March 7, 2014: Edward will sleep better tonight
Last night after Fremont board meeting, Kameron visited the hospital and held Edward for a couple hours allowing Emilie to shower and whatnot. After he left around midnight, she and Edward endured another rough night together. Edward was receiving morphine every hour, and it was wearing off in about 45 minutes, so he would wake up crying over and over.
By the time Kameron and Henry came back late this morning, the anesthesiology team had conferred with Edward’s surgeons and oncologists and they had all agreed that it would be in Edward’s best interest to treat his surgical and chest tube pain with an epidural so as to target the area of greatest pain without filling him with such high doses of narcotics. Early this afternoon, Dr. Theleen installed an epidural catheter into the T7 (seventh thoracic) region of Edward’s spine. Connected to an external device with a very fine line, this epidural allows for continuous pain relief to be administered. While this won’t solve all of Edward’s fussiness, it will do a great deal to alleviate his pain. Also, Emilie was able to be with Edward when he was sedated for this procedure so that was a great blessing and a huge improvement over his surgery on Tuesday.
In other good news, we received a preliminary pathology report that showed no evidence of a particular indicator (no amplification of the n-myc gene) that would necessitate chemotherapy. However, the sample size of 76 cells was so small that the oncologists will run a another test on a bigger and better sample of just to be sure. Handily, such a sample is available because at the time of surgery we gave our consent to use the resected tumor mass for research purposes. So while we’re still hopeful chemotherapy won’t be in Edward’s future --and today’s conclusions supported that hope-- we probably won’t know for certain until early next week.
There were also a few non-medical fun things today. With Kameron and Henry at the hospital, Nani was able to make a run to the grocery store to get ingredients for a dish Emilie has been particularly craving: Tabbouleh. For those unfamiliar with Tabbouleh, it is a Middle Eastern parsley salad. And it’s amazing. If you’re really interested, the recipe is available on page 257 of the beloved “Apple-a-Day” Cookbook most Adventists have tucked away on some shelf in their home.
Also, Kameron held Edward for another couple hours this afternoon which gave Henry a chance for some Mommy time that has been a bit lacking due to recent events. Along with Nani, they went down to the hospital library and played with toys, put together puzzles, and read about koalas.
When Nani and Henry left early this evening, a volunteer held Edward for an hour or so which allowed Emilie to get her shower at a reasonable time and allowed Kameron to write up most of this post.
Note from Emilie: I just finished an enormous, piled-high plate of delicious Tabbouleh that my mom made for me (yum), Edward is actually sleeping by himself in his own crib and is not moaning in his sleep for the first time since his Tuesday, it’s only 8:00 and I’m already ready for bed, we’ve found out that it’s even less likely that Edward will need chemo, and best of all, it’s Sabbath... even in the hospital! Thank you for your wonderful uplifting messages and I hope you all have a wonderful Sabbath!
Also, similar to the text formatting issues we've had, now we can create a photo album but for some reason can't add any photos to it. Know that there are lots of photos to share and as soon as we figure out how to do so, we will.
Comments (20)
Your updates are greatly appreciated by all of us praying for you guys. My heart aches & rejoices with each post. Wes & I pray you have a peaceful Sabbath. We remember what those are like in the hospital, but joy can be found even there!
May your Sabbath be especially peaceful and blessed, dear friends. And may the Lord of the Sabbath, who healed so many people on that special day, be especially close to little Edward and bring him healing. With love, Gina and Clint
Amen. Sabbath rest to all of you.
I visited with Jim and Gloria last night and of course our thoughts and concerns turned to Edward and your family. Jim offered a special prayer for Edward and then for the whole family. I just want you to know many prayers are being said in groups and personally. I pray that you all will receive a special blessing this Sabbath..
I'm so glad to hear this! Praying for all of you! I will pray you get some Sabbath rest.
I am so thankful that Edward is sleeping in his crib without moaning, as I know those sounds of pain tear at the heart of a parent! Maybe, in addition to his epidural pain relief, his little body knows it is Sabbath, and time for a peaceful rest;-). I do hope, Emilie, that you are able to have a peaceful sleep as well. We love you all, and breathe prayers throughout the day for you. It brings such hope to hear the tentative good news that Edward may not need chemotherapy. Thank You Lord for Your continual presence in Edward's hospital room, and with this precious little family.
Edward's epidural must be of great comfort to you as well! May you all have the blessing of Sabbath rest!
Praying for a blessed Sabbath to you all. SO happy for the good news!
Praying he's sleeping oh so soundly (and you too Emilie!) as we wake up for our day here in the north. So thankful for the good news you've shared. Please keep the messages coming.
Praising God that little Edward is resting more comfortably. May the God of the Sabbath provide you each with His blessed Presence and healing rest today. Sending hugs...
Praising God for His arms around Edward, so he can sleep better. May the sweet presence of the Comforter bring to all of you rest in the Rest during this Sabbath Day. In prayer.
I praise God from whom all blessings flow. My prayers are with you.
I am thankful that you were able to have Tabboulah! During these tough hours our prayers are for your continued strength, Emilie. It is good when you are able to do even small things to get a bit of respite. Thank you both for keeping us informed. Your family is greatly loved. Please let us know if there is anything you need (or crave) we'd be happy to bring it!
Thanks for the updates!! I'm sooooo thankful there seems to be more pain relief now for Edward. I love Tabbouleh as well, so that's awesome your mom could make you some. What a blessing to have her there with you for a few days. Happy Sabbath to you all, and may God continue to strengthen you through this difficult journey. Love and prayers!
Dear Distant Relatives, I have been out of town having eye surgery and just last night arrived back home to read all about Edward and his family. Oh, my, what trials and agony you have all gone through!! But the latest update holds much hope and I add my prayers to all the others that have been posted. While I have never met Edward, I did have the pleasure of meeting his mom, dad and older brother. It is through his Nani that we are connected and I certainly do hope I get to see him one day. Until then, blessings to you all and prayers for a speedy and permanent recovery.
We add our prayers for Edward's complete healing and recovery. We praise God for His goodness over you and your family, and pray for peace, strength, and comfort as He leads Edward and all of you out of this storm. We also pray for wisdom over the doctors and medical teams that are assisting Edward.
Kameron and Emily, I am so very thankful that little Edward is suffering less pain. God is so good and I praise His name for every blessing that comes your way. I am so thankful that Emily's Mom could be there and I am envious of that Tabboulah! I absolutely love it. In fact, I have learned to make it using quinah. You are all in our prayers and I pray for a safe journey for Ikey tomorrow as she flies up your way. I am so glad she can be there. Having "Mother's support" is so important during these trying times and you have two wonderful Mothers who are praying mothers which is so important. Three texts that have come to me today are Job 22:21, Psalms 37:4 and Psalms 16:8. I have been claiming them for you two and I claim Jer. 33:3 and Psalms 60:15 for little Edward. We love you both and please know that you never leave our thoughts and are constantly in our prayers.
While you have never met me, I just want you to know that my prayers have been ascending ever since I first read about Edward. I have seen Kameron preach many times on 3ABN so I feel like I know you a little bit. We also prayed for Edward in our church this morning. I have been glad to see the answers to prayer so far and since we are dealing with the Great Physician, I look for many more. God bless all of you during this trying time.
I got to hug Ikey at church this morning..on her birthday. I'm sure her best gift is hearing good news about Edward. She is so anxious to help in any and all ways possible. Thanks much for the updates although your time is limited and demanded by many, it is so thoughtful and helps us all stay connected. During prayer time we viewed pictures of your dear family and all prayed for you. Sending much love and hugs, Aunt Connie
We want to thank you guys for all the information that you provide, so thankful that the hospital is so close, what a blessing,, sure praying for Edward's recovery, and Mom & Dad, and all the Dr.'s & Nurses. May God bless! You guys be careful on the road..