Tuesday, October 14, 2014

Rod extension #2

We are here, in Baltimore, MD once again for Emri's second rod lengthening. For those of you who did not know, we had to reschedule surgery from mid-September to October 15 because Emri fell and cracked her skull on our driveway! She had a little bone puncture the inside of her ear canal and caused a lot of bleeding and drama. She recovered remarkably well and we are now once again anticipating Emri's spine surgery. I will keep updating the blog for those of you who follow our story on here, but not on facebook. Here is what is going on here, in Baltimore...

Oct. 12---"We made it...the flight was beautiful and long. Appointment at 7am...6 0'clock shuttle. Goodnight!"

We wore masks to scare everyone away:)
Mt. Ranier I believe...with some sweet clouds.
Landing for a quick stop in Chicago.
Before landing in Baltimore.
Oct. 13---"Our day consisted of a 7am pre-op with Sponseller. He is pleased with her x-rays and thinks things should go smoothly. We had anesthesia next, which is always the scary appointment...Emri is a fragile little girl-and that is reiterated by them every surgery. We had an echo after anesthesia that will be read by Dr. Dietz tomorrow. We had a great dinner at Bubba gump and are planning to snuggle with movies for the next couple of hours. Emri has been a trooper as always, and seems to be handling everything with a maturity beyond 4 years old. Thanks for the prayers. We will be meeting with Dietz tomorrow and then prepping for surgery early wednesday morning."
Dr. Sponseller himself. We are so thankful that we get to have him as Emri's surgeon!
Goofing off while waiting!

Oct. 14---"We met with Dr. Dietz today. Emri gave him a great big hug the second he walked into our room:) We will start with the good news. Emri's valve leakage is still minor according to Dietz, which we are thankful for. The semi-bad news is that her aorta grew. It only grew 1.5mm, but growth is growth and it's not something we want to see. We are increasing one of Emri's medications to try and get on top of the growth. Dietz is also feeling very optimistic about some new research going on that we are excited to learn more about! He never stops working to find more answers and new solutions...and we are so thankful for him. Emri is acting very brave about the surgery tomorrow. She is ok with the surgery part, just not ok with the mask that we have to use to put her to sleep. The last three surgeries the mask has been a very traumatic experience for Emri and consequently for us. We are praying that she feels more at peace this surgery now that we have been able to explain more about the experience to her. Emri is just an amazing little soul and I have never felt more thankful to receive the unique and rewarding experience of being her mommy. We covet your prayers for Emri and us tomorrow. Please pray most of all for peace and strength. We can always receive comfort in knowing God is sovereign."

Emri and the "good man", Dr. Dietz.
 Emri with Genetic counselor, Gretchen. And of course, kitty.

October 15, 8AM---"Another rough mask experience. Emri was trying so hard to put her brave face on this morning. She performed about 30 surgeries on her little kitty, and would put a mask on kitties face before "surgery". She would then ask Brett or I for the screws she needed for surgery. We were feeling like this mask experience was going to be better than the last one. On the way to the OR, she said that she was scared. When we got into the room, there were tears rolling down her cheeks, and when the mask went on, she was terrified. She fought so hard again to stay awake. I can't even describe how terrible watching her go through this again is. She is so brave. I will update when we know anything."

9AM---"Took an hour to get all the IV's and wires into place. The incision has been made."

10AM---"It's over and she did well!! Waiting to see her now! PRAISE THE LORD!"

4:30PM---"Emri has finally been fairly comfortable for the past couple of hours. She woke up very agitated and was complaining of a lot of stomach pain. Because she was in so much pain she was given a dose of morphine. The morphine made her really itchy and so she was given benadryl to help stop the itching. The combination of the two of the meds made for a very loopy little Emri. They have set a goal for her to sit up in a half hour in hopes to get her body moving and her bowels more awake. She has been watching Dora and drinking water...and telling us how much she DOESN'T want to sit up. We shall see how this goes. THANK YOU for all of the support and prayers. We feel very supported and loved...and very very blessed."

7PM---"Our day...starting with surgery and ending with a WALK! Way to go BIG GIRL!!! This kid is amazing."

October 16, 5:45AM---"Horrible night for our sweetheart. She has been in constant, severe pain all night. I have felt so helpless as she is begging me for more medicine. We have done Oxycodone and Valium, and both didn't touch Emri's pain level. We have come to the conclusion that we probably have to hook her up to the PCA (pain pump) with morphine, which we know will not be good for her post-surgery stomach issues. She is just in too much pain. Prayers for our sweet girl as we once again take 1 step forward and two steps back. She needs some relief."

2:00PM---"Life can be so extremely painful sometimes. We just learned that a 13 year-old marfan friend had a massive stroke last night, most likely due to complications of marfan syndrome. Please, please lift her and her family up in prayer. Emri is sleeping comfortably on morphine right now. We have moved out of PICU and Emri is on a pain pump. She is still in a lot of pain when the meds wear off. Marfans is not my favorite right now."

8:00PM---"Emri has been given 6 morphine doses today. That being said, she walked 5 laps all together around the wing and walked up 3 stairs for the pt today. She is doing so well compared to how she usually looks on day two of spine surgery. We are being told that we could be released as early as tomorrow, as nervous as that makes me. We will see how the night goes. Thank you all for the ongoing support. Please continue to keep Emri in your prayers as recovery is always a trying time."

October 17, 10:30AM---"There is so much going on in the marfan world right now. Our friend Catherine, who had the massive stroke, had a surgery on her brain yesterday. Our little friend, Ryker, who is younger than Emri, is having an aortic repair today due to his aorta growing at a rapid rate. We are definitely counting our blessings today. As of right now, the plan is to be discharged from the hospital this afternoon. We will be staying in Baltimore until Tuesday, because we have a pulmonary appointment at Hopkins on Monday. We have been overwhelmed by the amount of support and prayers that we have received during this time...as always! Help us overwhelm Catherine and Rykers families with prayers and support too! Being a mom of a fragile child, myself, I cannot even begin to imagine what these dads and moms are going through at this time."

2:30PM---"Guess who busted out of the hospital today...with a smirk on her face! We are giving God all of the glory!! Emri is in a comfy bed with her ipad, headphones and Mickey mouse."

October 17, 10PM: "Emri has had a good night, but still in pain frequently. Tonight while she was crying for meds she told us that surgery hurt her feelings...and that's why she was crying a lot. She walked around the hotel a bunch tonight and did great. She also now has sparkly glow in the dark fingernails. We are feeling thankful to have our sweet girl acting more and more like herself. We continue to pray for Catherine and Ryker and hope that recovery comes sooner than expected for them as well."

October 20, 2PM: "This amazing pulmonary Dr. is part of Emri's incredible team of doctors at Hopkins. We are very thankful to have Dr. Neptune on our team!!"

October 22, 10AM: "We are HOME! So happy to be here and have this surgery behind us. The two littles missed each other. Thank you to all who have been supporting us and praying for us. Emri's recovery has been so much smoother than the last few times and we are so grateful to be home this quickly!"