Doctor News: The Good and the Bad

THE GOOD NEWS:
Hannah had a follow up with the ENT today and the good news is the infection in her neck is gone and the pocket of fluid is going away. We will return to the ENT again in 3 weeks, but if things continue this way, she should be fine. Pray that she will not get another infection in throat. We'd really like for her to be off of antibiotics for a good long time.

MORE GOOD NEWS:
Melody had her 9 month Spina Bifida Clinic yesterday. Her kidneys and bladder continue to look healthy and she continues to have no issues with her shunt. We got refills on the prescriptions she needs and plans to increase dosages at 1 year as she won't return to clinic until December.

THE NOT SO GOOD NEWS:
Yesterday we scheduled a babysitter so Kevin could come thinking this would be a monumental one. We had a whole list of questions for the orthopedic doctor as Melody has been in the Pavlik and now Rhino brace since Jan and we have yet to see the doctor personally. Last time we were there, he was not, but had given his notes to Melody's pediatrician. This gave us the information he wanted us to have, but did not allow for any questions to be answered. We soon found out he was not there, again, and more than that, he has taken another job and moved to another state!

We asked a bunch of questions of her spina bifida pediatrician and the rehabilitation specialist. They both said, you need to ask the doctor, we can't answer those questions. So, we left with the plan to schedule an appointment with the interim orthopedist. This was very disappointing as they can't run her physical therapy consult until he releases her for that. Also, they mentioned it looks like Melody will need AFO's (ankle and foot orthodics), but that is a decision the orthopedist will make.

Today Melody's awesome nurse/case worker called as she is trying to get Melody scheduled with the orthopedist. The first appointment is in OCTOBER!! They won't even schedule her appointment then as CCS (her insurance through the state) expires in Sept. We can't even get her on a waiting list to be called if there is a cancellation until they can actually schedule her an appointment in Oct., which they can't do until her CCS is extended. Needless to say, her caseworker is very frustrated.

She has submitted paperwork to get Melody's CCs extended, but that will take a few weeks. Then we can get her an appointment in Oct. and get on the waiting list for cancellations and hopefully get in earlier. I now have the doctors phone number and will call weekly to see if there is a cancellation and if they will try and fit her in. They're going to love me. :)

A new orthopedist for the spina bifida clinic arrives in September, so it is possible we will be able to see him before we could actully see the interim doctor. Melody's nurse/case worker is pursuing both options to try and get the earliest available.

From our perspective the brace is not resolving Melody's hip issues. Barring a miracle, she will probably need hip surgery, or she will live the rest of her life with her hip out of the socket. Of course, this has not been confirmed as we have not seen the doctor, but the little the ultrasound techs can tell us and from the reports, there has been no change in her hip. If Melody did not have spina bifida, she would likely be scheduled for hip surgery already. However, with spina bifida it is controversial as to whether the surgery will even help and we were told they take a more "patient" approach. If they don't think she'll walk anyway, they do nothing. God help the doctor that suggests that approach to me.

Doctor Visits

Tomorrow and Thursday we will be visiting the doctors. Wednesday Melody has Spina Bifida clinic. We will see the usual doctors (pediatrician, neurologist, urologist) as well as the Pediatric Orthopedic. As Melody is now 9 months old, they'll be doing a full assessment of her leg function and make physical therapy plans. We should also learn more about her hip and have lots of questions we hope to have answered as well.

Pray for this visit. I am anxious about it. I think I know Melody pretty well and her abilities as well as areas to work on. However, often the doctors reveal something new and it is sometimes hard to take. Kevin will be going with us to help process all we learn as well as ask questions.

Thursday is Hannah's follow up with the ENT. The redness is gone from her neck, so I know the infection is better. However, there is still a sizeable pocket of fluid where the cyst was. He had only discussed draining it if it grew, which it has not. She has 3 more days of antibiotics. So, we'll see what the doctor says then.

I'll try to post updates, but it may be a few days as life is busy until Friday.

Cyst Saga Continues

Yesterday Hannah saw her doctor for a post-op appointment. He confirmed what I knew that her neck is infected. We have begun a round of antibiotics once again and will return on the 17th to see how it looks then. Continual antibiotic use is what we were trying to avoid!

Pretty much right after Hannah surgery I noticed a bump on one side of her neck. I assumed it was part of the neck swelling and would go down. But, the rest of her swelling went down and that bump stayed. Then, over the last few days it began to get larger and a couple of days ago began to turn a dark bruise looking color. She has had no fever or pain, though.

From Monday night to Tuesday night the size almost doubled. The doctor is still hopeful that the cyst has not returned. He thinks that since I noticed something almost from the beginning that it could be a hematoma or pocket of fluid that is not a cyst. Hannah has had a cold this past week, so that is probably where the infection came from. It is possible that if a cell was left during surgery the cyst could grow back.

We are praying antibiotics will resolve the issue. That would be awesome. Other options are draining the fluid if it gets bigger or repeat surgery. We are hoping to avoid both of these.

Let the Sugar High Commence

Hannah was such a trooper for her surgery today. The nurses were all amazed at her calmness and she did great without eating all day. We arrived at the hospital about noon for her 3pm surgery. Of course, there was lots of waiting, but they wheeled her into surgery right on time. Kevin and I had to leave one they took her back, but she'd had a medication to calm her and she was pretty relaxed already. She doesn't remember anything after that until she woke up in recovery.

The dark spot on her neck is the cyst that was removed. In this picture it is the smallest it has been in months as 3 weeks of antibiotics helped it shrink. The cyst was larger under her skin than expected, but it was not infected, so that helped with it's removal. They took the cyst and the "tail" these types of cysts have with them. There is only a 5% chance it will return and it would return in the next 4-6 weeks if it is going to.

Here she is beginning to get prepped for surgery.

Gwen, Hannah's American Girl, went along for the day's excitement. Hannah chose a new American Girl activity book as her after surgery toy, so Gwen had to be there. Before I left the hospital Hannah said, "Gwen, it is time for you to start school."

Hannah is all changed into her hospital garb which she said has "clowns on it and makes me look like a clown."

Surgery was over in just about the hour and a quarter the doctor had predicted. When Kevin and I got up to recovery, we found an awake and very upset Hannah. She was in a lot of pain and was mad at the nurse. "SHE wouldn't let me drink the whole thing." She was very thirsty and didn't understand why she couldn't drink water more quickly. They got her pain managed very quickly and we spooned water into her mouth and calmed her down. The HS Musical 2 DVD probably did the best job of taking her mind off her woes.

At one point I almost fainted and had to sit down. That is not typical for me as I don't usually get squeamish. She has a large bandage on her neck and was irritated by the IV. By the time we left recovery and got up to her room (about 6pm) Hannah was doing much better. Ordering her dinner made her very happy. I stepped out to make a couple phone calls and returned to see Hannah eating her "appetizer."

Hannah's "appetizer, chocolate pudding.

After a day of eating Hannah's eyes lit up at the mention of a toasted cheese sandwich. It proved to be too harsh for her throat, still. But, by 9pm she had managed to also eat 3 orange sherberts and drink an orange soda and had the apple juice and chocolate milk waiting. So, as long as she doesn't give herself diabetes, she should be fine.

Hannah should be discharged in the morning. The cyst was draining quite a bit, so if it is still draining in the morning, it might be a bit later before she is released to come home. Kevin is spending the night with her as I need to be home to feed Melody.

We are especially grateful that Carla came to spend the day with the rest of our family. They had a wonderful time and Carla was a real trooper and took care of all Melody's needs. Rob joined her part of the time and I heard there was swimming and eating out as part of the day, so they were very spoiled. I didn't make it back home until about 8:15pm.

While I was telling Carla about Hannah's surgery, Elizabeth asked me not to talk about it and then went to sit down. She proceeded to pass out and then wonder why I was standing over her all worried when she came to. This is the second time she has passes out when medical things are going on. Guess none of our daughters will be nurses. :)

Surgery Update

Hannah's surgery will be at 3:oopm. She is the oldest patient tomorrow! So, pray for her as she goes the whole day without eating. She can have clear liquids until 10am. We need to arrive at the hospital at noon.

Hannah's Turn

Sisters! Hannah & Melody

Wednesday, May 19th, Hannah will be having surgery at Loma Linda University Children's Hospital to remove what is believed to be a thyroglossal cyst from her neck. If it is that type of cyst she will be there overnight. If it happens to be just a regular cyst or a lymph node, she should be able to be to come home that day.

This is the cyst we first discovered when it got infected about the time Melody was born. Over the past couple months it has continued to get infected. She has been on antibiotics for the last 3 weeks. It will likely continue to cause problems unless it is removed, so that is why we are having this surgery.

We are looking forward to spending the morning at Disneyland tomorrow before Hannah's surgery. I will be able to call between 1-3pm tomorrow and find out what time surgery will be. They schedule surgeries based on age, so we expect hers to one of the first of the day.

Carla is going to come to be with the other kids so both Kevin and I can be there for the surgery. It will be a crazy day for me as I go between the hospital and our house to care for Melody's needs. Kevin will be able to remain with Hannah and spend the night with her if necessary.

So far Hannah is doing great with her impending surgery. She has a box of popsicles waiting in the freezer and a couple of gifts to open when she wakes up. Doctor Rowe has answered all her questions and assured her she'll be asleep for most everything, even the IV.

Thanks for all your prayers. We know this is a simple surgery, but we also know that all surgeries carry risks. I'll try to update this after her surgery.