Peaceful Tuesday Evening

It has been a difficult couple of days. Mallorie had been getting a small amount of food through her g-tube, and the balance by IV, because she had developed a kidney infection, and one of the attendings felt that if she could handle even a little bit of feeding, it would help protect her from some of the side effects of receiving nutrition only through her IV - one of those being "transmigration of bacteria" from the intestines through her bloodstream to other areas of her body. It was a fine balance, trying to keep something going through her stomach and intestines, but watching out for reflux, which puts her at risk of breathing in the stomach contents.
Yesterday she had such severe and constant reflux, that it became clear that the risk of aspiration was too great, and the feeding was stopped, but the reflux and periodic struggles to breathe continued all day, through the night, and all this morning. She didn't sleep last night, but was wide awake and agitated, ran a high heartrate, and felt feverish, although thermometers never registered as hot as she "felt." I worried that she was building into seizures again. I was so worried that she would not be fever-free by the day her surgery was scheduled, and also that by not resting, her body could not fight the urinary infection. I absolutely am certain that she needs this operation to allow her body to protect her airway, and to allow her body to settle down, and get on with the work of healing her brain. The date that everyone thought her surgery was set for (today), turned out to not be correct (it will be this Friday), and if she could not stop refluxing, would the surgery be cancelled?

The infection itself was a huge blow to me, because ever since Mallorie was born with spina bifida, I've known that she was at a high risk for getting urinary infections, and you can ask Dr. B:  I'm pretty obsessive about it, making sure she gets a minimum of a liter of fluid a day, and vitamin C, because I believe that it helps protect her against UTI's. So when we got here, and she got her first urinary infection EVER, and on top of that, it was a big infection, and not caused by the first bacteria you'd expect to be the cause, I became more "obsessive" than ever. There probably was not a doctor who set foot in this room to ask how she was doing, who didn't hear that I was worried about her fluid intake, and felt she needed more IV fluids, both to flush out her kidneys and bladder, and to make up for what she was losing in the saliva that pours from her mouth when she is having seizures and at other times. The most frustrating thing is that sometimes I would hear about how they worried that she could get "too much" fluid, and one doctor even mentioned that they wanted to keep her a bit on the "dry" side. By the time she started the constant refluxing and breathing problems yesterday, I was to the point that if any conversations with doctors went on for any length of time at all, I was weepy and without words to express how afraid and frustrated I was.

So, let me tell you how much I love nurses. I love respiratory therapists, and nursing assistants, EEG techs, and doctors and all the sweet people who work here, too, but nurses are a breed of their own, because most of them take very seriously the work of caring for their patients AND the families, and most have learned that they can't be afraid to speak up and even disagree with doctors. They are the ones who spend the most time at the bedside, who have the most opportunities to listen to what the families say, and after awhile, a pediatric nurse who has cared for a variety of children in several types of situations can have an understanding of situations and a wealth of common sense interventions that a new resident could not have possibly learned just in medical school. Throughout our stays here since February 11, nurses have more than once stepped up and told a resident or group of residents what he or she thought should happen. I'm always in awe and grateful when they do that. Yesterday, the resident writing the orders to stop feedings decided not to increase Mallorie's IV rate to make up for the fluid she had been getting in her stomach, and I was so discouraged, because it had taken so much to get anyone to agree to increasing Mal's total fluids by an extra 10 or so cc/hour, and the resident was already saying that she didn't "think" she needed that much fluid, anyway, so she was looking through her past orders to see what the old rate had been. When I told the nurse how discouraging that was to hear, and how I believe that dehydration led to her getting this infection in the first place, she told me to go out and tell the resident how I felt. I just said it wouldn't matter; she wouldn't hear me, and of course I choked up saying that. The nurse left the room, and in less than 2 minutes, was back and increased the TPN rate another 10 cc. I have no idea what she might have said in 2 minutes or less that was enough to change the resident's opinion, but whatever it was, I was spared the struggle of trying to sound rational when my emotions were so much on edge already.

And today, after watching Mallorie struggle and even stop breathing for periods of time because of reflux, I was beside myself with worry. By about noon, it was clear that I couldn't put Mallorie in bed, because she would reflux instantly, but I also couldn't even prevent it by holding her. I was juggling an oxygen mask on a short tube coming from one side of her bed and her IV lines coming from the other side of the bed, with her in my arms, trying to suction and hold the mask in place at the same time, and not daring to lay her down because of how much worse she refluxed when I did. She simply could not keep her oxygen levels up without the oxygen mask, and I almost missed the chair once when trying to sit down with her to manage suctioning better, and realized I'd have pulled out her PICC IV line if I'd have landed on the floor. When her nurse came in because the monitors showed low oxygen levels, I asked for a syringe to empty her stomach through the feeding tube. She asked if I wanted to just let it drain into a disposable diaper. This is going to sound stupid to any nurse who's ever worked with me, but I never done that for Mallorie, unless she had some sort of illness and was actively vomiting. If I ever draw fluid out of her stomach to give relief, I always let it go back in eventually, because I remember being told that a habit of not returning stomach contents could throw off the electrolyte balance in the body. This is one of those not-seeing-the-forest-for-the-trees situations, because when Kerry asked me that question today, as she had already asked me yesterday, I realized this is one of those times when you DO want to just let the extra fluid go. Anything Mallorie was refluxing was partly going into her airway, and I was suctioning it out, and certainly not returning any of THAT to her tummy, so what was the harm in discarding stomach contents that were going to eventually be vomited or refluxed out, anyway? It was a turning point, because once Mallorie's stomach had been emptying for about 15 minutes, ALL of the refluxing stopped, her breathing calmed down, and she stopped being so restless. In time, her body began to feel less hot, and when I put her into bed, she did not resume the refluxing, and in fact, fell asleep! By the time she went back onto CPAP, she briefly needed oxygen along with the CPAP, but after an hour, she was able to just breathe regular air.

Tonight she is having a sleep study done to see if it can give any additional information about her apnea. In the past couple of days she's started to have really slowed breathing during deep sleep and some brief periods of apnea. But will this be picked up on the study, since tonight she's having a bit of reflux again? And even if it does, if it's central apnea, we already know it will be better managed through caffeine (as long as she can tolerate it without stimulating seizures). She had to have a medication through her g-tube at 9 pm, and so the tube was clamped, and already she has started making noises that suggest she is having reflux, and she is WIDE awake and restless, twitching. If she doesn't go deeply asleep, I suspect the apnea during deep sleep won't even be picked up. Also, one of the goals was to see what settings she would need for a CPAP machine if she needed it just during an illness at home. However, if she's not having the obstruction right now like was happening the other day when we needed to even put in an oral airway, will this study show enough information to help us know what she might need at home?

All I know is that Cathy told me that the study done on Annabel a few months ago showed events that were not at all visible to Cathy who was right in the room when they were happening, so we might learn a few new things. At any rate, the conversations with the girl doing the sleep study have been enjoyable; it is nice to get company, and a captive conversation participant is even better.

So Mallorie's surgery is scheduled for Friday, to be done by the same man who did her g-tube surgery 3 years ago while she was in the NICU. He is a humble man of God known for his surgery skill as well as for his character. Whenever his name is mentioned, nurses and doctors say that he is a great surgeon ... "and an incredible human being." I love to hear them say things like this about him, because I know she will be in good hands. Of course, if Dr. Olutoye heard that, he would say that he is just "an instrument of God," and that she is in God's hands. Which is true. This surgery is quite a bit bigger than just g-tube placement, and might also require that the g-tube be moved, depending on how things reposition when the fundoplication and tilting of the stomach is done. But judging by how well Mallorie responds to having reflux being taken out of the picture, she should do much, much better afterward.

John will be out to be with us tomorrow. I am SO looking forward to that.

As if I Needed Something Else to Obsess About

Mallorie was born with spina bifida, along with some other things, and while she was in the NICU, we got to meet a sweet specialist, Dr. O, who runs a spina bifida clinic at that big children's hospital. She told me how children who are in the clinic can see most of their specialists on a regular basis, in one long clinic day. Typically, in one visit day, the child might get a renal ultrasound done, or other ordered testing, and might see a urologist, neurosurgeon, orthopedist, PM&R (physical medicine and rehab) doctor, and Dr. O. And if they worry about you doing something unorthodox like feeding your baby solids through a g-tube, you might also get to see nutritionists regularly. :)

And they validate your very expensive parking ticket for the day, and most days feed you some lunch. Very classy, and very convenient, if you happen to need to see ALL those specialists! One trip, all done. And I loved this Dr. O, instantly, because she was, literally, the FIRST doctor there who spoke as if Mallorie was going to survive. She even talked about how Mallorie might, years in the future, get surgery for her club foot, so she might walk one day. I remember thinking to myself, WALK? Did she look at her legs with the knees that bent backwards? So I loved her right away, and she didn't give me some song and a dance about why we simply had to have genetic testing done on our child.

In the same NICU visit, Dr. O gave us a binder full of information about spina bifida and hydrocephalus, and I suddenly remembered that parents of kids with SB were always mentioning "latex precautions" when I'd ask them about their child's allergies. Taking precautions to prevent exposure to latex - esp. in the medical setting - because SB individuals are higher risk than the normal population for eventually developing a latex allergy. It had occurred to me to ask, because we had just purchased and brought with us to the NICU, tied in a cute pink ribbon, a cute set of "mimi's" (pacifiers), the brand we have used for all of our children, and wished to use for Mallorie. Her Valentine's Day present. They contained latex. She told us, yes, that limiting/preventing exposures to latex would be very important for Mallorie, and I remember her telling us specifics about how we should use silicone pacifiers and bottle nipples, which diaper brands were not supposed to contain latex, and some other things that I can't even remember.

Why am I mentioning this? Because I left John with Mal a couple of days ago, and went to work. When I returned, he showed me this (which looked MUCH more dramatic at the time):
A couple of blisters on Mal's heel and back of her ankle. Earlier that same morning, I had noticed a blister under the spot bandage covering where she'd had bloodwork drawn from the other heel, and now this. About an hour later, we realized that she'd had a sock all day on the 2nd heel.
The sock had non-slip tread (made of rubber) on the sole, and when we looked inside the sock, we could see where the rubber material had gone through to the inside of the sock. So all day her heel was exposed to this rubber material, and there had already been some thought that the first blister on the other foot was from using a latex glove to warm the heel prior to collecting blood.

So we probably have to assume she's developed a true latex ALLERGY. The scary thing about allergies, is that first time you show signs of allergy, it might not be terribly dramatic. The next and subsequent times you are exposed to the allergen, the reactions can become more and more severe, and the real fear is that there will be an anaphylactic reaction, which can be deadly.

Latex can be in so many products ... clothing, rubber bands, bandaids and wound dressings and tapes, balloons, teething toys, .... Certain foods can also cause allergic reactions in individuals who have latex allergy. Bananas, avocados, and mango are the ones I remembered - I guess tropical foods? This afternoon, as I am mixing up some rice cereal and Gerber bananas to help slow down the diarrhea, is when I'm remembering all of this, though. So I give it in her tube, and moan because I know she likes bananas.

OK, I'm lying. So far she's only ever made a face and shook her head back and forth when we've offered her tastes of banana. And the only time I've gotten around to giving her avocado was when I gave her some guacamole, which she promptly vomited back up. What I should actually say is that I like the "idea" of giving her bananas, and avocados ... Bananas are so easy to mash up, and avocado is the big magic calorie food everyone says we can stick in the tube for weight gain. And it makes me happy each time I stuff foods in that tube, because we received such strong recommendations and so many visits from nutritionists after mentioning she'd be getting "real foods" in her tube, and not commercial formulas. So the idea of giving her avocado to help with weight gain makes me grin.

Not that she needs weight gain. OK, Dr. B, you can stop reading right here. Lindsay, too, if you're gonna tell Lewis. Carley was driving me back from work to the hospital last night, and we were discussing the new meal volumes we are giving Mallorie (165 cc vs 150 cc), and whether or not she is actually tolerating that volume. ESPECIALLY when I just decide to ADD something extra, like cereal and fruit or baked yams, and don't lessen how much milk I give along with the food. And Carley turned to me and said, "You know, she isn't underweight. No matter what they said, she didn't need to get that weight back." That's what I was saying, all along! But somewhere, I got caught up in the frenzy when Lewis showed up at our door with his lie detector scales tucked under his arm, and I agreed we ought to be getting her back to 22 lbs. Even though she's short and fluffy, and now has her triple chins back. And her "birds."

I'm asking you. Does she look at risk for being underweight?



Of course, now, we can't go backward and let her drop back to that svelte (ha!) 20.5 lbs, because Dr. B and Lewis would know something was up. And I'd end up feeling guilty, again. But I, for one, am praying for a growth spurt ... a height spurt, if you will ... during which I hope we can forget to increase her intake and just let her settle into a nice, healthy weight that allows her to BREATHE!