Blood Work Results

After a horrible reaction to the super strong doses of antibiotics, Bryan and I decided to take Courtney off of them and call the doctor Monday. She was so sick. We just couldn't fathom giving her more when all of the blood work had been done and she may not even need the antibiotics. The infectious disease doctor is only in the office on Tuesdays, the rest of the time she works out of a hospital. Anyways, I called Monday and she happened to have a cancellation for today. Relief!

The blood work was in and things look good. Her immune system is good and intact. Her titers, however, showed lower than she would like. She said that they weren't "stellar". Basically, her body has a difficult time making antibodies to fight off some strains of the strep bacteria. So, the Pneumovax that she just had last week and the new Prevnar 13 she will need to take in a few weeks will help build those numbers. She will re-check her blood levels one month after she has the Prevnar vaccination. The culture of the drainage this time came out to be viral, not an infection. (This means we do not have to continue the two antibiotics that caused her to be so sick! Yahoo!) She feels that the drainage is part of Courtney's vicious cycle. Her eustachian tube doesn't function correctly which is why she has tubes so her ear will drain. In a non-implanted person this would not be an issue. Since there is a foreign object in her ear any drainage poses a threat. The hope is as she continues to grow her eustachian tube will develop and work correctly and will "grow out" of ear infections.

Of course, Courtney had drainage today and since she has had so many infections she is putting her in a prophylaxis for 6 months. In the meantime if we have any questions or continue to have ear infections to go back and see her. She is great!! I am keeping my fingers crossed that we can boost her immune system and that in 6 months we can stop all medications and be healthy!!! All her allergy testing came back negative except for cats!! Yep, she is allergic to cats! Thank goodness we don't have any pets, unless you count a fish!?

Plan of Action

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!

Surgery and Recovery

Surgery was a success!

It was definitely a long day, but in the end it was successful. We arrived to Methodist in San Antonio at 6am. While we were waiting we learned that Courtney's surgery wasn't until 10am and we could have arrived at 8am. Luckily Julie, our Parent Advisor with Sunshine Cottage, arrived with the most delicious cinnamon rolls ever. We all decided we wouldn't have slept anyways so it was no big deal.

We waited together (Bryan, myself, Julie and my mom aka Momo) on the 9th floor in the surgery holding area where we were to come later and finish recovering. Courtney was in good spirits despite not having eaten since 6pm the night before. She took a little nap and by 9am they took us down to sub-level 2 for surgery. Momo and Julie went to the surgery waiting area and Bryan and I took her back. After about 30 minutes we felt like something wasn't quite right. Sure enough they had it in her chart that she was allergic to penicillin and she is not. Once we got all of that straightened out we met with the Dr. Syms, the anesthesiologist, and the nurses. After I met everyone I felt much better and confident in the hands I was giving her to. One of the nurses was pregnant and due in November so I felt like Courtney had a little friend in there with her!

After the doctors left I put on my marshmallow suit and walked her back to the OR. I could feel the emotions brewing, but when I laid her down it almost felt like I was laying her down for a nap at home. She turned her little head to the left, started sucking her thumb and that was it. One of the nurses walked me out to the waiting room where I met Momo, Bryan, Julie and our friend Kim aka Wright. Just about all of us cried.

The nurses were great. They called when the surgery actually started which was about an hour after I took her into the OR and every hour to two hours there after. It was a long wait. We talked, ate, slept, played a word game, and laughed to get us through. The last hour was the worst. I became anxious and had an overwhelming desire to see her. First the audiologist came out with two big boxes from Cochlear Corporation and a koala bear (complete with a CI). He told us Dr. Syms was finishing up and she did great. He also tested the implants and had a response in both ears. About 15 minutes later Dr. Syms and his nurse came out and said everything went great as planned. RELIEF!! A few minutes later the anesthesiologist came in and escorted me back to recovery where I could finally see my sweet baby girl.

She was definitely out of it and didn't look like her, but none the less it was good to hold her. While I was back there they needed to take two x-rays. During this process her IV ripped out of her foot, but she seemed to be okay and didn't need to put it back in at that time. She threw up a few times even after a dose of fenagrin which is when the craziness began.

At first the nurses were tyring to convince me that it was normal to be throwing up and it was just phlegm. I wasn't buying it. I remained calm and they eventually took us back up to the 9th floor where she continued to vomit after yet another shot of fenagrin. About an hour later she started to run fever so they decided to admit her to Children's. Thank goodness. She had a difficult time with the medicine and anesthesia that made her vomit which in turn made her dehydrated and run fever.

Since she became dehydrated they had to put another IV. After a LONG night and a lot of fluids she bounced right back! We were thankful we were admitted because she bled more than normal in her right ear and had to have the bandages changed. She cried more during that than redoing the IV - it was awful! Luckily by Saturday morning she was almost back to her normal self! Dr. King, Dr. Syms associate, came in and gave us a thumbs up to go home. By 12:30pm we were on our way home.

I am so amazed at how great she is doing. My mom and I gave her Tylenol not because she was acting in pain, but because we thought she had to be. I know I would be if someone cut into my head, but she is doing awesome! I haven't allowed myself to even think about activation day, and now that I know she has made it through surgery, it is all I can think about! I simply can't wait.

Thank you all so much for your kind words, prayers and happy thoughts. We couldn't have done it with out them!

Tomorrow's the Day

Okay, it's official I am nervous and freaking out! I know in my head everything will be fine tomorrow, but I keep envisioning handing my baby girl over to complete strangers. I am just not sure how I am going to do it! At the same time, it is so exciting how close Courtney is to hearing. We have planned her birthday party for October 11th so she can hear us sing to her. A special request by her daddy.

I will call those that I can and the rest please check back for an update tomorrow night or Saturday morning. The boys will be well taken care of with Bobpa as they are headed off to the county fair tomorrow. Thank you Momo and Bobpa!!

We won!

For the past two weeks we have been battling the insurance company to cover simultaneous bilateral cochlear implants and we finally won!! After involving my husband's employee benefits manager, more than one UHC manager, the UHC account representative for my husband's employer, Let Them Hear, our doctor, family and several friends we appealed and the decision was overturned. It was definitely an emotional rollercoaster!

In the end Baby Girl will get her CIs as scheduled on September 26th. Yahoo! Thank you all for your many prayers and positive thoughts. Mom...I can't thank you enough for everything you did from daily phone calls to research to just being a mom. Thank you!

Denied

We are on quite the journey! I prepared myself that we would probably have to file an appeal with our health insurance to cover simultaneous bilateral cochlear implants. I did not, however, think that they wouldn't even cover one! I have a plan. I know what we need to do, and will do it. She will have her surgery on September 26th and they will cover both of them that day. I will fight, I will advocate.

What I don't understand is the justification for denying the coverage: Sensorinueral hearing loss is not a medical condition. As for the simultaneous bilateral portion, that is because they claim that the treatment is not consistent with published clinical evidence. Bilateral CIs are unproven.

Not a medical condition? I just don't understand!

70dB

Last Thursday Courtney had a hearing test. I was a little apprehensive about going by myself because the last time she had one was one week after we found out about her hearing loss and it was all I could do to keep myself from sobbing. I knew she had been hearing somethings, but I didn't want to get my hopes up.

At our session at Sunshine Cottage on Tuesday we discussed the speech banana. For those who don't know, the speech banana represents the range needed to acquire speech. I have included a sample audiogram that illustrates the speech banana and other levels of hearing. Normal hearing is in the 0-25dB range which would mean that a person could hear everything from 25dB until 110dB and beyond. Each level of hearing loss has a range and Courtney, being profoundly deaf, is in the 90 -120dB range. When she had her ABR done she had no response in either ear at 125dB. She can't even hear herself let alone a jet plane!

Typically, with hearing aids you can move up about 30dB's. It is also much easier to hear the low sounds (staying to the left on the audiogram) such as the hum of a lawn mower, or for speech the "mm" and "baba" sounds. Courtney, with her hearing aids on, was able to respond to speech sounds at 70dB! This explains why she heard a vacuum, hairdryer, bells, and occasionally, Bryan's voice. After we celebrated her hearing a sound in the booth, she would ever so sweetly look up and smile as if to say, "Mommy, I did it, I did it!" It was amazing. She went up by over 50dB, way to go girl! She has also been making a lot more noises, including "mmm". Most likely it is because aided she can hear herself making that sound.

As you can see, she is only at the 70dB level which isn't enough to acquire speech, but does means she is still a prime candidate for cochlear implants. The hearing test confirmed our decision to do simultaneous bilateral cochlear implants and the fact that she is hearing something. This is stimulating her brain and laying the pathways for when she does get her CIs. Basically, when we turn her on, it won't be the very first time for her to hear anything at all. They think that it will help her to be more successful with the CIs when she gets them.

So, if we can get through to the insurance company to see if they will pay for bilateral simultaneous CIs, we will be good to go!

September 26th

The surgery date has been set! September 26th, 7:30am at Methodist Hospital in San Antonio. We decided to go ahead and do simultaneous bilateral CIs. Bryan and I have agonized over what the best thing for Courtney would be, and we feel confident that doing two at the same time is what is right for us. I almost feel relieved to have made the decision and can move forward and mentally prepare for the 6 hour surgery.

We have been attending Sunshine Cottage regularly and have a new Parent Advisor, Julie, who is wonderful. The past few sessions have been about CIs, audiograms, and the infamous speech banana. Bryan and I both still feel so thirsty for information. I honestly don't know how anyone could get through all of this without the help of a school such as Sunshine Cottage. What a blessing to be so close to such an amazing place!

Jeremy will start kindergarten on Monday. I can't believe it! He has been counting down the days and absolutely cannot wait! He and Bryan had a father son weekend and went to Houston to see an Astros game, went swimming, school clothes shopping, and no trip is complete without a visit to the Bass Pro Shop. Thursday is meet the teacher night so we will go, drop off his school supplies, and meet his teacher.

Logan is our little stink! He is nothing but trouble! He is talking more and more and still loves to play baseball. We go back to Dr. McCash on September 2nd to find out if the 2 hour patching prescription is working. I sure hope so because I can't imagine trying to get him to wear it any longer!

Bryan and I are doing well and certainly keeping busy! My company will be doing some work out in California for at least the next 3 years so we are very excited about that. I am definitely enjoying being able to stay home with Courtney Tuesdays and Thursdays, but I know next week will be a rude awakening for all of us having to get up so early for school!

Poll

On Tuesday we returned to Dr. Syms for our CT scan results. Everything seemed to check out normal and Courtney is definitely a candidate for cochlear implants. We discussed the risks and benefits and once again came across the gut wrenching decision as to do one or two.

For parents of those who didn't have the option to do simultaneous bilateral CIs and could do it again would you do one or both? For those parents who are waiting until 12 months to do a CI, what would you do? And for those individuals who have gone from one to two, do you recommend it?

Any feedback would be great!

Ring, Ring, Ring!

Yesterday we saw Courtney, officially, turn in the direction of sound! Little Miss Sassy Pants turned to the sound of two different types of bells and one set of small symbols while we were playing a listening game at Sunshine Cottage. I was so focused on what my part of the game was - to point to my ear and say, "Mommy hears a bell. Ring, ring, ring," that I almost missed the moment! I never seem to be one that gets emotional in the moment, but when I reflect back I realize that that was the first time we have ever seen her respond (turn her head) to any type of sound. Hope!

We need that hope because we have made the decision to do simultaneous bilateral cochlear implants pending the CT scan results next week. We will keep you posted!