The evaluation is underway.......

Have I ever told you all how much I HATE cold & flu season and germs in general!  Of course, I have, and now I have even more of a reason..........

Unfortunately Hannah caught a nasty virus that lingered for two weeks.  I took her to the pediatrician on Tuesday to get her checked out because I thought maybe she was developing croup.  The doctor didn't like the way she was breathing and she also had lost 6-7 ounces from the last time she had been there which was only a week and a half prior to Tuesday.  She called Hannah's GI down at Children's, and she scheduled for Hannah to come in for some blood work, a chest X-ray, and an appointment.  At the appointment it was decided that Hannah was to get a NG(nasogastric/feeding) tube in her nose due to her weight loss.  The poor girl is now only 12 lbs 12 ounces at 7 1/2 months old!! She doesn't have any reserve for weight loss when she doesn't eat well because of being sick.  Also, her disease is progressing and so is her appetite.

We finally got into our room after waiting for over 5 hours due to the fact this place is packed right now with flu and RSV.  The best part about the wait though was we did get our own room which I would have waited for all day if I had too;)  By this point, Hannah already had enough, but since we were here and admitted we all decided it would be best to get the evaluation process started, and get the testing out of the way.  All I have to say is she is one unbelievably STRONG little girl.  A chest X-ray, abdominal ultrasound, EKG, echocardiogram and two blood sticks later she finally got to go to sleep for the night!!  Poor girl was soooo exhausted and so was her mommy!  That is why I am not writing this post until tonight!!

They started her tube feeding last night which is when she will be getting them.  Every night from 9p-5a, she will get continuous feeding of formula totaling 8 ounces over an 8 hour period.  During the day, she will still take her bottles by mouth totaling 14 ounces.  So the goal for the day is to get 22 ounces.  Last night she tolerated her first feeding very well.  So as long as she does well tonight we get to go home tomorrow!  Keep your fingers crossed she keeps it down!!

We have talked to many people while we have been here, so the evaluation is well underway.  As much as I do not want to be in here right now with my daughter, it worked out well since we got at least half of the evaluation out of the way.  The testing is the worse part!  The list of blood work this poor girl needed was insane.  I have never seen anything like it, and I never knew you could take that much blood out of a child in one day!!!  She was strong though.  Don't get me wrong, she sure did her fair share of screaming, and she definitely has the "white coat syndrome" but calms down right when they are all done messing with her.

For me, I had been staying fairly strong until the doctors did their rounds this morning.  If you don't know what rounds are it is a group (about 10-15 today) of medical professionals (doctors, nurse practioners, residents, med students, etc.) that go to each room and go over the patients history, reason for stay, and plan of care.  When they got to our room, I was asked to stand there and listen.  Listening to them all talking about it hit me pretty hard. All I could think was, "this ALL happened over the past 5 months!"  It was heart wrenching to know that they are talking about MY daughter.  It took everything out of me not to cry while the med student did his run down on Hannah's situation.  (By the way, he actually did an excellent job!) Like I have said once before, I felt like I was in a television show!  Every time I think about it or talk about it I start crying.  I even said to the doctor when they were done, I don't like being on the other side of this one bit.  He told me I was doing great and it will be okay.  There is a good reason why I am here on the other side.  He is right too!  I always thought it was such an interesting and "cool" job to be a part of that medical team helping people, but to be the parent it is a whole different world.  It is not interesting or obviously "cool".  It is terrifying, heart-breaking, and you feel absolutely helpless.  To see both sides, I now know what it means to truly be a great nurse!  There is a reason why these parents and patients you get so annoyed with for asking so many questions or (I hate to say it but you all know what I mean) are being needy and annoying always asking for stuff.   They are terrified, their heart is breaking for their child or their own situation, and feel absolutely helpless and that you have lost all control over your life.  That is how I feel every day.  But somewhere in me, I do find the strength to get through each day with a smile.  A lot of that strength comes from my husband, son, and Hannah, but it also comes from family, friends, and our wonderful pediatrician!  Without all of you, that read Hannah's blog, we would never be able to be as strong as we are right now.  Just to send me an email or text is helping us more than you even know.  It shows us how many people are praying and pulling for our little girl.  With all of your strength and prayers, she will pull through each phase of her journey and finally come out ahead!

I will keep everyone posted if we get to head home or have made it home tomorrow.  Please pray that Hannah has a good night and this is the last hospital stay until the big one!!  Hugs and kisses from Hannah and once again thank you all for your continued support.

P.S.  If these cleaning ladies come in one more time to try to change the stupid trash at 10pm at night (while Hannah is sleeping mind you) my patience is going out the window!!  Come on, it is 10pm.  Really, who cares about the *$%# trash!!