Tuesday, October 1, 2013

First Rod Extension, October 1, 2013

For those of you who check this blog, but do not have access to facebook---here is what has been going on here, in Baltimore, over the weekend and today. 

Friday, September 27:

So today was a day of walking, eating, and exploring Baltimore...for the 4th time! We actually feel like we know where we are going now! We also have the TWO (!!!?!?) starbucks locations memorized:) Yesterday we met with Pre-op in the morning, had Emri's labs taken, and met with a pulmonary Dr. in the afternoon. Everything went relatively well-they even got Emri's vein the FIRST time (we made sure to request the lady that we had success with last time). Pre-op is always the scariest because of all the risks discussed and we always can sense how nervous they are about working with our fragile, complicated Emri. We are now trying to figure out when we should be giving Emri her medications before surgery-because they affect blood pressure. During Emri's g-tube surgery, her blood pressure dropped suddenly and dramatically---which they seem to attribute to her meds....so we are sorting all of that out, trying to get her on a good medication schedule. Tomorrow we hope to get some free passes to the zoo from the Ronald McDonald house where we are staying. Emri has been wanting to see elephants:) Monday we have an echo, see Dr. Dietz and his genetic counselors, and meet with Emri's surgeon, Dr. Sponseller. Tuesday, at 5:30 AM we head in for surgery. So, all of you West coasters can think of us at 2:30 AM your time...just kidding! For those who were asking, our address here is 
635 West Lexington Street
Baltimore, MD 21201 Room number 217

Monday, September 28:
"So, I'm not going to lie...that was a. long.day. Got up at 6, on the shuttle by 7, and pre-op with Sponseller at 8. Of course we gave ourselves 2 seconds to grab COFFEE before our appointment. It's funny how much less dependent everyone here is on coffee....what is the deal??!? Anyhow, Appointment with Sponseller went fine. Nothing surprising. Sponseller is optimistic about the surgery and feels confident that Emri's recovery will be way less intense than the initial rod placement surgery. We DID learn, however, that Emri will eventually need a new set of rods as she grows...which is slightly disappointing. Next we had Emri's eye appointment which was nothing less than completely frustrating and almost entirely fruitless. They tried to perform a number of tests on Emri to get glaucoma readings, eye length...etc... It wasn't so much that Emri was uncooperative, but more the eye technicians thinking that, for some reason, a 3 year old has the capability of sitting COM-PLETE-LY still for 5 years while they get some dot inside of another dot which has to line up with a 3rd dot...or something to that effect. Eventually it was decided that they would just get the readings they needed while Emri was put out tomorrow morning...which is what I thought the plan was in the first place...uhg. THREE HOURS later we were headed for Emri's echo. Emri fell asleep during her echo, which was a good little break for her. The good news is that her heart looks great! Stable from the last echo, and ready for surgery. The only slightly bad news is that they did find a small hole, or flap between ventricles. This is actually relatively common...25% of us have it. It is even more common in marfan syndrome. This hole can raise the chances of stroke or pulmonary blood clot...but it happens very rarely. We also need to always make sure that when Emri gets an IV that the nurse has the bubble blocker hooked up with the IV. So not SUCH a big deal....but still...just ONE more thing to add to the list. If and when Emri would ever need a heart surgery, they will stitch this hole shut.
We got on the shuttle about an hour ago and are finally back in our room at the Ronald McDonald house. As I was sitting on the shuttle feeling overwhelmed, exhausted and wondering where I was going to get the strength to fight through this next week, the song, "I Can Only Imagine" came on the radio (our driver is awesome). Thanks to our wonderful God for the gentle, yet blatant reminder of who is in control, and what we are living for. What a crazy day...but what an AMAZING God we serve."

Tuesday, Ocober 1, Surgery Day:

7:30AM: "Emri fought hard to stay awake. It is the most unnatural thing as a mother to sit there, unable to do anything, while your baby is in that much distress...and then leave her in the hands of a team of people you just met 10 minutes ago. God take care of my beautiful, brave girl."

9:00AM: "Surgery is finished! Emri did well. Praising God for this news. They are finishing up with some eye tests, and will hopefully get her off the vent soon as well. Can't wait to see her and start talking about all of the things we get to look forward to now that this is over with. Thank you for all of the prayers, sweet messages, and kind words. I will update when we are settled in the PICU."

1:00PM: "So thankful to see Emri breathing on her own and waking up...but it is nothing less than torturous watching her go through this all again. She is just so agitated and in pain. So far she has said ,"I don't like this," and keeps asking if , "this will be done soon."

5:30PM: "Emri is doing well stat wise. Oxygen is on low and bp and heart rate have been stable. She has said, probably 50 times, that her stomach, chest, and back hurt. It has now turned into , "mommy, all of those 'fings' still hurt." She is being so brave. Praying for relief for my sweet girl."

Photo: Emri is doing well stat wise. Oxygen is on low and bp and heart rate have been stable. She has said, probably 50 times, that her stomach, chest, and back hurt. It has now turned into , "mommy, all of those 'fings' still hurt." She is being so brave. Praying for relief for my sweet girl.

Wednesday, October 2:
9:00AM: "We just got news that Emri will most likely be moving to "the floor" today already! Her stats have all been good-it's just pain management and getting her to move around a little. The picture below was last night when Emri said she wanted to cuddle with me (melt my heart). We got all settled and then she started crying and said "I can't do this" (break my heart). She is busy right now watching Doc McStuffins and fading in and out of morphine induced sleep. She hasn't had a wet diaper in a while so we are hoping we don't have to catheterize her again. We are praying for less pain and more pee!!"

10:00PM: "Our little punkin had a pretty intense pain attack about 2 hours ago and is now on vallium along with her morphine. She also has a 101 degree fever. She has had her arms wrapped around my neck the whole time. She is a little more comfy now and watching mickey mouse. Never fun to feel like we are taking one step forward and two steps back."

Thursday, October 3:
10:00AM: "Emri is doing better this morning. Fever is gone. Lung x-ray came back looking pretty good-just a teeny tiny collapse in the upper left lung- but nothing to do anything about. The biggest obstacle now is getting Emri's digestive system moving again. Vallium and morphine have slowed it down, so we are waiting for the pain team to come and switch her to some more digestive system friendly meds."

3:00PM: "Look who's sitting up and SMILING??!? Feeling a little better! AND she gets to wear her new pink JH shirt!!""

Friday, October 4:
11:00AM: "Emri was having SUCH a great night last night until about 7 or 8 and then things got sticky again. She came down with a fever that tylenol didn't seem to affect, her stomach became (and remains) super distended and she is in a good amount of pain again. She is now being tested for a few things to make sure her digestive system is healthy. We got to ride a wheelchair around the hospital to get an x-ray and Emri is seeming slightly more comfortable than last night. It's frustrating to watch her go from happy and comfortable to sick and in pain. Hoping things go up from here."

Saturday, October 5:
10:00AM: "My puffy little sweetheart. Stomach still hurting, retaining too much fluid, not eating, and building towers out of syrup is what's going on this morning."

Sunday, October 6:
10:00AM: "Absolutely feeling discouraged this morning. Emri's oxygen dipped into the 80's quite a few times last night. She is now on oxygen and received an x-ray this morning to check the lungs. Pretty confident there is a partial collapse. She is more puffy than she has ever been, in a substantial amount of pain, and her IV just slipped out of her foot...so she has to be re-stuck. My poor, sweet girl is quite miserable and it is so hard to watch. Please pray for healing for Emri, and patience for us."
Monday, October 7:
9:00AM: "Thank you to everyone for the prayers, encouragement and support. Emri FINALLY got some relief from her stomach issues last night following a few painful, uncomfortable treatment methods. Her stomach is slowly deflating and looking closer to normal size. She does have a small lung collapse which we will start treating more aggressively today with nebulizers and chest PT. Our goal today is to be up and moving as much as possible and to get her feeds closer to what she was on at home. She is the bravest, sweetest, and toughest kid."

1:00PM: "We got to visit with this cutie and her mom and dad today!! How refreshing to get to see them and talk with friends who have been through so many of the same things. We love the Jennings family!! Thank you for the visit and all of the sweet presents and cookies!!" 


Tuesday, October 8:
10:00AM: "So we are being discharged this morning. I am excited to get outa here, but a little nervous because of where Emri is at from a recovery standpoint. We have an appointment with Dietz at noon and a pulmonary appointment at 3 today. We are set to take off back to Washington tomorrow morning. We are happy to be at this point and thanking God for his healing this far...but we are going to have to be c...autious and in tune with how Emri's body reacts to the next few days. Its always a little nerve wracking leaving the nurses here who take such good care of Emri and who watch every heart beat and breath on her monitor. Thank you for all of the heartfelt prayers and words of encouragement, and please join us in continuing to pray for our sweet girls healing."

5:00PM: "Praise GOD for two great appointments today!! Cardio with Dietz was terrific...have we mentioned that we LOVE him??!? We always walk out of our meetings with him feeling like we can fly. The pulmonary appointment was also encouraging and we... feel like Emri is in the best hands possible. We weighed Emri before her appointments and found out she has an extra 9 POUNDS of fluid on her body right now...9 POUNDS! It was quite something to see the number 33 on that scale! We are hoping moving around and getting some more protein in her body will help with that and the stomach distension. Emri is SO SO happy to be out of the hospital. When we left the room this morning she couldn't stop talking about how excited she was. We asked what she was most excited about and she told us she was the most excited to get home and tickle Abee:) Please pray for safe, uneventful travels and specifically for Emri's oxygen levels to stay steady on the plane! Thank you to everyone who has been lifting our family up in prayer over these last few weeks..."

October 10:

"We DID in fact make it home safely...but not without some drama of course. We got to the airport yesterday morning and made it to security. They decided to check ALL of our carry-on stuff, and we, of course, needed some special person to come look Emri over. While TSA was busy sorting through our bags, Emri was soaking her pants and creating a little puddle under her feet. When we FINALLY got clea...red, we found the only kid outfit that was in the entire airport and changed Emri. We had a great first flight to Milwaukee, and had a nice three hour layover. We boarded our next plane and once again hooked Emri up to her pulse/ox machine to monitor her oxygen level. She did great on takeoff and eventually fell asleep on daddy's lap. After about an hour into Emri's nap, I noticed her breathing harder than usual, and decided to check her oxygen again. Her oxygen was dipping into the low 80's and upper 70's. We got her oxygen machine out from under the seat but couldn't find the nasal canula that goes up Emri's nose to give her the O2. Finally after a few minutes of frantic searching, we decided to ask the flight attendant if they had one on board. Of course this set off a relatively dramatic series of events. Since Emri was still groggy and her O2 was continually dropping into the 70's, we decided to let the flight crew do whatever they needed to do to get Emri some help. The paged for a doctor or nurse on board and we got a nurse to come up an look at Emri. The nurse was concerned with Emri's dusky fingernail color and the fact that she was still groggy. The flight attendants were on the phone with whatever medical person they are supposed to call in these sort of events. FINALLY they got permission to use the oxygen tank that they had on board and let us know a few times that if her oxygen didn't go up we would have to "divert" (land at closest airport). Oh. My. Goodness. I was so nervous. Thank the LORD that as soon as Emri started receiving oxygen, her stats went right back up and her color came back. We held the mask to Emri's face until we began our descent over an hour later. As we got lower, Emri's oxygen improved on its own and by the time we landed her oxygen was back up to normal levels without oxygen. OF COURSE, its mandatory to have medics meet you on the ground...so we were escorted off the plane and Emri was checked and cleared by the medics. Right when the medics left, Brett picked up Emri only to find out she had peed through her second pair of pants for the day. Apparently she decided that yesterday was a great day to expel the 9 pounds of extra fluid on her body! SO, we got to walk through the airport...exhausted, relieved, and with our pant-less Emri.
We are home, happy, and so excited to be a family again. Thanks for the prayers, thoughts, and well wishes...we are blessed..."