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.

Medical Monday - May 15

 I missed getting last week's post written because we were both wiped out with allergy / sinus / fun Central Texas spring air mess. This week, I wanted to give an overall medical update since the last post that had to do with medical stuff was from about 5 years ago...and some stuff has changed since then!

So, from the top down:

Lexi still struggles with some airway issues; most recently she's completed a few sleep studies that show she is having some pretty severe sleep apnea issues when she hits REM sleep. The first was in late 2021 and it showed that she was having about 39 episodes per hour. For reference, mild apnea is 5 episodes and moderate is 10. Everyone was in agreement with trying other options before going with a CPAP mask because at the time, she was still pretty sensitive to having things on her face after her stomach surgery earlier that summer. We started with a palette expander in the roof of her mouth which went in October of 2022 and came out in March of this year. Repeat sleep study results show that it did help, but not much. She still had about 27 apnea events per hour, her oxygen dipped as low as 83%, and she was retaining quite a bit of CO2. So we are going to move forward with the CPAP machine and will hopefully get that in time for her to adjust to using it before the surgeries. There is a minimal level of concern with how she will do coming out of a long period of anesthesia and hopefully this will help head that off. (That was as of her appointment today so hot off the press!)

Sleep Study pro!

Also in 2021, she was referred back to Audiology for some concerns after her hearing test at school. We went through this before in Pre-K because her ear canals curve straight upward, the school machines were not able to get a good reading. This time, the audiologists did notice a slight low-tone hearing loss in both ears. Had an MRI done to make sure everything was working the way that it should in her inner ears; those results lead them to believe that the bones in her inner ears are slowly stiffening up, like her other joints would if she weren't so active. Unfortunately, you can't really stretch out your inner ear bones so this is something that will likely continue to progress as she ages. So, December of 2022 we added hearing aids to our daily routine. While there is no concern about speech delays or her backtracking in development, the hearing loss does cross over into vocal ranges so it is more preventative to make sure she is hearing everything she needs to and to hold off as long as possible before we potentially have to take any other steps. She has adjusted well to the hearing aids and we will continue to monitor as she grows.

Fitting first set of hearing aids

Moving down: 2021 was a fun year...I didn't post the updates on this blog, but we spent 21 days in the hospital after her stomach rapidly expanded and cut off the blood supply causing all of the tissue to die. Why? We have no idea. Her surgeon said he has only seen this happen 5 times in his entire career and the only similarity was that all of the patients previously had a G-Tube. Some had been out for years, some for months so he's not even sure what the link is there. Anyway, since her gastrectomy, she has slowly worked her way from being on a 24-hour continuous feed to dropping that down to 12 hours so she is only connected at night! We've had a few late nights in the ER to get the tube put back in when it comes out, but otherwise she has adjusted as well as possible to her main source of nutrition being through the tube again. She can still eat by mouth but now that's reserved for all of the fun stuff that she wants to eat because it tastes good. She talked to her GI doctor at last Friday's appointment about repeating some allergy testing to see if she's outgrown her dairy and egg allergies, so her options might expand some after we get those results back! 

The only other thing to report on is that she is going strong with using her walker and braces to get her legs as strong as possible before surgery this summer! At school she rotates days between walking and using her chair and we have started working on her being able to carry her own backpack when walking to help move her toward more independence and not having an aide to assist with some of those tasks. It's crazy to think that we are already looking at skills for middle school, but I'm glad we are giving her plenty of time to adjust.

This year, we have gotten two big purchases approved: the first was a new power chair and the second a manual chair that she can maneuver by herself. Power chair upgrades are available every 5 years and we made the last one last for 6 so it was time. But that also means that we had to consider everything that she may need in a chair until she turns 13! The primary focus that we looked at was moving toward independence and her being able to perform age-appropriate tasks around the house so the big push was for an elevating seat so that she can reach counters, drawers, sinks, etc. The manual chair will allow her to roll herself around during quick trips to the store, between the car and buildings, etc. to save mama's back from carrying her and give Lexi a little independence instead of having to ride in the basket. We don't usually haul her power chair when we are just going around town so this will be a huge help!

Elevating seat makes her almost as tall as mom!

If you made it this far, thanks for hanging in there! We've had to make appointments with all of her specialists so they can sign off on her having surgery so I thought it would be a good time to get everyone caught up on what's been happening and what we are looking at moving into the summer.