Saturday, May 23, 2009


I'd like to say things are going fabulous, but they are not, don't get me wrong she's not horrible or anything, or maybe I just don't know what's "normal".

It has become evident that pain medicine only holds her through the night for about four hours. Every night she wakens just before three crying and usually bleeding and it takes me a good hour to get her back to sleep. Her feedings are going HORR-IBLE. Yesterday, I just went straight to pedialyte. Today, we are trying to cut down her volume and slowly slowly slowly work back up. The smell coming from her is atrocious, Matt says it's my bionic nose.....but the kids smell it too. Oh, well, vomit + blood + mouth bacteria= nasty nasty smell. What should I expect. Holla back if you have ANY experience in this avenue. Any long lasting crying/coughing/vomiting causes bleeding. We assume this is from the existing hole. I was going to show the drawings on here, but I can't seem to find what I did with them.

So, the hospital experience....I couldn't really give you any specifics of comparisons, except they validate The nurses we had experience with were extremely kind. There were difference with treatments and such and I think they are a little farther along on computerized charting. They had alot more going on in the evening hours for kids and you NEVER see that at Riley. We had a child life specialist come see her in the evening hours. And, have I mentioned that I enjoyed not talking to this student and that student and so on and so on. When I told them what formula Lillian was on, they didn't blink an eye....(Riley had some trouble with that and they are the ones who ordered it for her) They had her meds, oral nexium (which I was told is not available at Riley) The only bad thing I can really come up with, is they weren't very quick to call lights. I mean they answered right away, but sometimes it would take some time for the nurse to come. That will be on my survey as the only negative. I'm not sure, but I think all their rooms are private. WITH Bathrooms! It will be interesting to see how things evolve as we explore this new environment. ANY time a lead came off or a monitor alarmed they called into the room. This was nice but did become annoying at times. Though I don't know that it's altogether a negative experience. Parents are also able to purchase meal tickets in the gift shop and are able to get items off the "munch mobile" when it comes to the floors. They were also ready/willing and able when I wanted someone to sit with her a minute to get some lunch. (she's an onery girl taking out her IV and pulling off her splints, a bad thing when you want nothing in her mouth) Bottom line, I'm happy and feeling more confident each day in our decision.


  1. Michelle - it is no easy task you have right now and it must be difficult seeing your little girl attached to tubes and suchlike. I don't know what this is like not being a mum myself but I do know that the Lord has given me a heart to pray for Lillian. Hope she has a better night tonight and you get some quality sleep.

  2. I am glad your experience at this hospital is so much better than at Rileys. Can you just keep going to this hospital and skip Rileys all together? They frown on formula that THEY gave you?! How unorganized are they!?

  3. First, it sounds to me that your decision to leave Riley was the right choice. You are never going to find a place that will do EVERYTHING to your satisfaction. Otherwise, you would just stay home, right? Overall, it sounds like you are in the right place for Lillian's care.

    As for the pain meds, I'm sorry, but I have no answers. Marissa's pain has always been relatively easy to manage. The stink? Marissa was supposed to have really bad breath after her T & A, but it never came. Even without antibiotics. Go figure. So, again, I'm sorry but I don't have any answers in that area either. Just prayers.

    I hope you and the fam can have a nice holiday weekend.

    Prayers and hugs

  4. Sounds like you are in a better place. I don't know if you are, but your words sound, calm, cool and collected. Something I never am,lol, Sending prayers to Lill. Have a great weekend.

  5. Is this the other children's hospital in Indy or are you going somewhere else?
    I have to say that although I'd call our OVERALL WHOLE experience at Riley good/positive, there are many many many things that I could list as negative. I know what you mean about the formula thing. We finally just started buying it and giving it to them to mix up because they told me it would take 24 hours to get it. Um, sorry, I'm not screwing with his feeding because you can't get him the right formula! Well, here's hoping we won't ever be back! Glad you liked the new place!
    Hope Lil just gets better and better!

  6. Praying that she starts feeling better and that her feeding start going better! Poor Lillian and poor Momma! Glad to hear that this new hospital was a better experience for you!

    Hope you are able to enjoy your weekend some! HUGS!!!

  7. That's great that you were able to chose a decent hospital for your girl.I will pray that the pain and the feedings go better from here on out.