As I sit down to write this blog, a new feeling pours over me. This is the first time (at least the first time in a long time) that I feel vulnerable while writing. These are such intimate, personal details of our journey and the struggles that come along with it. Honestly, I've sat here for quite a while, contemplating whether or not I want to continue with this blog. I think it's good to share. It gives me an opportunity to educate others and advocate for my kids. On the other hand, it really opens a door and lets people into our lives. I guess, if nothing else, I ask that others respect this vulnerable place that we are in. Maybe it is out of fear of judgment and scrutiny, but this is a difficult blog. "Then why post it?" you may ask. Well, it all goes back to the good that has come from this blog. The awareness that I hope to bring to Eli's disease, the hope that another mother may come across it and realize that she is not alone and the feeling that I am sharing these details (most importantly) with the people who love our kids and truly care about what is going on with them. So, here it goes....
The past month has definitely been a challenge for all of us. Only seeing each other in passing, late nights, early mornings, new routines, new challenges.... The days seem to be longer than their 24 hours and just run together in a blur. Our weekly "Huddles" at OCH are a time to meet with the team: Psychology, Feeding, Speech, OT, PT and Nutrition, along with myself, all come together to discuss the previous week and develop a plan for the week to come. A few weeks ago, our discharge date was given: Tuesday, June 14. That would be our 30th day of in-patient services. At the Huddle two weeks ago, Eli was making great progress. His overnight feeds had decreased from 10 hours to six. He was almost solely off straight Gerber Stage 2 purees and at least on a mixture of Gerber and blended table food-versions of those foods. Some of them were straight blended foods! He was also up about 4 pounds. Then there was a shift....
Part of the process at OCH is the therapist (feeder) stepping out of the room and allowing the parent to begin feeding using the protocol. The first week of this for us went fairly well. There was minor protesting, but Eli ate his food for the most part. Then we continued to shift the mixture of his foods from a 50/50 mix to more of a 25/75 mix, adding more of the blended table food and less of the Gerber. This was a HUGE deal for Eli. Gerber is really all that he has ever eaten. It's safe for him. He knows it's safe for him. Anything else; well, there's just too much unknown and too much fear. With this, the minor protest turned into defiant refusal. Screaming, yelling, crying... the whole nine yards. There was one day that Eli was fidgeting with his feeding tube and I was terrified that he was going to rip it out. Luckily, that didn't happen. But it was obvious that this part of the process what taking a toll on Eli and his capacity to handle such a scary thing. I'm 32 years old... I've dealt with a lot in my life and as a parent, I've seen a lot of things and experienced a lot of difficult things related to my kids and it was difficult for me to sit and try to get him to eat when he was crying and begging me to not make him. He would bargain with us, "Can I just eat my fruit?" Or reassure us through tears, "I'll eat next time." Then came the threats of "I'm never going to eat again!" As overwhelming as Eli's emotions were, mine and Adam's were just as high; part frustration, part defeat; part anger; part... mixture of every other emotion in the book.
This past weekend was the toughest. There was one day that Eli refused 3 out of 4 meals. Like I said, my days are all blobbed together, but I think that actually happened two days in a row. Eli had been steadily gaining weight after practically no gain in the past 2 years. He was actually up to 49.4 pounds on Friday. By the time of weigh check on Monday morning, even after eating breakfast, he had dropped to 47, losing 2.4 pounds. With discharge one day away, we had what was supposed to be our last Huddle.
This evening, Eli said to me, "Mommy, are you so excited that we get to go home tomorrow?" And I had to sit down with my little boy, hold him close and tell him, "Not just yet..." I explained to him that because he had been refusing meals and losing weight, we are not getting to go home tomorrow. The plan now is to stay until Thursday. The psychologist apologized and said that we should have altered the protocol a week ago. So now, here we are, going for a final Hail Mary... we've altered the protocol and are trying a new approach in the hope that Eli will begin eating again and we can go home on a good note instead of filled with fear. They are working out a plan for us to monitor his calories on a daily basis and adjust his overnight tube feeds accordingly. Because of his weight loss over the past 2 days along with decreased fluid intake, they are bumping his tube feeds up from 6 hours to nine for the next few nights. I won't go into details of the other changes right now.... It's just too much for my mind to handle right now. But we're praying for good results. And as the Psychologist said, if we go home and it just doesn't work, he has his feeding tube; he doesn't have to eat. We've been trying to monitor his anxiety and keep tabs on it, but we just pushed too hard, too fast. I asked her, "How long do we go with him refusing to eat when we get home? We can't risk him losing more weight." She reassured us that we will go home with a plan to make sure that doesn't happen.
On one more note, I'm sure some people may read this and think, "Wow, what a brat." I won't lie, I've had days where I thought "Eli needs to quit being a brat and throwing a fit." And then I remember that this is one of the absolutely hardest things for him. I'm terrified of flying. Give me an all expense paid 10-day trip to Italy... Nope, Not gonna happen. I'm terrified of flying and I will NOT get on a plane. That's how Eli feels about food. He doesn't find it pleasurable. He doesn't get joy out of eating. Comfort food (which I have been indulging in quite a bit over this past month) simply does not exist for him. And honestly, Eli is a super smart kid. I realized it a few months ago. He knows that some foods are safe, and therefore, other foods are not safe. He knows that foods that are not safe for him can result in pain and bad things for him. And I'm sure he realizes that eating the wrong food (he's anaphylactic to dairy and egg) could do more damage than just cause him pain... That's a scary thought for anyone, much less a 7 year old boy. So, for me, instead of looking at it as my son is throwing a fit and being a brat because he doesn't want to do something, I'm trying to re-frame that in my own mind that we're asking him to do something that is extremely difficult for him and something that a lot of adults I know wouldn't be willing to do. And I just keep telling myself, "It may not always be easy, but (hopefully) it will be worth it."
I keep getting sweet text messages, cards and phone calls of love and encouragement. Tomorrow is a new day and that means we're one day closer to getting to come home and be a family again. And I can't wait for that day to come.
Monday, June 13, 2016
Thursday, June 2, 2016
It's been a LONG week
Well, we're almost at the end of the week and Eli's projected discharge date is June 14. He has been so brave and strong these past few weeks and has made so much progress. But it's been a LONG week.... But the good news first.
Eli has only been eating Stage 2 Gerber purees over the past several years. We've never been able to get him to eat table foods. The psychological side of it, the PTSD symptoms of remembering the pain that he had in the beginning associated with eating, has always played a factor in Eli being too afraid to eat anything but Gerber. Through his hard work and the dedication of the therapists and team here at OCH, Eli is TOTALLY off Gerber! All of his foods on his menu are now blended, real table foods! It is so exciting and I'm so proud of Eli and the progress he has made!
So now for the bad news.... Eli still really struggles with the fear aspect of eating. And I totally understand. Food has never really been pleasurable for him. And Eli is very smart; he understands that eating the wrong thing could result in a lot of pain or even be fatal to him. Because of that, he has hit a bit of a brick wall as far as his progress. Something as small as his food looking different, having a different colored speck in it, having a chunk that didn't get blended down, or his two separate foods touching each other can set off a total meltdown. Over the past week, he's refused at least one meal almost daily. And because of that, his weight has dropped. He was up a couple of pounds, but at his last weight check, he was down almost a pound. It may not seem like much, but for kids like Eli, every ounce counts.
And it's hard to not get frustrated with him. When he pulls his head into his jacket and refuses to eat, then lays his head on the table sending spoons and bowls of food pouring all over the place... I struggle with not getting onto him. Then he looks at me, with tears rolling down his face and all he wants is for me to hold him... I have to fight against every fiber of my being to not wrap him in my arms and tell him that it's all going to be okay. You see, OCH has a very strict Cognitive Behavioral protocol with feeding. Meals are filled with comments of "Good bites!", "Great swallowing!" and Awesome taking your drinks!", as well as comments of "Take your bites or the game goes away.", "Take your drinks and you can have your music back." and "Chew and swallow to your tummy and you can watch your show." Words and phrases are very restricted in order to keep from rewarding undesirable behaviors with positive reinforcement of attention. It seems harsh, but it really does work. But that doesn't mean it's easy for either of us.
My first time feeding Eli this week was met with a meltdown; total refusal of his food and tears... and sobs... and pleadings for comfort. I fought back tears through the entire meal. Then when we came back to the room and Eli quickly fell asleep, as he often does when he's overwhelmed, I had my own little meltdown of tears and sobs and wishes of comfort.
This process has not been easy, but we have seen our little victories. Eli is down from 10 hours of overnight tube feeds to only 6 hours. Gerber is out the window, something I thought we might never achieve. And each day, we are one step closer to coming home with Eli progressing in his eating. I fully expect more tears and struggles and meltdowns along the way. But we're making progress. ELI is making progress. I don't know many adults who could go through what he has and still have a smile on their face, but he does it every day. And at the end of the day, he's going to sleep with little successes under his belt.
Eli has only been eating Stage 2 Gerber purees over the past several years. We've never been able to get him to eat table foods. The psychological side of it, the PTSD symptoms of remembering the pain that he had in the beginning associated with eating, has always played a factor in Eli being too afraid to eat anything but Gerber. Through his hard work and the dedication of the therapists and team here at OCH, Eli is TOTALLY off Gerber! All of his foods on his menu are now blended, real table foods! It is so exciting and I'm so proud of Eli and the progress he has made!
So now for the bad news.... Eli still really struggles with the fear aspect of eating. And I totally understand. Food has never really been pleasurable for him. And Eli is very smart; he understands that eating the wrong thing could result in a lot of pain or even be fatal to him. Because of that, he has hit a bit of a brick wall as far as his progress. Something as small as his food looking different, having a different colored speck in it, having a chunk that didn't get blended down, or his two separate foods touching each other can set off a total meltdown. Over the past week, he's refused at least one meal almost daily. And because of that, his weight has dropped. He was up a couple of pounds, but at his last weight check, he was down almost a pound. It may not seem like much, but for kids like Eli, every ounce counts.
And it's hard to not get frustrated with him. When he pulls his head into his jacket and refuses to eat, then lays his head on the table sending spoons and bowls of food pouring all over the place... I struggle with not getting onto him. Then he looks at me, with tears rolling down his face and all he wants is for me to hold him... I have to fight against every fiber of my being to not wrap him in my arms and tell him that it's all going to be okay. You see, OCH has a very strict Cognitive Behavioral protocol with feeding. Meals are filled with comments of "Good bites!", "Great swallowing!" and Awesome taking your drinks!", as well as comments of "Take your bites or the game goes away.", "Take your drinks and you can have your music back." and "Chew and swallow to your tummy and you can watch your show." Words and phrases are very restricted in order to keep from rewarding undesirable behaviors with positive reinforcement of attention. It seems harsh, but it really does work. But that doesn't mean it's easy for either of us.
My first time feeding Eli this week was met with a meltdown; total refusal of his food and tears... and sobs... and pleadings for comfort. I fought back tears through the entire meal. Then when we came back to the room and Eli quickly fell asleep, as he often does when he's overwhelmed, I had my own little meltdown of tears and sobs and wishes of comfort.
This process has not been easy, but we have seen our little victories. Eli is down from 10 hours of overnight tube feeds to only 6 hours. Gerber is out the window, something I thought we might never achieve. And each day, we are one step closer to coming home with Eli progressing in his eating. I fully expect more tears and struggles and meltdowns along the way. But we're making progress. ELI is making progress. I don't know many adults who could go through what he has and still have a smile on their face, but he does it every day. And at the end of the day, he's going to sleep with little successes under his belt.
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