Sophea’s Kyphoscoliosis Surgery and Follow-up

 It has taken me so long to post a follow up blog post, mostly because during Sophea’s surgery we kept everyone updated through a Facebook group and I didn’t want to repeat the information. However, it is probably best if I begin with that, it is important for other CMD (Congenital Muscular Dystrophy) and more specifically other Sepn1/RSMD (Rigid Spine Muscular Dystrophy) patients or parents to see what we went through. Feel free to skip the surgery updates (that I copied and pasted from Facebook) to the last paragraph to read about her 6 month follow up.

Sophea updating her crowd on social media. Her biggest surgery fear was needles.

April 9, 2018: Surgery Day: Sophea was taken back to the operating room, put under anesthesia, intubated, and her lungs weren’t expanding properly. (Like hardly at all!) So they didn’t start surgery yet, it’s temporarily postponed. They did a chest X-ray and saw mucus deposits in her lungs. They don’t know if it is an infection or if it’s just mucus plugs. Either way the goal is improving lung function. They are going to do percussion and albuterol treatments. They are keeping her sedated and intubated, until we know more. We should know more within 24-36 hours. They may do surgery on Wednesday or Friday- if they can clear the lungs, or we may end up going home to improve lung function and rescheduling in a couple months. Her kyphoscoliosis curve increased 15 degrees since December! (Now it’s at 98 degrees!) I’m hoping and praying they can clear the lungs in time for surgery to still take place this week. Then she’ll never know the difference- they’ll keep her sedated all through the wait. But if we have to wait a couple months- we will get through, just like she always does! 💪🏻 ❤️ safety is always number one!

The weekend before surgery. We were at CHOP in Philly for a sleep study; Sophea received her biPap only 2 days before surgery. We went straight from CHOP to Shriner’s.

April 9th Evening: They suctioned her lungs this morning and it was clear, which means there is no infection. Also they are now able to fully inflate her lungs (to her capacity). YAY! As of now, they are planning on next Monday for surgery, as long as her lung function does not get worse. She will remain intubated and on the ventilator through the night. Tomorrow, they will put her directly on her biPap. They will use a cough assist machine and albuterol treatments and suctioning throughout the next week. As long as her lungs stay the same or improve, the goal is to move forward with the surgery on Monday, April 16th.

April 10th: Today is a hard day. (I’m sure we will have even tougher days ahead.) Sophea is in and out. She is mildly sedated and they are giving her pain medicine around the clock. But she is able to have periods where she is awake enough to communicate. Except she can’t because there is a giant tube down her throat. So she motions with her restrained (restrained so she doesn’t pull out the intubation) hands for her phone. I bring it to her and she communicates by texting me questions, which I answer aloud. Just a few minutes ago, she told me she was scared and she started to cry. She asked me for a hug. I tried to hug her the best that I could and my sad momma heart spilled out of my eyes by way of tears. I tried to calm her enough to go back to sleep, because that is the easiest way. For me anyway, and I hope for her too.

April 10th medical updates: It is all good news! Her chest x-ray looks clear. She was able to have the settings lowered 2 times on the ventilator and oxygen, so she is currently on minimal support. They are still using the cough assist and suctioning her lungs. The new plan is SURGERY TOMORROW morning, since she is doing so well. In doing the surgery tomorrow versus waiting until Monday, the thought is she will not remember much of the in between time and she will not need to be intubated a second time; they will keep it in all day today and tomorrow. Dr. Samdani said he was glad that this happened before he began surgery instead of half way through. It gives him great insight into what to expect as far as her respiratory needs as well. He said now he knows he has to be on his best game for her surgery and work as quickly (and safely) as possible. If it means he shoots for 5-10% less correction off the initial plan but shaves an hour or an hour and a half off her surgery time- then that’s what he will do. Also she will be prescribed a cough assist machine for home to continue working on her lung expansion after surgery.

April 11th 6am: She just went to the Operating Room. Edit: I just want to add that, of course I was in tears, when they wheeled her into the OR. I was trying to hold back and not let them spill over, but emotion got the best of me and I couldn’t help it. One of the Shriner’s nurses turned back around, walked over to me and gave me a hug! How amazingly sweet is that!? I can’t say enough about how kind and caring the staff at Shriner’s is!

10am- First OR update: She is doing great under anesthesia. They took their time before beginning surgery to see how she would do with respiratory under anesthesia when she was rolled to her tummy. They are only now beginning the incision.

12 PM update…. Just received a call from the operating room. They are 1/2 way through the screw insertion process and about 25% finished the entire surgery. the amount of correction is still to be determined, it will be based on how well she is doing throughout the surgery and the final determination will be made as they get into the last steps of the surgery. It was a rough morning for her, she was way too aware of what was going on and in tears as they rolled her away from us at our stopping point…..the hour before surgery was not easy. We will continue to update as we hear more from the operating room.

2pm: not much for Mike and me to update. She is still doing great. They are finishing up with her spine, and will call us with a new update when they are ready to close. So far, so good! They aimed for a speedier procedure even if it meant a little less correction of her curve. We are curious to know what her kyphotic curve degree will be. No matter what, it will be better! And because it is fused, moving forward- it shouldn’t get worse, which means more space for her lungs to expand!

4:15pm update from the OR: They are in the final stages of closing up and then they will meet with us to discuss the surgery process, end result, and what to expect from here. Thank you all for checking in with Mike Thomas and me all day and for all the love, prayers and support you offered to us each step so far. We are very anxious to see her and will update again in a few hours, when we are able.

5pm. Surgery is complete and is a success so far. They did not measure yet but they believe they achieved a 47% correction during the surgery!! You can see the large sweeping curve from before on the left and the new straighter more graceful curve on the right. They are currently maintaining her pulmonary function and she could remain intubated for up to 2 days. They feel that they achieved good purchase points with all of the screws and took additional time to close things up to make sure everything is secure. She is now fused from T2-L3. Thank you for all of the support, prayers, texts, phone calls, well wishes, positive thoughts, assistance at home and work, and check ins….it is very much appreciated!!

Before (standing) After (laying on stomach)

6pm update from the ICU: I know, I know, so many updates in one day. We are with her in the ICU. She is pretty zonked right now which is a good thing. Her lungs look pretty junky- like they did on Monday, the day of the first surgery attempt. The intensivist said the best thing to do is leave the intubation in with the ventilator a couple more days, continue doing chest percussion, the cough assist, and suctioning through tonight and tomorrow night. If her lungs look better by Friday, they’ll extubate her and move her to biPap for Friday and Friday night. By Saturday she’ll be up and walking… if not sooner. She will continue using her biPap for sleep and rest periods. We will try to keep the updates to once or 2x a day from here on out. For now it sounds like she will definitely go home with a neck brace and most likely go home with a back brace for 6-8 months. The screws took to the bone pretty well, but with her hypotonia from the CMD, they feel more comfortable with bracing. She is going to be so angry 😡 about that!! My feisty girl! ❤️

04/12 Thursday Morning update: Her lungs are still very junky so she is still on the ventilator through intubation. They won’t be able to extubate at least until tomorrow or maybe even the next day. Her lungs look worse than yesterday. Both of her entire lungs are filled with mucus and fluid. I can’t see how she is moving air at all. 😞 The toughest part though is when she tries to communicate a comfortable position and it takes us so long to figure out what she is trying to say. She’ll break down in tears out of pure frustration. My heart breaks for her now and for all that is ahead. It is confirmed that she will have a neck brace for at least 6-8 weeks and a back brace for 6-8 months. The plan for tomorrow is to lessen the sedation to see if they can get her breathing on her own, because that is the body’s best way to clear the lungs. So today is tough, tomorrow will be tougher! And I have a feeling the previous statement will hold true for the following few days and weeks ahead. 💪🏻❤️💔❤️💪🏻 My girl is a champion! She is titanium!

04/13 Friday Morning Update: Her lungs still aren’t showing much improvement. They are continuing with the albuterol treatments, chest percussion machine, cough assist machine, and suctioning every 2 hours. She is still intubated with the ventilator. (I’m hoping and praying hard for extubation tomorrow – we just need her lungs to cooperate!) They are giving her a diuretic to try to get the fluids removed from her body quicker, hoping that this helps clear her lungs faster. Her body temperature was decreased 96*F today, so she is under a warming “blanket”. Her blood pressure was really high yesterday (174/105) so they are giving her a BP med to help. It is now at 129/79, which is still higher than her norm, but better than yesterday. They are decreasing her oxygen a little at a time, today her oxygen is at 30% and her O2 sats are holding at 95%. (Her normal was 96% before surgery.) They decided to insert a feeding tube through her nose, to get some calories in her, since she hasn’t eaten anything since Sunday. Calories, should help with the healing process of her muscles and incision a little more, since she isn’t up and walking yet. They are also decreasing the sedation today and we are hopeful this will allow her respiratory muscles to function a little better, the tricky part is keeping her from getting too agitated without as much sedation. Previously, when they tried to lessen the sedation, she was jerking around which was tugging at some of the tubes. We need to find the appropriate balance. 🙏🙏🙏 Daddy is getting very antsy and is about ready to just stand her up and get her walking and talking already. 🤣 He just wants his little girl to be back to her feisty self. 👊

The warming blanket.

04/14 Saturday update from the ICU: It sounds like her lungs are improving at a much slower rate than anticipated, but still improving a fraction each day. The dr said expect her to be intubated AT LEAST for a couple more days. The goal is to shoot for extubation on Monday. The intensivist thinks it should be able to happen on Monday, but he said it with a hesitant tone, so prayers for Monday please! I don’t know how much longer I can stand to see my girl like this. I know we don’t want to extubate if her lungs aren’t ready, so I’m not trying to rush the doctors- only healing in her lungs. After extubation we will be in the ICU for at least a couple days following, until she needs her biPap for night time only. Then we can expect to spend 5-7 days on the hospitals main unit working on getting her up and walking around. These texts from Sophea are breaking my heart. 💔

Also, you guys- I have to say through this entire journey so far, even through my tears, I have experienced a calmness that is almost unrecognizable. My ‘best friend’ anxiety hasn’t really showed up, only at minimal amounts when we had reached the 2 hour mark, when waiting for updates yesterday. I know that is because of all of you and the love, support, and prayers we have been covered in the last few days! (And also from the exceptional staff and surgical team at Shriners Hospitals for Children – Philadelphia) So thank you from the bottom of our hearts! Mike Thomas and I appreciate everything!

04/15 Update from Mike Thomas: Had to come home for a few days to take care of some work. Sophea is still in ICU and probably will remain there until at least Wednesday. They are hoping take her off of the ventilator on Monday as long as she can breath on her own with 100% certainty. I can’t thank you all enough for the amazing outpouring of support, phone calls, prayers, thoughts, positive energy, emails, offers for help at home and at work, cards, balloons, and everything else… it means so much to us…so thank you! If I missed a message or a text I apologize. We will get this little lady through this and she will be stronger because of it. We think that she could be in the hospital for an additional 7-10 days but we can only go as fast as her body will allow.

Mike is so not into this whole sitting around thing. Boredom got the best of him, and then he was trying to make every laugh.

04/16 Monday update: So the good news is today’s X-ray of her lungs looks the same as her X-ray she had done at our pre-surgery appointment way back in December. The Dr would like to continue to improve lung function before we extubate. They are doing four 1-hour sessions today where they will allow her to breathe on her own, keeping the vent on only to back up her breaths IF needed. Yesterday she did 2 of these 1-hour sessions. And she did so/so. Her breaths were less than half of what the vent was doing for her. Today is the same. They are continuing to check her arterial blood gases, and after these 1-hour stints, it is elevated- which is expected when she first begins since she hasn’t had to do any of the work for a whole week now. So the goal for the next few days is to work on those respiratory muscles. We have no idea how long it will take. He said, IF she can’t be extubated by Thursday, we will keep her intubated until Monday, because the 2 top intensivists work alternating weeks and a few different people fill in on the weekends. He doesn’t want her extubated on the weekend, in case of any complications. The intensivist on duty this week isn’t giving us a guesstimate day, only giving us different possible scenarios and assuring us we are making progress, one day at a time. Progress is progress no matter how slow, so we’ll take it.

However, the bad news is she is still intubated. Communication is incredibly hard and frustrating to her. She is still not up and moving, so the progress on healing her back and muscles is slowed. They are going to try to get her into a chair today, despite the intubation and a maybe a short walk around the bed tomorrow. Her pain and sedation meds have been decreased a lot! This is both good and bad news. Good because, it will not suppress her respiratory muscles any longer and she is more alert so I can read to her! I can show her cards people have sent or read her messages that people have sent her which cheers her up a little. She has even asked for me to play her music through her phone! However, it’s bad without as much sedation because she is in SO. Much. Pain! And she can’t move much or talk to communicate where and what is bothering her most. Overall, we are moving in a positive direction just slow and steady. Sophea is the toughest person I know. ❤️

Side note, unrelated to Sophea. My home kids miss me and I miss them. This is probably the longest we’ve been apart. They were able to visit Sophea (and me) this weekend but tears were flowing heavy at separation. I wish I could be in both places at once. And Mike Thomas wishes he could be in both places too.

Sophea’s Make-A-Wish trip to Disney World. 2 weeks prior to surgery.

Tuesday 04/17 Update: Despite reducing pain medications to the point there is no level of comfort left even when she is still, and the increased respiratory treatments (cough assist, albuterol, suction, and upgraded to vest PT), her left lung collapsed again. 😞 Her body just isn’t ready yet. We are sticking with 4 one hour sprints of breathing on her own today (with ventilator for back up) as opposed to increasing the quantity. They also removed the sump from her stomach, which is good, but now her stomach is bloated, uncomfortable, and feeling very, very queasy. They did give her a med to help with that and so far the nausea is better. The chief intensivist is calling Sophea’s primary pulmonologist to gather some more information (Previous blood gas numbers and sleep study numbers, that I don’t have on hand, and aren’t listed in her online chart yet.) to hopefully, come up with a game plan to continue moving forward.

Mobile x-ray machine

Tuesday (17th) update number 2: Wow! Today has been a crazy, intense roller coaster of a day, right Mike Thomas?! Around noon today, the chief intensivist came in to tell me that he spoke with the orthopedic surgeon who has been pushing to get Sophea up and moving as soon as possible. Because of that,the intensivist thought it was time to start talking about a tracheotomy. My heart instantly sank. I didn’t want to talk about that possibility, I wasn’t sure she needed it. I know SEPN1 is confusing. I knew that many SEPN1ers, need to transfer to biPap directly after extubation. What I didn’t know is what her stat and numbers needed to be to understand if she was ready or not. I didn’t want to risk the chance of reintubation. I asked if it was a possibility to try moving her to biPap before we moved forward with the trach and he said if her numbers are where they need to be by tomorrow, then yes. If not, then he felt it would be too risky and would have greater potential of reintubation. I definitely understood his stand point and agreed. But I was still terrified of having a trach placed, without even giving the biPap a chance. I reached out to one of my friends, who also has SEPN1 and has been a wealth of knowledge in helping me understand more about SEPN1 and biPaps, to get her opinion. She left work and came over to the hospital right away. I think she could tell how distraught I was. Within 5 minutes of her being here and speaking to the chief intensivist, sharing all the information she knew (from experience and from reference), the intensivist waltzed in here with a little bit of understanding of what CMD entails and immediately extubated her to biPap!

She was feeling so miserable, but gave me a thumbs up so no one would be worried about her. She wanted every one to know she was okay.

It all happened SO FAST! One minute, I was preparing for a probable tracheotomy tomorrow and the next she was extubated, on biPap and keeping her saturation even better than she was with the intubation! I am so thrilled the intensivist was able to absorb the information my friend was willing to offer and that he was willing to act on her advice! If you ask me, THAT is what makes an incredible doctor. Throughout the week intensivist did his best to gather information from any where he could. He called her primary pulmonologist, he talked to me about her medical history, he looked back at all the spine X-rays in her chart to get a clearer picture of her lungs and he asked me what I knew about SEPN1/CMD- which isn’t enough! I’ve learned so much since her diagnosis in Dec, but clearly, I still have a lot to learn. So, I am beyond grateful to my friend who is so willing to drop everything and offer her knowledge and assistance at the drop of a hat. Thank you from the bottom for my heart! ❤️ Now we will pray her through the pain and we pray that her lungs improve with movement and her body begins the intense healing process. Thank you all for the prayers!! 👆🏻

So here is a part of our JOurneY you haven’t heard: The morning that I learned the doctor was considering a tracheotomy for Sophea, I had to take a walk up to the Shriner’s apartment, change from my pajamas, and take a 5 minute breather. My mom had come to visit that day and she brought my mail from home. I opened it. Of course, I did. One was a letter from Sophea’s medicaid insurance, which she qualified for because of her disability. Apparently though, there was a change in the system and they needed income verification from us, which we didn’t provide in the 2 days time frame that they gave us. So, this letter was informing me that she was dropped from their system and we no longer had the health insurance that our girls so desperately needed. Hours away from home and there was nothing I could do. I did the best I could to put it out of my mind, and focus on Sophea. But the seed was planted and I was tired of being at the mercy of the system. I made a decision to jump out of my comfort zone, and leave my job of being a stay at home mommy. It was job that I adored and was fortunate to have for the last 15 years, but I knew it was time to begin hunting for a job outside of my home. Fortunately, Adylaede, my baby, was about to begin Kindergarten, so the timing was pretty good. In the end, I am so lucky to have found the perfect job for me, and even though I miss snuggling my babies on sick days or the ease of scheduling doctors appointments during day time hours, I adore my job, so much that I can barely call it “work”. Being a stay at home momma was much more taxing, although rewarding in its own right. And I’m super excited to get to spend my summer days off with my kids. It’s the best of both worlds!

First day of school and the first day of my new job.

04/18 Update from Mike: Thank you to everyone who has reached out, sent thoughts and prayers, helped, offered help, provided and coordinated meals, the texts calls emails and messages, and everyone that has followed her story. She had a pretty good night last night and they are hoping to have her out of the ICU on Friday and then she will be on the main floor for several days following ICU. Many people have asked what you could do for her. Here is her address at the hospital for the next 6 or 7 days if you would like to send her a card, a note, or something to brighten her day…. (*address removed*)

Just a small selection of the outpouring of love she received. ❤

Thursday (19th) update: Sophea is still in the PICU, but she is making progress! Her back looks amazing. She is taller- which was her biggest goal! We haven’t taken a height yet to see how much, but in my non expert opinion, I’m guessing it’s at least 2-3 inches! She has had her first walk today following surgery, it was a short one to the nurses station (which is right outside her room) and back to a chair near her bed, but she is sitting upright and will take a couple more small walks today. If they can wean her off the supplement oxygen, she will be on the main floor tomorrow. She has to do all of this with less pain meds than they would typically give because the meds are making her sleepy and possibly still suppressing her respiratory muscles. At the start of any activity (walking, sitting, rolling over, ect..), she says, “I can’t do it.” Maybe she doesn’t want to do it, maybe she really thinks she can’t- but nonetheless she tries and she succeeds! She is currently sitting up wearing her neck brace and waiting on her back brace to be completed. Both of which she hates. We are making strides!!!

Friday (20th) update: We’ve been in Philadelphia for 2 straight weeks- Wow! But more good news! Sophea graduated from the PICU this morning!! We are now in the main unit of the hospital. This girl of mine has such an indescribable determination. I am beyond proud of her ability to keep on fighting; Walking and breathing through her pain. I am taking lots of photos for her of all the hard stuff- just so when she’s on the other side, she can remember how far she’s come. Or even see how far she has come since the day before.

This is one of my favorite pictures because you can see how much pain she is in, yet she is the definition of perseverance.

One of our ICU nurses said to her this morning, “Sophea! I am so proud of you! You have no idea. You are the strongest and bravest patient I think I’ve ever taken care of! I’ve been in nursing in several different places for many, many years and YOU have impressed me the most. I can’t believe how much you’ve been through and how far you’ve come already with barely ANY complaining. You just do it, even when you don’t want to.” ❤️

Mike Thomas and I thank you all for supporting her through this journey with us, by offering prayers, thoughts, love, gifts, and both written and video messages! She is soaking up the encouragement, and using it to help her get through the hardest bouts of pain.

Sunday (22nd) update: Sophea is still just as full of sass and spunk as ever, none of that was removed during surgery. 😉 Her eyes roll just as fast as before, and her determination is just as strong as ever- unfortunately, she is determined to skip out on everything she needs to do to recover! But don’t worry! The nurses, physical therapists, and her parents are just as determined to help her as she is to resist. It’s a battle of wills, y’all- but one we’ve been having with her since the day she was born! 😉

She was having an allergic reaction to something, and broke out in a REALLY bad rash. They thought was maybe it was the pain meds she was on, (Giddeon is also allergic to the same one.) so we switched them out. The new one made her sleepy but didn’t help with the pain. So we quit that too- now she is on Tylenol and a muscle relaxer. Since she wasn’t used to the increase in her pain, she didn’t want to move. But we know the more she moves, the faster she will heal and feel better. So in that aspect it’s been hard to see the pain increase and still need to convince her to keep moving.

Monday (23rd) update: She has received so many cards! They have been very uplifting and encouraging – thank you guys for all the love!!! She is doing so much better today! (Still in a lot of pain; now she is getting muscle spasms- ouch!) She is on a mission to be out of here by Wednesday! In order to do that she must drink more, eat more, and walk more!! She is scheduling the PT herself and has them coming back several times today. She initiated her first walk this morning with momma and daddy!

Tuesday (24th) update: Sophea proved she is a force to be reckoned with!! (Most of us already knew this about her! ❤️) Sunday they had it in her chart that Thursday would be the goal for her discharge. If you saw my post yesterday, you know that Sophea was determined to work hard to get out of the hospital by Wednesday. Well, she did even better than that! She is on her way home now!!! Can you believe we’ve been in a hospital in Philly since the 6th of April?! Wow! The biggest challenge we had today was how we were going to fit all the stuff we’d accumulated into Mike’s car!!! On our way out, the security guard at the front desk held her hand and said a prayer over her for continued healing and safe travels home. Lots of the staff cheered for her on the way out too! Such a sweet place to be to go through all she did!

Bye Shriner’s! Some of her love mail packed in the wagon. (Not all of it fit!!)

April 27th Update from HOME: I thought it might be a good day to give an update on our girl. We’ve been home since Tuesday evening and she is doing amazing!! She is walking more, eating more, drinking more, just like she promised she’d continue from home. Her pain level is very manageable, and for the most part, she is able to feel comfortable sitting and walking now. She still gets muscle spasms and to me, it looks like that’s the most painful part. Although, she would be quick to disagree, arguing that her back brace is the worst part. (She likes the neck brace; it feel supportive.) Clearly, she has her goofy 🙃sense of humor back, if you look in the 3rd photo you can see- she found the perfect remote control holder or blueberry catcher (holder). 😂 She was very happy to pose for a picture with our Luna Belle, (although, Pyper and Chloe are missing from the photo op.) Luna has been very sweet and we can tell she is being extra careful around Sophea. ❤️ Sophea’s voice still hasn’t come back, from being intubated for so long, so communication is difficult. She met with a speech therapist for the second time before discharge and the therapist thought her voice should have been back already, but told us not to worry too much and to call back next Tuesday if we don’t see any improvement. She isn’t choking on her water as often, but still can only take her Tylenol with applesauce or a smoothie or she will choke with a gulp of a thinner drink, such as water. As long as she sips it though, it’s ok. All in all, I am so happy to see this amazing girl with her smile. I am beyond proud of her and so is her daddy.

May 1st update from Mike: I wanted to take a minute to thank everyone who has been so supportive of Sophea and of my family the last 3.5 weeks. So many comments, thoughts, prayers, cards, gifts, meals, text messages, emails and more. Colleagues from my Shrewsbury office, the Berkshire Hathaway Homeservices corporate office & management team, colleagues from other offices, my team, our church, other local churches, family, aunts, uncles, grandparents, friends, friends I haven’t seen in years, people we barely know, people she never met, people we never met, Daniella Slon for dropping everything leaving work to talk to the doctors, the tobacco pipe community, you have all been so supportive and we can’t thank you enough.We also want to thank the Doctors and nurses and the staff at Shriner’s of Philadelphia, you guys are truly the best at what you do and have helped my little girl so much. Her recovery will be a long process but because of the love and support and everyone reaching out you all have made it a much brighter and more bearable process and experience. She has been such a champion throughout the entire process and she is pushing through the pain and getting stronger every day. Sophea is doing multiple walks throughout the day, she comes down stairs and spends time with us during the day and walks up stairs at night. She is doing everything she can to get stronger every day. And my wife… Jylana, you are such a strong person and amazing mother. You not only find the time to give Sophea the attention she needs to stay comfortable and to to heal but you also find balance and still make time for our other 3 children to make sure their needs are attended to, I don’t know how you do it all. You are an inspiration to so many. Thank you again everyone for making my family feel special, you have all been such a blessing in our lives and we cant thank you enough.

We went for a walk on the large balcony of Shriner’s on one of her last days. It was such a beautiful day but this momma was exhausted!

05/11/2018: it’s been exactly one month since Sophea’s kyphoscoliosis surgery! She is making incredible progress, so we decided to get her out of the house for the first time since her surgery. And it couldn’t have been a better coincidence that Adylaede’s preschool graduation 🎓 was held this morning. Sophea did fantastic! She even wore a cropped top that showed off her pink brace. #scoliosisbrace Prior to surgery the cropped tops fit her short torso like a normal shirt; Looks like we need to go shopping for some new shirts! (*Just an added bonus to being taller… 😉) Her voice is coming back a little. It’s still very low and growl-y, and just a little above a whisper, but she is able to drink liquids better than she was 3 weeks ago. Her energy and physical activity levels are now better than before surgery! Woo hoo!!! Her pain is mainly in her lower back and shoulders. Her shoulders sometimes hurt excruciatingly even to the gentlest touch. With changing positions, (sit to stand, stand to sit, lying down, etc…) Sophea usually has the most pain.

This morning, after taking a walk around our neighborhood with her Nana, Sophea said “allergies are the worst thing ever!” And then we both laughed because in the last month she has gone through SO. MUCH. And still, she says “allergies are the worst!” 😂 In her defense, she does have severe allergies to tree pollen, it doesn’t matter how many allergy medicines she takes daily, her eyes are red, swollen, watery, itchy, her nose is runny, stuffy, itchy. She’s absolutely miserable every spring and most of fall too. Allergy shots are in her future!

Sophea had her “6 month” follow up (although, she is 8 months post surgery) today at Shriner’s Hospitals for Children, in Philadelphia. Dr. Samdani is very pleased with how well Sophea is doing. Her x-rays look phenomenal. We discussed how well she is doing with her energy levels post surgery, and also shared that we were a little concerned with how uncomfortable it is for her to remain in a seated position for longer than 30 min, and how it is difficult for her to stand still for longer than 10 min. She prefers walking and laying down to both sitting and standing. It is still suggested that she limits her bending, twisting, turning, lifting activities, for another 6 months, but at that point, Dr. Samdani recommends we begin private physical therapy, which will help increase her standing and sitting stamina. Also, because Sophea was intubated for so long and didn’t have any saliva washing away the germs, her teeth are crumbling. And on the teeth that aren’t crumbling, she has so many cavities. We have to be careful with dental work because of the surgery (a lot of blood is being pumped to her spine to promote healing, and so any dental work in the germ-y mouth could introduce bacteria into the bloodstream.) I should also let every know that her voice is back. It took close to 2 months for it to come back fully. Oddly, it sounds a little bit deeper than it did before.

Overall, the surgery itself was one of the hardest thing we have gone through, but it has helped to make such an incredible difference in her life. Sophea says, she NEVER wants to have any surgery ever again, but she is glad that she had the spinal fusion surgery and that it is OVER!

Her beautiful scar after healing.

2 thoughts on “Sophea’s Kyphoscoliosis Surgery and Follow-up

  1. You are beautiful and looking well! Soon you will be 1 Year post surgery! God bless you, Sweet Sophia! You are a CHAMP! Hugs Cathy Clark


  2. Wow! What a difference, her posture looks amazing compared to pre surgery! Sophea is one tough cookie! I can only imagine her pain for the spasms as I just had my second fusion, first was through the front of my neck C3 – C7. I just had it redone December 14 through my back C3 -T1 and the muscle spasms are terrible. I spend my days sitting or trying to walk which sets the spasms off. Good luck Sophea!


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