“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 Awareness.org” . 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.