried everything, but nothing worked. Logan would look at her wrong and she would yell, "Owe!" What? Logan didn't even touch her!! The nurses would come in with they toys that they kept for, "These kinds of situations."
Then, little Miss Sassy Pants, gets up in the exam chair and is a perfect angel for the doctor. Great! We are out of the woods! Nope, she gets down runs out the door, runs back in and hits Logan. The doctor reassures me it is okay, he has a 2 year old. I am dying, frazzled by this point. Courtney proceeds to push Logan so the doctor gets down eye level with Courtney and tells her hitting is not allowed in his office (all very kind) and that if she does it again she won't be able to go to the prize box. She knew she was in trouble so she starts to scream.
At this point the doctor hadn't discussed with me Logan's results from his October surgery, if it took, etc. Jeremy and Courtney were good to go. The screaming continues every time we try to talk so the nurse takes all of the kids to get prizes so we can talk. I wanted to shut the door and lock it for just a minute. They all picked out a prize or two and we wonder why Courtney is persistent. She always gets what she wants!!
The kids almost all got a good report. Courtney has to come back in a year (can't wait), but doesn't need glasses or have any signs of crossing, etc. Neither does Jeremy, yahoo! Logan is good for now, but his measurements from his last appointment to this one have gotten worse as far as crossing. His vision is great, but we are in a "tweener" stage according to the doctor. We don't have to do anything now, but in 4 months if it gets any worse we may have to do another surgery.
So, in the end I survived , frazzled, but alive! I called Bryan who is in Utah until tomorrow night to give him a full report and let him know that Courtney's neurotologist called to schedule another set of tubes for tomorrow morning. He offered to come home early, but I figured if I can survive 3 of them at the doctor, I can survive a 10 minute procedure even if it does require general anesthesia!
Yep, I took them all to a have their eyes checked. Logan had a follow up and Courtney and Jeremy needed to be examined. The staff and doctors were great and very patient with us. It was the worst Courtney has ever behaved. Ear piercing screams at the top of her lungs, running and slamming the exam room door, and collapsing on the ground are just a few of the tricks she used. I sat with her, I talked, I distracted, I fed her, I tried everything, but nothing worked. Logan would look at her wrong and she would yell, "Owe!" What? Logan didn't even touch her!! The nurses would come in with they toys that they kept for, "These kinds of situations."
Then, little Miss Sassy Pants, gets up in the exam chair and is a perfect angel for the doctor. Great! We are out of the woods! Nope, she gets down runs out the door, runs back in and hits Logan. The doctor reassures me it is okay, he has a 2 year old. I am dying, frazzled by this point. Courtney proceeds to push Logan so the doctor gets down eye level with Courtney and tells her hitting is not allowed in his office (all very kind) and that if she does it again she won't be able to go to the prize box. She knew she was in trouble so she starts to scream.
At this point the doctor hadn't discussed with me Logan's results from his October surgery, if it took, etc. Jeremy and Courtney were good to go. The screaming continues every time we try to talk so the nurse takes all of the kids to get prizes so we can talk. I wanted to shut the door and lock it for just a minute. They all picked out a prize or two and we wonder why Courtney is persistent. She always gets what she wants!!
The kids almost all got a good report. Courtney has to come back in a year (can't wait), but doesn't need glasses or have any signs of crossing, etc. Neither does Jeremy, yahoo! Logan is good for now, but his measurements from his last appointment to this one have gotten worse as far as crossing. His vision is great, but we are in a "tweener" stage according to the doctor. We don't have to do anything now, but in 4 months if it gets any worse we may have to do another surgery.
So, in the end I survived , frazzled, but alive! I called Bryan who is in Utah until tomorrow night to give him a full report and let him know that Courtney's neurotologist called to schedule another set of tubes for tomorrow morning. He offered to come home early, but I figured if I can survive 3 of them at the doctor, I can survive a 10 minute procedure even if it does require general anesthesia!
Subscribe to:
Posts (Atom)