Sunday, January 19, 2014

Healing like a champ!

Molly is such a trooper.  She turned the corner earlier this week and has only improved from there.  She has had a few good nights of sleep and is in very good spirits.

I was all ready to send her to school on Monday for a few hours - until I was reminded that it was Martin Luther King, Jr. Day and we don't have school on Tuesday either.  Not quite on top of things at the moment :)

She has had a few friends stop by for a visit and that has really boosted her spirits!  I know she will be exhausted getting back into the swing of things at school, but I know it will be a good thing.

Monday, January 13, 2014

Home Again, Home Again, Jiggety Jig :)

We made it home!!  We had an extremely long travel day yesterday and are just so grateful to be home.  We boarded a plane yesterday morning in Omaha and sat at the gate for an hour before they finally cancelled the flight due to mechanical problems.  We scrambled to find another flight home and thankfully found one through Chicago.  Poor Molly is still in so much pain from her surgery and the travel really didn't help things.  We had a 5 hour lay-over in Chicago and touched down here in Raleigh around 11:30 pm.   We were in the car driving home when the clock struck midnight and we sang her "happy birthday". Such a strange night.  Paul was wide awake and was playing with his toys at 1:00 am this morning before we got him down for bed.

Today is Molly's birthday!!!  We did our very best to make it a good day for her.  She has tried her very best to keep her spirits up, but it has been hard at times.  She is understandably frustrated by her lack of independence and it is hard missing out on school.  It was heart-breaking to hear her mourn the fact that her friends were all running and playing and she was hurting and not able to do anything.

She has some wonderful friends that stopped by for a visit and really raised her spirits and helped for a little while.  Thanks to the world of technology she was also able to FaceTime with her class today, which she LOVED!!!  It is so hard seeing her go through so much in the hospital and then to see the emotional toll can be agonizing.

I know that in a few short months this will all be a distant memory, but at the moment we are exhausted and looking forward to getting her past this rough patch.

Saturday, January 11, 2014

HOORAY!! Getting discharged :)

We just got the good news that Molly's numbers were up (now 8.4) so we have been given the go-ahead for discharge :)

Going to sign off now and get this room packed up.  It's amazing how much stuff/mess we accumulate in just a few days here.

So happy Molly will be back in NC for her birthday :)

Wednesday, January 08, 2014

Post-op updates

Molly was feeling well enough to drink last night [10 pm] and suddenly was hit with nausea.  She then proceed to projectile vomit across the room.  Poor cutie.  We got back on top of her anti-nausea medications and haven't had a repeat episode, but she hasn't been feeling up to eating or drinking at the moment.

She had a rough time sleeping last night, but got little cat naps from 4-8 am.  It is hard to sleep when the nurses are coming in every 30-45 minutes to check on things or administer medications.  This is always a tough day in the recovery process, but it is going better than I expected.

Thank you all for your continued messages of support.  It means a lot to all of us.

[3:00 pm] Molly is doing quite well under the circumstances.  They have been on top of the nausea and she has even eaten a little (fruit loops seem to have been a favorite today :).  Her pain is fairly well managed at the moment.  She is resting at the moment, which is a great sign that her pain is under control.  We are so fortunate to be in such a great place for OI care.  The orthopedic and anesthesia teams have really got a handle on what works.  Tomorrow will be tough as she will probably need to move a bit more, but she is doing so much better than we imagined given all that she has been through in the past 24 hours.


[8:00 am] Molly did not get a lot of rest last night, but she does seem to be improving.  She was able to sit up for a little while, which she was very proud of!  Hooray for small victories.  Her pain seems to be under control at the moment.  Dr. Esposito came in this morning and gave her the go-ahead to open up her splints, which she was very happy about.  She said "thank you Dr. Esposito" about a dozen times :).  Poor thing was so hot in the splints and I didn't know it was OK to open them up.

Today will be a big day.  They will be removing the foley catheter and switching from IV pain medication over to oral meds.  Once that is all accomplished they want us to get her in her wheelchair for a little while.  There will be a lot of anxiety around that, but she usually does ok after the initial transition.

[7:45 pm] Molly really turned the corner this afternoon.  She did really well with her first transition to her wheelchair.  We took a lap around the floor and she spent a few minutes drawing with Jim in the playroom.  After a successful transfer and talking with the anesthesia/pain management team we stopped the IV meds (dilaudid) and switched to oral medication.  This allowed her to get all of her tubes and catheter removed.  She was elated after that!  She was singing "I'm free! This is the best day ever...." over and over.  So nice to see her happy again.  We got to go for a wagon ride down to the lobby, which is always a highlight.

She was in good spirits after that and ate more than she has so far.  She is still having pain and we are working on keeping it under control with several medicines.  She has her arm out of the splint at the moment and seems comfortable as long as it isn't being moved.

I have been trying to type this update up, but Molly is needing a lot so I will have to update later.  Sorry for any typos above... not time to proofread at the moment.

[8:30] Just got a call from Dr. Esposito... Molly was having some dizziness today, so they checked her blood earlier today and her hemoglobin and hermatocrit are low.  They gave her one unit of blood during surgery, but given her low numbers and dizziness they have decided another unit of blood would be best.  They will be infusing tonight and hopefully she will feel better.

She did not sleep much at all last night and didn't sleep today either.  I don't know if getting blood will help, but I am hoping it will.

Molly is starting to get anxious about the transfusion (this is her first while awake).  I will keep you all posted.  Please keep her in your thoughts.

They gave Molly 1/2 unit of blood around 11:30 last night.  It was a little strange having tubing full of red blood going into her port-a-cath, but thankfully it was very uneventful.  It made her understandably a little nervous, but once it started she was fine.

She and I finally both got a bit of sleep :) from 12-7 or so.

We are waiting to see Dr. Esposito to find out what the plan for today will be.  I thought that we might get to go to the Rainbow House today (like a Ronald McDonald House), but we will have to see how her levels look etc.

One cute story: last night when she took her wagon ride down to the lobby she got to get a stuffed animal (one of her favorite parts of recovery).  She was thrilled, but when we got up to the room she found a large whole in the belly of the dog.  She started talking about her grandmother fixing it when we got home, but then wanted it fixed more quickly.  She asked if maybe Dr. Esposito could fix it for her.  I mentioned it to him when he called last night to discuss the transfusion and it gave him a big smile :)

I will try to update again soon, but it has been hard to find a few minutes.... Thank you all for your continued support.  She has been loving the videos and stories - keep them coming :)

[2:15 pm] Molly's hemoglobin and hermatocrit numbers have gone up, but are still quite low.  Her hemoglobin is at 7.4 (up from 6.4 yesterday).  It was 10+ just after surgery, so they are obviously looking for the numbers to go up some more and make sure she isn't bleeding somewhere.  Fingers crossed.  They are going to give her the other 1/2 unit of blood in the next few hours and then recheck things.

She is doing well with her transfers.  She does seem to be a bit sleepy, which is most likely because of the blood issues.  Her spirits have been up and down depending on the moment, but she has generally been able to be distracted into a happy state :)

[8:30 pm] Molly did very well with her transfusion.  She is looking a bit more pink, which makes me realize how pale she was.  She has been eating well and sitting up a lot today (even sitting herself up).  What an amazing little kiddo!  They will draw blood in the morning to see what her numbers are at.  Fingers crossed for a big increase :)

Her left femur is very swollen (like 30%).  I had them contact Dr. Esposito to be sure that was to be expected.  He informed them that they broke the femur in 4 places, so the swelling was to be expected.  Wow.  Just hearing 4 places is overwhelming.

She is doing a lot better tonight and I am hopeful that this is a sign of the beginning of the healing process.  Fingers crossed!

Molly was up until about 12 with pain, but finally got comfortable and got some rest.  Apparently she and I both slept through a visit from Dr. Esposito.  Hopefully he will be back sometime today.  They drew blood this morning and her hemoglobin is up to 7.9.  An improvement, but not a huge one.  I will wait to hear what he says, but it sounds like we may need to change our flights that were scheduled for tomorrow.  That means we may be here or flying on her birthday.  Here's hoping we can make it a good day if that happens.

[9:00] We just saw Dr. Esposito.  They will draw blood this afternoon around 3 or 4 to see what her numbers are.  If they are the same then we are OK.  If they are lower, then she will have to go back into the OR so he can find the source of the bleed and take care of it.  He is assuming it is in the femur area due to what he did there and the swelling and bruising she has there.  I am calling the airline now to find out how late we can change our flights.

[12:00] We will know more about the plan around 5 or 6 pm.  Molly is trying to keep herself busy and distracted cutting up flower petals for a fairyhouse.  It is mostly working, but she is understandably bummed she is still in the hospital and that there is a chance we will still be in Omaha, or will be spending the day flying, on Monday (her birthday).  Hoping for the best outcome.

[4:00]  They drew blood for a new labs...waiting for results.

On the Road to Recovery

We are in the recovery room, starting the healing process.  There were a few rough moments last night, but overall things are looking good.

Pain is mostly under control while she is not moving.  We are moving her from her back to her side from time to time to avoid pressure sores.  She is hurting during those moves, so we are trying to time pain meds to make it as painless as possible.

Sarah and Molly stayed together in the hospital, while I (Jim) and Paul stayed at the Rainbow house.  After a marathon 2 hour session, I finally got Paul to sleep at 10:30pm.  Then, to our surprise, I got a call at 1:45am that they were here with our luggage!  Thankfully Paul fell back asleep relatively quickly.

I'm in the room with Molly now, and she just wants some time to herself to relax.

Tuesday, January 07, 2014

Ready for Surgery

We are now in what Molly used to call the "boring room" getting ready for surgery.

The schedule is running behind, but she should go in sometime in the next hour.

We are expecting it to be a 6 hour surgery, and then another hour until we see her again.

We'll be updating this post with new news as we get it.

[10:30 central time]  Molly is back for surgery.  We will be doing a new rod in her left tibia, left femur, and left humerus.  (all of her left leg, and upper arm)  He will also correct the coxa vara on the left femur.

[Noon central time]  We just got an update.  Surgery officially got under way around 11.  They are still working on the right femur right now.  Everything is still going as planned.

[1:30pm central time] The femur is now finished.  Moving on to the tibia now.  They will be checking back in after another hour.  Everything is going well so far.

[3:30pm central time]  We just talked to Dr Esposito.  The left leg is finished.  She is running a bit of a temperature, so we're going to wait and see if she cools down before taking on the left arm.  We told Dr. E to just make the judgement call based on how things look.

[4:00pm central time]  Just got another update.  We are going to go ahead and do the Left arm (humerus).  The surgery should be finished in an hour or so.

[5:15pm central time]. The surgery is finished! We just talked to Dr E, and he thought everything went well.  Molly is still sleeping.we should be able to see her in about an hour.

And in other news, the airline has found our 2 bags, and one of the car seats.

Now we're just hoping for as pain free a night is possible.

[8:20 pm central time] We are up in a room.  Molly is doing well.  She is having some pain, but it is being fairly well managed at the moment.  She is resting right now, which is a great sign.  Fingers crossed things continue in the right direction.  Thanks to you all for your messages of support and concern.

We are (finally) here

After a very long travel day, we finally made it to Omaha.

Our flight through Chicago was cancelled.
They sent us on a last minute flight to St. Louis.
That flight got stuck in Nashville.
They moved us to another plane, and then as soon as we sat down, that flight was cancelled.
We picked a flight to Kansas City the next day as our best bet of getting to Omaha.

Then, on the way to the hotel for the night in Nashville, about to give up, we found out that the snow was going to hit Nashville bad as well.

So back to the airport we went!  In the end, Southwest cut out the St. Louis leg of the Omaha flight, and did a direct flight to Omaha.

Unfortunately, 2 days later, our checked luggage is nowhere to be found.

Friday, January 03, 2014

Heading back to Omaha again

We had a great summer, and we should have done a better job updating the blog with good news along the way.

So to make up for that, here are a few pictures from Molly having fun this summer.

Unfortunately, we are now getting ready to head back to Omaha for another surgery.  Molly's left femur has something called coxa vara, where the angle of the femur at the hip has changed.  The pain has started to be common enough for Molly that she is looking forward to the surgery to help make things better.

While we are there, we may also replace a rod in her left tibia that is leaving a lot of bone unprotected:

We will be updating the blog with progress next week.  (seems to be much better than us e-mailing everyone)