Monday, December 24, 2012

Our Little Christmas Miracle...

Just so excited to share this story of God revealing himself not only to us, but also to the staff here at Hopkins and hopefully to some of you that read this blog. 
There has been mass confusion taking place regarding whether or not Emri did, in fact, have a pneumothorax...or if it was actually just a hyperinflated top lung lobe. The doctors came in to explain to us that because there was so much uncertainty, and because the location of the puzzling pocket was hard to see in an x-ray, they wanted to do a CT scan. Now I know many of you have gone through CT scans...and I know that they now tend to be much safer than they used to be...but it was none the less making me uncomfortable. Emri is so small, and has been under the x-ray machine more times than I can count in the past 2.5 years. I really don't enjoy the idea of exposing her to the amount of radiation it takes to take a picture by CT (several hundred x-rays at once). Because of my uneasiness with getting a CT, they sent the senior radiologist down to Emri's room to talk with us. I thought he would relay some of my fears, but really, he just confirmed that, yes, even though they have gotten better over the years, it is still "last resort" when the choice is made to order a CT. They do not enjoy exposing small kids to that much radiation and know that in Emri's case, she does tend to get more x-rays and scans than the average person in the first place-and will continue to need many more of them in the future. He did make the point, however, that  the risks of taking a guess with her lung condition outweighed the risks associated with the radiation exposure in a CT. After he left, I asked the doctors on the floor if they would feel comfortable just letting us pray for a bit, getting one last x-ray, and then if the x-ray showed the same ambiguity, resorting to a CT. The doctors repeatedly voiced their doubt and skepticism that taking another x-ray would show anything more than the last one they took not but a few hours ago---but they felt comfortable with giving us a few minutes and one last x-ray. They kept saying that while they "knew" a CT would be necessary, they would get this x-ray for our own peace of minds as Emri's parents. Brett and I stepped outside to pray with Brett's mom, dad and baby Abe and then continued on to Emri's room to pray with her. We finished as the x-ray technician showed up to the room.
My thoughts while the x-ray took place were, "God, use this as an opportunity to show yourself here, in this place, to these people. Make yourself known here." 
20 minutes later, the same floor doctors came in and let us know that the senior radiologist was very happy with the pictures we captured by x-ray and that he was able to mark the outline of both lungs. There was, in fact, no pnuemothorax---just fluid surrounding the lining of the lung... Thank you God. We are now fully confident that we need to be treating for a lung collapse and can stop all pneumothorax treatment. 
I know this may seem small...but I am feeling overwhelmed with thankfulness and can't help but stand in awe of our Savior's powerful presence here. If you have been praying in earnest for our little girl's health...please stop to thank God wholeheartedly for his amazing work here, in PICU room 14 at Johns Hopkins on Christmas Eve.
We would like to wish everyone a very Merry Christmas! Brett put our thoughts on Christmas perfectly in the following words...
"Remembering at this time of year, how our Father in Heaven loved us SO much, that he sent his Son Jesus to become a baby, human flesh, and endure the torturous wrath of mankind that we may have everlasting life, praising him forever in Heaven someday! Merry Christmas and may we all dwell on the incredible sacrifice that Christ has made for us, and in return, offer our lives as living sacrifices to his work and the Gospel!"
Here are the facebook statuses of the last few days for those following the blog-sorry I have been slightly neglectful of the blog!

Friday, 8AM---"Finally got to hold my sweet girl last night for about 45 minutes. It went better than the first time Brett held her, but she was also on stronger pain meds. I sang some of her favorite songs to her, which she loved---her eyes were closed, but when I got done with one song she would strain them open to make sure I was going to sing another one:)"

Friday, 2PM---"Today was only slightly discouraging. Emri's lung x-ray this morning showed her left lung looking slightly better than yesterday, but the lower lobe of her right lung has now collapsed as well. She is on an even higher flow of oxygen now and we are trying to move her around a little more in hopes that the lungs will open back up. Her stomach is still very distended-just hard as a rock. Her nurse/doctor team here is trying to figure out how to solve this. We got a visit from Dietz today which was wonderful. He was pleased with how she looked-but a little concerned with the stomach issues. We are still chugging along---but it's hard to see our sweet girl so very, very uncomfortable and desperate to feel better. It's next to impossible to explain to a 2 year old why they are needing to go through so much pain. Praying for quick healing for my little hero-and that we may see her sweet smile light up the room again soon."

Friday, 5PM---"We are getting another chest x-ray soon. Emri's breathing has sped up and her O2 levels are slightly down. The doc is saying that if a higher O2 flow doesn't work, and if she won't tolerate a mask, we are going to have to talk about a ventilator. Please pray that this doesn't have to happen. I would really just love her lungs to inflate...right now."

Saturday, 12PM---"Emri just got finished with some chest PT-they used a pneumatic tamper to beat the left side of her chest in hopes to help open up that lung...and she LOVED it. She cried every time they stopped the machine. She is also on high flow (20) O2 and has been all night. The chest x-ray this morning showed no change in lung status. She is currently getting blood because her hemoglobin was super low and they are hoping it helps her get stronger. We are going to try to move her around a lot today in order to get her to breathe deeper for those lungs. We need her x-rays to start looking better so there won't be a need to put her on the ventilator. Thanks for all the prayers and please keep them rolling..."

Saturday, 6PM---"In shock right now---we just got a package in the mail from a 4th grade class of Sydney, a girl who is also affected by severe marfan syndrome. In the package were 17 of the sweetest cards from the kids and an Ipad. What a gift! Can't tell you how completely spoiled we feel right now! Emri is going to have so much fun playing games on it and talking to her Grandma, Grandpa, Aunts, Uncles and cousins on it's camera!!! THANK YOU! Slightly speechless- and that doesn't happen very often. "

Sunday, 3PM---"This morning was encouraging...but then about 3 hours ago things went downhill once again. Emri's lung x-ray this morning looked great-the left lung looked just about normal again and the right lung was completely clear. The x-ray this afternoon, however showed a pnuemothorax on the left lung. I have always been under the impression that a pnuemothorax meant collapsed lung-but it is actually an air pocket outside of the lung that can oftentimes cause a collapsed lung because of the added pressure to the outside of the lung. Emri now has to have a mask on with full oxygen for the next 6 hours until we x-ray the chest again. I have no idea how oxygen helps this situation...but they tell me it somehow does. Emri seems frustrated and discouraged---she doesn't seem like a 2 year old, she seems like a 12 year old---like she understands everything the doctors say and know this is another major setback. I feel for my sweetheart and just desire some relief for her, even if it means one more line being taken out, or a break from having something on her face. She is terrified every time a new person comes in the room-she just knows it means more pain and discomfort. Right now, all she wants is to hold our hands and watch Berenstein Bears, so that is what we will be doing for the next 6 hours. Please pray with us for some relief for our sweet girl.

Here she is with her brand new mask, watching her favorite family of bears."

Sunday, 9PM---"So...God is hearing the prayers across the nation...over the seas! We just took this picture of our sweetheart. Don't know if it is a short little break she is getting form her pain and discomfort...but it's a break none the less! She is singing songs, smiling and giggling with daddy for the first time since before surgery! We are waiting on x-ray results, but I can't imagine with how she's acting that they aren't going to look any better! Thank you, thank you, thank you for keeping our precious girl in your prayers! I can't tell you what a relief it is to see that big beautiful smile! I will keep posting updates...I am hoping we are turning the corner!!"

Monday, 1PM---"It's been a one step forward two steps back type of morning. We just had the floor doctors come on rounds and tell us that they are not so sure if Emri does in fact have a pneumothorax. It could still be a pneumothorax, but it could also be hyperinflation of the upper left lobe. These two problematic situations are treated differently and treating a hyperinflated lung aggressively can cause a pnemothorax to worsen...which can be dangerous and require a chest tube for immediate treatment. Since they can't tell what it is on x-ray they are thinking about a CT scan. I am not a huge fan of exposing Emri to more radiation, so I did ask if there was another way around this and the docs will be talking to radiation to see if there is something we can try other than a CT... I am feeling frustrated and emotionally drained---especially after last nights excitement-I really thought this morning would show better results. Please help us pray through this situation. Emri is once again, very frustrated with everything going on.
The picture below just makes me want to cry. Dr. Dietz came to wish us a Merry Christmas today with a giant basket of fruit, chocolate and stuffed animals. When the doctors came in to talk to us, he left and I saw him in the background checking out Emri's chest x-rays on a computer in the nurses station. He is just a wonderful, wonderful man-and I can't express how much it means to us that he truly, truly cares about Emri and desires the absolute best care for her. Just in case it wasn't enough that he discovered her life saving medication, he had to bring us a fruit basket too."

Thursday, December 20, 2012

Here are today's facebook updates. 

1AM---"Emri's body is trying to understand what just happened! She is pretty uncomfortable and just can't find a good position. She is still drifting in and out of sleep and every time she wakes up she seems to get kinda freaked out with how different her body feels. The whole middle section of her body is a completely different shape which we are thankful for-but we know it will be a difficult adjustment for Emri. God has blessed us with an incredible, tough little girl."

10AM---"Tried to let Brett hold her this morning-because she wanted it so bad-but it was too painful yet. Poor girl just wants to be cuddled---hopefully soon. She is doing well-remained stable all night! Got a visit from Sponseller already this morning and he is very happy with how she looks and how her stats are holding up. Continuing to thank our Lord for blessing us with a successful surgery!"

12PM---"Emri's respiratory and heart rate have been running high and she is still oxygen dependent. They did a chest x-ray and found that her left lung is partially collapsed. We are starting respiratory therapy now and were told this would lengthen her stay in the PICU."

2PM---"While the respiratory therapist was attempting to get Emri's mask on, Emri pushed it away and said, "I need a break.""

So as you can see, we had a little setback today with the partial lung collapse. Emri has been on high flow oxygen the whole second half of the day and they plan on taking a repeat x-ray some time tonight to see if it has helped that lung re-inflate. We are in the PICU until her lungs are back to normal and until her stomach is less distended. Emri seems to be experiencing minimal pain thanks to her continual morphine and tylenol drip along with regular doses of Valium. This surgery comes with the understandable reputation of being very painful and I am glad Emri's pain is being managed tolerably for her. Due to the fun mix of meds we have been hearing a variety slurry, nonsensical sentences come from Emri's mouth. She wakes up a few minutes at a time to catch a little Berenstein  Bears or Veggie Tales and usually wants a hand to hold and an apple juice soaked sponge to suck on. I am praying that God makes this painful time for Emri as short as possible and allows us to perhaps even enjoy a minimally painful Christmas together as a family. 
We are so thankful to have Brett's parents here to care for Baby Abe. I have no idea how we could be doing this without them. It is so nice for Brett and I to be able to be here together focusing our energy on Emri and her recovery. Once again, I can't express my thankfulness to have our sweet girl with us and surgery day behind us. Thank you to all who have been praying for our sweet girl and Brett and I. We feel so blessed to have so much support. Seeing how many people follow Emri and her progress on facebook just astounds me and allows me to feel the love of so many of you that can't be here in person. We feel so supported by family and friends and even a few people I hardly know! Emri is one special little girl---God has given us such a gift in her. Updates will continue.

Wednesday, December 19, 2012

So I wanted to update the blog by posting the facebook statuses of today for those of you who read the blog but are not on facebook. So here they are starting from early this morning to the very latest one written a few minutes ago.

8AM---"Brett and I both got to bring Emri back into the surgery room and be with her until she fell asleep. The most emotionally stressful moment of my life yet. Jesus take care of my sweet girl."

11AM---"Breathing a tiny sigh of relief-they called the front desk to say they were still working on her but it was going well! I just want that girl back in my arms! Thank you Lord for keeping Emri safe so far."

12PM---"Closing her up-waiting for Sponseller to come talk to us. She will be moved to the PICU in the next 45 minutes."

1PM---"Can't help but smile right now. Emri was just moved to the PICU-a nurse came out to get her binky because she is requesting it along with her mommy and daddy. Apparently she keeps telling the nurses, "NO new back, NO new back!" She has her wits about her already! THANK YOU GOD FOR KEEPING EMRI IN YOUR HAND THROUGH THIS ALL!!!! I am SO full of thanks right now...can't wait to go see my sweetheart! I will update more when we are more settled."

6PM---"We are settled in the PICU with Emri. She has been drifting in and out of sleep-and on a lot of pain meds. She wants to be held and drink water and can't really do either of these things at the moment which is causing a little frustration on her part. Surgery went well, besides a few dips in her blood pressure which was treatable with medication and fluids. We are PRAISING GOD that she is remaining stable in recovery so far and that her pain is being managed well. I can't tell you the flood of relief I am feeling just seeing her heart beating and chest rising and falling! Holding her little hand has never felt so good."

This was our day in a nutshell. It was long, it was draining, but is turning out to be so wonderful. We realize we are not homefree yet-and know that these first 48 hours are always the most vital...but we feel God holding us close and we know prayer is surrounding our little sweetheart. Please continue to help us pray Emri right through these first few days and the rest of her recovery. God has been truly blessing us.

Tuesday, December 18, 2012

So I wanted to write a quick blog tonight before we head off to surgery tomorrow morning at 5:30am.

Last week we had two appointments to discuss Emri's pectus (caved in chest wall). We went in to these doctors thinking that they would be wanting us to schedule Emri's pectus surgery next. However, when discussing Emri with them, and having them look at her and listen to her, they both said NO to a pectus surgery! We were thrilled to hear was slightly stress inducing-- thinking about scheduling another surgery before we were even started with her spine. The pectus repair doctor that we saw did say that Emri's pectus was quite severe-one of the worst he has seen. But the good thing about that is that her pectus can't get much worse than it already is. He said that he anticipates her lungs to still be able to grow with her and function enough to keep her oxygenated as she gets bigger. Emri's breathing has progressively sped up in the last 2 years, but that is because the pectus has also been progressing with her growth. SO-if the pectus is as bad as it is going to get, we are hoping that her breathing will also not get any worse. I have to mention that in th emiddle of this appointment Emri kept saying "daddy, daddy, daddy!" until he finally acknowledged her. When he did, Emri took his hands, put them together and said, "I want to pray daddy." Talk about a tear jerking moment. So- while I was asking the last of my questions to the Doctor, Emri and Brett were quietly praying in the background. Sweet, sweet girl we have.
The second doctor we saw was a pulmonologist that Dr. Dietz actually trained under...which was pleasing to us of course:) She agreed with the pectus repair doc that we should leave the pectus alone until it starts actually causing enough problems to get concerned. She also listened to Emri and heard her left lung inflate a few times. She ordered a chest x-ray and was pleased to see two lungs with air in pockets of collapsed lung-which reassured her sending Emri into surgery. We were so happy to see those big beautiful lungs with air in both of them!
Yesterday we had pre-op. We met with Emri's wonderful surgeon, Dr. Sponseller-head of pediatric orthopedics here at Hopkins. He explained the surgery to us and told us he would take good care of Emri. He did mention at one point that he had done a few other kids as young as Emri, which made me happy. He discussed the risks with us, which is never fun to listen to...but I kept my head steady-focusing on the fact that God is in control and HE has our precious girl in HIS hand. We met with Anesthesia after Sponseller. They made sure to let us know that Emri is indeed a very unique case and that they were making sure to cover all of their bases with her. We discussed her sudden drop in blood pressure during her last g-tube surgery which was, of course, concerning to them. They did emphasize that they have seen many many marfan cases and even some infantile cases. But we know that every case is unique and takes a specialized plan from the team of doctors, surgeons, and anesthesiologists involved in the case.
Today was "Dietz day"-I am working on getting it coined as a national holiday. Ha! We had Emri's echo first and then met with Dietz afterwards. Emri's echo looked great in the sense that it had not changed at all from the last echo! We were SO relieved and happy to hear this! I know Dietz loves to see good results like this too-- knowing the medication and the dosage he is giving Emri appears to be working! He was once again, so so sweet with Emri and even stopped to chat with us in the waiting room, along with his wonderful assistants, Gretchen and Libby. After Dietz walked away from talking with us in the waiting room, Emri piped up and said, "He is a good man" out of nowhere! Tell me that isn't hilarious??!? What a clown.

Throughout all of these appointments our sweet "baby Abee" has been an amazing, amazing baby. What a little blessing he is to us. He is currently spending the night with Grandpa and Grandma Van Andel in order to let Brett, Emri and I have a good night of sleep before surgery. We will see if I can actually shut my mind off enough to fall asleep!

We have given Emri her bath, sanitized her surgery site, and put her to bed. It is so hard knowing what she is going to have to wake up and face in the morning. Emri has, once again, been such a trooper this whole trip. She continues to charm every doctor, nurse, and fellow Ronald McDonald housemate she meets. I am certainly nervous to send her into that surgery room tomorrow, but delight in the fact that God is in complete control of the situation. I dread the pain my sweet girl will have to endure from this...but pray that God makes recovery quick and as relatively painless as it can be. To be completely honest-my prayer the last few days has just been for God to allow Emri to make it through this all-to feel her warm bear hugs again, and to hear that sweet little voice sing "I Yove you Yord".  This would all make me one happy and thankful mommy. Praying that the Lord will guide the surgeons hand tomorrow and keep our hearts at peace. Thank you to everyone who is praying right along with us.

This is the picture that I will be focusing on tomorrow while I wait the 4-6 hours during Emri's surgery. May be a bit "idealistic" but I can't help but find comfort in it. 

"Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working."