Author: jjph

Miriam will have another expansion tomorrow morning. This one may be routine, which would mean a short surgery and an outpatient stay. However, her long rod has started eroding the rib where it is attached near her shoulder. The attachment point has become more prominent under her skin, but the rod does not feel loose and she isn’t in pain. Her orthopedic surgeon could not tell based on the pre-op x-ray how much it has moved, so he will be investigating during surgery tomorrow. If the attachment seems loose or in danger of eroding through the bone before the next surgery, he will go ahead and exchange the rod for a larger one and re-seat the attachment point on a different rib. In that case, she will be admitted for observation and stay overnight. If the attachment still seems secure, he will only expand the existing rod, and we will plan to exchange and re-seat the rod next time since she has nearly outgrown it.

Miriam is missing the last day of second grade for surgery, but she is ready to move on to third grade. She brought home literal piles of work from school over the last few days, and we are always amazed by her creativity and her maturity in writing. We’ve had lots of big events in the family in recent months: Miriam and her cousin Kate both received their first communions, we traveled to New York to witness the ordination of her grandfather as a deacon in the Catholic Church, and we attended the baptism of her newest baby cousin. God has been good to bring many joys to our family, and we pray Miriam will bounce back from this procedure quickly so she can embrace all the new adventures of summer. Thank you as always for your prayers and support.

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…

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.

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.

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.

BEFORE:

[KGVID]http://harpandeagle.us/veptr/wp-content/uploads/2013/03/IMG_1593-Wi-Fi.m4v[/KGVID]

AFTER:

[KGVID]http://harpandeagle.us/veptr/wp-content/uploads/2013/03/IMG_1605-Wi-Fi.m4v[/KGVID]

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.

 

Miriam should be headed home this afternoon! She had a rough night with Daddy (Mommy went home to sleep for a few hours), but we think they have her pain meds worked out now so hopefully we can avoid another night like that. She is sleeping deeply now, and once she wakes up we have asked physical therapy to come and get her up and moving. With the chest tube in, moving was uncomfortable, so we’re hoping now that it’s out and she is rested that she will be ready to play! Once we see she is able to get around on her own we will be discharged and get out of here!

She’s awake! While we wait we open one more package and do some coloring. Thanks, Great-Grandpa Dave and Great-Grandma Sally!

Mr. Doug from physical therapy arrived and helped Miriam take her first walk around the hospital. She made it down the PICU hallway and all the way out to the courtyard by herself (with the help of her magic wand)!

Cecilia and Grandpa came to help Miriam get moving. Cecilia was so happy to be with Miriam (and see all the fun presents she got)!

As soon as we were dismissed, Miriam got into her new princess fairy regalia thanks to Grandma’s cousin Patti and Mommy’s friends Becca and Jason.

We stopped in the chapel for some grateful prayers of thanks, and then headed to the playroom, where the girls took care of dolls and did some imaginary shopping (and parents forgot to take pictures).

And now we’re home! Miriam has done well so far. She has climbed on and off her bed and the couch, and done some reading and coloring. She is in noticeable pain if her medication starts to wear off, but is quickly back to herself when she gets another dose. Hopefully she will wean off over the next week.

Thank you all again for walking this journey with us. We are so grateful for all of your prayers, as we know they have protected and strengthened her and us through the trials of this week. Please continue to pray for her recovery, and we will continue to update you. She is adjusting to a body with new proportions and healing some major incisions, so your support is still a gift. She will be having her first expansion of the VEPTR devices sometime this summer, but that should take only one or two days it the hospital (and will have a much easier recovery).