Update 9/29/11

Well Maddie Kate will be 4 weeks old tomorrow.  Can you believe it?  Time sure has flown by.  Well we have a lot to update today so this will be a long blog.  Bear with me.

On Tuesday 9/27 Maddie Kate had two appointments.  Her first appointment that day was with Infectious Disease (or ID).  What we found out from ID is that her neutrofil count (which is the part of her white cells that fight infections I believe) has dropped.  Her count was 1064 and they didn't want it to get below 1000.  So what they decided was to see what her neutrofil count (or ANC) was on her next set of labs to determine the next steps.  If her ANC had dropped again, they would have us discontinue the IV form of ganciclover and switch to an oral form.  The oral form is called Valganciclover and does not get absorbed into the blood as readily as does the IV form of the medication.  Because of this, her ANC should recover as her blood isn't receiving as high of a dose.  If it doesn't recover, they will stop treatment altogether until it does recover and then may or may not continue treatment.

I received a call from ID today stating that her ANC had dropped to 930 from the labs drawn yesterday and so they are going to remove her PICC line and switch her to Valganciclover (orally).  The home health nurse is going to come by at some point tomorrow with a colleague of hers to remove the PICC line and I am going to pick up my prescription for the oral medication tomorrow.  I will have to give it to her 2 times per day just like the IV form of the medicine.  She will continue on the oral form for the remaining 2 weeks of treatment and potentially longer if they feel it will help.  One of the ID doctors provided us an article on the effectiveness of treatment with Valganciclover, but I have not had a chance to read it yet.  We will follow up with ID at Vanderbilt in 3 weeks on 10/20/11.

Also on Tuesday 9/27, Maddie Kate had an appointment with opthamology.  Her exam was perfectly normal and the doctor does not need to see her again unless for some reason ID thinks she needs another eye exam.  So yeah! One less doctor to see!

On Wednesday 9/28, we had 2 more appointments.  One for audiology and the other was for the GI/liver doctor.  Her ABR exam with audiology showed that Maddie Kate cannot hear out of either ear.  Her exact diagnosis is Bilateral Profound Sensorineural Hearing Loss (google it).  She had hardly any brain response to the highest level of sound the test could do which was 95 decibals (as loud as a jackhammer).  Here is some general information I copied and pasted from a website about her hearing loss:

       Bilateral means that both ears have a hearing loss.


       Profound means that the hearing loss is 90dB or greater. This means that the child may not be able to
       hear anything softer than 90dB.

       Sensorineural means that the cochlea or auditory nerve isn't working correctly.

       A child with this much hearing loss may not be able to hear much, even with hearing aids. So he may
       not be able to learn to speak through hearing alone. He may benefit from using sign language and by
       reading lips. He may also be a candidate for a cochlear implant.

We will return to the audiology clinic in 3 weeks (also on 10/20) to have Maddie Kate fitted with hearing aids.  She will not be able to understand spoken words with this but may be able to hear some very loud sounds with it.  We plan on having her receive a cochlear implant, but she will not be able to receive one until she is 1 year of age per the FDA.  The hearing aid serves two purposes.  One is it will hopefully allow Maddie to hear some sounds so that her nerves continue firing responses to the brain and not sit idle for the next year while we wait on the implant.  And two, before insurance will pay for the cochlear implant, they require proof that the hearing aids didn't "do the trick." 

When Maddie Kate does get the implant, she will need extensive speech therapy to help her translate what she is hearing to words as well as to catch up with her peers.  I asked the audiologist if she would be able to hear normally after the implant.  Her reply was that yes she would but that it may be the low end of normal.  Many children after having the implant are mainstreamed by kindergarten meaning they are ready to join their peers like a normal child by kindergarten.  With us catching it so early and with me being able to stay home and work with her on a daily basis, we have no doubt that we can get Maddie Kate to this level by kindergarten.

Finally Maddie Kate saw the GI (gastrointerologist) doc yesterday afternoon.  The GI doc said that her bilirubin was still elevated being at 5.7 but that it was steadily going down which was a good thing.  She would like it to be around 1 (or 3 is okay while she is breastfeeding).  She expects it to return to normal levels in the next month.  Maddie's liver enzymes are also elevated which the GI doc said could remain elevated and could fluctuate over the next year or even longer as Maddie's body works on suppressing the virus.  So thus far everything looks right on track for where she expects Maddie to be right now.  We will see her again on 11/9/11.

Austin and I are handling the news just fine.  We new that hearing loss or deafness was definitely a possibility.  The news is disappointing, but is something that we can deal with.  We are very blessed to have a wonderful support group with our family and friends and to have the means for me to stay home with our children.  There are so many worse things that could have happened with a CMV infection so if hearing loss is all we have, then we are pretty lucky.  Please continue to pray for us as I'm sure this next year will be very trying.  As I look back on our lives thus far, I can see how God has helped prepare us for this time.  For example, I decided to become a teacher and taught for 5 years in inclusion classes that included students with special needs, Austin decided to become a physician, and the fact that we made the decision for me to stay home this year instead of returning to work.  I believe God led us down these paths so that we would be able to give the best care to Maddie Kate as possible. 

Jessica