Monday, July 28, 2014

Great News!!!!

Well Jordan had her follow up appointment on Friday with Dr. Fraser and we got GREAT NEWS!!  Jordan does NOT have to go back for a MRI or an appt with him for 2yrs!!  WHOO HOOO  This was exciting & great news for us!! We are still so thankful for Dr. Fraser, Lindsey, & rest of the NS team. We will miss not seeing them but we also hope we do not have to see them in the next 2 yrs.
On another note, Jordan has recovered great from her last surgery. The incisions look great & have healed great!  She is getting excited about starting back to school in August & starting clinicals! 
Thanks to all of you for the continued until next time.  PRAY FOR JORDAN!!!

Tuesday, July 15, 2014

Back home & some EXCITING news!!!

We got home Saturday evening and we were all very glad to be home! Jordan did well traveling, which was a big relief for Taylor & I. Let's just say we were all excited to see the family/dogs & sleep in our own beds Saturday night!!  Sunday I rested while Jordan, Cory & Taylor went to tell the rest of the family her big news!! On July 3rd Jordan got engaged to Cory, her boyfriend of 3 1/2 years! He did a excellent job surprising her & having a photographer there to capture the big moment!  He is a wonderful young man that I know will always stand by her side! It was a very special moment for us all & we look forward to planning a wedding in a couple of years!!

Now let's get to how she is feeling. She is actually doing really well! The swelling seems to be getting better everyday & the eye is looking better! The biggest complaint that she has is her leg :( it seems to have muscle spasms constantly & as she would say,"a real pain"!  As most of you know Jordan pushes right thru it & is such a trooper! She is looking forward to getting the face sutures out on Friday and for the steri strips to fall off of her leg!
Tomorrow she has her annual follow up brain MRI & will see Dr. Fraser next week. To be honest I am always nervous before the MRI until we get the results & this time it will be a little harder because we will have to wait a week for results! Oh well, I know that God has this!
On another note I would like to ask all the prayer warriors out there to pray for my friend's daughter Hannah. Hannah was traveling to China when the plane had to be diverted to Canada due to an issue with her shunt. She had surgery today to replace the shunt and needs prayers for a speedy recovery so they can bring her home! 

Saturday, July 12, 2014

Busted out yesterday and headed home today!!

After getting the all clear from the eye MD yesterday am Jordan was cleared to finally be released!! The conclusion on the eye was that the epinephrine that was used with the lidocaine to numb the eye before the procedure was the cause of the pupil issue. Let me tell you what a relief that there wasn't a new eye issue to deal with. So we hung out in the hospital until early afternoon before heading to the hotel.  I can not begin to express how wonderful the nursing staff was at Mass Eye & Ear! Pearl, Ruth, Shannon, Caitlin all took great care of Jordan & Taylor & I. The night nursing staff always had the excitement because of her crazy low blood pressure! It would drive them crazy! They were all excited to see us go! LOL 
Our family from Rhode Island, Andrew & Yavonka, came up last night and we went out to dinner.  On our crazy drive thru Boston we passed by China Town and let me just say that was pretty amazing! As Yavonka said, it looked just like  a movie set! We enjoyed getting to see them again before we left town. Last night we all got some much needed uninterrupted sleep, which was much needed! Our flight leaves @ 1pm today and we are all anxious to get home!! I am ready to see the family & the dogs!! 
Now everyone has had lots of questions about the surgery so let me try to answer the most common oquestions  & clarify some other questions.Yes she has swelling in the face that will take about 4 weeks to totally subside. Her eyelid swelling should subside in about a week. She does have 6 incisions. One long incision on the face, one in the left crease of the nose, 2 small incisions on the outer right thigh,one long incision on the inner right thigh, & one on the eyelid. Mobility seems to be ok but she does move slower. The leg is pretty sore. The left eye does close now and should still close once the swelling subsides!  This is very exciting!!! Now for the biggest question when will she see result on the face. If this surgery is successful, & we are very POSITIVE that it will be, movement occurs in 8-12 months.  We know back to the waiting game, which to be honest sucks but the results will be worth waiting for! So for know we focus on healing, getting her mobility back to her normal, and going on with life. Jordan is ready to be done with surgeries! 
I will updated the blog later tomorrow after we get home and get settled in! Thanks for all the thoughts & prayers!! 

Thursday, July 10, 2014

So much for discharge...:(

Today, we'll I guess yesterday since I am writing this at 1:30am, was a pretty non eventful day until the afternoon. Around 2pm we went downstairs to Dr. Hadlock's office so she could place the eyelid weight and pull her bottom eyelid up before being discharged. This was a minor 30-40 min procedure.
When Dr.Hadlock came to talk to us she said she wanted to keep her an additional night for a couple of reasons. 1. The last drain, that was on inside of her leg, had yet to be pulled due to amount it kept putting out.  2. The eye procedure didn't go as smooth as she liked. We were all a little bumped about this plan but we rolled with it. 
So the new plan consisted of going ahead and pulling the drain to make sure that no fluid collection was going to build up before we headed home and to carefully watch the eye. We got back to the room about 3 and let's just say Jordan had all kinds of attention! They were checking on her about every 40 min or so and by about 5ish we had our first bump in the road! They were very concerned with the outside corner of the eye and was worried about bleeding. Jordan was also saying that the outside corner had some discomfort. The fact that she was saying the word "discomfort" was a huge RED flag!  This prompted a urgent ophthalmology consultation! While they were waiting for the eye MD to come they cut the outside sutures and she had almost instant relief. The eye MD came and it was decided that she would go downstairs to the eye ER for a complete work up. So off we went, wheeled down by Dr. Caroline Banks, Dr. Hadlock's fellow, who stayed with us the whole time during the ER visit! I can't begin to tell you how much that meant to us!! The work up was concerning for a pupillary issue. We aren't sure exactly what but something about the pupils don't react together and are not the same size.  At this point it was like too much at once and glad it wasn't bleeding behind the eye!  We got back to the room and Jordan's eye is  being checked hourly and we will trek downstairs to see the eye MD at 9am. 
Later today we hope to be discharged to the hotel & hope to be on a plane for home come Saturday!!
Unfortunately, we are used to the bumps in the road but we are flexible and Jordan just rolls with it. Her strength & resilience NEVER ceases to amaze me! 

Getting discharged today!!!

Yesterday was a pretty crazy day around here! Yesterday the facial swelling was worse, which is common but they did get to pull her face drain and she was able to take a shower!! The shower made her feel much better but that fever stayed persistent throughout the day until about 12:30 this morning when it broke!! That is also when her BP was freaking the nurses out! They are just not used to seeing a 86/41 pressure! I had to keep reminding them that this was totally normal for her and they would keep repeating it. Let's just say Jordan was very frustrated with them! 
I was ecstatic that the fever finally broke and to top it all of they had given her a pretty high dose of steroids around 11pm so she had Taylor up playing Fluxx at 1am this morning! She had Taylor & I laughing so hard last night with the funny things she kept saying! 
This morning they pulled the outside leg drain but the inside drain may need to stay in another day! They will make that final decision this afternoon. This morning the swelling is about the same and she has a nice shiner on that left eye! This is all normal! Jordan may also get the eyelid weight done today!! As most of you may know, Jordan's left eye hasn't closed since the craniotomy surgery(5/25/12). So this will make a huge difference for her & will also help protect that eye. This will depend on the facial swelling and Dr. Hadlock will make that decision this afternoon. Fingers & toes crossed for this!! Jordan & I can't wait to get more than 3 hrs of uninterrupted sleep!! Let's just sayTaylor has not missed a beat with her sleep! So I am off to pack up a hospital room so we can go to a hotel room!

Tuesday, July 8, 2014

Typical crazy post op day...

Last night Jordan rested better than usual after a surgery. One of the anesthia MD's had a brilliant idea & placed a scopolamine patch on her during surgery and left it on to see if that would help with the usual nausea & vomiting she normally has post op. Guess did one hell of a job because for the first time she had NO n/v these past 24 hrs!!  YEAH!!!!
This morning we went down early for an ultrasound to make sure the muscle flap was getting great blood flow and it was perfect!! They keep telling us how amazed it has all went so far and we are ecstatic!  We were hoping for a non eventful day but that was not to be. Jordan has spiked a low grade fever that keeps going up and down. All her labs look good except for magnesium & potassium. So tonight she has been getting IV mag, had to drink some nasty tasting potassium with Apple juice, plus getting her normal dose of IV antibiotic. So I am sitting her waiting for all the IV's to stop and the drains to be emptied before trying to get some sleep & reflecting on the other BIG positive thing. Jordan has been walking today with little assistance!!!!! I was worried about ambulation but I think it time she will be back to her normal! 
 As I am typing this she is asleep in the bed and Tay is asleep in the chair beside her with her head laid on a pillow beside her sister. It is the sweetest thing. Their bond is amazing and having Tay with her this trip has been wonderful for me & Jordan.
I am hoping tomorrow brings good lab results, NO fevers, & a little less pain for her. #prayforjordan

Monday, July 7, 2014

Surgery day!!!

We arrived promptly at 6am for check in this morning, and I was very thankful for a cab driver that didn't need directions!! Jordan went back about 7:30 and I spoke with Dr. Hadlock around 12:30.  She is VERY pleased with how everything went! She fixed the deviated septum on the left side, which opened up her nasal airway. So she has an incision in the crease of the nose and 2 small incisions on the outside of the right leg, where fascia was taken to open the airway up. Jordan said she hadn't realized what she had been missing & it was nice to have more air!
 The muscle transfer to the face went great and Dr. Hadlock  is very pleased with how "perfect" it went! This created an incision on the left side of the face which is about 7-8" long and an incision on the inside of the right leg. Not sure how long the leg incisions are, because it is all banadaged up! She also has drains in the leg and face that will stay until at least Wednesday.
Of courses he had a million questions for the nurse post op and we were also able to see the nurse Linda that took care of her after the surgery in Dec. They are all amazed and what a great patient she is! Overall she is doing great & looks amazing!! The initial post surgical ultrasound of the face sounded great & the next 24 hrs we are praying for no hematomas or clots in the vein!! 
Thanks for keeping us in your thoughts & prayers!!

Sunday, July 6, 2014

We are in Boston!

Our first day in Boston we took Taylor downtown to Faneuli Hall. We ate @ Cheers with family, took a carriage ride, and went on the awesome Ghost & Gravestone trolley tour. We had a crazy long first day and are getting a very late start today!
Tomorrow Jordan checks in at 6 am for the big day. So, we are going to enjoy our afternoon here in the city, eat lots, and enjoy our time together. 
Thanks for all the thoughts & prayers!!!