Our “New Normal”

I have been meaning to write an update for everyone for a few weeks now.  We have been adjusting to our new normal with of living with a feeding tube. Jacob got his feeding tube put in on Monday, October 1st. The surgery went well. We were in the hospital for the day. Thursday night before his surgery, a friend shared with me “TUBIE FRIENDS” -stuffed animals which are altered with feeding tubes for kids to help process and adjust to their new G-tubes.  I ordered one for Jacob, and was so pleased to find it waiting for us when we arrived home that evening! He has been sleeping with is, and often times will play, feeding it as he is sitting getting his own feeding done.

Jacob having ‘lunch’ while feeding his Tubie Friend

We are set up with a medical supply company that delivers everything we need for the feedings to our house: Pumps, IV pole,  formula bags, gauze, syringes, backpack that works with the pump, and cases of Elecare formula. The same company had a nurse who met with me at the hospital while Jacob was getting having his surgery to go over using the pump. It was a new model, called a “Joey” or “Kangaroo Joey”. It is very easy to use, similar to an ATM actually! I liked the pumps- save for one problem… They kept failing! The supply company was fabulous about getting new ones sent out to us quickly, but we continued to have the same issues. Not sure if it was ‘me’ or the device, but after 5 or 6 different pumps, in less than 2 weeks, they sent a nurse to the house with a different manufactured pump, and new supplies. We now have an “Infinity” pump, which has been working perfectly for us.

Last Friday we did have a little ‘accident’ when Jacob mistakenly pulled his shirt up and had the tube with it. The tube has a flange on it to help it heal properly, which rests against the insertion point. When Jacob pulled it, there was a good inch from the flange to his belly, and I could see a stitch and some blood. I called our visiting nurse, who asked if I could push it back in- [NO!-Eewww!] then said I will have to take him to the ER! Once there, they ran contrast into the tube, and took an X-ray, which showed that everything looked to be in place. Then the Dr. just pushed it back in, re-taped it, and sent us on our way! Once the initial tube gets switched out to a simple button, I am hoping to avoid any more of these type of accidents!

At the Hospital getting his tube ‘fixed’ after the little accident!

My son continues to AMAZES me! He has been so accepting of his new feeding tube, and our routine. He is growing, happy, and surprisingly has not even been asking for food-even when we go to the grocery store! I haven’t been baking and cooking much around him yet, and don’t know how he will react if I make something he used to love- like pancakes. I suspect and hope that he will simply be OK not having it, knowing our WORDS- even if he doesn’t fully grasp that concept.  “You can’t have this honey, you’re allergic. It will make you sick. I’m sorry.”

We did go to Boston last week and met with Dr. Lee. I am very glad we went. Jacob will be joining their EoE clinic, and I will be having Dr. Lee and his team manage the care plan for treating Jacobs EoE and allergies. We did another food allergy test while we were there. Adding a few new foods to the long list, including blueberries. Jacob did test OK to: carrot, sweet potato, cranberry, and pear.  (For now!)  So I can continue to feed him these foods as he requests, especially to help with oral therapy.  Dr.Lee is reviewing Jacob’s pathology slides and reports. We have stopped the Budesonide, while we ‘treat’ the EoE with just the elemental diet for now. Then we will re-scope in early November to see how his esophagus looks, and what the EoE count is like on the biopsy samples. Regardless of how his EoE is, it doesn’t change his multiple allergies, or the fact that he NEEDS the feeding tube for nutrition in order to survive.

I found a great blog post with sources to order G-tube pads and covers, on Jaxon and Brady’s Journey and through that I ended up ordering Jacob some G-tube pads and two belts to cover and protect his G-tube button from Belly Buttons. We had fun picking out what material we wanted, and Jacob is REALLY excited to get a Star Wars belt!

This isn’t what I ever thought our lives would look like. I had to laugh when talking to our insurance company case manager- “Remember back when after the nephrostomy/kidney issues-we thought we were done?” I know we are nowhere near DONE dealing with Jacob’s health issues, but am really excited at the idea of some calmer, easier days ahead for us all!

Stay tuned for my next update at the end of the month- Jacob has his 6 months post-chemotherapy scans, and Caleb has skin-testing to check his allergens! We are HOPING that he may have outgrown some! It will be a crazy happy day if we can add some new food back INTO the diet as opposed to removing some! 🙂

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8 Responses to Our “New Normal”

  1. Homa October 19, 2012 at 1:53 am #

    I am so glad Jacob is adjusting, I am sitting here amazed at how the internet allows us to connect and learn from each other – you mentioned several ways in your post that you were able to make things better for him because of something you’d read online. Now you’re continuing to give back by sharing your journey on your blog. Sending good thoughts and hugs your way!

  2. Grace - Allergyfun October 19, 2012 at 2:03 am #

    Wow, you are such an amazing mum. You sound so upbeat about everything – you have managed to find joy and hope in the midst of such a tough situation. Your resilience is not just something that will help you get through all of this but will undoubtedly rub off on your little ones and equip them to find joy and hope in their lives too, no matter where that leads. What a marvelous gift to impart 🙂

  3. Colette October 19, 2012 at 1:24 pm #

    I am so happy to hear that Jacob is doing so well — and you sound much better too!

  4. Tiffany Knighten October 19, 2012 at 4:03 pm #

    You are such an amazing mommy! I just read a lot of your blogs and can relate to you with your little guys both my children suffer from asthma and allergies. My son has a very limited diet, but I have no idea what we would do if he was unable to eat his staple foods that he loves. I hope now that he has his feeding tube life will get a little bit better and easier not having to worry that he’s getting enough food. Keep up the great work, you and your family will be in my prayers.

  5. Jennifer B October 20, 2012 at 6:21 pm #

    Good to hear how Jacob is doing. You have such a wonderful attitude and sound like you set such a great example for your children!

  6. Lily Brown (@EGIDgirl) October 21, 2012 at 2:47 pm #

    ur amazing! I’m speechless Jenny!!

  7. Lorian April 3, 2013 at 5:32 pm #

    I don’t know what to say…and that rarely happens with me, but you and your son’s story is unbelievable. I don’t know how you’ve managed all this time. My kids are teens and adults now, and I learned a long time ago, that most illnesses, surgeries, broken bones, ADHD medication trials etc, seem to be hardest on mom. The kids tend to take things in stride. Not much a good old fashioned cartoon, Lego, or Star Wars belt that can’t somehow,(don’t ask me how!) make things better. I wish we moms could be distracted so completely or even just temporarily, as the kiddos can. Well enough of that, I just wanted to tell you that even though I don’t know you personally, I am very proud of both of you, it takes a truly special person to handle such trials, and you are both most certainly that!

    • Multiple Food Allergy Help April 3, 2013 at 6:39 pm #

      Thank you so much for your kind words. I was talking to him today about an upcoming doctor appointment at Boston Children’s, and he did not remember any of our previous visits there. What a blessing that he will grow up with few or no memories of all the trials- the surgeries, doctors, chemo, tests that he has had since birth. My memories however, are etched in stone, and make me a post-traumatic, over-protective mama bear! Ironic how we can share the same path, the same steps- and have such different perspectives! Jenny

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