Rodding surgery

Ethan is 11 days post op today and I finally have a few minutes to update.

Ethan is doing well.  We have had a few bumps in the road to recovery but he seems to have turned a corner and it won't be long before he is up terrorizing our dogs again.

We flew into Omaha on Sunday and met up with our friends, the Busby's.  It was fantastic to see them and catch up.  E and R had a fantastic time chasing one another and giggling.  :)

E and R

The next day was surgery day so we headed into the hospital at 11am.  E's surgery was scheduled for 1pm.  Our first road bump came in the form of a scab on Ethan's lower right leg.  When Dr. E saw it he immediately said he would not be able to replace the right tibia rod.  Initially I was ready to panic because this rod, of the 3 being replaced, was in the worst shape.  Ethan had fallen the weekend before and scraped his leg.  It never occurred to me that this would be a problem, but Dr. E explained that any skin blemish (such as this scab) harbors bacteria and he did not want to take the chance of operating and then having E get a bone infection.  I know of a few other kids that have bone infections and it is NOT something we wanted to risk, so I quickly got over my panic and we moved on to plan B.  Since Dr. E was not going to replace this rod, he now had time to rod E's right femur.

Ethan was given Versed before he was wheeled back for surgery and he went without a peep.  He was just looking around and holding onto Mickey Mouse.  At this point during E's first rodding surgery I burst into tears and was a mess.  This time I held it together (yay me) and we went to wait the 5 hrs for surgery to be over.

The time went by so quickly thanks to a visit from the Schoepner's.  They live in Omaha and came to sit with us while we waited.  I can't express enough thanks for this.  Having another Mama there (and her fantastic kids) to chat with was fantastic.  The nurse liason was also fantastic.  She came out every 30 minutes with an update.  E's surgery went very well and Dr. E actually finished early and was done in 4 hours with minimal blood loss.  So, he had 2 rods replaced (left femur and tib) and a rod placed in the right femur for the first time.

We were able to see Ethan as we followed him up to his room.  He was doing well but wanted Mommy's hand.  His pain was controlled with the epidural initially but we soon found he was having issues with spasms.  He was supposed to have been given Valium in the OR so there was a little confusion about whether he could have more or not.  It turned out he had not gotten it, but once he did he was quite happy.  He was moving his legs all over the place, picking them up, rolling over onto his tummy.  We had to repeatedly untangle him since he kept getting all of the lines wrapped around him.

Giving Mommy hugs after getting to his room

Awake and watching movies on the IPad

Eating 

We had a fantastic Nurse Practitioner from Anesthesia that responded quickly with everything we needed so pain control after this surgery was the best yet!  On day 2 Ethan was fitted for a hip spica brace.  It was not fun having it put on him as he screamed the entire time.  :(  He was more stable with it on but the waist part was quite bulky and made it very difficult for me to lift him.

E received some surprises while in the hospital.  The Busby's sent him a plush doggy since they knew he would be missing his dogs.  The Schoepner's visited and each of the kids made him a card (very cute by the way) and a giant book of stickers.  The Parker's sent him a package that included a pop rocketz and flashlight.  E really loved the rocket.  He was squealing with delight and it was awesome to see him so happy.  :)

My new toys and the hip spica brace

Ethan also had a few visitors while in the hospital:

E and Gracie the Therapy Dog

E and Dr. E (our hero)

E and Anna.  Anna has OI as well and was here for surgery too 

Ethan was discharged on Thursday evening and was happy to see that he had visitors.  Uncle Shaun came on Thursday and Nana and Papa Desai came on Friday night to spend the weekend with him.   They came bearing gifts as well, but I don't seem to have photos.  Ethan is one lucky little guy to have so many people that care about him.  :)

Our next road bump came in the form of the hip spica brace.  Ethan was uncomfortable in it and I was having a really hard time holding him.  After a quick call to Dr. E, we decided to remove the brace and put the post surgical splints back on.  He seemed more comfortable in the splints and all was well until I unwrapped his left leg to rewrap the ace bandage that was slipping.  I found this:

Blood blister

I was ready to rush him back to the hospital, but Neel and his Mom assured me it was just a blood blister.  They ran to a Walgreens down the street and picked up some items to clean and cover it.  This is the same place that the metal bracket was on the spica brace, so I have to assume it was either too tight or ill fitting in this area.  Needless to say, I am so happy we decided to remove the brace.

The rest of the weekend was uneventful and we had a great visit with Neel's family.  Ethan had a lot of fun playing with them and showing off all of his new tricks or new words/sentences since the last time they saw one another.

We have been home since Sunday and other than some sleep issues (to be expected with Ethan) we have been doing well.  We did have another issue with the splints.  Ethan was complaining about pain on his lower left leg on and off, so when I rewrapped him I saw a bruise and what looked like another blister forming on his foot near the ankle.  :(  So, I decided to splint him myself with a SAM splint temporarily until we could get something more permanent.  Well so far the SAM splint with Coban over it is holding up nicely and yesterday I did the right leg as well since I saw a red spot on his right knee.  The old splints had indentations in them and this was creating pressure points.  So, E had a good day yesterday and a decent night.  I think we have turned a corner!  Yippee!

Since coming home, Ethan has also received another gift from our buddies at FAM.  FAM is an online group of Mamas that all met online when we were pregnant at the same time.  So we have been friends since before our babies were born.  They have been with us since we found out something was up with our pregnancy and have always been so supporting and caring.  I love these ladies and their kids.  They got together and sent Ethan a LeapPad.  He is a gadgety guy so it was a perfect gift for him.  He is learning how to use it and really enjoying it.  We recorded a Thank You:

We go back to Omaha in November for clinic, so Ethan will have surgery again (on his right tib) at that time but the recovery time for just 1 bone will be much faster.  He will have his current splints on for 3-4 weeks.  We have xrays scheduled for 9/22 and depending on the results, he may get to remove the splints at that time.