Sunday, August 1, 2010

Saturday in the Hospital

Dear Family and Friends:

We went home very late last night from the hospital and were ALL up here today.  Thanks to the Riesberg's for keeping Emmitt and Eli last night and thanks to Gremmy and Papa for coming back into town today to help us with the boys.  After picking the boys up today, Claude took them for haircuts, we had some lunch, packed a bag of movies, books, etc. and headed up to the hospital.  While we were there, we visited the library, read books, and watched several movies.  Although they got a little restless, I'm glad that they were able to see Emory and that at least Emmitt could gain a little more understanding about what is going on. 

Upon our arrival today at the hospital, we talked with the nurse and the "fellow" about Emory's condition.  They think he is doing better, but mommy and daddy aren't so sure.  He does tend to throw up when they stop the feeding tube to feed him with the bottle, so thankfully the nurse is not going to give him the bottle today since that seems to keep more food in him and to keep him calm.  That is what my "mommy gut" tells me to do anyway, so I'm thankful for a nurse who sees that as well.  He is breathing at about 65 to 75 or more breaths per minute.  In addition to increasing his lasix, they have also added another diuretic called aldactone that will help with his potassium levels.  We have yet to see how these two drugs will affect his calcium level, which is so important in regards to the DiGeorge Syndrome.  In a nutshell, Emory is not necessarily doing worse but he also has not had a ton of improvement.  His weight is pretty much the same as when they admitted him into the hospital on Thursday.  But, we also don't know if his previous weight gain was from the formula or from extra fluid on his lungs.  We really don't have any way of knowing that.  Really, there are several issues going on, but the consensus seems to be that if we can get the heart fixed, that everything else will be somewhat easier.

They gave us the option to go home before we have the surgery.  They did say that at best case scenario, they would do the surgery the middle of next week, but it could be more like the end of the week.  This is due to the volume here at the hospital and the surgeons schedules.  They have 3 surgeons and then only so many CICU beds and so many "step down beds".  Let me clarify what I was saying yesterday.....Emory's case is critical and necessary; however, when it comes to heart issues and heart surgeries, his is a little on the milder end.  After talking with the charge nurse last night, we understood things a little better.  When we left the cardiologist office on Thursday, he saw the urgency for surgery very soon.  And, when we arrived here at the hospital, they agreed.  But, the cardiologist doesn't know the surgeons schedules and obviously don't know how busy things are here, so that is why we have this type of situation.

Claude and I both feel that it is necessary to leave Emory in the hospital until he has his surgery.  We feel that by doing so, he will be monitored 24/7, will have documentation of his throw up episodes, will have constant feeds so he can gain more weight, etc.  We've seen the actual attending physician (cardiologist) a couple of times, but not much.  We have yet to see the surgeon.  So, we are home tonight and have church and a birthday party for one of Emmitt's friends tomorrow afternoon.  After that, we will both stay at the hospital tomorrow night in order to try and talk to one of the surgeons on Monday morning. 

That's about all I can type right now.  My eyelids are heavy!  I will keep this blog updated daily and will post as soon as we know something about his surgery date.  Thank you for all of the thoughts and prayers as well.




  1. Twila, just wanted you to know that Steve and I have been in prayer for Emory since Steve got back from your parents' house. We pray God will help guide the doctors as they do surgery and Emory will soon thrive!
    Know you are thought of and prayed for as well!

    Be strong and courageous. Do not be discouraged, for the Lord your God will be with you. Joshua 1:9

    Steve and Judy Martin

  2. Twila, I am a friend of Kelly's from Flippin and just read about your family. You all are in my prayers!

  3. Twila, I am a blog friend of Harper's Mom, Kelly, and just read about your son.. I have Emory and you and your husband in my prayers..


  4. Got here from Kelly's blog. Part of the group that prayed so hard for Harper: we'll be praying for your son, now. Blessings on you and your family, Twila.

  5. I also came via Kelly's blog. I just wanted to let you know I will be praying for you all.


  6. twilla-
    came over here from kelly's blog.
    one of my sorority sisters had an 8-month old son go through a heart transplant at children's healthcare (in atlanta) last august after being in the icu for 3 months waiting on a heart. cab had cardiomyopathy from unknown origins. he is now a happy and healthy 19 month old little boy.
    i don't know why i'm telling you all this...i guess to say that i've seen a little boy {and his family} go through so much every day just waiting for a heart and then when it finally came, all the worrying afterwards. i'm sorry for what you're going through and i'm praying hard for your family.
    god bless!

  7. Dear Twila and family-

    Praying God's strength and peace for your family! He is faithful in ALL things.

    p.s. Came here via Kelly 's blog

  8. Found you via Kelly's blog! Know that we are lifting you in Cookeville, TN!!!!

  9. Twila -
    I hope you don't mind - I wrote about you on my blog tonight to ask for prayers for Emory.
    My dad is Steve Martin and you and I were friends many many many years ago (when we were 4 &5). I have a lot of memories of you and my mom sent me your blog and told me about your sweet boy. My little girl spent a month in the NICU - totally different issues but was very critical for a while and it was so hard. So I understand a little of what you are going through and I'm praying for your family!

  10. Twila and family,

    My prayer for you is that your faith will be stong at this time -

    My help is from Jehovah who made the mountains! And the heavens too! He will never let me stumble, slip, or fall. For he is always watching, never sleeping.

    Jehovah himself is caring for you! He is your defender. He protects you day and night. He keeps you from all evil and perserves you life. He keeps his eye upon you as you come and go and always guards you. Psalms 121

    Big Fat Mama

  11. Hi Twila,

    I found your blog via Kelly's too :). I wanted you to know that I am praying for your family and claiming health over your sweet little boy.

    I am a heart mom, and our little girl was diagnosed with DiGeorge as well :). I just wanted to encourage you. I know that our story is somewhat different from yours, but I am sure some of the feelings are similar. Our little girl had surgery at birth (3 days later) for an Interrupted Aortic Arch and VSD, and is doing very well...just turned one in June! We had our ups and downs last year and still struggle with completely surrendering her to the Lord at times, but we can only give Him the glory for how well she is doing now! I am believing that this will be the case for your precious Emory!

    We have had to keep our daughter, Anniston, away from crowds, but her immune system is pretty much normal now! Besides a small infection after her surgery, she has not been sick ONCE this year! No ear infections, no viruses, NOTHING except for maybe a runny nose at some point! Her calcium levels are now normal, and she should be taken off of that supplement soon. She has not said a word yet, but we are thinking that with the surgery, etc from last year, a little delay is expected. She is relatively quiet, but she does have the cutest voice when she decides to "talk"...still working on some of the basic consonants, but we are believing and claiming that they are coming! Her ability to understand language is wonderful, so that is super-encouraging. She is behind with her gross motor development because she had a stroke when she was four months old (very rare; fluke that it happened to us...nothing for you to worry about...not associated with DiGeorge), but she is getting stronger daily and will only be stronger and more determined later in life because of all that she has overcome!

    God deserves ALL of the glory in our story, so I just had to share! This verse has encouraged us immensely from the beginning: "The Lord will perfect what concerns us. Your mercy oh Lord endures forever." Psalm 138:8 Hope it comforts you as well.

    I hope I haven't babbled too much. I know every situation is different, but I wanted you to know that there is hope and that I believe you will have a wonderful story about Emory to share as well! I will keep praying for you guys and specifically for complete healing for Emory...will pray for Emory to keep food down well, that he will gain weight quickly, and that he will have a completely successful, hiccup-free surgery. Please know that I am here if you ever need anything at all.

    Much love,

  12. I came over here from Kellys Korner too and just wanted to let you know we are lifting you up in prayer over here in the United Kingdom. May you know His peace and may He be glorified in these hard times.
    Lots of love


  13. Hey Twila,

    I too, came over from Kelly's blog. I had to stop by, especially after she mentioned that your little guy has a heart defect.

    I'm a heart mom too. My son, Derrick, is 15 months old. He has had 2 heart surgeries and will have another one within the next few years. His condition is different than Emory's, but I wanted to encourage you. We serve a mighty God and he will carry you...always.

    We'll be praying for Emory, his medical team, and all of his family. The heart journey is a tough one, but it is an amazing one!

    Big heart hugs and prayers,