Kyleigh Update and Another Ear Problem

So today Kyleigh was able to meet my students as I went by the school to drop off paperwork and say hello. Afterwards Kyleigh saw her nutritionist at the home. According to her records since September 10th, Kyleigh went from 67 cm to 69 cm in length and from 13 lbs 2 oz to 13 lbs 13 oz in weight. This is absolutely amazing considering the turmoil she has been through since September 10th. She has had the tube replaced in her left ear, a severe ear infection in the left ear, formula change, and eating difficulties.

She went down for a nap around 11am and awoke around 11:25 with a screeching scream. There was a quarter size amount of blood in her crib under neath her head. I was completely astonished because she had recovered quickly from the last surgery on 9-22 without any blood and since the last ear infection, had received an all clear by the ENT surgeon this past Monday. We headed straight for the pediatrician's office. They said she definitely has a gelatinous blood clot laying over the opening of the tube. There is an "unknown" explanation as to why it began bleeding to begin with. Assumptions are that she had an infection that was building and the pressure caused a rupture and bleeding. Another assumption was the unexplained. Nice, huh?

I'm so tired of getting no clear cut answers for her health. The doctor is new to the practice and very nice. He said we should question the need to wait on cleft palate surgery if indeed the cleft palate is going to continue to play a role in the ear infections. He also said we should switch ear drops to Ciprodex today and see her ENT either Monday or Tuesday, latest Wednesday to have them look at the clot.

Sounds easy enough except when I call for her ENT doctor at Duke I'm told he is "out of the office" this coming week "sorry". WHAT???!!! He is always "out of the office". Supposedly at a conference this coming week and they would get back to me if his associate could see us. They call back and his associate will be out as well but said since she has seen the pediatrician and is on an eardrop there isn't much else they would do at this point so just schedule to see Dr. Kaylie when he returns. Again.....WHAT????!!!! So we are scheduled for October 27th, never mind that she is supposed to be seen by Wednesday at the latest. Why does one doctor see this as urgency and the doctor that can help us is out of town and his associate says, "it can wait". Would everyone just get on the same page----PLEASE!

So I've put a call into the pediatrician asking that they get us in with the local ENT for a consultation visit and 2nd opinion next week. I am still waiting to hear from them regarding this appointment.

After the appointment Kyleigh went by the daycare to say "good-bye" to her wonderful teachers and give hugs and collect belongings. For those of you in the dark about this, I am on a medical leave of absence to care for Kyleigh so we have taken her out of daycare for the next 6 months in the attempt to get her back on track including cleft palate surgery and recovery.

That is all for now..stay tuned for more updates.