Ugh..Sorry no update for so long

9 Aug

Saturday, August 9, 2008

This will be brief…as I am sneezing non-stop but it is bugging me that we haven’t written for awhile and I know many are wondering how Molly is doing. She is doing so well considering everything she has been through. She says she doesn’t even feel like she has had her back operated on other than the fact that she has pain in her shoulders from the muscles healing and needs meds for that every day here and there.

I want to write more and include more pics but as I keep sneezing…I will have to do that after this attack.

Molly is feeling great and wouldn’t mind company. Just call us to come over and visit!!!!! PLEASE!
(She is very bored.)

But I’ll add more by tomorrow…..

Thanks!

Lysanne

Molly update

29 Jul

Monday, 9:00 pm

Well, Molly is coming along nicely. She seems to be responding nicely to the antibiotics for her rashes. Brittany, from Dr. Hey’s office called this morning and they had been reviewing the photos I had sent them of the rashes. They had a dermatologist look at the photos and they are pretty sure it is the Erythema multiforme syndrome on her arms and on her legs, as well as possibly Toxic Epidermal Necrolysis not staph as we thought.

They told us we need to take Molls to a dermatologist this week to make sure it is truly being contained, per se as we don’t want this kind of syndrome to get out of hand as you can read about in the green links above about the syndromes…

These are not contagious infections but severe reactions to antibiotics.

Molly had a friend stop by on Friday and she had a nice visit. Her Grandma, (Ron’s mom) who had been out of town and just returned late last night, came by today to see Molly. They had a very nice visit too.

Molly’s cousins and aunt (my sis) are coming in tomorrow till Wednesday evening but Molly is up for visitors and would love some company. She is getting down at times since she can’t really do much. She’d love for friends to stop by or come and watch a movie with her. Molly came up with the idea of having visiting hours so that we would all be prepared for that… So during the day we thought, if you’d like to stop by and see her between 2pm and 5pm, starting Thursday, that would be fine. No real appt. necessary! Although you can call or email, if you’d like too.

I know some would like to stop by in the evening, and that is fine too… just give me a call on that one but she does well until about 8pm and then her pain really kicks in again.

Meanwhile, my mom was admitted to the hospital here in town on Saturday. She had come down with 104.5 fever and a seizure and they are still trying to figure out what is going on with that. She had recently been diagnosed with liver cancer (really breast cancer that metastisized) about 5 weeks ago so we were worried it was in her brain. But they did a brain ct and all is fine. All other tests were good so they were running blood cultures on her to see if she had a blood infection. They also ran an eeg on her today to see if they could see if she had a stroke. The fever is down now but Molly’s docs and the ER docs had said we need to not visit my mom since we don’t know what is causing her symptoms. We can’t chance bringing back any unknown germs that would cause such a high fever in an adult into our home because if Molly got it, it would be very dangerous for her. And it is hard on my mom, since we can’t visit, and of course we feel very bad but we have to look out for Molly too. So, in the Ryan household, when it rains, it pours.

We are hoping my mother will get better soon and they will know what is going on with her as I know she is anxious to see Molly too.

So please don’t hesitate to stop by and visit during those times, (as long as you are healthy) if they are convenient or give us a call to stop by at a different time! We’d love to see you!

Lysanne

We made it home…

25 Jul

Friday, 5:10pm

Well, I am very sorry for not writing for a day. It has been a whirlwind of activity getting used to taking care of Molly but don’t get me wrong, she is doing exceptionally well!

We arrived home on Wednesday evening about 7:30pm after several hours of travel from Columbus, OH.


A cool truck we just had to photograph for Matt as he loves motorcycles.


Matthew jamming to “Knock on Wood”. We listened to the 70’s station for a while!

And waiting for Molly, were some of her girlfriends and neighbors and her dog, Piper! They had this huge sign hung on to a van, so as we drove down the street, she could read it. It was so cool.

Then I have never seen her hustle out so fast to greet her friends! There were lots of hugs and smiles and “you did it”s for Molly.

But the big surprise for Molly, was that Ron and I had planned to redo her room. Now she knew it was being painted and that Grandma had bought her a new mattress set but she didn’t know the rest. Her girlfriends, Sydney, Taylor, Cassi, Katrina, Wren, Megan had come over with Sydney’s mom, Wren and Megan’s mom, Mrs. Caruso, and Mrs. Bartholomew and decorated and rearranged her whole room in a “While You Were Out” fashion! It was gorgeous!


Seeing her room!


Taking it all in!


The girls and Molly.


Elation and joy!


Her new room….


Her bookcase so carefully decorated!


The tv is temporary…I am not a believer of having the tv in their bedrooms!


The big Get Well Card.


The inside of the big Get Well Card.


Close up of the big sign that was out front.

And Molly keeps wanting to be in there to just soak it up! My girlfriends, Christina and Deb, went above and beyond!! Christina painted her whole room in colors that Molly had chosen and Deb and her husband Joe, refinished Molly’s hardwood floors. Christina and I were debating what to do with the floors, as they were highly damaged (paint, circular saw marks, and staple marks from previous owners) and were contemplating giving it a whitewashed look. But Joe took a peek while we were already away and said “No way, we are going to refinish these!”

I am telling you with tears in my eyes, how amazing our friends are! Ron, Molly, and I are in awestruck and speechless still. We can’t possibly begin to thank them for all that they did. Because that isn’t all…. Deb and one of her sons, came out and planted some hostas in our back yard, one of her other sons helped take care of the yard, our neighbor handled our trash and recycling, and Christina and Deb did a ton more work on the bathroom that Christina and I were so desperately trying to remodel before I left.

We had torn out walls in the shower and ripped up flooring to put ceramic tile down. I had picked out paint, purchased a shower curtain, a light fixture, a mirror and magically, Christina and Deb had most to the bathroom finished by the time we returned!!!


Our new floor!

I am just floored and humbled! These women are amazing friends and we can’t wait to help them out in some major remodeling project now!!

After all the hubbub of our return died down, I unfortunately had to take Molly to Borgess ER for her very bad rash on her legs which has thickened her skin and actually her skin had rolled off. Turned out it was good I did, it is possibly a staph infection and she had a urinary tract infection as well. (Common to get after surgeries and hospital stays.)

But I had also noticed a spot on Molly’s arm on Tuesday, that I thought was this other infection moving upward to her arms and brought that to the attention of the docs. They are watching this spot carefully to make sure it is not an allergic reaction to something she had previously and this syndrome is called Erythema Multiforme. The good thing is that these type of markings tend to show up bilaterally and Molly’s appears to be only on one arm. We have taken photos of her arm and other rash for ourselves to make sure that they are not getting worse. We were also told to draw with permanent marker around her arm rash and date it, so we can see if it changes in size.

Molly was put on a non-sulfa based antibiotic to help the uti and a spray for her legs. She seems to be feeling much, much better now although the docs told us it would be 3-4 weeks before the skin on her inner legs would look well again.


The loads of meds she is on!


Her scar!

She is doing wonderfully though! And here are pics to prove it.


With her girlfriend.


Hanging out and catching up on “Design Star.”

I’ll have Molly write in soon! She is going to be very busy writing many thank yous as she recuperates here! We are amazed at everyone’s generosity, thoughtfulness and thankful for the many, many prayers!!!

We’re on our last leg of our trip home…

23 Jul

Wed: 9:45am

Well, Monday and Tuesday were busy days. Monday we FINALLY got discharged at about 1:30pm. Dr. Hey had discharged Molly that morning but our nurse had 5 other patients up on a floor she wasn’t familiar with and on a floor that didn’t seem to like the fact that all the orthopedic surgical patients HAD to be moved up there. It felt kind of like they felt we were intruding on them big time.

Anyway, Philip from down in the medical equipment area finally came up with Molly’s stuff she’ll need to make life easier at home. He had to order them and wait for that delivery.

Like I had said the other day, Dr. Hey surprised us and showed up to say goodbye to Molly even though he was supposed to be on vacation!


Dr. Hey and Molly on Monday, discharge day.


This is in her “new” room up on the 5th floor. Molly liked this little bookcase to display her animals and flowers!

Molly finally felt like eating a little breakfast on Monday. Her first time really eating.


Here is Molly trying to check her email. It is very hard for her to type still as her arms pull at her back when she raises them.


Taking one last spin with Kristin, one of her physical therapists.

Dr. Hey had called ron around 12:30 and told him to have Molly and I come over to his office for xrays and a good bye shot. But, the hospital wouldn’t let us leave until we were fully discharged. Dr. Hey really wanted us there (as I am guessing he should have been home because he “was on vacation”. But hospital politics, understandably, won out. We were ready at around noon finally with paperwork signed but then they wouldn’t let us go until Molly’s stuff was out of the room. And Ron and the boys were in town somewhere at a Target stocking up on some travel goodies.

Ron and boys arrived around 1:15pm and we were finally allowed to leave. Yeah!


Getting discharged!!!

At Dr. Hey’s office, Molly got another set of “long” xrays taken. Her correction turns out to be more like 45 degrees vs. the 32 we thought in surgery. In surgery, the portable xray machine can’t get the whole spine to assess the whole curve. Her 45 degrees still is within the realm of high normal.


Here is a team picture with her xray in the background.


Formal Long xray post op taken at Dr. Hey’s.


Formal front view post op.

It was over 100.1 degrees when we walked out into the Raleigh air! And the humidity was unbearable. And there was Ron trying to reorganize our van for Molly’s belongings in this heat. I helped him and by the time we were done we were both dripping!

We hit the CVS pharmacy for filling Molly’s Rxs and by the time we left Raleigh, it was 3:45pm.

We decided originally to drive to Beckley, WV, about 4 hours away. Molly did excellent in the car and our only mandate that we had to follow, was to get Molly up and walking every 2 hours.


Here she is using her muscles to get out of the car.


In the car.


Connor.


Silly Matt.


Out like a light with all her pillows!


Pilot Mountain.


Connor drawing, drawing, drawing.


One of Con’s works of art.


Matt watching a movie.


A redneck and proud of it.


And Matthew would yell out “Look at that crack” every time we saw these! It was cute!


Another runaway ramp. We heard a story about a family who decided to pull off on one of these for a picnic…and well, I guess a truck needed it…. end of story.


Dad looking pretty annoyed by my documentation of the trip.


Driving by the Charleston, WV Capitol building we were in at the beginning of our trip.

It was shortly after 9pm or so when we decided to go another hour to Charleston, WV to hit the Embassy Suites we were at on the way down. Unfortunately, when we arrived at about 10:30pm, we found out there wasn’t a hotel available in the entire Capitol of West Virginia! Charleston has a population of about 50,000 people but on this day there were over 6000 more travelers in town for a Free Will Baptist National Convention!!! It was nuts.

We drove and drove around with me with my laptop open trying to hijack someone’s wireless connection so we could find a hotel elsewhere. No luck, everyone was smart and had wep passwords. Ron found a wifi McDonald’s through his palm pilot and we headed there at about midnight!!! For $2.95 we got 2 hours of wifi access and found some hotels to start calling. I didn’t trust that person that said the hotel was full so we started calling all the “suites” hotels. We got a Country Inn and Suites number that told us they were full, but their sister hotel, Comfort Suites, had rooms and they shared the same parking lot.

So, at about 1 am, we checked in. Lesson learned, make reservations ahead. I always do, but we thought this trip home, we’d wing it with Molly and how much she could handle. Big mistake.

We all slept in till 10am yesterday (Tuesday) and then we managed to get a late checkout of 1pm. Taking care of Molly is quite labor intensive and we needed all that extra time. Plus, I wasn’t leaving till we had a hotel reservation for last night. We decided to take the remaining trip in 2 days. Less travel on yesterday and we headed to Columbus, OH.

Molly had her first trip out to an Ihop for a late afternoon breakfast. We brought a pillow in with her for her back and the folks at Ihop were very accomodating for us, as we didn’t know whether a booth or a table would be better for her. It turned out to be the booth and she did well for a short period of time.


Ihop

At one point, Molly was coloring on one of the kids’ menus (she’ll often just grab the menu for the paper and grab a crayon and start doodling out of boredom at restaurants) they left at the table and she said… “How pathetic is this, I am coloring the picture on the actual menu… Someday I’ll be on a date and still be coloring on the menu!”


Coloring but also looking annoyed with Mom here.


Molly and mom.


Dad and Matt. Matt insisted I capture this moment.

The trip to Columbus was pretty. We were traveling on a one lane road through the country. We passed many farms.


A nuclear power plant so very close! Yowsa. It was quitting time when we went by and there were so many people exiting the plant they had police directing traffic. But at first glance, it looked like an emergency and we were in it! Briefly scary.


Dad (Ron) taking a photo of himself!


Where the Kanawha and the Ohio rivers meet.


Welcome to Ohio.


Car 54 Where are you?

At one point, I called Dr. Hey around 7pm. Earlier, I had figured out where a pharmacy would be near our hotel by calling the hotel. Molly’s rash on her legs was getting very blistery and was more painful than the back pain at the time. I also noticed late last night while getting her up around 3am for meds, that she has a spot on her arm too. Ugh. Anyway, I called Dr. Hey, and he said “Wow, I was just thinking about you all 2 minutes ago during dinner and was getting ready to call you and see where you all were!” So, I let him know about Molly’s increasing pain with the infection and he called us back with what to do. Infections are common after surgeries because the antibiotics they give you are so strong, they mess up the good bacteria in our bodies. You can end up with infections inside your body, outside like Molly’s, or even inside your throat (Thrush).


Downtown Columbus.


Connor looking out our bedroom window across the Sciotto river and the Cosi Museum. The Supreme Court is the building to the left.


A closer view of the Cosi Museum.


Another view of the Supreme Court.


A pretty fountain with words… We could make out Wisdom, Peason, Compassion, Truth, Honesty, Integrity, Tranquility.

We are in a Doubletree Suites and it is very nice. We have a riverview looking out with the Supreme Court and The Board of Education right across the street.

We checked in around 8:30pm and got settled in. I got Molly showered and cleaned and we settled all in to watch a movie.

I get up a couple times a night on a schedule to make sure Molly’s meds are given. We have a chart we have to keep track of them all. She has oxycodone, Valium, Motrin 800mg, Tylenol ES, and lactobacillus acidophilus. But her pain is fairly well managed.

Today we woke up around 9am and the kids are watching tv right now. Ron ran out to Subway and picked us up some breakfast sandwiches. Yummy. We will check out at around noon or so and head home to Kalamazoo.

We expect to be there around 7pm tonight, fingers crossed! Which the boys and I have decided that finger crossing must have come from a form of making the sign of the cross, thus a sort of prayer!

We are excited to get home but Molly’s journey will still be long for her road to recovery.
She isn’t allowed to lift anything more than 5 lbs for quite a while!

Lastly, I am trying to figure out a way to share the surgical photos. If you click the link below, try selecting slideshow, a little grey movie screen at the top right, to watch them. Click her for graphic surgery photos I hope it works for you.

If not I will figure it out tomorrow.

Well, I will sign off now so as to eat my breakfast sandwich and to start packing.

-Lysanne

We’re headed to Columbus now

22 Jul

1:10pm
We made it to Charleston, WV last night late. Long story, I’ll explain later today. We have a short 3.5 hour drive to Columbus, Oh today. I’ll update blog and fill you in then. We are working on getting out of here for a late check out.

Thanks,

Bye

Wow! She is doing great!

21 Jul

9:30 pm

Hi all,

Sorry I didn’t write so soon. It is hard as I do have to do a bit of care for Molly all day long. Today, Jaclyn, the P.A. (Physician’s assistant for Dr. Hey) came in to see how she was doing. She is really nice and pretty.


Molly and Jaclyn

She explained a lot about her surgery and we looked at her pictures and she told us what was going on in them.

Then Lisa, her physical therapist came in and she walked twice today. The 2nd time Molly walked down to the temporary Homeward bound gym. I say temporary because they are building a newer one. I forgot to take photos of Molly in there (I was videotaping instead). Molly learned how to go up and down stairs and how to get in and out of a car. They had a car set up there and she could practice that difficult entry and exit.

Today, Molly got her last iv port removed. She felt a lot better today and stayed awake most of the day!!! She has read a little of her Twilight Series book, Eclipse…and she watched the rest of The Pacifier from last night. We watched that last night as a family and she fell asleep so she wanted to see the ending.

Later in the day, there was some reason they needed to move all the people on the 3rd floor up to the 5th floor. So, now she is in a nice but smaller room up here.


Here is Molly and her dad in her new room.

Better view but at least we are all packed up for tomorrow because Molly gets discharged tomorrow!!! She is excited. We will go over to Dr. Hey’s office which is right here in the hospital to get measured officially and to get more xrays before we leave. Dr. Hey phoned us today to see how she was doing. He, ironically, had a sore back so he was laying low today.

Ron took the boys to another movie today. Lucky boys. They went to see Wall-E and loved it. All of them. I took the boys to Journey to the Center of the Earth 3D yesterday. We went to this nice area just a couple miles away called North Hills Shopping Center. It is wild and nice. It was bustling and like a mixture of Beverly Hills, a Walt Disney World Main Street feel, and a really nice mall but all outside. I can’t explain or give it justice but it was cool. And the movie was fun and we enjoyed it.

Molly actually requested to put on real clothes today, which is a challenge since she isn’t allowed to bend at all or twist in any fashion but I helped her and she is very comfy now. She is going to learn to take a shower tonight too.


Molly giving all her classmates at home a big thumbs up!


And here she is waving to all her family and friends!


And chatting on the phone with Sydney!

So, I can only say that our experience here at Duke Raleigh has been very top notch. The care and attention has been so special. One of Molly’s favorite nurses was Mary Ellen.


This is Molly and Mary Ellen, in the middle of the night, about 2 am last night!

She was Molly’s night nurse from 7pm to 7am for all of our nights here. And she is so funny and nice! She is originally from Michigan (30 years ago) but now has the bonafide Southern drawl. We stick out like a sore thumb here with our nasally Midwestern accents. We are going to miss Mary Ellen tonight as she is off now. Boo hoo.

We have had awesome care from Terry, Molly’s day nurse too!!! We will miss these fine ladies.

Tomorrow we plan on starting on our journey home and will let Molly dictate how far we go as far as her comfort level. We also have to stop every hour or so to let her walk and get out. She is not supposed to sit upright for more than an hour. She can be reclined though.

Now tomorrow we will put some graphic surgery photos from her surgery that Dr. Hey took for Molly. Look or don’t look…it’s up to you.

Bye for now!

We haven’t left yet…

21 Jul

12:30 pm

Well, we are just waiting for all the formalities to be finished up before we can leave the hospital. Things like Rxs being brought up from the pharmacy, the hospital aids that Molly needs for home like the shower seat and a special taller “commode” seat, etc. We are just in limbo land and waiting.

Molly took her first shower today. It was a bit difficult and painful but she sat on a seat and I helped her with her hair and all but she feels much better now!

This morning Jaclyn and Brittney came in from Dr. Hey’s office. They checked in on Molly to see how she was doing. I asked them why they weren’t in surgery this morning and they told us Dr. Hey was on vacation this week. So, I was a bit bummed that I wouldn’t be able to get an after shot with Dr. Hey and Molly, oh well. Jaclyn asked us to come back over to Dr. Hey’s office for Molly’s official measuring and her xrays. So we will do that after we get discharged.

But about a half hour later, Dr. Hey showed up!!! He came in to say goodbye to Molly! How cool is that? He kept telling everyone in the halls, he wasn’t really there! So, I was able to get that photo after all. Unfortunately, Dr. Hey has one of my usb cords that I use to transfer the images off of Molly’s camera on to my computer. He borrowed it and one of my hard drives so he could put Molly’s recovery videos we have been taking, on my hard drive for us. He is so nice. So, I will get my usb cord when we get back to his office and my hard drive.

Then the Shebra, Molly’s case manager came in to go over what we were going to need for discharge…which is the commode thingy and the shower seat. She said she would send Philip up from 2nd floor to go over that stuff and get that to us. Although that was a couple hours ago. I think Phillip has forgotten about us.

Now, lunch will be served and we will enjoy hamburgers. I packed up everything and now we wait.

Ron and the boys got all checked out of the hotel and packed up and cleaned out the minivan. He is on his way to Target to buy some traveling snacks and groceries, as well as 2 new pillows for Molly for travel. Then he will gas up the van, check the air in the tires and head over here, hopefully when we are discharged. This room is small so the boys will drive us bonkers in it, hee hee.

So, later tonight when we get where we get…I will upload more images from today and let you know her formal height!

We are not sure how far we are going, we’ll just go for a few hours and see how Molly does. She is ready to move out of here though.