March 6: 2014 Answered prayers and a few new details
All your prayers for sleep were answered. Here's how... From just after 7:00pm until just before midnight, Edward was able to sleep on my lap. This break allowed Emilie to go home and tuck Henry into bed like he's used to and give her a well-earned few hours of freedom. When she returned, Edward transferred nicely and I headed home. The rest of the night was a bit rough but better than it has been. Edward's improved condition is due in large part to excellent nurses like Tawna, Catherine, and others who have helped get his pain under greater control. Catherine, for example, even tracked down Dr. Robertson in the operating room to get an order for more effective pain medication... bravo!
We would be remiss not to mention the fantastic auxiliary and volunteer staff here. Child life services have provided entertainment for Henry like doing fun science experiments with him, watercolor painting with him in the play room, and bringing an owl, a chinchilla, and even a Madagascar cockroach by to visit. Volunteers are also available to hold Edward, a service Emilie has been happy to avail herself of when she needs to do fun things like pump breast milk, walk around, brush her teeth, and use the bathroom. We're especially thankful for the help of family and friends. Nancy ("mommy" to Emilie and "Nani" to the boys) arrived last Wednesday and will stay until this Sunday. Later that night, my mom ("Grammie") arrives and will stay with us for another week. Even Ted ("daddy" to Emilie and "Popi" to the boys) was able to spend some time with us amid a couple days of meetings in Berrien Springs.
This help, along with that of several friends in the area have helped make this process much, much easier than it would be otherwise. A few notes of clarification on Edward's current treatments might be helpful. When we earlier said that treatment for Edward's opsoclonus-myoclonus ataxia (OMA) would be postponed until after his chylothorax resolved, we should make it clear that we meant that he would not be receiving IVIg (a 6-hour long infusion that cannot be done simultaneously with his current IV nutrition and other medication) until later. He is still receiving decadron (a steroid) through his IV twice daily. Even in the few days we were home between last week's hospitalization and this week's, we noticed a marked difference in Edward's eye movements.
Though we still see some opsoclonus, it is much decreased. This is very good! We neglected to mention that Edward is being given a drug called octreotide, which has been shown to help clear up chylothorax. He has been on octreotide since immediately after the chylothorax was discovered, and it seems to be helping. His chyle output today has been minute. This is a good sign, and has contributed to Dr. Robertson's decision to postpone the thoracotomy until Tuesday or possibly never. Here's how the postponed surgery will help: If Edward's chest tube output is as small tomorrow as it was today (or even less), and so on through the weekend, Dr. Robertson wants him to try eating on Monday. If, after eating, no more chyle shows up in his chest tube, then Edward's thoracic duct is fixed and will not need surgery! If chyle immediately appears in the chest tube, Dr. Robertson is inclined to go ahead with the surgery.
Several of you have expressed concern about the possible thoracotomy. We believe we may have described it incorrectly, or at least incompletely. Of course, when Dr. Robertson initially explained the procedure, we asked him about the ramifications of ligating the thoracic duct. He told us that the body finds other pathways for the lymphatic fluid, and that the loss of the thoracic duct does not have long-term problematic implications. Of course, one's gut feeling is that God must've given us this piece of anatomy for a reason, so it makes sense to try to preserve it! If Edward were producing copious amounts of chyle even after he stopped eating, surgery would be a much more obvious choice. As it is, Dr. Robertson and the nurses all seem impressed with how much the chest tube drainage has slowed down.
We are hoping--and believe it is at least possible--that Edward will not need further surgery. Of course, this means a longer hospital stay. And finally, in other news... I have been overwhelmed with the messages of sympathy from mothers and other understanding folk about the hardships of suddenly having breastfeeding taken from a mom and her baby. Thank you so much for your outpouring of love! Your messages have made me feel so loved, and have encouraged me in this difficult time. Pumping is going very well. Edward has moments of extreme frustration about it all, and that's hard for us both, but at least I can look forward to Monday! I'm trying to donate the milk to the hospital, although no one seems to know if or how I can do that. If you know of someone here in Grand Rapids who needs it, please let me know.
Once last sort of interesting piece of weird science: In nursing school I learned about subcutaneous crepitus (a condition where air gets under the skin and feels like rice krispies to the touch), but had never felt it in a patient. Today I was rubbing Edward's back and finally got to feel crepitus! Please don't be concerned. In a strong, wiggly toddler like Edward, it's not at all surprising that his chest tube could've been pulled this way or that since Tuesday and caused some air to get in under the skin. It doesn't cause pain, and in such small amounts the body eventually absorbs it. I just thought it was interesting.
NOTE: We've noticed that though we write in proper paragraph form, our posts invariably show up in a big clump (at least from what we can see). We have also lost all editing capability, such as adding italics or bold or embedding a link into our message. We haven't had time to contact the website managers about this, so I hope everything shows up normally for you or that if not, you forgive the unorthodox formatting.
-Kameron (more of the first half of the message) and Emilie (more of the second half, although we really do write these posts together) =)
Comments (23)
We will continue to pray for strength for little Edward and for you Emilie and Kameron.
Amen for answers to prayer... Our God is good! I personally have several other prayer warriors on my fb that are continually praying as well. I have been dicrete in everything, but I am being blessed myself from the out pouring of prayer from my "friends list"! We will all be even more blessed when you all have returned home and are able to attend normal Sabbath Services with us once again. May God bless you all; from popi's to grammie's on down to Henry and of course little Edward!
The website that you chose to use is very user friendly for those of us reading your blogs. Please continue to keep blogging and don't worry about format. Your English and medical background gives us a wonderful sense of what is happening and the progress post surgery. It was good to hear that after Nani leaves you will still have additional family support. Obviously a team effort! It takes a village to raise a child....or help a child to regain their health. I also have been blessed as I read other responses. It is wonderful being a part of God's large family. We continue to pray for God's healing for Edward while also keeping the rest of the family in our prayers that your health will also be sustained. May Sabbath bring its own special blessings to you. Love....
Our son, Caleb, age 10 has joined us in praying for "little Edward" as he referred to him in his prayer last night. Thank you for the updates. He is very interested to know how Edward is doing.
Thank you for the update! That is wonderful news! No more surgery would be great! Prayers will continue. Glad you have your parents and several friends in the area. We look forward to seeing Edward in church again whenever he can make it. His preciousness is missed. Your blogging is just fine. The information is what matters.
Dear Pastor and Emilie, we so appreciate your taking the time to keep us updated and with such detail. It gives us strength, hope and courage to see how God is working to answer prayers. So much good news and even though Edward may have to stay longer in the hospital, which I know means a little more hardship on the family, if it means he will not have to have any more surgery then that is also good news. We are praising the Lord along with you and our prayers for wisdom for the doctors, nurses and all caregivers will continue. What a blessing to know that they have services to even help to entertain the children! God is faithful.
My family and I continue to pray for your family. We have never met you, and yet the first thought in my mind this morning when I woke up was Edward, and I immediately prayed for him. I am so happy to hear that the chyle drainage has slowed and I really believe that Edward will NOT have to have surgery. Praise God for His watch care and love!
Joyce Richardson. Emillee dear, you are being carried on the wings of prayer for you by those who really care for your family. A wonderful heavenly Father is hearing these prayers. I believe in the power of God and the wisdom He gives us to make decisions on behalf of His little ones. Be at peace, The Lord Jesus has your back!!
Kameron and Emily, I just want to praise the Lord for all He has done!!! I have been keeping my "Revived By His Word" family up to date on Edward's condition and the prayers have just been heartwarming. So in addition to our prayers, you have hundreds of folks aroung the world praying for this precious son of yours, as well as for you and Emily. I have been forwarding some of the replys to your Mom, Kameron, and I hope she has shared with the two of you. God is so good to us and He stands by us constantly, leading and guiding us. I have absolutely no doubt that He is in control here and will see you all through this. Someday you will look back and see the greater picture and then you will understand just why God allowed you to go through this trial. He never makes mistakes and He is always on time!! Love you both so much and will not stop praying!!!
Praises for rest and rest breaks! Praises for grandparents and family and friends that can come and help, support, hug, feed you! Praises for child life and distraction from the overwhelming changes in routine for Henry! Praise for chyle slowing and the possibility of healing without additional surgery. Praise for the right caregivers who can champion for Edwards comfort! You remain in my prayers as Edward heals, as you learn how to best support his healing while the demands of life continue to pull you in multiple directions. God will provide your need.
Praise the Lord!!! Both of the prayers I prayed for you were answered...sleep and that little Edward would not have to face another surgery. God is wonderful! Will keep praying that the milkish fluid will clear up completely and no surgery will be necessary. Continued prayers are going heavenward for all of you, the staff, and the doctors. Thank you for your posts and, yes, they are coming through perfectly.
BREAST Milk Suggestion...A note to Emilie regarding her breast milk. You can freeze it in plastic bags and use it later. Get Lansinoh bags, bpa free, thick and don't risk spilling the milk when pouring. Can get them at any pharmacy or WalMart. My daughter-in-law has done this. All you do when you want to use it is let some hot water run over it till its thawed (a minimum amount of time) and then warm it to the temp you want to feed it to Edward.
Emilie and Kameron, we praise God for his continued love and care for you, Edward and Henry made manifest through the physicians and other staff at the children's hospital. We are happy to hear of the good progress that Edward is making towards full recovery. We thank you for your posts and now wish you a blessed and restful Sabbath. Love, Uncle Dick and Aunt Marcia
So, so glad your Mom and Dad could be with you through this difficult time. Nothing like Mommy hugs!
Thankful for answers to prayer. Thanks for letting us know through this wonderful page Edwards and your progress, for we pray for all of you. Hugs to all of you.
It's very thoughtful of you to want to donate the milk. You can contact the Mother's Milk Bank at Bronson in Kalamazoo. I can give you the number if you want. I will tell you that they will not take the milk you've pumped prior to contacting the bank and you have to get blood testing and answer a health questionnaire and they ask for a minimum of 200oz over the course of your donation. HDVCH gets their milk from Bronson. I would just recommend freezing it like someone mentioned in an above comment. Glad to hear things are looking up for no more surgery! God is good! I will continue to pray for Edward and the rest of your family!
Just a note regarding the formatting: I think the formatting appears different due to viewing it with different devices. I've noticed that when I look at the page on my iPhone, your update posts appear to be all in one long paragraph (or "clump"). However, when I view the update posts on my desktop PC, then I can see separate paragraphs. Thus, your efforts at formatting are not for naught. I love you all, and am continuing to pray!
You two are dear to keep everyone posted on Edward's condition, and we will continue to pray that all of the positive news continues. Don't worry about the format, etc. We didn't even notice. Edward is definitely a trooper, as are the rest of you. Keep up your courage. Have a restful Sabbath, if possible. We continue to send much love.
We are so happy for the good news! We'll continue to pray that Edward will not need the surgery. Have a blessed Sabbath! Love to all of you from both of us.
So happy to hear the progress of the thoracic duct issue and the decision of the surgeon to hold off on the thoracotomy.....ongoing prayers for Edwards continued healing and for courage strength and peace from on High for Emilie and you. Happy Sabbath
We will pray for no more chyle output and continued healing for Edward. So happy you have family in town for support. May you all have a blessed Sabbath rest!
I know its hard to stop and write, but keep the updates coming!!!
May God give you peace and rest. Becky Koeppen