Always Darkest Before the Dawn

“If you’re going THROUGH Hell, Keep Going!” ~ Winston Churchhill

This week has been Hell.

Monday Jacob finally had the further allergy testing that I requested a month ago. He showed allergies to 16 more foods that we tested. He basically has no safe meat/nut/ protein source, no safe grains left, and most common fruits and veggies, no safe form of milk. This week he has lived on blueberries, sweet potato, carrots, pineapple, Enjoy Life Chocolate bars, a smidge of avocado, and water. He is constantly coming to me and telling me he is hungry! “I hungry Mama” As a mother, and a parent, it is my JOB to nourish him- and I CAN’T! Even the few things I do feed him I am sure if we tested him within the month he will also be allergic to these too!

I was on the phone calling our GI doctor’s office as we left the driveway of the allergists. I was in tears, leaving a message that “Jacob is reacting to everything! We have no safe foods left! This is desperate! We are in trouble here!! He NEEDS a G-tube!!” That was Monday.

Tuesday our GI doctor called. She wanted us to meet with the nutritionist before she would even agree to a GI tube. She also wanted us to do an NG tube for 3 months first. I was 100% against this!! Jacob and I have done our share of tubes and such- 5 months with nephrostomy tubes in his back, hooked to catheter bags, that I carried around behind my 1 1/2 year old. I had to perform catheterizations,  5-6 times a day, on my 1-year-old. Yes, I had to stick a tube into his wee baby penis, into his bladder to drain it. I can’t even begin to tell you the PTSD I have at the idea of sticking more tubes up some orifice. Jacob reacts to tape with his eczema and sensitive skin, so I’m also against the idea of taping a tube to his face. But I digress. So after speaking to her, I called the Nutritionists office. I had an appointment set up to meet with her on Thursday which had been made weeks ago, but in light of what was going on- I did not want to wait until then. I called her in tears, begging and pleading my case. She agreed to meet with me Wednesday morning at 7 AM.

Wednesday morning I got to her office, and I have to say we hit it off pretty well. She was very impressed with all have been doing; trying to accommodate and work with all of the crazy food restrictions we keep piling onto Jacob’s allergen list. She told me that in 20 years of doing this, she has never seen a case this severe. She also agreed that a GI tube was ABSOLUTELY the way to proceed. She also told me that yes, I should be contacting Boston or one of the big treatment centers. She was very supportive of everything I have been doing with Jacob’s care, the with this blog, everything. She wants to use me as a resource for some of the people she sees. She also said that the only reason Jacob hasn’t fallen off the growth charts yet is a testament to how good of a job I had been doing. These were words I needed to hear! When I got home I sent an email to CCHMC- Cincinnati Children’s Hospital asking for direction, help or advice. I was feeling desperate. I needed answers, direction, ACTION!

Thursday I still had not heard back from my GI doctor. I called up the nutritionist to ask if she had spoken to my GI doc Wednesday. She told me they had played phone tag but never spoke. By then I was feeling angry. Poor woman! I unleashed on her: My son can NOT EAT!! ANYTHING! WHY IS THIS NOT A PRIORITY TO ANYONE! He NEEDS treatment and it ISN’T happening and I don’t understand why!!! [OK- that’s the nice version- the original had a LOT of F-bombs throughout it!] She was very understanding and gracious- yes, I did call her back later to profusely apologize!  Then I hung up and sobbed. The full-on hyper-ventilating, panic-stricken, grief-ridden, broken-hearted crying jag. My son can’t eat. Everything I feed him is harming his body. He is HUNGRY! How long before the weight loss is visible? How long before we see the effects from all the deficiencies?

I needed to re-group. I found a phone number to the allergy nurse’s line at Boston Children’s Hospital. I spoke to her, and explained the situation. Jacob is already in their system because we have been there a few times for consults with his kidney issues, and later for his oncology issues and his cancer surgery was performed there. She set me up with an appointment to see Dr. John Lee; looking at his credentials, this guy is PERFECT for Jacob! He will be meeting with him in about 2 weeks.  Right after I did this, I got a call back from CCHMC! The woman I spoke to, Ms. Ahrens was great! Sadly their wait list to see new patients is 12 months! [Let’s not even get into logistics of traveling there from Maine!] She said Dr. Lee is great, and was very happy we were going to be meeting with him. She told me there is a National EoE registry that we can get signed up to for future clinical trials etc. She also told me that even with Jacob’s allergy list, and corn allergy; that there are a few candies he can eat!Things made with JUST corn syrup and artificial flavorings-  Sweet Tarts candies and Dum-Dum Lollipops; for both oral satiety and physical therapy, for G-tube kiddos with no safe foods. Did you know -on the first day you meet with their doctors, they do a bone density test on the patient? NONE of our doctors have ever even SUGGESTED one for either of my boys~in spite of all their food allergies!

About noon on Thursday I got a phone call from the Pediatric surgeon’s office to try to set up an appointment for Jacob to meet with him for a pre-op visit. She told me they only see patients on Tuesdays and Thursdays. I jumped in-“OK I can be there today!” She said “Umm, well, next week, let me see….. well…. OK, I GUESS we can do 2:30 today- Can you make that?” HELL YES!! I am glad we will be having the surgery done by the same doctor who did Jacob’s chemo-medi-port. We went over the procedure and he said he can probably do it early next week. His scheduling secretary asked me if Halloween was OK?~”Ahh, I was told early next week~” She worked a few minutes, waving a magic wand and “POOF” Monday at NOON!

I left there feeling better than I had all week! Finally! Progress! A light at the end of the tunnel! Friday morning I got an email from CCHMC about a study they are doing.

“The registry study (REGID) that you mentioned is currently not enrolling patients, but will hopefully start enrollment in January. However we do have another study titled (EGID) Clinical and Immunological Evaluation of Eosinophil Associated Gastrointestinal Disorders. The study can be done entirely through the mail and involves sending us genetic information in the form of saliva, and filling out a brief questionnaire on your family’s medical history. For children that are under the age of 5 we typically will use a sponge kit to make saliva collection easier. Through this and other studies here at the CCED, we’re trying to learn as much as we can about the genetics underlying eosinophilic disease.”

This week has been Hell. The reality that my child can not eat. The pain of having him tell me over and over that he is hungry. Trying to explain why he can’t eat or drink any of the things he keeps asking me for. The grief I feel about putting him through even more procedures, more doctors, more tubes. The grief that my son has been through so much already, and is nowhere near out of the woods. I feel like I have been in a constant struggle with God, a tug of war trying to keep him alive! I have shed tears every day this week for my son, for his struggles, for the unfairness of it all! I look at my stash of medical supplies from all of his past problems: the cathing supplies, the sharps container, the gloves, needles, tubes, sterile urine cups; the boxes of EoE medicine. Soon these will be joined by cases of formula, even more tubes, mixing containers, IV style poles to hang Jacob’s new “food” from.

As we stand on the threshold of a strange new reality, I contemplate a future where Jacob can not have birthday cakes, Christmas cookies, no “yummy” family dinners. Where every night I am hooking him up to receive nourishment 10 hours a night, through a tube. Trying to figure out how to modify his new favorites- footie pajamas, so I can hook him up. I think he will be sleeping in my bed for awhile. He tends to get up in the middle of the night to come downstairs and crawl into my bed. He can’t do that if he is hooked up. What happens if he is tossing and turning all night with the tube? Fears of him ripping it out or wrapping it around his neck. What about the occasional sleep overs at Gramma’s house, or getting a babysitter? I am sad, and angry, and jealous of every other family who hasn’t had to deal with as much as I have.

I know this is the RIGHT decision. I KNOW this is the right time. I KNOW I have done as much as I possibly can. When he is coughing and choking in spite of having been getting treated with medications for 5 weeks, when he is developing allergies to everything he is getting exposed to, when there is not enough food left to meet his nutritional needs, it is TIME! I shudder to think what would be happening to Jacob if I had not been aggressive this week seeking treatment for him. Would we simply have  shown up to his next doctor appointment in 3 weeks, to have them wonder why he has lost 15 pounds?

I look forward to seeing Jacob flourish once he starts receiving nutrition without suffering or harming his growing body! I never thought I would be facing all the challenges that have come, but I know that I will meet each and every obstacle head on and fight with determination and protective fierce love for my children.

A great site I have found helpful when considering or facing having to get a feeding tube is “Feeding Tube”  .  I also found this other organization called Tubie Friends . These folks make stuffed teddy bears with G-Tubes for kids to learn about and accept their new G-tubes. I did order one of these for Jacob. I think it will also be useful for helping explain to family members, other children and future classmates.

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16 Responses to Always Darkest Before the Dawn

  1. Homa September 28, 2012 at 8:24 pm #

    You really were being a Mama Bear this week like you had tweeted! My heart breaks for you, keep fighting. I wish I could say or do something but all I can do is say I’m rooting for you all to find a new normal and soon. (Hugs)

  2. SarahB September 28, 2012 at 8:46 pm #

    You are doing an amazing job taking care of Jacob through all this! I’m thankful his wait for a tube is short and hope he can start thriving soon.

    I’m so sorry to constantly be your bearer of bad food news, but I recently learned that Dum-Dums aren’t entirely artificially flavored as we’ve always been told. Regardless of the artificial flavor label, they do in fact use natural flavors in some and told me they do not clean the equipment between flavor runs. They did finally update the website with some info: They told me: “The following flavors contain Natural and Artificial flavors: Blueberry, Bubble Gum, Fruit Punch. Orange Flavor contains Orange Oil. ”

    I’ve made plain sugar lollipops for my son from the KFA recipe database. They are a bit of a pain, and I always burn myself, but a batch lasts a long while.

    • Multiple Food Allergy Help September 28, 2012 at 8:49 pm #

      Wow! Great information to have! Thank you!! I will be sure to give those flavors to Big Brother! 😉 Regards, Jenny

  3. Colette September 28, 2012 at 9:12 pm #

    I am so glad that you are making process with the feeding tube. I can feel your frustration and your concern. Hang in there.

  4. Jen at September 28, 2012 at 9:42 pm #

    My sweet friend, I am so proud of you for fighting for Jacob and getting him set for treatment so quickly. I am so sorry that you have to go through so much hell. I know you’re frustrated and angry and scared and sad and I wish I could say or do something to make it all better. Take care of you and continue to take care of your family and know that I’m thinking of you.

    • Multiple Food Allergy Help September 29, 2012 at 1:39 am #

      Thank you my dear!! Now you know why I love you humorists OH SO MUCH!! All those days when I need that good laugh to turn it around! Blessed to know you! Thank you for making me smile EVERY DAY! xoxo~ Jenny

  5. Audrina September 29, 2012 at 1:48 am #

    My heart goes out to you and Jacob. We have to deal with only a fraction of what you are dealing with (2 year old allergic to almost everything) and I feel your pain, particularly regarding being jealous of healthy families. Although I want to believe in the grace of God, I have to admit I have held my middle finger upwards while rocking my sick baby multiple times. And I have awoke some mornings thinking this can’t be happening and wanting to feed my daughter a normal meal thinking it is all in my head. I haven’t and won’t do that because reality is alway there to smack you in the face. You have tremendous strength and Jacob is so very lucky to have you. Thanks for being a role model to all of us.

  6. EosGirl September 29, 2012 at 1:56 am #

    I am in awe of all that you have been able to do for Jacob, from his early illness, to keeping him nourished, to fighting the fight you had to this week. There’s no power like Mom power. It will sustain you both on this long road ahead. Hoping that the dawn will not wait too long to break for him and all of you.

  7. Ewokmama September 29, 2012 at 2:04 am #

    You are amazing. You are doing everything you can to make your childrens’ lives the best they can be. You are doing a fantastic job. I know it’s hard. Keep on doing it – your boys need you on their side and are lucky to have you!!

    Hang in there!

  8. Jennifer B September 29, 2012 at 11:44 am #

    Wow! You are amazing and so strong! You are an amazing mom.

  9. Sonya September 29, 2012 at 12:45 pm #

    Big hugs to you. Can’t imagine how difficult things must be for you. You are such a strong lady, your kids are very blessed to have you as a mum. I really hope and pray things improve in a dramatic way from here on. Thanks for sharing x

  10. Jo-Ann September 29, 2012 at 5:26 pm #

    Just sending love and strength.

  11. Jerri Higgins October 1, 2012 at 6:04 pm #

    I had written a comment that got deleted somehow, but I mostly just want you to know that I wish for quick healing and an end to the hell you’ve been living. I can barely imagine what it’s like to live it, Jenny.

    It feels feeble to say I’m thinking of you all, praying, sending love and wishes for a miraculous outcome for Jacob, but it’s all I can do.

    Hang in there. xo Jerri

  12. Jerri Higgins October 3, 2012 at 3:14 am #

    And, maybe this is so low-priority on your life scale that it barely merits mention, but you’re a wonderful writer. You’re so present with what’s happening, and articulate about it, that you are an amazing resource for whomever reads your blog, and I hope you’ll write a book about your experiences.

    I linked to your blog on mine and a woman commented that she has children dealing with issues too, and she checked out your blog, but also wanted me to tell you that she wishes you well, and has empathy for Jacob, and you and your family, and that she’s praying for you all as well.

    Much love,

  13. Melissa Pearson February 12, 2013 at 2:58 pm #

    I just wanted to let you know that I feel for you and what you and your son are going through will all of this.

    • Multiple Food Allergy Help February 12, 2013 at 7:47 pm #

      Thank you so much! It’s been a few months since we were at this point- things are going a lot smoother these days! He is growing, healthy, and happy! We love his feeding tube! xo-Jenny

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