Friday, October 16, 2009

Dazed and Confused... Wait, what day is it?

Sorry to be posting this so late and after such a long delay. The last two weeks have been two of the most restless of my life. A major contributor to this exhaustion has been getting up every three hours to clean supplies and freeze milk after Becky pumps. I guess we have had some of the true "new parent" experience after all.

Yesterday, the mediastinal chest tube was clogged and required suctioning to clean it out. That seemed to help it some but it started to leak through the dressing. It was a relatively quiet day for Andrew's roommate Harley as well though today was a much harder day for her family. Please remember them in your prayers as well. (Harley's blog)

Today started with a phone call from Andrew's nurse at 07:30. The news was that they were going to try him off ECMO again. He seemed to be retaining more fluid following the ECMO circuit change which is normal so we did not think they would try it this soon. By the time we walked into the PCICU, the team was assembled and waiting on blood to arrive in case they needed it. This trial was MUCH faster paced than the last. Ultimately, Andrew decided this was not his day to come off. He had a similar reaction to the last time but it was a much faster decline in his blood pressure. I talked to Dr. Jaggers an hour later and he felt Andrew would be better served with a slow drop in the ECMO flows. They want to pull off a bunch more fluid before the next trial so we will see how his kidney's hold up to more work. I am not sure when they will try again but I am happy with the plan to take a day or two when they do.

While I was not too surprised that Andrew did not come off today, the afternoon "trial" confused me some. When the ECMO team was cutting the flows on his machine this morning, they found a problem in the equipment that would not allow them to get all the way down to a quarter flow. The team quickly responded by opening more of the circuit which did reduce the flow nicely. Finding a problem in the machine resulted in a call to clinical engineering. Their team showed up with a replacement part around 3:00 this afternoon. Replacing this part required clamping Andrew off the ECMO again for a few minutes. Andrew did great with this five minute break. I am confused and not really sure what to make of his ability to hold steady so much better with the equipment change than he did earlier in the day.

The best news of the day followed shortly after the dressing over the mediastinal chest tube was soaked through and required changing. It turns out that it had a small tear and was going to require some attention. Dr. Jaggers returned to take a look and decided to pull the tube. I can't begin to tell you how nice it is to see something come out.

Well, I better wrap this up since it is time to pump again...


  1. Psalm 55:22
    Cast your cares on the Lord and he will sustain you; he will not let the righteous fall.

    Parenting is exhausting. So very good, you are taking an active role in "basic baby" duties. The little "every day" actions strengthen family cohesion.

    Perhaps biorhythm or inner comfort level (physical or hearing your voices longer) is a factor in Andrew doing better in the afternoon... Look to his hands--clenched or uncurled indicates feelings.

    We are praying for each of you and for both Andrew and Harley's continued progress.

    Love, Elizabeth and Larry

  2. Hoping you have a boring weekend (which means that Andrew is getting much needed rest) and that next week brings great news.

    I also visited Harley's page and left them a message. I hope that she's able to get a heart soon.

    You remain in our constant thoughts and prayers.
    -Brad, Kellie & Carter

  3. So glad to hear that a tube has come out! That's one down! :) We continue to pray everyday for you all. We hope that Andrew also has a "boring" (restful) weekend! Rest up little man! Love you! Sue and Bryan

  4. Andrew continues to climb the hill slowly. Having the chest tube removed is great news. You are always in my thoughts and prayers. Enjoy some quite time together this cool rainey weekend and try and get some rest. Hugs and kisses.

  5. So glad to hear that one chest tube is out and that the day ended on a better note. Now that Andrew knows he has a few days to rest we pray that he does just that for his next big day, and the 2 of you, too! Our prayer circles down here are ever enlarging as more and more people fall in love with this precious guy. So rest up, tell Andrew we love him, and have a good day together. In His time, all things WILL come together. Love you all lots! Mom & Tom

  6. Not knowing what day it is - this is typical and expected for new parents. Just wait! When Andrew gets older you both will still have those thoughts from time to time!!!! Glad to hear about the mediastinal tube being removed. We are thankful for Andrew's progress and continue to lift up him and the two of you in prayer. Our Love, Alan & Jeri

  7. You two are amazing parents, but I'm not surprised at all. Andrew is such a fortunate boy to have you! Praying for more and more development in his lungs, no clots, and no excess fluid, AND for you two to have peace and comfort.

    Take care!!!

  8. You guys are doing amazingly! I am sure Andrew is just as proud of his mommy and daddy as you are of him! Praying for slow and steady days - that was always our mantra! We also made it a practice to read him The Tortoise and the Hare regularly in order to illustrate our point to Charlie! :-)

    Pumping is far more work that most people give credit. My one little piece of advice that I found helped me is that I bought a couple additional sets of pumping equipment so that I did not have to worry about washing it right away. This allowed me to get through the night without traipsing all over the house and it expedited the process when I had to leave Charlie's bedside to go pump. I always hated to be away for any longer than necessary.

    Best wishes for a quiet weekend! Much love and prayers...

    Keep smiling, Patty

  9. Our dearest loves,
    Thank you so much for the update! We are so very sure you both are exausted and confused at times, bless your hearts. Praying this weekend will and be gentle and uneventful as well. Andrew has a wonderful team taking care of him - please get some rest. Love to our amazing and fantastic 3! Mom & Dad

  10. I am so happy to hear that the chest tube is out. It is nice to see one thing being removed from our babies!

    Much love and prayers!

  11. Fantastic news that one tube is out! So perhaps the countdown begins to the day when all the tubes are out and Andrew is breathing on his own. God's time, though, not ours. Hard to live with that thought I'm sure, but knowing He is ultimately in control of things is a blessing. We continue to pray for you and for the team of wonderful people at Duke caring for him. We have added Harley to our daily prayers as well. God bless all of you!! You are amazing people to remain as strong as you have and as positive as you have. We can learn a lesson from your resolve!!
    God's peace and love to you all,
    Tim, Donna, Alex, and Lawren

  12. Hoping for more days of things "coming out" rather than going in!
    As always, wishing Andrew (and you guys) the best! Try to get some rest now...once you bring Andrew home (someday it WILL happen), you'll get NO sleep! ;-)
    Much love and many prayers coming your way!

  13. Just a quick note as you all are so exhausted from the day to day as well as your total focus to Andrew. YEAH a tube out!!! Andrew we all want to reach out and hug you!

    Your parents are most amazing and how fortunate you are to have them.

    A peaceful week-end to all of you.
    Holding you in a warm embrace!

  14. I hope the tube stays out and that Andrew can kick that extra fluid! Get some rest!