Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Wednesday, September 19, 2012

Talk about appointments and a cute video

Above is an adorable video of Whitney saying the names of everyone in my family!  We are excited to visit them all this weekend!  Keawe has a two day break from school then starts the fall quarter on Monday!  He is studying hard for his final exam tomorrow.  So we are taking this opportunity to drive the 5 hours back home, because the next time will be around Christmas.

Today we had our appointment with the pediatric surgeon.  Basically to just make sure we are set up with (a good) one and that they have Whitney in their records in case anything were to happen.  It went pretty well!  We waited a while in the waiting room though.  Even though it's a children's hospital, they are also a regular hospital so all the surgeons are in the same clinic.  It felt so weird/different being in that waiting room compared to PCH because there were so many old people and only a couple of kids.  So it was not kid friendly, lots of people coughing and they smelled like smoke, lots in wheelchairs, or fat or super skinny and most in were really old. 

The ped surgeon said she has experience with CDH surgery and ECMO patients,  and she has experience with g-tubes although it's the GI Dr. that replaces them (opposite of Phoenix).  She seemed very nice and knowledgeable. She seems to understand my concerns and such.  She wants a new chest and side view x-ray of Whitney so if I can't find a current one then we'll do that soon.  Whitney only got upset (aka severe anxiety) twice and didn't even throw up! I'm glad she did so well and that I could easily pay attention to the Dr.

Then we went to drop off a prescription in the hospital's out patient pharmacy because it's a close one that does compounds.  Whitney's prevacid is a mixture of the med and water so that it goes easily through her feeding tube.  Parking was terrible! Why they don't have a parking garage is beyond me, if fact the over flow parking is kitty corner across the street!  The hospital is so old looking!  Especially compared to the nice and new, spacious, bright, updated Phoenix Children's Hospital we are so use to!  And like I said earlier, it's not just for kids, so there are a ton of old people there.  Anyways, we go up to the pharmacy and Whitney sees some patients and totally freaks out.  When we got in the tiny pharmacy room she threw up.  They said it would take an hour to fill the script and there was no way I was waiting in that place for that long and no way I was going to try to park there again.  So we finally headed home.  

On the bright side Whitney did have a pretty good day and so did I because I went with some friends to the Relief Society meeting for ice cream and a fun game.  It was a super busy day and I didn't have time to pack but at least everything is washed and clean.  

So last week we went to a WIC appointment to talk with a nutritionist because Whitney has a feeding tube/ has medical problems.  I was really worried that she wouldn't understand why Whitney doesn't eat or would give me unwanted advise.  But as I told her a bit of Whitney's medical history she totally understood everything!  I was very relieved and felt comfortable talking with her.  She knows how babies have an instinct to eat at first but then later it's a learned behavior and that Whit never learned how to eat.  And when she did eat, it was painful for her because of reflux and gag reflex.  Because she was intubated (and suctioned) for so long as an infant.  She understood why I couldn't breast feed or keep up pumping.  Whitney is afraid of food but we are still trying to get her to eat and drink and that it is a super long and slow process that could take years.  Talking with her was very reassuring and she didn't make me feel like I did anything wrong, or that anybody else did anything wrong with her either.  I told her about all the procedures and test done on Whitney to help her insides work and feel better.  So it was a long conversation, while Whitney played happily on the floor with the toys, she said I know what I'm doing and that Whitney will still get the food checks.  I know it's hard for most people to comprehend a child not eating for whatever reason but I try my best to explain.  Every child is different and I know lots of kids (now) who need feeding tubes to survive.  Whitney would starve to death if she did have her feeding tube.  Anyways, it was just nice talking to a stranger who understood my/our battle.  

Which also makes me think about the relationship between a Dr. and the child's parents (aka, me). (This is mostly reflecting on the past). It's a very difficult relationship in many ways.  Sometimes we don't understand why this thing is happening to our child and when the Dr. describes it, it's hard to believe.  You don't really understand the recommendations until you do your own research.  Even then, it's your decision and everything is up to you.  Whether it's about a medication or a test or a surgery, it's a hard choice to know what's best for your child. You may always feel guilty that you didn't do something or should have done it earlier.  Or glad that you didn't do something the Dr. recommended.  A lot of times, it's the parent that has the idea about something that will help their child and they have to push and fight the Dr. about it.  It's also a relationship you never hoped or wanted to have but on the other hand, are so grateful for it.  Just remember to pray always and count your blessings.   

I just love my daughter to pieces and can't get enough of her sweet, fun, and contagious laugh and smile! 


  1. What a cute video and pictures! I'm glad your meeting with WIC went well. Those meetings are so scary for me. I feel like the wrong person having a bad day can just deny you because of anything. Hope we are well enough to see you soon. Travel safe!

  2. How cute is she!! Hope you are doing well and getting settled in.