Miriam went in today to scope and, if necessary, and excision of any cyst which had formed on her vocal folds. In the 18 hours prior to this morning her voice had begun to make extra noises again. And her breathing was much more noisy than the previous nights since the last excision, but it was not nearly to the level of the weekend before the last one.
We started 2 hours late, but Miriam was once again in very good spirits. She is really used to all of these routines, is very cooperative, and is very smart / aware of what is going on. She was very tired though.
Her anesthesia doctor geeked out over the VEPTR a bit. :)
Dr Nowlin was not sure what to expect going in. The initial cyst was unusual: this type of cyst is generally caused by irritation from long intubations, much longer than she has had. He did not expect any regrowth.
After the procedure, he reported that the cyst was returning but about 20% the size of the first time. He is extremely puzzled – he’s never seen a case like this and he’s been doing this a long time.
Miriam has a prescription for an oral steroid (basically flonase in an inhaler) to help control inflammation to hopefully reduce any potential irritation. Using the inhaler should prevent any issues with recovering from the VEPTR-related procedures and keep her immune system up.
We will take her back in if she has any of the same symptoms again. Otherwise, her ENT will be able to scope again during her VEPTR adjustments. This will avoid extra anesthesia and will allow them to have a reference point if something else comes up after the next procedure.
St Blase, pray for us.
Miriam is feeling pretty good and recovering well:
Before Miriam goes in for her throat scope and (excision maybe?), here’s a happy update. We posted pictures of Miso’s back before the installation procedure. Here are the same postures afterwards.
You can see the major improvements in her posture.
The bumps in her spine are gone (note the lack of the shadow to the left of her spine). There are a few new bumps from the device (under her right shoulder blade, and in the lumbar area in particular). Her abdomen is also noticeably longer, though this is hidden by the higher-waisted pull-up she is wearing in the after picture.
You can also see in the lowest part of the picture the more fresh wound/scar where they shortened/adjusted the rod after her skin breakdown. The actual opening where the skin breakdown occurred was to the right (a faint horizontal line). Hope that’s not too gruesome for the internet…
I (Mom) called Miriam’s ENT office on Wednesday because we have already begun hearing her vocalizations return occasionally while she is sleeping, and she has been complaining of her throat itching. The nurse replied with a voice mail that she had scheduled Miriam for another endoscopy in the Surgery Center for Monday morning. After a frustrating 48 hours of not being able to reach anyone in the doctor’s office, we found that the doctor had already intended for her to have another full scope under anesthesia after four weeks to get see if her cyst is re-growing, rather than just a follow-up office visit as we thought. Due to her symptoms they are moving it up to only two weeks.
Here is what we know: the cyst was (is?) a benign fibroma, not caused by cancer or a virus but purely by irritation. However, it is extremely unusual for this kind of cyst to grow so quickly or so large. The cyst removed by the doctor was very close to completely closing her airway, and we are very grateful it was caught and treated in time. The doctor is anxious to see if anything has returned because we do not want it to get so dangerous this time.
We do not know if this was caused by the intubation required for her skin repair which came so close to the cyst removal last week, or if it would have happened anyway. We also do not know yet if this is going to be a risk every time she is intubated for a surgery. This is scary since we are committed to Miriam having a surgery every six months for the next 12 or 13 years. We are eager to ask the doctor his opinion, but I have a feeling he may not know either until we are farther down the road.
She will be having the endoscopy at 9:30 Monday morning. I believe that if they see any sign of the cyst they will go ahead and remove it at that time. If the cyst has returned I don’t know what the follow-up will be – perhaps another endoscopy a few weeks later.
Please join us in prayer for protection over Miriam and true, complete healing of her throat. You might wish to join us in this Novena to St. Blaise, who is the patron saint of throat afflictions after he saved a child from choking on a fish bone. Here is an appropriate excerpt of a prayer if you can’t say the whole thing:
St. BLAISE, gracious benefactor of mankind and faithful servant of God, who for the love of our Savior did suffer so many tortures with patience and resignation; I invoke thy powerful intercession. Preserve Miriam from all evils of soul and body. Because of thy great merits God endowed thee with the special grace to help those that suffer from ills of the throat; relieve and preserve Miriam from them, so that she may always be able to fulfill her duties, and with the aid of God’s grace perform good works.
Miriam had a follow-up today with Dr Williams to remove the bandages and the staples from her lower back after last week’s unexpected surgery to re-close the extra wound caused by the rod pressing against her skin.
Everything looks very healthy, and Miriam has been complaining much less about her back hurting. She has to wait until next week to go back to her ballet class and two weeks before she can take a bath again, but other than that, she is good to go for a while.
Also, whereas she cried at her first x-rays, she was very concerned today she would leave the office without having one done. Luckily for her, they wanted to double check that everything was where it should be, and it was.
Miriam did really well through the night and woke cheerfully in the morning. All the cultures on her wound from yesterday came back negative so there is no sign of infection at this point. After some final checks the doctors released her and we headed home, but not without first rocking her dolls in the room’s rocking chair and visiting the playroom.
She spent the day happily playing and had a good appetite for all of her meals. She will be visiting Dr. Williams next Wednesday to check on the healing progress and have the staples removed. Please join us in praying it will be her last visit with them for a while!
Miso just drove her little car back into the surgery area. No separation anxiety and not worried by the environment or all the nurses. Anesthesiologist is actually the same doctor as on Monday, which is good since he is familiar with the issues around her breathing/vocal folds and can make sure to work around that.
Everything went really well with the procedure. They shortened the extra length on the rod to help protect this area in the future and stapled her up.
Also said her throat looked good, with no obvious evidence of Monday’s procedure. She’s not complaining of any soreness now.
We’re with her in recovery now, finishing off some apple juice.
Waiting for her procedure, Miriam drew a picture of Dr Shapiro and herself in the little waiting room.
Oh, and labeled it herself, sounding out the words.
For the second procedure in three days.
Miriam woke up with blood on her sheets this morning. The skin over the prominent lower end of the rod attached to her spine has broken down. It was probably a spot where a knot in the stitches dissolved and left a blister or abscess which was irritated by the rod. It is not directly on the scar from the original incision, which is actually good.
Her doctor is unfortunately out of town this week, but we took her in to see his partner who also does VEPTR procedures. He was relieved to see that it was not as severe as it could be / often is. We were able to get her in early since we live in town. It looks very clean and the skin around the new wound is thick and healthy.
At 5:30 she will go under and the doctor will clean up the wound and make sure it looks healthy inside. Then they will re-close the new wound. Because of the procedure on Monday and the infection risk, she will have a 23 hour monitoring period. that means we will be overnight in the hospital.
So now we are back in the PANDA at Dell Children’s. And this time she gets to ride in one of the cars she was so excited about after her first tour.
She is in very high spirits, and she is very excited about the white smoke and ringing bell videos.
St Francis, pray for us.
UPDATE: And then Miss Emily just happened to walk by and saw Miso, so now Miriam is jumping up and down very excited!
Miriam did really well with her procedure this morning. She was very brave and went back for the procedure with the nurses by herself, happily.
The cyst turned out to be much larger than when they scoped it a few weeks ago. It was not yet blocking her breathing, but probably would soon.
To give you an idea of the difference it made already, here is the girl herself.
She was able to swallow and talk right away in the step down room.
Later in the day she excitedly proclaimed: “My throat is its self again!”
Thank you everyone for your prayers. We really hope this will be the last issue before her next adjustment.
Please say a prayer for Miriam tonight or early tomorrow morning. She is having the surgery to remove the cyst from her vocal cords at 9:15 am. We can’t wait to hear her sweet voice back to normal!