Medical Monday - June 26

 Whew - I feel like we've been here forever, but really we've only been here for 10 days! Quantum House has been absolutely perfect and I am so thankful that we were able to get in here. I could literally see the facility from our hospital room. Being this close to the hospital made it so easy to pop back and forth as I needed, grab supplies, swap out clothes, get cleaned up, etc. which made a world of difference! When they let us know we would for sure be getting discharged yesterday, I was able to go ahead and bring all of our stuff and equipment back to the House so that it was set up and ready once we got back!

We got back to the House around 1:00 yesterday; I know my "we're out of here!" posts said there would be a more detailed update later but we were both so exhausted it just never happened! Lexi went to sleep about an hour after we got back and settled in and slept pretty much until 5:30/6:00. She woke up and opened her new round of cards. We aren't allowed to hang things on the wall but we figured out a creative way to display them so she can be reminded daily of all the people praying for her and sending her well wishes! We're going to have to figure out a rotation system though because we're already out of space 😂

Anyway, we both had a decent sleep in real beds, with real blankets and real pillows. She was a little down this morning about whether she made the right decision to have this surgery because everything is really hard now; she can't sit up by herself, she can't get in and out of bed, etc. All the little things that would be hard for anyone to have stripped away from them. We would appreciate some extra prayers for her mental strength during the recovery time.

We had a follow up with Dr. A - the neurologist - this morning and he said everything on her spine looked great! She has a 1.5 inch incision in the small of her back that is healing beautifully, she's not having any issues with numbness or tingling sensations so he has no concerns. Tomorrow and Wednesday we start physical therapy which will mostly focus on her hip. As you'll remember from the awesome video I made about her surgery, they shortened her femur bone to accommodate the length difference between her leg and the tendons, but that's not an option with the hip bone so he said that will always feel a little tight for her and will require daily stretching to keep it loose and straight. Gravity will help tremendously once she is able to bear weight in her legs, but until then we have to make her stretch it out. 😩 He said it was similar to someone with perpetually tight hamstrings; before any exercise when they stretch, it's going to be sore and hurt until the muscle loosens up and relaxes.

We'll round out the week with Pre-Op for surgery #2 on Thursday and then move into the holiday weekend with out marching orders for while all of the offices are closed. It's hard to believe it's already time for the left leg but it'll be next Wednesday before we know it! I'm hoping that our inpatient stay will not be as long now that we all have a better idea of what to expect, but who knows!

Post Op Day #3

Waited to write this earlier hoping we would have great news to share, but instead we’re hoping for “maybe tomorrow” 😕 And then I just forgot to post it.

There is some good news though: she slept from about 9:30ish until almost 3:30ish with no interruptions! Then she woke up and all of the junk that had settled in her lungs decided it needed to finally start coming out. Good thing is that it’s all out now; bad thing is that it made her heart rate and respiratory rate crazy high and not really coming back down so they aren’t comfortable letting us go yet. Her blood pressure has balanced out though so that’s one box to check off! 

We got out of bed three different times today, each time for a little longer. Helps me practice transferring and her with movement. First time was a cleanup after this morning, second time we tackled the 4 day bed head, and last time we got in a dew rounds of Uno!

Everything has been steady and stable since about noon so prayers for an uneventful night and no more curve balls so we can head out tomorrow!

Thank you so much to everyone who sent cards with us or have mailed them to us. She has had a few get delivered each day and loves getting to see them all! If you'd like the address, please let me know and I'll send it to you!

Post Op Day #2 - June 23, 2023

She has done SO well today! Now that her pain level is down, the oxycontin is helping keep things much more manageable. They have started stepping back the morphine since we can’t go home with it and so far it has been tolerable.

She has been out of bed twice; longer each time. They unwrapped her leg to let it breathe and to ice it. She has had quite a bit of swelling in her foot so we are having a hard time balancing the need to keep her foot elevated, but her hip joint straight, without laying her down flat which won’t work for her lungs. SO…

We will be spending one more night here to hopefully get the swelling issue taken care of, as well as letting her heart rate and blood pressure balance out because they keep going in opposite directions which is causing her some temperature and lightheadedness issues. If those two things don't move into a more acceptable range, we will stay until Sunday.

Overnight Update - June 22

 We had a pretty rough night. As usual, your metabolism was running at full speed so you were burning through the pain meds way more quickly that they were able to give them so for the last 20-30 minutes of each dose period you were pretty uncomfortable. We also found out that oxycontin has absolutely NO impact on you, but the morphine kicked in suuuuper quick! Most of today is going to be spent working on pain management and resting. Mama got a solid 3.5 hours of sleep (not all at once) in between bouts of pain, repositioning, wound dressing checks and breathing treatments. Crossing all the fingers we both have a better night!

Dr. Feldman and his team came by and are super happy with how the surgery went. We did talk some about working on getting your leg off of the pillows they were propped up on and flat on the bed so that gravity can help your hip open up some. But he also recognized that we are fighting 9 years of that joint being bent to some degree and that it is pretty tender right now. We will start PT on Monday working on laying flat and getting the hip joint stretched out. 

Dr. Asadi also came by to check in on you and test some of the feeling in your feet and legs to make sure all of the nerves are still working. 

Overall, good progress. Everyone that has come by says today will be the hardest day but then things will start leveling out pain-wise. We'll start your feeds back at a very slow rate to make sure your system tolerates it before moving back to full feeds tonight.

Keep fighting - you're doing great!

Surgery Day #1 - Spine and Right Knee

(Posted a day late)

Whew what a day! Started (not so) bright and early at 4:15 am; we were out the door by 4:50 to drive across the hospital campus to the surgery center. Another huge blessing of being at Quantum House is that everything happens right here! Got checked in at 5:00 and taken back to pre-op pretty quickly. That’s when she revolted and refused to take the anti-anxiety medicine which resulted in 3 of us having to hold her down while they put in IV. 3 grown adults vs a 42 lb kid. She almost won 🤷‍♀️ Once the IV was in, they gave her the versed anyway and she was fine - already working on a better plan for next time.

They took her back around 7:15ish; came out around 9:00 to let me know they just got started because they had some difficulty intubating her. Whether it was from some congestion or her screaming for 20 minutes, her airway was super irritated and constricted and she had some bronchospasms.

After that, everything went really well. Spinal cord tether was taken care of with no issues; nerves functioned perfectly the entire time. He was able to close with internal sutures that will dissolve and just steri-strips on the outside so no need to do anything else back there.

Knee release went better than anticipated! We were hoping to go from 90* bend to 30-40* but he was able to get it all the way to 0* without any issues 🥳

Look at that straight leg 😍😍

After that, I got to wait two more hours while they closed until they finally let me back into recovery. We got moved to PICU pretty quickly after and she is settled in and resting. She is semi-awake but says she has no pain; they’ll keep her pretty medicated the first day and half.

She did wake up briefly and I showed her a picture if her leg. When I told her they were able to get all the way to 0* her eyes got huge and she gave me a big smile and sleepily said “my dream!!!” 😭😍😭😍

Thank you all for your prayers, thoughts, and well wishes. Please keep them coming!

Medical Monday - June 19

 Last week's post was short and simple: here we go!

This week, we have some catching up to do!

We took our time getting from Texas to Florida - 5 days of driving, swimming, playing in the sand and a few other things along the way, like feeding giraffes and visiting the Kennedy Space Center! I highly recommend the Jacksonville Zoo if you're ever in that area. We were there for almost 5 hours and barely got to see everything! 

We got to our final stopping place Friday evening around 6:00, unloaded the car and crashed! Most of Saturday was spent unpacking, settling in, making the rounds between Target, WalMart and the grocery store to get everything we needed/forgot and just trying to figure out what is what at Quantum House. Things have been amazing so far and I am so thankful that we were able to get a spot for our stay here! After a shy first couple of days, Lexi has found herself a group to hang out with and they were all bouncing between the rooms this afternoon! They have a craft/activity of some sort almost everyday, and therapy dogs come visit several times a week. Today, the fire department came by and showed the kids the engine. 

We had her Pre-Op appointment for surgery #1 this morning; everything went well, just standard medical history review, met the anesthesiologist, talked to the surgical team one more time, etc. They are going to end up doing a small release of her hip muscles after looking at the MRIs just to make sure that her legs have all the room they need for stretching down. They will call tomorrow once the surgical schedule is finalized to let us know what time we are up!

About an hour after her appointment, the office called back and said the spine specialist wants us to come back in tomorrow for a consult after reviewing her MRIs. Not sure what he saw, but would appreciate some extra thoughts/prayers/well wishes tomorrow morning for that appointment.

I'll post an update tomorrow once we find out the surgery time and will keep you all updated on Wednesday!

Medical Monday - June 5

 We are one week away from leaving! 

Left on the to-do list:

• Pack - clothes, books, games, and all of the "necessities" for our stay
• Laundry - should probably be listed first but there is a lot to get done so I'm procrastinating
• Clean refrigerator - we've been eating a lot of random things this week
• Car checkup - oil change, tire check, brake check... probably important to get done
• Party prep - we're having a Surgery Send Off party on Saturday. If you're local and want to attend let me know and I'll send you the details.

We're in a weird holding pattern where it's too soon to really be doing all of the final packing, but there isn't anything left to do until then so we're just waiting for Thursday and Friday to knock out the final items.

And then we drive. and drive. and drive. and drive some more.

Thank you for all of the gift and thoughts and prayers that you have all have sent our way. We appreciate all of the support and continued encouragement!

We got a call last week that the first surgery was moved from Tuesday to Wednesday, but other than that we are good to go - all of the specialists have given their clearance and we are ready to rock!