At Miriam’s follow-up visit with Dr. Cheung-Phillips a week ago, we were given lots of good news. Dr. CP performed another video scope of her throat and everything looked better. (Miriam was so cooperative that she stuck out her tongue so the doctor could hold it out of the way.) The irregularity along her vocal cords has nearly disappeared. The signs of reflux were reduced, but there was still some residual redness. Her doctor recommended keeping her on Pepcid for another six months and then trying to wean her off. She also recommended that for Miriam’s future surgeries we try to get her doctors to use an LMA in place of a conventional breathing tube. This set-up does not require anything to go past the vocal cords in the throat and should greatly reduce the risk of re-injury. We were told at her last procedure that they can only use the LMA if she does not need to be on her stomach for surgery. Since this upcoming expansion should be routine and require minimum incision, we are hoping they can perform it on her side instead. We meet with Dr. Williams in the beginning of December to schedule that next procedure, which should take place either in late December or January. So far it seems that she won’t need anything else before then. All three of the girls have been happy and healthy, and we are praying that continues through the holidays.
Archive for Doctors
Hope for Miriam’s Throat
Six weeks after Miriam’s expansion surgery, we started hearing some irregularities in her voice indicating that the polyp in her throat might be re-growing once again. She has already had the growth removed four times surgically, and her ENT has had no advice on how to keep it from returning except to put her on a steroid inhaler. While this seemed to slow the growth of the polyp, he did not expect it to grow at all and was surprised to keep seeing us. Something more is clearly going on. We decided to get a second opinion, as Miriam cannot continue to have surgery every six weeks. This week we consulted with a new ENT, a throat specialist named Dr. Cheung-Phillips at Capital Otolaryngology. Dr. CP was very friendly and patient, listened attentively to the background of Miriam’s story, and asked many appropriate questions. She performed a videostrobolaryngoscopy, which used a stationary camera on a stick that sat on Miriam’s tongue to record a short video of the movement of her vocal cords. Miriam did not enjoy the procedure, but it was over in less than a minute and was certainly preferable to having a camera sent through her nose or being put under anesthesia again. And she got to go choose a prize from the prize tower while the doctor went over the video with us. There was some irregularity visible on one side of her vocal cords, probably in the same spot where she has had the polyp removed repeatedly. Additionally, Dr. CP saw clear signs of reflux (swollen & red throat surrounding the vocal cords), which can cause polyps, or in Miriam’s case perhaps cause one to return. Miriam has started taking Pepcid to see if it can reduce her stomach acid and give her throat a chance to heal. We will return to the doctor in two months to re-scope and check her progress. We are praying the polyp will resolve itself this time, or if it needs to be removed surgically, that removing the reflux will allow it to heal completely.
Dr Shapiro Drawing
A Tangential Complication
About a week after Miriam’s VEPTR surgery, we began to hear a sighing sound from her room while she was sleeping. As the weeks have passed, that sound has become more prominent, and her voice has also gotten increasingly raspy during the day. We took her to an ENT today to have her vocal cords checked. She had to have a numbing spray and then a flexible scope inserted in her nose, which she did not enjoy. The doctor saw she has developed a cyst on one side of her vocal cords, probably due to the irritation caused by the respirator tube from the surgery.
This means Miriam is headed for a minor surgery on Monday, March 11, to remove the cyst. The procedure does require general anaesthesia, but should only last 20 – 30 minutes. She should go home the same day. The doctor told us he was surprised to see a cyst, but that it was much easier to treat than some of the other possible complications he was anticipating based on her symptoms. He also said there should be minimal pain after the surgery. Please join us in praying that this procedure is easy and smooth and does indeed heal her so we can hear her sweet voice back to normal again!
Pre-Op Orthopedic Surgeon Visit
Busy day today! Before our hospital tour Miriam had an appointment with her orthopedic surgeon, Dr Williams of Central Texas Pediatric Orthopedics. So now we can introduce him as well:
We feel very prepared for this thanks to all of the education and support they have given us, and we left today with no real outstanding questions.
Miriam also had x-rays done to help prepare the surgeons and their teams. Her last set was about 6 months ago. She has grown, but nothing new or unexpected in this set of images. And she only cried a little bit when we got to the room and was very brave after that.
Here is a copy of the x-ray to give you an idea of what’s going on in there. Note that she is standing up more or less “straight” here. Her right lung is smaller than her left (this image is as though looking at her back, so left is on the left). The large white mass in the center is her heart, right where the “jumbled” portion of her spine is located. It jogs over to the left considerably there as well. You can see the fused ribs on the right side in the middle (it looks like it starts as two, fuses to one, and then comes out as three?) and gaps at the lower ribs.
But if you watched the videos on the procedure, you know she is nowhere near the worst case for this type of procedure.
Miriam had her 4 year old well check today (and Hildi had her 9 month appointment too). Both are very healthy, and Miriam is in good shape for her procedure.
Here is a photo of all three girls with their pediatrician, Dr Sheila Boes of Pediatric Associates of Austin. She has been taking care of Miso from almost the beginning.
The best news is that Miso’s BMI is 75-85%ile for her age, which is a good indicator of her eating habits and nutrition (one of the early concerns with thoracic insufficiency). Appetite is one of the first things to go when lung function is impaired, which also makes the procedure harder on the body. Eating well and being this healthy also means she will be able to recover from the surgery better.
After the appointments, Miriam and Cecilia got to have gelato and Central Market! Ice cream is a special reward for big girls who do a particular something good in a particular plumbing apparatus instead of clothing [wink] and both they both did that yesterday!