"We are in the ER at Nationwide Children's hospital in Columbus, OH. Emri has another pnuemothorax. We are just so devastated. We are expressing our desire to get back to Hopkins, but I think we are going to have to place a chest tube here before any transportation is an option."
Nov. 19, 2:00 PM
"Emri is getting her third chest tube placed right now at Nation Wide Children's Hospital. We are told we will be transported back to Hopkins as soon as they feel safe about it all. We are just heartbroken and have never been wearier. We will most likely be pursuing a procedure at Hopkins that will be done to prevent future pneumothorax episodes. I will update more when I know more.
"Do not fear, for I am with you. Do not be dismayed, for I am here, I am your God, I am here."
This is the song were were listening to before Emri was taken back. God is working for our good. I am clinging to that promise."
This is the song were were listening to before Emri was taken back. God is working for our good. I am clinging to that promise."
Nov. 20, 4:00 PM
"So many things.
-God sustained Emri through yet ANOTHER chest tube procedure and pain is being managed well here, at Nation Wide Children's.
-Insurance denied us being transported back to Hopkins....but we have a phenomenal team of doctors/social workers/people I don't even know about working on it all.
-The Sydney Lerman Foundation has SO graciously gifted us money towards reuniting our family once we get back to Baltimore. I just can't even wait.
-It was Brett and Jaemin's birthdays yesterday. I haven't been able to write a celebratory post because I'm beyond weary and sad. But we will celebrate ALL the more when we are together again.
-Insurance denied us being transported back to Hopkins....but we have a phenomenal team of doctors/social workers/people I don't even know about working on it all.
-The Sydney Lerman Foundation has SO graciously gifted us money towards reuniting our family once we get back to Baltimore. I just can't even wait.
-It was Brett and Jaemin's birthdays yesterday. I haven't been able to write a celebratory post because I'm beyond weary and sad. But we will celebrate ALL the more when we are together again.
"The Lord is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, O Lord, have not forsaken those who seek you."
Nov. 21, 8:30 AM
"This girl."
Nov. 22, 9:45 AM
"Firstly: I know there are a lot of confused people, not knowing where we are, or how we got here because if you scroll through facebook and see an update it may be an old one. Make sure to just go to my actual facebook page to check for the latest updates. There have been a number of individuals who have reached out wishing us a happy ride home, which unfortunately is not our current situation. 😢
Today's focus:
"The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
https://www.youtube.com/watch?v=eyHn_KPm3uk
We still have not been cleared by insurance to be medically transported back to Hopkins. Our other option, which we are now pursuing more seriously, is for us to be medically cleared (which a doctor here is willing to do) to travel with a different chest tube attachment that would allow any big air accumulation in Emri's chest cavity to be released as we drive. In order for this to happen, we are doing a trial run for the next 24 hours hooked up to that particular attachment, and a couple x-rays to make sure things are stable.
Emri had a good day yesterday---an overly welcome reprieve amidst a pretty intense month of medical misery. We saw smiles, heard a few giggles, and saw life and hope in her eyes (refer to yesterday's pic:) The chest tube pain has been less this time around which is such an answer to prayer.
So we march on---eager to pursue treatment that will put an end to this lung madness. We are all very sad that this treatment requires an additional surgery, but look forward to the day this can all be in the past.
We thank the Lord for how he has cared for us. I know as time goes on, that we will see more and more of God's goodness and provision in this situation...Brett and I have already been talking about how we see God working out details that we didn't even know needed to be worked out in the first place. "...your Father knows what you need before you ask him." I so often fail to fully trust in the sovereignty and goodness of the Lord...and yet he patiently teaches me over and over again, through each trial, that our ways are NOT his...praise the Lord for this."
Nov. 23, 9:45 AM
"Take two." 🎬
Nov. 24, 9:00 AM
"We praise God for bringing us safely back to Hopkins. We finally got a room last night around midnight. Rumors of surgery tomorrow already. I will update when we know for sure."
Nov. 25, 9:00 AM
"Newest news: Emri is on the list for surgery this afternoon (5ish). The CT she had done yesterday did not show any blebs in her lungs, which is a good thing, but doesn't give us a clear answer as to where these air leaks are originating. As of now, the plan is to perform a pluradesis alone, which scars the outside of the lung in order to make it adhere to the chest wall as a preventative for future collapse. IF they go in with the camera and see any area of concern (a popped bleb, or a bleb not seen ok CT) then that portion of lung tissue will be removed. The surgeon met with us this morning and warned us that many times this procedure needs to be done a few times to fully resolve the issues. We are asking everyone to plead with the Lord...that this procedure resolves Emri's lungs issues and that we are able to put this all behind us.
It has now been over a month that we have been apart as a family. We will be reunited on Thursday as my courageous parents fly out with Abe, Jaemin and Eiley. We are praying that Emri will be far enough out from surgery that seeing her siblings will be a welcome and enjoyable experience for her. We are also praying we can be out of the PICU and on the floor where visiting rules are less stringent.
Thank you for sticking with us on this unexpectedly long, painful journey. We are grateful.
Side note---Brett met BJ Novak and got his children's book signed for Emri. It's a funny book, and made Emri smile this morning."
Nov. 25, 4:00 PM
"Surgery postponed until tomorrow. There was an emergency case that took Emri's spot. Emri will be getting an IV placed tonight to make sure she stays hydrated for whenever an operating room is available tomorrow. Pray that we can rest and for us to all experience peace as we wait a little longer."
Nov. 26, 4:00 PM
"Grateful for:
-A ladybug to distract Emri in the hour before surgery.
-The silly meds working their magic.
-Watching Emri "princess wave" all the way to the OR.
-A less traumatic going to sleep process than the last 9.
-The silly meds working their magic.
-Watching Emri "princess wave" all the way to the OR.
-A less traumatic going to sleep process than the last 9.
Will update when we hear anything."
Nov. 26
"She's out and stable. This was surgery/procedure #10 in Emri's 9 years of life. We really racked up that number in the past month...go big or go home, right??!? (We did TRY to go home) It ended up being a pretty extensive procedure, so we are in the PICU again for pain control and observation. Pray for this sweet girl...the suffering she has gone through in this past month just blows my mind. Emri, sweetheart, God is doing big things in and through you. I love you beautiful girl. Now let's do this healing thing and get home!!"
Nov. 27
"Emri is having a rough day with pain and low 02. Please pray for these things to improve soon. We need some relief from this all."
Nov. 27
"My sweet girl is finally resting well after a long, tough day. Her 02 has improved as she has become more relaxed/medicated. I had a mediocre meltdown when her 02 was dipping today, thinking it could be yet ANOTHER lung issue or that the surgery wasn't doing what it was supposed to do...I am living a life where I am near-CONSTANTLY reminded who is actually in control (hint: it's not me) because there is quite literally NOTHING I can do to help Emri physically heal or feel less pain. My eyes just kind of constantly leak these days-mourning the pain Emri is facing most moments of most days. I am pleading with the Lord tonight for rest, healing and true relief for her. Spiritually speaking, God is working overtime in all of us---God is stretching us and teaching us and we will walk away from this all spiritually richer than we have ever been. Praise the Lord for this.
We are so grateful to have been moved up to a room on the 10th floor---the biggest room, with a view of helicopters taking off and landing, which works out nicely with our extra-special visitors coming tomorrow:) We are really hoping the nutso weather systems moving around the country do not negatively impact the kids and my parents getting here tomorrow...my heart is overly ready to have those three little gremlins back in my arms. I honestly feel like I am going to need to re-acquaint myself with Eiley---she's grown and changed so much and it all feels very strange.
If I don't get to it tomorrow, I wish you all a very happy thanksgiving! I am THANKFUL for all of you---for the messages, texts, emails, gift cards, gifts, phone calls, PRAYERS...the Lord is working through all of you to encourage our weary hearts as we work our way through some deep waters.
"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.'"
Nov. 28
"Happy, happy, happy Thanksgiving! Funny how the deepest pain can bring about the deepest thanks. My heart has never been more full."❤️
Nov. 29
"Sorry for the lack of updates--we've been soaking in the family time. There just aren't words to describe how it feels to be a family again. The emotion of it all is just plain overwhelming.
Emri got her chest tube removed today! It was fairly traumatic since this chest tube was much larger than her last two. She is also experiencing a lot of apprehension about needing another one following all of the happenings in the last month. Reassuring her is difficult because we cannot tell her with certainty that she won't need another one, but what we can tell her is that there are literally hundreds of people praying along with us for her healing and that God IS and will continue to work for our good, regardless of our physical circumstances. As we waited for the doctors to come remove the tube, we talked about Paul and his ability to find contentment at all times....even cold and hungry in prison. We spoke the words of one of our beloved "Scripture lullabies"... "Do not worry about anything, instead pray about everything. Tell God what you need, and thank him for what he has done!" Emri and I are learning these truths together---growing in faith together with many, many opportunities to put it all into practice.
We wake up tomorrow to a new day of healing. We are now primarily focused on getting back to Emri's baseline g-tube feeds, lots of PT, and pain control. We know this road to recovery will be a long one. Please continue to pray us through this, as so many of you have faithfully done so far. What an incredible journey we're on!"
Dec. 1
"We're getting there friends! Emri is ever so slowly making progress, although she had a nauseous tummy all day yesterday, which made it impossible to get all of her g-tube feeds in. Today, she seems to feel ok until we start to feed her---she wants us to stop before we can get very much in. We think she may be having some withdrawal symptoms due to med weaning, so we are taking it slower. Moving Emri around is also still extremely challenging due to pain. We know it's important to be moving her for her healing, but it's heartbreaking to see her in so much pain over and over again. Gampa brought her a giant stuffed unicorn this morning which produced some of the biggest smiles we've seen yet. She is currently working on a name for said unicorn.
The boys have been on quite a few adventures out on the town (with lots of sanitizer), but they always end the day with a visit to see Emri and mommy at the hospital. Emri barely says a word all day to me or the nurses...but when those boys walk in, she doesn't stop talking. She needed them.
My sweet baby girl has been hanging in the hospital with me and it has been absolute balm to my soul. I'm not going to lie...for the first 24 hours of being with Eiley, I felt like I was holding someone else's baby, and she seemed to struggle figuring it all out as well...but we both feel it again now---that we belong together---and it's absolute bliss.
That's all I've got for now"♥️"
Dec. 1
#waystomakeemrilaughinthehospital
Dec. 2
"As we wean off of SO many meds, we are giving larger doses of sibling love. And we're, like, totally fine with overdosing on this kind of medicine."
Dec. 2
"We got out of our room! And tomorrow, Lord willing, we will get out of this hospital! Emri did well in her wheelchair for about 25 minutes tonight while Abe gave us a hospital tour. We turned off Emri's IV nutrition today in attempt to see if it was the culprit in making her nauseous. She tolerated more g-tube feeds today, so we are guessing that the IV nutrition was at least part of the problem. She will get the IV stuff overnight tonight yet, and then have her picc line removed tomorrow morning. After that, there is nothing keeping us inpatient. We will be staying at the Ronald McDonald house for at least another week, and having an appointment with Emri's pulmonologist before we even attempt to make plans to get home.
My parents are leaving tomorrow after flying our other three kids out here on Thanksgiving. I cannot thank them enough for making the trip out here and all of their help caring for the kids while here. What a tremendous blessing.
Brett's parents arrive late tonight, and will be spending the next week with us here. We are BEYOND thankful to have both sets of parents ready, willing, and desiring to pour themselves out to help us in this crazy, crazy time.
Brett's parents arrive late tonight, and will be spending the next week with us here. We are BEYOND thankful to have both sets of parents ready, willing, and desiring to pour themselves out to help us in this crazy, crazy time.
Pray with us as we leave this place tomorrow and transition to the next phase of healing for Emri. As you have seen in the pictures I've been posting, being with her brothers and sister has undeniably lifted her spirit, and I truly believe her physical healing benefits from it all too."
Dec. 4
"We are at the Ronald McDonald house. We got here yesterday afternoon, and Emri is doing OK. I will try to update more after the Christmas party tonight."
Dec. 4
"Perfect."
Dec. 4
"I promised an update after our party tonight, so here it is! We arrived here, at the Ronald McDonald house yesterday around dinner time. Emri rested in bed until she heard that there were service dogs downstairs, which excited her enough to get out of bed and visit with them. She loved it, but faded quickly and needed to be put back in bed after about 20 minutes with her furry friends. Today we spent most of the day in the game room. We managed to get Emri comfy enough on some giant bean bags to watch a movie and even play a little with the boys.
We had some very special friends visit right before the Christmas party. Cassie and her mom, Alix came to see us! Cassie just so happens to be having the same lung surgery that Emri just had tomorrow morning. If you have been faithfully praying for Emri, please remember Cassie in your prayers also🙏.The Christmas party was fun enough that Emri remained up in her chair for a good hour. She was EXHAUSTED tonight when we got up to our room and fell asleep in a matter of minutes after tucking her into bed.
Specific prayer requests include increased stamina with sitting upright, increased 02 levels (still hanging in the low 90's much of the day), and just overall pain management. This kid has been through it. We removed some bandaging today while dressing Emri and her body bears so many scars and war wounds---stark reminders of the immense pain Emri has been through this past month, but also beautiful reminders of what God has safely carried her through. Enjoy the pics of our last two days below."
Dec. 7
"Grandpa and Grandma VA---THANK YOU, THANK YOU, THANK YOU---not only for caring for our three crazies for over a month, but for making the trip out here to see us and help us adjust to life outside of the hospital. It has truly taken a village and you have been such a HUGE part of our village. We miss you already. ❤️
Emri has been doing well. Getting a little stronger every day. She took her first shower in 37 days, saw Frozen 2, is beginning to ask for small amounts of food by mouth, and had a successful Pulmonology appointment with our dear Dr. Neptune. The plan is to remain here until next week Wednesday and then our long voyage home will commence. We ask for prayer for Emri's body and spirit to continue healing and gaining strength. We also ask for prayers for a very UNEVENTFUL trip home as the time draws near for us to depart. "
Dec. 9
"December 9, 2019: Ronald McDonald House Baltimore, MD----Eiley CRAWLS! And boy, she is mighty proud of herself!"
Dec. 10
"Hey all. It's been hard to put together an update on Emri because...well....progress is very, very slow for her right now and includes a lot of resting. Also, the pictures I have been taking of her are hard to share because she looks so pale, tired, and sometimes just sad. But progress is progress after all. With everything Emri has been through in the past month +, it has been SO incredibly hard to push Emri through MORE pain and discomfort even though we KNOW how necessary it is to do just that. Emri is taking small steps forward every day, but is very, very weak.
If any of you have been following our journey from the beginning, you know how much effort we have put into helping Emri put on any sort of weight. These kids with the infantile marfan diagnosis just have so much trouble putting ANY weight on, but we are following a regimen that a few other infantile kids have followed and experienced some success with. We met with a gastroenterologist this morning at Hopkins to see if there was anything else we could be trying with Emri and he is prescribing an antihistamine that has "increased appetite" as a specific side effect. We will be adding this to the regimen and hope for good results. If this doesn't seem to have any effect on Emri, there are a couple of other "tools in the toolbox" that we may be trying as well, but for now, we hope and pray this girl can put on some weight.
We had planned on beginning our drive home tomorrow, but our rental car was less expensive if we got it for Thursday---so Thursday it is.
For those of you praying for Emri's friend Cassie, she is going home tonight!!! So thankful to hear this good news from her mom a few minutes ago!
Keep those prayers rolling---God is so good to us!!"
Dec. 12
"Oh boy. Jesus take the wheel. Also, Emri has a stuffy nose. May the prayers abound!"
Dec. 13
"Sometimes I look to my left and see things like this.
Trip's going well"😊
Dec. 18
"We're HOME." ❤️
We had planned on beginning our drive home tomorrow, but our rental car was less expensive if we got it for Thursday---so Thursday it is.
For those of you praying for Emri's friend Cassie, she is going home tonight!!! So thankful to hear this good news from her mom a few minutes ago!
Keep those prayers rolling---God is so good to us!!"
Dec. 12
"Oh boy. Jesus take the wheel. Also, Emri has a stuffy nose. May the prayers abound!"
Dec. 13
"Sometimes I look to my left and see things like this.
Trip's going well"😊
Dec. 18
"We're HOME." ❤️
