Thursday, August 25, 2011

I hate having to think up titles for these things so I'm not going to anymore unless I can come up with something poignant. I think every single one of these posts could be called Rollercoasters. Today started off all right. Naya had a little dips in blood pressure over night but all-in-all, was able to maintain stability most of the day and they were able to bring her blood pressure meds down. She started to dip around 5:00 and went way down around 7:00. I should mention that from 6:30-7:30, we are not allowed to be in the room as it is shift change. Her nurse had to raise her meds up to maximum levels again to make her pressure go up to where it is at right now. I don't understand why this happens every single day. It kills me because they don't know for sure as well. Logic tells me that it happens because her heart has been working so hard all day that after a while, it just can't take it anymore and crashes.

Her lungs saw a teeny, tiny almost non-significant level of improvement today that was reflected in the C02 levels in her blood and they were able to adjust the vent levels a smidge. I almost wouldn't mention it but I am clinging to anything at this point. If she can continue to maintain a good C02 level, they could keep slowly weaning on the vent, which would also help her heart. I need her to do this. The one truly positive thing of the day was that she peed a lot both today and yesterday. We are not at negative fluid levels yet but getting closer. They are going to start her on a different dieuretic to go along with the one she's already on and see if it does anything. We need to get this damn edema off of her so her poor heart and lungs can get some relief. She may have a chance if we can do this.

As for myself, I had a pretty rough day. Dan and I are talking to the social worker here on a daily basis now and it's causing us to deal with things that we may not want to. It hurts to talk about the what ifs but I know it's necessary. My faith and strength got tested a lot by this today and it definitely affected my mentality  and I shut myself off a bit. I wish I wouldn't do that but it's the way I've always dealt with hard things that come up in my life. I feel a little bit better right now though, which is why I waited until this point to write this.

I do want to thank everyone for all the Words with Friends requests too - I couldn't believe how many people responded. (That also scares me because that means a lot of people are reading this and I am paying absolutely no attention to grammar or spelling. Sorry about that.) Dan appreciates it too and he says "keep it coming." My dad left today but Dan's parents came this afternoon. They took us to dinner at the best burger place ever called Umami Burger. If you are ever down here in the East Hollywood area, go there and have the Manly Burger (seriously, that is what it is called.) It is literally the best burger I have ever had in my life. Good beer and sweet potato fries make it the perfect place.

As always, please keep the prayers and positive thoughts coming. More pee, please! Thanks again for all of your support. It truly overwhelms us.

PS - This is Dan's way of killing time today. This is just one of the animals that watches over her in her bed.


  1. Sending my love and positive energy your way!

  2. Jamie -The inevitable will come, some day. Just not now! The doctors always tell you the worst for just in case. We have a Physician who heals. Naya is fighting. She feels your love.

    Love your children, your husband, and yourself as if one of you will not be here tomorrow. (without being weird about it) There will not be room for regrets and nothing can ever break your bonds.

    Thanks for keeping us updated. I was at SLO Little Theatre tonight. Heard a lady behind me talking about Naya. Prayers are going up all around the community.

  3. Jamie, I am a friend of your Dad's from Cal Poly and want you and your husband to know that our family's prayers are with little Naya (and all of you). My wife Pam also is also a part of a powerful prayer chain with everyone on it "working" for Naya!

    Our very best thoughts go out to all of you.

  4. Jamie,
    I am a friend of your parents from Chicago. Jane Stitzel has been keeping me abreast of baby Naya's progress. You and your husband and baby are in our thoughts and prayers. And I believe in the power of prayer! Diane and Rocco Guerriero

  5. Jaime and Dan,
    I knew your parents mostly through Jane and Stan Stitzel(and your Dad's brothers from life in E.P. when they were young). Beautiful Naya and you both have been added to my prayer list. We may not understand it, but God gives us only what we can handle; prayer is quite powerful; even if we don't get the answer we hope for He seems to know what is best. Learn to accept that there are things you cannot control no matter how frustrating, accept help from others, and always cling to hope. These are lessons I've learned since my husband was diagnosed with a serious, debilitating illness (he was given 6 to 10 years for the disease to take its course - that was over 17 years ago!). Yet there is still joy in life as God has blessed us with all we need in this situation as I'm sure He will for Naya and you both. We're praying for Naya's improvement and full health. Diana Berndt