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!

Medical Monday - May 29

 Well today’s post almost didn’t as we had a busier day than I thought it would be! Today’s focus is on prepping and packing, which is tedious enough for a normal trip, but trying to plan for 8 weeks and a 5 day drive has been…fun? For my Type A, over planning brain it has been a little stressful knowing that about 90% of the packing can’t actually happen until 3 or 4 days before we leave because we still need clothes, and medicines, and equipment and all that jazz. So that leaves us here:

These tubs have been on my dining room table for about 2 weeks and I have been slowly collecting items that we don’t use daily and putting them in the assigned tub…

Because of course each tub has an associated, detailed packing list 🤷‍♀️

So the plan is that these four tubs will go in the back of the car and hold everything that we don’t need on the drive to Florida. We’ll have one suitcase with travel clothes, and of course beach stuff, for the trip. So all that leaves is feeding pump and supplies, percussive vest, nebulizer and supplies, and a wheelchair to fit…somewhere. I think I have a plan but we’ll find out the day before when we load up how good my spatial skills are 😳.

Other updates:

We’ve finished appointments with GI, Pulmonology, and her pediatrician. Added some extra breathing treatments to make sure her lungs are as strong as possible before surgery (thanks to all the Central Texas allergens and constant storms blowing through we’ve had some struggles this month.) We picked up her new manual chair last Thursday (that’s the one going with us) so she’s been building up her arm strength and endurance as much as we can. This week we check ENT off the list and get her ears fitted for new hearing aid molds that will be waiting for us when we get back!

I think that’s all for now. If you didn’t get an invite for her surgery send off party and are interested please let me know. If you would like to mail a card for me to add to her box of well wishes (hoping to get one card for each day) let me know also and I’ll send you our address. And if you’d like to send her some goodies to keep her busy during recovery, I think there are still a few things on her Amazon list ❤️

Medical Monday - May 22

So this week's medical Monday post is coming to you on a Tuesday...because it's the last week of school and we're busy. But we got it done! We have also switched our countdown from weeks to days before we leave 😬

For today's post, I thought we would switch things up and let you hear from Lexi about this summer so enjoy this interview and let us know if there are any other questions you might have! Maybe she'll write some of the update posts over the summer to keep those writing skills sharp before 4th grade.