Monday, October 5, 2009

The Night Owl

So, it's 2 a.m. and we just walked into PICU to find 4 people at his bedside- always makes me a little nervous that something is really wrong. He keeps setting off his ecmo pump- because he keeps waking up from the morphine and versed sedation and moving around too much! Leave it to the anesthetist's kid to be hard to keep down so to speak. He is now on double the amount of sedation that he was on during day shift! I kept telling them that during my NST's while I was pregnant, he was always the most active baby they had seen for the day!

Good news we should be completely off the dopamine by morning and they will probably leave him on a small amount of epinephrine for his coarctation repair. His lungs are responding pretty well to the surfactant they gave him yesterday- allowing his lungs to open up more and ventilate better! He is on 40% oxygen and they are starting to wean down his ventilator settings to get him closer to being on a conventional ventilator!

His ng tube ( goes into his stomach to make sure his stomach is not filled with air so that his lungs will have more room to expand) is not in his stomach and they are not sure what to do because he is on higher doses of heparin to help with his clot which could make adjusting the ng tube very bloody! We don't want that! We'll see what they say about it in rounds. They are thinking of doing the coarctation repair before the cdh repair as he will need ecmo for the recovery period. We have heard from one other cdh family who also had a coarctation diagnosis- this was very encouraging to us! If anyone else out there has a child that was diagnosed with both cdh and coarctation and had a positive outcome- please let us know all the details about it! At Duke, they have not seen a baby with both of these diagnosis at the same time before and are trying to figure out the best order to repair things.

I should be discharged from the hospital in the morning- it doesn't seem right or fair to have to go home without my baby- but I am thanking God that he is still alive and doing better than expected at this point! I can't thank you enough for all the support and prayers! While I have not had time to respond often, I am reading every comment and they are making us feel so encouraged!


  1. I wish I could offer some help, but K just had CDH. However, my feeling is the doctors should be trying to contact a hospital that has had the two together and maybe they would be of some help.

    At one point, K was on such a great amount of drugs that our nurse told us it would knock out an adult for 4 hours!! And K was awake!!

    We continue to pray for Andrew!! And stay positive!

  2. Andrew sounds like such a strong baby! His resilience will serve him well as he fights through these surgeries. We continue to pray for Andrew and your family, thanks for the update!
    ~Beth Cole

  3. Becky and Gene,
    We are so very grateful for the good news about Andrew's day! He is such a trooper along with his Mommy and Daddy. The prayer chain is getting longer and longer. Congregations were uplifting your family in prayer yesterday and will continue to do so. Our prayer is that God's healing power will continue to flow throughout Andrew's body, and that your recuperation will be speedy. Love and Prayers, Alan & Jeri

  4. I'm so glad he is doing so well! We will continue to pray for wisdom for the doctors. We also continue to pray for the day you get to bring Andrew home. Aunt Katie

  5. I can't tell you how wonderful it is to hear such good news. God Bless all of you!!! Thank you so much for the updates I am at the computer continually watching and praying. Love you all!!
    Love Aunt Sandy

  6. This is good news, Jaime did not have coarctation diagnosis, but he was a preemie with hemophilia and that in itself was a challenge. My point is miracles DO happen, keep on believing! Andrew can be Duke's teacher, just like Jaime was in Cincinnati.
    Wishing you all the best!

  7. It sounds like Andrew is doing wonderful-especially given his circumstances! Oxygen at 40% gives him so much of a cushion! My Dakota was born 7 weeks early, with an infection (which caused her to come early) and breathed in meconium at birth-all complicatons that made the CDH worse than it should have been. She was put on ECMO for a short period and recovered nicely after that. Your Andrew will be a miracle-just like my Dakota!!!
    Mom to Dakota 12-25-2008
    RCDH survivor
    p.s. I went to do for law school! Go Blue Devils!!!!!!!!!!!!!!

  8. When I first read of the coarctation I googled it with CDH and found an article in a medical journal about it. Here is the citation:

    Congenital diaphragmatic hernia associated with aortic coarctation
    Journal of Pediatric Surgery, Volume 33, Issue 6, Pages 943-945
    P.Eghtesady, E.Skarsgard, B.Smith, R.Robbins, L.Wexler, W.Rhine

    I am sure that your doctors have access to google (and other better sources of information) but better to have duplicate information than not have it at all.

    Doug and I continue to pray for Andrew and send positive thoughts in your direction nearly constantly--and I mean that--I haven't gone more than a few minutes without thinking of Andrew since he was born. Also, I dreamt of him last night, but my own baby woke me up before it was finished so I didn't get to see how it turned out!

    We hope to hear soon about another positive day!

    Doug and Erica Marcoux

  9. I praise God for the steps forward Andrew is taking. It is so awsome to see him when you talk to him - his little movements just let me know he knows who his mommy is and loves her so very much! I praise God for those moments and continue to pray for the 3 of you daily, as well as everyone who enters his cardiac PICU room, that they may feel the presence and experience the power of God at work. I have prayed extra hard for you and Gene as you are discharged today and life begins another new kind of normal for you. The good news is each day brings Andrew one day closer to coming home. Love and prayers, Mom

  10. So glad to hear the good news! Being feisty has to be in his favor!

    Here's another case report of a success story with both coarc & CDH:

    Here's another that I don't have access to, but maybe you do through Duke?

    How soon are they thinking of doing surgery?

    Hoping your cutie pie keeps doing so well!!

  11. The day I was discharged was probably one of the hardest of our entire journey. I was not prepared for the overwhelming sense of despair that I felt walking out of the hospital without my baby. My thoughts are with you today and we continue to send prayers for you and Andrew!

  12. I had a hard time when I was discharged because I wouldn't be down the hall from Nayeli. Ask to see if you can board they usually let you stay in a family room for a couple of days. They did at UCSF. I am praying for you and your little Warrior.

  13. GO ANDREW GO! Fighting sedation is a good thing! It means he is TOUGH! M was a little bugger when it came to that! He seemed to think that nighttime was playtime when he was on ECMO too! One not so distant memory stands out in was nearing "nighttime" and he decided to party! And his ECMO cannulas COMPLETELY cut out (zero flow!)and then everyone came running!! Scary, but he stayed steady-rock steady....Then they said that was enough and he got started to get mega doses of sedation at night. And boluses on top of that as needed! He was saying "Ha ha... look how tough I am! Just try to keep me down!" Now it's Andrew's turn to try be that strong! :) Thinking of you and praying for you LOTS! Take care of yourself once you are discharged. I "kind of" did... Well not really. It's impossible to tear yourself away from your baby. When you are in his room or anywhere around the hospital, just sit down LOTS! That seems to appease the nurses and the husband :) It will then seem like to them that you are "resting"!! :) Love and prayers, L

  14. I can't tell you how many times during the day I come to the blog to see if you have made another post about Baby Andrew's progress. These updates have been so encouraging and really help me know how to pray for him. Thanks for taking the time to keep everyone informed. Andrew is such a beautiful boy and proving to be quite a fighter!!! Praying for your rest and strength and that God will bring into your path more families that have been through this same battle.
    Love in Christ, Ginger

  15. I am so happy that he is having such a good day!!! He sounds like he is not going to give up. He is such a little fighter. Y'all are going to have your hands full with him when you get him home. I continue to pray for your family. Let me know if you need anything.

  16. Good Afternoon to all of you!
    Hope today was a stable day for Andrew!

    Perhaps your phys. there could contact Childrens
    Hospital, PGH, PA to consult with the cardiologists there.

    As you are likely aware this facility consults with physicians around the country and the world.
    Their Cardiology Dept. is superb.
    Just a lot as you all try to gather as much positive info. as you can.

    Please have a peaceful evening!!

  17. . . . sure sounds like he is a tough little cookie! Becky, glad to hear that you are well enough to be "discharged", but know that you and Gene won't go far. I'm sure that the pups will be glad to see both of you, if only for a minute! Praying that Andrew had a good day, and is having a good night. Thank you both for the blog, know it is a lot of work to keep so many folks updated. You are in my constant thoughts and prayers.

  18. Becky and Gene: Please know how many people here in Maryland and Delaware are praying for your family. I share this blog site everyday to someone who is praying and wants to see how God is working. Believe, Lots of love and prayers, Richard and Terrie Strohecker

  19. Becky and's so awesome that Andrew is such a fighter! I can't tell you how much you are in my and Bryan's prayers. We love you and Andrew so much! I printed out your picture together and put one on our refrigerator and in my office at work. I'm so grateful for the support system that you have of encouraging CDH stories...I'm sure it means A LOT to hear from them, since they've been down your road. Every morning I thank God for Andrew and the huge miracle that he is. He's a trooper...much like you guys. Love you all lots! Sue

  20. Sounds like he is really a little fighter already! And Maybe he is starting to like the attention he is getting from his nurses and RRTs?? He is just adorable. You remain in our thoughts & prayers! Enjoy your new little man!

    {{{hugs}}} The McGuire Family
    Carter Myer's Favorite family =)teehee

  21. cameron was born rcdh had a stroke right after birth was airlifted to duke was on ecmo given a 10% chance to live dont give up the doctors are great and god is in control today cameron is 4 in head start as you would never know he had such a massive birth defect if you didnt know him at duke 4 months found out his stroke controlled his part of speech in his brain he was in the hospital last week for h1n1 wanted to give you words of encouargement didnt want to take the chance because of the virus good luck

  22. Becky, Pastor Ken and I continue praying for all of you and being so proud of the faith you and Gene have. We know that God is using the 3 of you so mightily! Lots of love.