and yesterday I hit mine. Alyssa has been on clinical trial medication for going on 11 weeks. The original goal? To leave her on for 14 weeks and then do a 3 week taper off (they are corticosteroids for her throat so it is better to wean) and then begin running stomach emptying tests, trying meds, etc. The goal of this medication was to wipe out the eosinophils (white blood cells that show up when food allergy strikes in the esophagus) and hopefully make eating more enjoyable for her. A lot of times kids with the underlying condition of eosinophilic esophagitis simply don’t like to eat due to the fact that it is somewhat uncomfortable to swallow. Due to the fact that Alyssa had a quite extreme case we were all quite hopeful that it would be a helpful plan of action. However, my mommy gut tells me that there is something further underlying and that is why feeding is simply becoming more and more of a challenge. I am pretty confident that her stomach does not empty at the rate it should. It is a quite typical side effect in children with neurological problems as well as children on anti seizure medicine… Alyssa is both. So, we will run that test sooner than later and see what it reveals.
The breaking point? Feeding has been a challenge on and off from jump start. It was a struggle in the beginning. If someone had told me when she was three months old that with a g-tube in place she could still drink a bottle like normal… we would have probably been all over it. Instead, in my mind, a g-tube meant no form of “normal.” It meant that she’d simply be fed through the tube and never get to enjoy family meal time (I know it sounds silly, but I just couldn’t imagine her life without birthday cake or trying my favorite dishes). That just simply is NOT what a g-tube is about. At all. At any rate…back to the breaking. The saving grace of her feeding issues has always been that if I needed a break she’d let other people struggle and win as well. However, for the last few weeks, she just won’t give. My husband, bless his heart, is not one of those men that does not know when I am stressed. He is not a person who can sit in another room happily chugging along while he knows that I am on the verge of meltdown. He is a fixer and he wants to be able to make this OK. So, by the end of each day we wind up with Alyssa frazzled because she doesn’t want to eat, me frazzled because I don’t want to feed her or hear her scream for one more second, and Neil frazzled because she won’t eat for him and he can’t make her eat for me. The amount of strain that this is placing in our home… just is not OK. Yesterday, was the pits. I woke up already thinking “OK six more weeks and then we can get the testing started… I can do this” … until she fought each feeding tooth and nail. When she got up from a 3 hour nap I figured it would be a great time to give it a shot. I even made her chocolate flavored formula which she usually goes nuts over (by her standards) and instead she clawed, screamed and otherwise slapped me around. I finally got her pinned with her right arm behind my left side and her left arm in my left hand. She screamed for a good 10 minutes and then finally latched on to the bottle. She drank half of it. Yay. However, I knew there was no way to get the rest in her once I let go. So, I kept her pinned until she burped and then tried again. No.effing.way. She would NOT take the bottle and would NOT stop screaming. I put her down on the ground and let her scream while I laid on the couch and cried. I.was.done.
A few minutes later Neil came downstairs and oh so innocently asked if I was OK. HA. I lost it in a screaming crying over the topness and then promptly fell asleep on the couch from sheer emotional exhaustion. A few minutes later our landlord knocked on the door and I was awake. After he left I sat there and prayed for a minute. I was done. I knew I was done. I knew that Neil would understand I was done and most importantly I knew that being done would relieve so much strain between Alyssa and I. I just had to find the words. I just had to admit defeat. It is NOT an easy thing to do. This was the first time in Alyssa’s life that I had to say “I can’t” and even now it makes me emotional. It’s such a hard thing to explain. The admitting a form of defeat. The laying down and saying something has to give. This is a battle we have fought from the beginning and to feel like you are waving the white flag… well it just feels defeating. However, it had to happen.
I sent a message to her GI’s NP who we have been working with. I wanted to let her know I was trying but I could not guarantee we were making it to the end of the study. She requested I call her so we could talk. Now, I want to take the time to say that doctors in Nevada especially get a bad reputation of quality/standard of care. We have been SO fortunate in the people that care for our daughter. I am so grateful. Anyways, we have spent enough time with her that she knows my typical reactions to things. She knew I was stressed from the start. You know what I love? When I said I felt horrible, she assumed I meant about having to torture Alyssa by feeding her. I meant that we couldn’t finish the study. I meant because I felt like I was giving up. She, never saw it that way. She formed a quick plan of action and realigned our next few weeks. Alyssa’s GI is going out of town the week after next so she didn’t want to waste any time. It was amazing to me to talk to her. So often people that go through a certain level of education/life experience in the medical field grow into … not cold… but just indifferent? people. She… is the opposite. You can feel her compassion, her want to do what is best for our child, and her desire to provide Alyssa with the highest standard of care. We hung up the phone and she intended to talk to the doctor and see where he stood.
The decision? They want to place a g-tube when they go in to take after pictures of her esophagus next week. Yes, Wednesday or Friday of next week. I’m still in shock. I’m still in limbo. It’s such a cluster of emotion. Do I want to think that the tube is going to go in, she will thrive, and life will be like an awesome episode of a classic sitcom. Yes. However, there are a lot of variables. She will have healing time in which she cannot crawl, swim, etc. There is a chance that she will still spit up quite frequently (in which case they’ll bring her in for surgery and make it to where food can go down but not come back up). There are so many things to weigh pros and cons. I don’t WANT her to have to have this. However, the reality? I fear what will happen if she doesn’t. I fear how our relationship will be after a few more months of spending hours a day pinning her down to get her to eat.
I had about 100 questions flowing through my brain. So, the NP and I spoke again last night. It was after I had spoke to Neil, after we spoke to our roommate who has been there done that with her own daughter, after we had pretty much decided this needs to happen, and when I was still in emotional limbo. Did I mention this woman is amazing? We talked for a long time. I tried to explain why it was so very hard to admit this form of defeat. I felt like a failure. I am not a quitter. I finish things… well unless I procrastinate ;). She told me to take it with a grain of salt, but that it was OK to get emotional. It was OK to feel. That I didn’t have to be detached or separated from the situation. Yeah…she doesn’t know me at all. LOL. When it comes to medical stuff… from jump start I have gone cold. It is easier to pin your child to a table for a blood draw if you can shut off the emotion that typically comes with it. It’s my coping mechanism and most of the time it serves me well. However, she’s right in this instance. I have to feel this. I have to realize that this isn’t a cut and dry situation. She made the best comparison about how you need both food and air to survive and if Alyssa was not breathing properly I wouldn’t flinch to facilitate her breathing. It’s true.
After getting off the phone with her and talking to Neil I went downstairs. I know I am still not fully updated and the whole ‘roommate’ thing is missing some info, but I will tell you that she is definitely someone that anyone would be blessed to know. Raina is one of those people who can read you when you don’t even want to be read. She somehow finds the words you need to hear and delivers them in a way that you actually hear them. Her now SIX!! (Happy Birthday Madi!) year old daughter has had a g-tube since she was a little older than Alyssa. It’s inexplicable the feeling of knowing that when you tell someone something that would sound bizarre to much of the world, it is simply going to get a big ol’ nod. It is a weird feeling… but a good weird.
This is just the hardest thing for me so far. It sounds ridiculous to even type that. Alyssa has conquered so much. This may very well not be the hardest for her but it is for me. It means admitting there is a part of sustaining her life that I need some serious help with. It means admitting that I have tried everything I can and it just isn’t enough. It means a drastic life change from here on out (hopefully for the better). Overall, it means admitting a form of defeat. However, it HAS to happen. Something has to give.
I know that some of you probably have more questions than even I have LOL. You can post them in the comments and I’ll try to answer. I will put together a post over the next little bit with info. I know it’s a lot to take in. It is going to change things. I’m cautiously optimistic that it will change them for the better. The main blessing is that it is not a permanent thing and hopefully with removing the stress from the food situation Alyssa will learn to love eating and it can come out sooner than later. If you could just hold her in your thoughts this week we’d really appreciate it 🙂 Thank you.