Bye, bye, pretty eyes. We'll miss you till you wake.
Day Before Surgery. Tired mommy. Shutter-happy 6 year old.
A sad day. So often we are so lucky to have nurses whose personalities work well with mine. Today not so much. First thing when I walked in, she told me I had to take all of Audrey's clothes home and go through them, and wash all of the ones which still had tags, because she was concerned that they might have some chemicals on them that would irritate Audrey's skin. Ok, I guess I can do that, though it didn't seem likely there would be more problems with new clothes than from detergent at home. The kind volunteers down in the playroom watched Gideon for a few minutes while we went up to give Audrey a Priesthood Blessing to help her for the next day, and immediately afterward we had a bedside meeting with the surgeon.
Who knew there was such a thing as sterile consecrated oil? :) I thought it was nifty.
The day before surgery was a Sunday, so we were fortunate to easily find another priesthood holder in the hospital who could assist Justin in giving Audrey a pre-surgery priesthood blessing.
Dr Downey again impressed us deeply with his concern and attention to the needs of our child and his respect toward our wishes for the surgery the next day. We told him that if it looked like more time waiting would help Audrey, we were willing to wait, and to please let us know after the measurement and before proceeding. He promised to do so. Because Justin had asked, he frankly shared with us some of the complications that could happen, including the chance that the invisible nerve to her voice box could be damaged or destroyed. Loving to sing as I do, I swallowed a wince at that. Dr. Downey also said, "How about that blood sugar?? Crazy huh." I said, "We know next to nothing about it. Please tell us anything you can, we're totally in the dark." He said, "Oh I know what to do, but I'm going to wait for the endocrinologist to tell me." Uh-Oh. We told him we were praying for him daily, and he thanked us warmly. Then, Justin stayed in for his visit alone with Audrey and I was with the kids in the playroom.
We reached the appointed time to meet in the hall with the wagon--I had scrubbed and rubbed the kids with tons of soap and Avagard, and we waited--and then Justin came out and said that the nurse wasn't comfortable bringing Audrey out in the wagon. I was so disappointed. I wanted so badly to get our whole family together, for just a few short minutes. I tried hard not to let it, but the thought weighed in the back of my mind that should the worst
happen over the next few days, Gideon would have never met his baby
sister, and yet this nurse seemed to have no idea how important this day was to our family. But she was probably right, it was too much of an infection risk with all that she was facing in the next couple of weeks. I struggled to let it go gracefully. Also, Justin said, he had kind of confronted Ann Camp about the blood sugar stuff, and it was... bad. There was a reason they had been evading my questions. We would need to talk about it when the kids weren't present. So, Justin traded off with me and sent me in for a last visit with the baby before we headed home.
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| The Happy Sumo |
Our nurse the day before surgery was very cute with Audrey.
She stressed me out on other fronts, but I was grateful that she was so sweet with the baby.
I walked in with Eden and we started saying an emotional good-bye to Audrey when the nurse interrupted me to say she was going to have to throw away the huge lunch box of breast milk I had just brought in because it wasn't frozen, and she couldn't believe no one had talked with me about their protocol, and so forth. According to her, freshly pumped breastmilk was the only fresh they wanted, as in, pumped immediately there at the hospital-- where I've been bringing in a day's worth of fresh milk for the past month or more, having been told it was best for her because of the antibodies it provides (which are killed in freezing process, making frozen milk not much if at all better than formula in my mind). It was too much. I said, "I need to go now, just do what you need to do," quickly kissed Audrey good-bye and left. I am honestly sure she was doing a good job taking care of my child. Justin bought everyone a treat at the cafeteria, but for me he bought a steak lunch. On the way home, Justin quietly told me what Ann had said, that hypoglycemia is extremely rare in infants, and that it can require a surgery on the pancreas to remove a portion-- which cures the insulin problem, but the pancreas never heals, and the entire organ over the course of many years eventually dies, leaving the person permanently dependent on insulin and enzymes. Further, a hospital in Philadelphia was the leading center for the issue and we might be looking at a transfer there. I couldn't speak for most of the way home. After I collected myself I called Ann myself, and she told me that Audrey's low blood sugar was concurrent with a high reading of insulin. She explained that on Tuesday night they had started Audrey on a med called Diazoxide, and that ever since then her sugar readings had been normal. She read to me off the medication that it was to treat hyperinsulinemia, carcinoma and so on. It didn't work in all types of hyperinsulinism, but it was working for Audrey. She very carefully chose her words, but finally managed to say that the symptoms they are seeing are sometimes caused by a pancreal tumor. Hoping maybe she was having a hypochondriac moment, I went online to read about it for about an hour and a half that night. I learned that there are five main types of hyperinsulinism. Two of those types do not respond to Diazoxide, while three do. Determining which of those three types she has, is done through genetic and other testing. I am still learning about it. But the thing that stuck out to me as I was reading was the mention of lesions on the pancreas-- a lesion is another word for tumor, or a group of cells that are mutated and functioning incorrectly-- and how they are frequently responsible for the creation of too much insulin in infants. These lesions are incredibly difficult to detect using ultrasound, but the Childrens Hospital of Philadelphia (known affectionately as CHOP by those who know) has the leading center for treatment of this condition in the nation, and they can successfully photograph lesions using a special test so new that it has not yet been approved by the FDA, but is permitted under the mantle of research. They are also perfecting techniques for killing only those tiny groups of cells on the pancreas (which they did not go into but I presume buys many more years of life for the pancreas). What cemented my fears was this: although the websites I viewed did not use the term, with a basic search I did not find a difference between that and what is called Pancreatic Cancer. Heaven please no. Who knew that Goliath had a big brother. We are processing this possibility and hoping to learn more very soon. Here are the sites I read:
http://www.drugs.com/cg/hypoglycemia-in-infancy.html
http://en.wikipedia.org/wiki/Congenital_hyperinsulinism
http://www.chop.edu/service/congenital-hyperinsulinism-center/home.html?id=47690
http://www.chop.edu/service/congenital-hyperinsulinism-center/frequently-asked-questions/diazoxide.html
There is just one mildly humorous part to all of this. One of the two side effects of the long term use of diazoxide (the other is fluid retention) is the condition better known as (Were-)Wolf Man Syndrome, or the growing of too much hair all over the body. Audrey may simply have to attend the day spa frequently, and I might have to come along.
The x-ray film above on the right was taken at 6 a.m. on 8/12. The black part of the x-ray image is the air in her lungs. Normally the majority of the chest x-ray would be black. When this was taken only part of one lung was inflating, none on the other side. What made the situation even more scary was that the remaining working piece of lung was already under stress because of being near the surgical site. We had already been told that that part could collapse at any time. We never expected to lose the other, healthy lung. The ventilator tube had been just slightly too small, and with her being under paralyzing medications for several days, lying still and unable to clear her airways, saliva had been pooling in the lungs, leading to the collapse.
We sent out an urgent plea for extra prayers on her behalf. Soon after, surgery gave permission to take her off the paralytic meds and to replace her ventilator tube with a larger one to reduce the amount of air and fluid leaking around it--it was considered a risky procedure because it required moving her head a fair amount which could cause the tight, barely successful stitches to tear through the fragile tissue of her esophagus. Lucky for us, the charge nurse on call that day --who was also a former anesthesiologist-- was very experienced in placing ventilator tubes and could do it without hyper-extending her neck (avoiding strain on the surgical site), and to our great relief Dr Downey's hard work on her esophagus held strong. Almost immediately after the new tube was placed, her oxygen saturation levels improved dramatically. By four in the afternoon her lung had re-inflated. By six thirty, we were watching her rub her fist on her ear and try to open her eyes for the first time since Monday, with normal color and a relaxed expression on her face. Also for the first time since Monday morning, the flurry of activity around her bed subsided and we had a few quiet minutes alone with her to place our cheek on her forehead and kiss her good night. We enjoyed a celebration dinner with some good friends from out of town, who generously treated us to that special meal.
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