Settling In

It has been just over 2 weeks now since Lu got her tube installed and started on the Elecare amino acid diet. We've had a few hiccups and it's been a steep learning curve but for the most part, it's all becoming routine now. Mixing up the food, cleaning the equipment, administering the food, cleaning up the equipment, cleaning the stoma around the button, putting gauze on and taking it off. Because we feed her every four hours and each feed takes an hour we really have to plan in time for each feed and the cleaning around it into all of our activities each day.

So far we've been trying to have Lu lie down for the feeds because the wound has not yet healed and it seems painful for her when we mess with it. Lying down is the easiest way to get to it, get the food in and get it out again without the tube getting yanked on or caught up in anything. Hopefully we will eventually get to the point where she will know to be careful of the tube and the IV pole and can sit up at the table to feed, or have the pump going while she does therapy, or sits in her car seat in the car. But for now, we keep her quiet and still. Which means she has been watching lots and lots of movies.

She has actually watched so many movies now that she seems tired of watching movies; something I never thought I would see. We try other things too, flashcards, reading books, but movies usually seem to hold her attention the longest.

It has also now been over a week since we moved into our new apartment. We haven't really moved out of the ranch or anything. Stew still has to be out there most of the time. But after a year of driving the girls in and out and in and out of town, staying over at my mom's and renting a small office space for therapy (where the other tenants complained about the noise of kids doing therapy because they are trying to conduct business next door) we decided that it really was necessary for us to get our own place in town. The two hour round trip drive in the car to get to and from town each day was such wasted time in all of our lives, but especially for the girls. It was two hours of the day when they could space out into autism land and we want to give them as little of that kind of time as possible. Plus it is so much easier for them to receive services for speech, OT and ABA therapies without needing the therapists to drive all the way out to see us some of the time. Just paying for everyone's time to get out to see us was getting to be too much.

So here we are now, settling into our new place and our new routine. Unfortunately a few other new things have come up at the same time, like Lu losing her very familiar and well trained one-on-one classroom aide as of the end of February. I won't pretend I'm not alarmed by this. The thought of sending her into school with this new button in her belly while it is still sore and unhealed with a stranger to look after her is causing me a lot of distress. For the last two days I went with her and stayed with her at school because I just couldn't bear to leave her after all she's been through lately. I was worried it was too soon to send her back. We're scrambling to find someone new, get her trained and in place as soon as possible. I just wish there wasn't so much new stuff for Lu to take in all at once. Any one of these things- surgery, new button in her belly, tube feeding instead of food, moving into town, or a new aide on it's own would be enough to throw most autistic kids off their game, but all of it coming together in less than a month, whew. Luckily Lu often surprises me with her toughness and resilience. I'm sure we'll work it out and make it through some how.

Lu's super awesome BCBA Dr. G is coming back next week to train the new aide and some new ABA tutors for her. Thank goodness. I always feel like things are getting out of control with Lu's program just before Dr. G comes back, then she's here for a week, whips everything back into shape, and by the time she leaves I feel like I can handle things again. That sure happened on her last trip here when she started working with Myffy. I've been feeling much better about things with Myffy lately. And much more stressed about things with Lu again.

But one of the most amazing thing through all of this has been watching Lu respond to having nutrients in her body. So many crazy things are happening to her and around her and yet her moods have been for the most part great. She's been super sweet and cuddly. She's even hugged Myffy and held her hand on several occasions without being prompted to do so. And I can see her growing again. During the week in the hospital and the week before she had lost a lot of weight. I could feel her spine through her clothes and count her ribs when I dressed her each day. And while I can still feel the spine a little bit, the ribs have a bit of flesh on them and her belly goes slightly out instead of being concave. Her color is great. Her eyes are clear. I've actually managed to take several pictures of her looking right into the camera now which was something that almost never ever happened without spending hours trying and trying to get a picture. I can't wait to really get going on her therapy program again to see if being nourished helps her with that as well. I hope so. I really hope so.

Oh and one last thing, we've had a lot of snow lately! Both girls have been pretty excited by this. Lu particularly loves kicking it with her cute pink cowgirl boots. She will go way out of her way to reach a pile of snow and kick it. She also likes standing under the eaves as they drip ice cold snow melt onto her head. I've been trying to discourage that. And eating the snow. But here's what the snow looks like out the window of the new place. All nice and white and fluffy.

Now time to get some sleep before Lu's IFSP meeting with DDD tomorrow morning. And then we need to start thinking about her IEP meeting with the school board next week. Gotta love all the acronyms in autism land.

Lu and her G Tube

Whoever it was that invented the G Tube deserves a great big smackeroo on the lips from this grateful Mom.  I won’t lie, this past week was terrifying. And each day Lu’s surgery was delayed by her RSV I couldn’t help wondering if this was really one last chance for me to call it all off. Was it really the right thing? Did it really have to be so drastic? I wanted to help her, but here we were about to have someone install a semi-permanent hole in her body, right into her stomach. How much was that going to hurt? How long would it take her to heal? How well would it work? How hard would it be? But the more we talked to all of the wonderful Docs and staff at Phoenix Children’s Hospital, the more we were convinced that this was the right choice for Lu. Things were past the point of us hoping she would come around and start eating. The time for action had come. G Tube time.

Lu was admitted to the ER on Monday and tested positive for RSV. This put her up in the isolation ward (after waiting in the ER for about 10 hours to get a bed) where everyone had to wear masks and full gowns around her all the time (except for us of course because we were already contaminated) which I think freaked her out a little bit. What kid wouldn’t be freaked out by a bunch of masked and yellow gowned grown ups sticking them with needles and putting cuffs on them that suddenly inflated and put pressure on their legs and put little lit up bits of tape that glowed on their fingers and toes periodically? I probably would have been freaked out too.

She was really dehydrated and low on nourishment when we checked in so she submitted to most of the prelims with some protest, but calmed down and cuddled with me in between each round of testing, questioning, and vitals taking. 

I was amazed at the ease with which the staff got her first IV in. It took just a moment to get the needle in then on went the arm supporter and all kinds of tape. Because she tends to try to get IVs out they end up taping it up so much it looks like she has her arm in a cast.

Tuesday was spent in debate, everyone trying to decide whether or not to go forward with her procedures or get her in better shape and discharge her until she got over the RSV. It was a tough call. Her resistance was extra low from being sick, but I was also afraid of being sent home with no reliable way to feed her. In the end it was decided that she would have her upper GI Barium Scope at 10:30am on Wed and that the surgery would be scheduled at 2pm pending the results on the upper GI.

The upper GI was tough. She had to drink a barium drink so they could watch it move through her system and she did not want to drink it and lie still under the imaging machine. After seeing her early resistance the radiologist wanted to cancel it. He thought it was too traumatic for her and suggested rescheduling it, but the whole point of the procedure was to make sure that there were no obstructions prior to the G Tube placement, so I didn’t see the point in doing it later if they really were going to put the G Tube in that night. So we did it. Tallulah spit so much of the barium out in fighting that she and I looked like we’d had a barium bath. But eventually it passed through her system without showing a twisted bowel or other obstruction.

And so on to the G Tube placement. Don’t you just love those release forms they make you sign in the hospital before they take your child away from you? The forms that outline all of the many horrible things that might happen and what they might have to do in the worst case senario?  My throat constricted and I clutched Tallulah to me as they read it out loud hoping she wouldn’t look up and see that I was crying. She didn’t. I signed. We cuddled until the anesthesia injected into her IV tube took hold and then they lifted her and took her away from me.

The surgery took a lot longer than they said it would. They said 30 mins. An hour later I was still waiting. Then another half hour. Worrying something went wrong. Just when I realized I hadn’t eaten in many many hours and got up to go grab something from a vending machine, the surgeon came out to tell me everything was ok. Thank goodness.

She opened her eyes a few times that evening/night, but mostly slept off the anesthesia. When she moaned in pain, they gave her morphine. She didn’t react well to this, slept too deeply, too hard and had some oxygen saturation level problems, which kept her in the hospital one extra day. (There was actually a really scary moment when her skin went grey, her lips went blue, the alarm was sounded and 6 people rushed in to her aid.)  

But finally, on Friday, they taught us how to do her feeds and let us take her to the hotel with us in the evening. Because of the scare we wanted to keep her close to the hospital for one more night before heading back up to Flagstaff.

When we got to the hotel Myffy was so happy to have her sister back. Myffy hadn’t seen Lu since she was admitted. All week long Stew and I had been doing shifts since Myffy wasn’t allowed in the hospital (because of RSV season) and Lu of course wasn’t allowed out. Every morning when Myffy woke up she would look around and say ‘Tu? Tu?’. Little Sweetheart. We were all so happy to have Tallulah back. My Mom drove down to Phoenix to stay with Myffy Thursday evening so that Stew and I could have some time together in the hospital with Lu to learn how to operate the equipment and feed her ourselves. Thanks Mom! That was a great help.

Since getting Lu back to Flagstaff things have mostly gone well. We had a scary setback when she started throwing up the tube fed food for a couple of days.  3 out of 5 feeds coming back up was alarming. This was our absolutely last resort for feeding her. If she couldn’t be tube fed, what could we possibly do? But after talking to the staff at the hospital we made some adjustments: smaller portions fed at a slower rate; and then when Myffy threw up twice in the days following we realized it may have actually been a mild stomach bug. Since then she has been handling her feeds well and even eating a few things by mouth: a pediasure pop here, a few potato chips (only potato, oil and salt on the ingredient list) there, a few pieces of popcorn and some juice. We’re trying to encourage her to still take at least a few things by mouth so that she doesn’t completely dissociate eating from nourishment and feeling full. But the most amazing thing about all of this is being able to feed her, really feed her, for the first time in ages, possibly since weaning. 

And I do feel that there has been a difference already. She's always been a happy girl, even through all of this trauma and trouble, but since getting these feedings she has seemed even happier. More clear eyed. More interested in the world around her. And even though she is in pain from the surgery (healing every day) hopefully the pain of her EE is lessening with each day that passes. 

I wanted to take a moment to say thank you to everyone who has written to express concern, send love, and asked how they can help. We really appreciate every bit of it. Dealing with special needs can sometimes be so isolating that even just an email or voice message, even when we aren’t able to immediately respond, means so much. Thank you for reading. Thank you for caring. Thank you for the outpouring of love and support. We’re all doing so much better for the love being sent. And we return it all, even if we don't have time to say so.  Thank you!

Eating Issues and the Feeding Tube

Well, we didn't really expect this trip to Phoenix Children's Hospital to be a cake walk; taking a child to the hospital is never an easy thing, especially for surgery, but this trip has been particularly hard. And it came at the end of a particularly hard week.

I realize that I have a difficult time describing Lu's eating problems to family and friends. Eating is such a natural part of life for most of us, a life-sustaining and enjoyable part of life that I think it's hard for most people to even imagine what it is like for Lu. We've gotten a lot of well meaning advice to either let her not eat and then come to it when she's good and ready because, after all, no child will really starve themselves to death; or to strap her into a high chair and not let her leave the table until she eats because eventually she will eat, or to actually force the food into her mouth and make her eat, kind of like when you make your dog take pills. Like I said, I know all of this is well meaning, but none of it really works with Lu. And believe me, we've tried a lot of things- read books, watched videos, attended feeing workshops, tried to be strict, tried making food fun, painting with it, cutting it into funny shapes, arranging it differently on the plate, tried to let Lu pick things out and help cook. We have tried a lot. Lu's therapist Dr. G came up with what I think is a pretty good analogy to explain things: 

Imagine being a 2 year old in terms of comprehension and being told that in order to grow you have to press your finger against a piece of hot metal every day. Maybe not hot enough to instantly blister, but hot enough to leave a small red burn every time. At first you might do it because your parents ask you to and it makes them happy, but after awhile the pleasure of making them happy will wane and the pain will overtake the pleasure and you will refuse to burn your finger. So your parents might try to entice, reward, even bribe you to touch the hot metal. And this might work for awhile too, but again, eventually the pain will win out and you will refuse to do it. So then comes threats and punishment, which again may work for awhile, but we are all animals and the adversity of pain will win out over the threats and punishment eventually. Especially if the pain increases over time, as it has with Lu as her EE has progressed. And I have always wondered if Lu actually connects the feeling of hunger with food. I'm pretty sure at this point that she connects food with pain, and it's possible that even if she realizes food relieves hunger pains, but the pain of eating may be greater than the pain of hunger. So this is why I don't think that allowing her to starve herself until she is ready to eat will work. She has been starving herself into the 'Failure to Thrive' category for ages now. Let's face it, the reason hunger strikes work in political situations is because it is really really hard to force someone to eat when they are determined not to. And I'm also not crazy about restraining, coersing and threatening her into eating when pain is involved because of the fact that I want her to trust me and believe me when I do tell her that something will or won't hurt her, is or is not good for her. I also want her to tell me when someone or something hurts her and have her know that I will believe her and take her seriously and do everything I can to fix the situation. I do not take this trust lightly. If I restrain and hurt her myself, meal after meal, day after day, what am I teaching her? That brute force wins? That I can make her do what I want/think is best because I am bigger? Or that her feelings don't matter to me? I don't want to teach her any of those things.

So anyway, these are some of the reasons that once she started refusing all food, and then finally water by mouth, we decided to pursue the feeding tube option. Like I said in the last post, we did not arrive at this option lightly. It took a lot of talk, a lot of time and a lot of tears to get here.

The thing is that once we got her down here to the hospital in Phoenix, we had to wait in the ER for about 10 hours for a bed to open up upstairs. And in the meantime, she tested positive for RSV. RSV, or Bronchialitis is basically just a really bad cold with lots of mucus and a chesty cough to most adults, but to kids, and especially infants, it can be pretty serious. Myffy got RSV when she was 2 and a half months only and it very nearly killed her.  Right now there is an RSV outbreak at Phoenix Children's Hospital. Lu was put into the isolation ward and the G Tube procedure had to be postponed because they don't want to put her under full anesthesia with a respiratory infection. The GI doc and the surgeon are both supposed to see her tonight and make the call whether or not to still try to do the procedure tomorrow, the next day or to discharge her (assuming we can get enough food/fluids in her to sustain her) and reschedule the procedure for later. What a mess.

Here's the skinny

Lu is getting skinnier. Skinnier and skinnier. We spent the past week trying to slowly introduce the new amino acid liquid food options into her diet and Lu responded to this, much as she did to our attempts at a GFCF diet so many months ago; with a hunger strike. She is now refusing pretty much everything but a few pieces of popcorn, a little bacon and some, not all, chocolate things. Normally she drinks one to two pediasures a day to help make up for the gaping holes in her diet. After trying to mix neocate chocolate into the pediasure, she has been flatly refusing both the mixed and pure versions. It is truly alarming. We're trying everything we can think of. We've even jumped to what I thought would be the last resort: steroid treatment. We've been doing the steroid/splenda slurry since Thursday with no noticable change. Each time she managed to spit some part of it out. This morning she fought harder than before, spit some out and then got so upset that she threw the rest up. We don't know what else we can do. We're out of ideas. Out of dietary options.

Which brings us to the new last resort: the emergency installation of a G-tube into Tallulah's stomach. We are not considering this option lightly. Cutting open her smooth, sweet, perfect little belly, oh god, it makes me sick just to think of it. I really did throw up last night as I googled and looked at photos of children with G-tubes installed. But what else can we do? Her normal intake was already below the nutritionist's minimum even before trying the new formula, and this new reduction places her in danger. A G tube could save her. It could allow her to get enough nutrition for the first time in years. It could even allow her to thrive. It's hard to imagine the word 'thrive' being used to describe Tallulah without the usual accompaniment of 'failure to' preceding it. I don't think anything we've had to do with either kid so far has been as hard as this. But here we are. What can we do but hope and move forward. Maybe she'll just need the tube for 6 months. Or maybe a year. Or two. Maybe by then she will be able to understand enough to make the decision to eat the foods she needs to eat to treat her EE. Or she can learn to use the inhaler for the steroids. It's not forever. It can be removed. But for now, it can save her life. We're leaving for Phoenix tonight and will try to get her checked in to the Phoenix Children's Hospital for feeding, rehydration, and to discuss the tube further with her doctor. She might even be able to have the surgery tomorrow. Then we get trained on how to use the pump and feeding equipment and how to care for the hole in her tummy. And then I guess we go home and start this new stage of life. My greatest hope is that with proper nutrition she will finally start to feel healthy. And that could make such a difference for everything. Without the pain she's been living with all this time, perhaps she will be able to focus better, learn more faster, take more interest in life, in other children, in the world. This could really make such a change for the best. I have to cling to that thought as we go forward. Here we go baby girl.