"Faith in God includes faith in His timing." - Elder Neal A. Maxwell
August 14, 2014: "Ethan's treatment has made another little milestone or two. He gets to come off the IV nutrition today as his ng tube is now pushing food into his tummy at a full rate (though as I write this, he just threw up so we'll see). He also gets to come off the CRRT machine, which is the one that is doing his dialysis 24/7. Instead of the CRRT, he'll move to what's called hemo-dialysis or intermittent dialysis. That runs 4-6 hours daily instead of all day. Ethan will be grateful to have the additional mobility and not be hooked up all day as the tube does come out of his neck.
"Apart from being nauseous today, he's doing well. If he does well on the intermittent dialysis, we will get to leave the ICU in a couple of days and move to another inpatient room to prep for his T-cells.
"Grateful for progress! Always grateful!"
How far would you go to serve someone you've never met?
August 17, 2014: "Another day at the hospital. We are grateful to not be in the ICU anymore. Ethan is starting to sleep better, too. This picture is what Ethan is like much of the time he's awake (sorry, but it is a sweet picture; he's a bit glazed though). His neurological function was hit hard during his stint in the ICU and has had some trouble comprehending everything around him. The doctors are saying this is completely normal and should improve in a few days. For example, last night he was screaming that he hurt. When I asked him what hurt he said, 'I don't know.' He is also constantly saying he is cold, needs his blankets on even when they are on, complains of itching all over and reaching for things he shouldn't (most specifically his ng tube). Looking forward to the delirium to be over.
"On another note, kidney function is improving as expected. Any day now we are expecting his kidneys to start working. When that happens, he'll have to go a lot and in larger than normal amounts for a few days. Once this starts, they'll monitor everything and he could be off dialysis within three days of kidney function.
"Jen and Blake went home today so it's me and Ethan for a little while. It was nice to have them here for a few weeks. We are going to miss them. We already miss the other kids lots. Hopefully we'll be able to come home in a few weeks, too!
"I will say, if anyone needs directions around Seattle Children's Hospital, I can give you a complete guided tour. ;) "
August 19, 2014: "We had a few milestones made again today (Monday), a couple I am very excited to share: 1.) ng tube & neurological; 2.) Renal or kidneys.
"1.) Ethan is very annoyed with his ng tube. So annoyed that even with arm restraints, he's finding a way to either pull the restraints off or manipulate them enough to allow for enough bend in his arm to hook a finger in the tube and pull it out.
"Switching to neurological progress, Ethan began to respond more normally to questions and actually started to converse. We had a mini FHE (Family Home Evening) where we briefly talked about the power of prayer and the Atonement of Christ. I learned tonight that the last several days he's been having very strong and unpleasant memories come to his mind from when he was in the ICU. We reviewed that Jesus could help comfort him when he had those bad thoughts and feelings come. We said a prayer together and he seemed ok after that. Our activity for FHE was watching 'Cloudy with a Chance of Meatballs'. He hates movies but watched it anyway.
"Back to food. Ethan and I also talked about this ng tube and that he needs to eat in order to get it out. What a strong motivator that was. He then asked for Carnation Instant Breakfast and downed two swallows! For him this is outstanding progress.
"2.) Renal function is still improving. So much so , we get to skip dialysis tomorrow (Tuesday) as his urination has improved a lot since dialysis on Sunday and his levels are fairly balanced. They will skip Tuesday dialysis to see how his kidneys respond. But, even throughout the day today, urine output has been greater, though not as much as he needs to be completely off dialysis.
"Thanks everyone for your faith and prayers. I hope that you feel the blessings of heaven as we are constantly giving thanks to God for you good people who support us. :) "
August 20, 2014: "Ethan still has to do dialysis for a while. The kidney doctors said he is making lots of progress but his kidneys just aren't ready to handle everything on their own just yet. So dialysis 4x per week, here we come! That's the plan right now, anyway. If his kidneys recover sooner then obviously they will take him off sooner. We don't know yet how this plan will affect his ability to get his T-cells or the complications he'll experience with potential blasts returning. But we DO know that God knows what's best for each of us and we have to put our trust in Him. This is, after all, His work and His glory 'to bring to pass the immortality and eternal life of man' (Moses 1:39)."
August 21, 2014: "Ethan [is] enjoying a sucker after eating some food. We were blessed to have a day off from the ng tube, but he has to eat now. He's a lot more content this way. He'll still need to do the ng tube starting tomorrow but at intervals instead of all day. :)"
From Jen to Merrill, August 23, 2014: "Some encouraging words from Elder Packer. I love you and appreciate so much what a wonderful husband and father you are, and the compassion and strength you show as you take care of Ethan day in and day out. You are truly the best!
'You parents and you families whose lives must be reordered because of a handicapped one, who resources and time must be devoted to them, are special heroes. You are manifesting the works of God with every thought, with every gesture of tenderness and care you extend to the handicapped loved one. Never mind the tears nor the hours of regret and discouragement; never mind the times when you feel you cannot stand another day of what is required. You are living the principles of the gospel of Jesus Christ in exceptional purity. And you perfect yourselves in the process.'"
From Merrill to Jen, August 24, 2014: "My sweet wife...thank you for sharing that. It was much needed after a hard past few weeks and a very frustrating day. I am so grateful for you and all the goodness you bring to our marriage and family. God bless you! :) "