Discouraging News; Pushing Forward

Fair warning, this is a long one!

Just when we thought things seemed to progressing in the right direction, Princess Kyleigh has other plans. On Wednesday, Dr. Torre (the neo-natologist) told us that while Kyleigh has made great progress while she has been here, he feels she isn't progressing as well or as quickly as he would like. We felt that more comprehensive testing is needed to determine what might be preventing Kyleigh from eating by mouth and why she isn't as feisty as she should be. Resurrection is not a children's hospital so they are not equipped with the various specialists she would need for the testing. Our options where to discharge her and try to schedule all of the various testing she needs as an out patient or transfer her to a level 3 Children's hospital.  Discharging her would not only be risky, because truthfully she is not ready to go home, but would also take weeks to schedule and even more time for results before we even begin to start talking about interventions and plan of care. It was obvious to us the best option would be to transfer Kyleigh.  The question was where? Cue the dramatic music as the fight with the insurance company begins!!

Since all of our doctors have always been through Resurrection, it just made sense that the medical group we chose included Resurrection.  Me being the responsible father that I am, enrolled Kyleigh on our insurance the day after she was born and made sure she had the same coverage as the rest of the family.  After all, we have great insurance and great coverage.  As we began to realize this need for a transfer we of course thought of Lurie's Children's Hospital (formerly Children's Memorial). Our medical group had other ideas. They prefer either University of Illinois Hospital or Loyola University Medical Center.  Both places are fantastic hospitals but not want we wanted for Kyleigh. So my question to the insurance company was "What do I need to do to get her to Children's"?  There were 2 ways to possibly make this happen.

The first was to have Kyleigh's pediatrician write a letter of medical necessity stating that Children's has something that Kyleigh needs that the preferred hospitals do not. First problem, Kyleigh's pediatrician has seen her MAYBE 2 times because she is under the care of the NICU team.  The second problem, we don't know what Kyleigh needs yet to be able to say Children's is better than the other 2 hospitals....that's why we want Children's!  Ok no problem, there is another option right!?

The second option is to change medical groups for Kyleigh and choose one that includes Lurie's Children's Hospital and the doctors.  We knew that because we have HMO they would probably say that we have to wait until the first of the month.  Great! April 1st in quickly approaching so we can do that.  Oh wait, no we can't because they don't allow you to change medical groups while the patient is "In-patient status"!  The insurance company told me, and I quote "We can't do it while she is an in-patient because it WOULD SCREW UP THE BILLING"!  Now I know insurance companies are all about making money but to actually say to me that their billing is more important than my daughters best interest?!? Needless to say she did not like what I had to say after that and she was very lucky I was at work near children otherwise it would have been even more unpleasant for her!

Bridgette and I did some research and talked at great lengths about our options. We came to the realization that while our first choice isn't an easy option, it is not as though we are having to choose between a hole in the wall hospital and Lurie's Children's Hospital.  We have 2 amazing hospitals to choose from both of which would provide Kyleigh with excellent care.  So our plan is to have her transferred to Loyola and when she is discharged we will change her medical group and get her into Children's for the cardiac follow up and care.

Unfortunately that was not the discouraging part of this post.  On Thursday Kyleigh had an MRI which was done to be sent to Loyola with her.  We received the results of the MRI and the 2nd genetic testing yesterday.  Kyleigh's MRI showed that the myelination (coating/insulation around the neurons in the brain) is abnormal.  The genetic testing showed that there are abnormalities on chromosome numbers 3 and 7.  I will attempt to explain what all of that means but first, a little warning.  I know most of you reading this either have medical knowledge, wish you had medical knowledge, or pretend you do ( you know who you are) so PLEASE DO NOT GOOGLE CHROMOSOME 3 AND 7!!!!!! What you find will scare you to death and make you think Kyleigh has have every scary diagnosis under the sun!  That is simply not true.

First I will try to explain the MRI because that is a little easier.  The myelin on every ones nerve cells (neurons) is like the rubber coating on a heavy duty extension cord and the signals our neurons "fire" are like the electrical current in that extension.  Kyleigh's myelin is not as good as it should be.  I know that sounds vague and that's because it is.  At this point that's all we know until we get to Loyola and the pediatric  neurologists do more comprehensive testing.  So once we again we have an answer that only lead to allot more questions.  What I can tell you is that when the myelin coating is frayed or missing the neurons can miss fire or not fire at all, just as a frayed extension cord can spark or short out.  This can cause anything from a simple eye twitch to full on seizures (neither of which have been seen in Kyleigh) and everything in between.  So as with everything else...we have to wait and see.

Second is the chromosomal abnormalities.  Kyleigh has an omission (a missing section) on chromosome number 3 and an omission and a duplication on chromosome number 7.  We are told this is rare and that so far the doctors don't know what it will mean for Kyleigh.  In fact, the technology used to complete this test is only 7 years old.  What we do know is that the company that does this testing keeps a data base of the abnormalities they find.  So they are searching the database to see if anyone has has ever been found to have the same abnormalities.  No one has indicated that these abnormalities are life threatening or that they will drastically decrease her life expectancy.  Most likely it means that there will be potential problems in Kyleigh's development.  We don't know to what extent or in what areas.  I don't mean to make it sound like it is not a big deal because this is potentially a major issue in that Kyleigh's development may be greatly impacted and our life may change dramatically.  It is potentially devastating news.  However, it could also be nothing more than we are already seeing.  Most likely it is somewhere in between.  We will just continue to pray for the best.

Over the last couple of days Kyleigh has seemed to regress a little bit in eating by mouth.  She has only eaten a few cc's by mouth and has shown little interest in the bottle at all.  She has been gagging allot when the bottle is placed in her mouth and chokes a little bit when she does take any milk in by mouth.  Our theory is that they have recently added a fortifier to the breast milk to help her gain weight and that this either upsets her stomach or makes it taste different.  Since no one plans on doing a taste test, we probably will never know LOL.  In an effort to hopefully help Kyleigh calm down and relax a little bit, last night the doctors stopped the by mouth feedings for the next couple of days.  In less than 24 hours of stopping the by mouth feedings, Kyleigh is like a new little girl.  She was very alert today and "feisty" which is what the docs wanted to see.  She was interacting with nurses and mommy and daddy when we were there.  She stayed awake for an entire hour with us.  The nurses and NICU doctors all agree that the clearly trying to eat by mouth is exhausting for her and because she is working harder (her heart has to beat more often) to maintain a functional level of oxygen in her blood she just runs out of energy and needs to sleep.  Unfortunately, the cardiologist says this is not true.  We say, majority rules!! :)

So I guess the real update is that Kyleigh is OK.  She is stable and doing well.  She may or may not have allot more going on than we once thought but we are transferring to a children's hospital to hopefully get answers.

Clearly we chose an appropriate name for this blog....The Adventures of Princess Kyleigh continue!!!


Oh by the way, many of you have politely suggested that we have Kyleigh blessed or maybe even baptised.  Our plan was to have this done before any surgery took place, however, with the decision to transfer Kyleigh being made and the impending plethora of testing that will be taking place, we are having Kyleigh baptized tomorrow at the hospital!

Thank you all again for your continued love and support and especially your prayers! Please keep them coming.