Jacob & Lili

Jacob & Lili

Friday, April 29, 2011

Cincinnati - Day 6





Our final day here in Cincy. I do believe this was the hardest day for me. Last night we took off Jacob's patches and were hopeful at what we saw. A number of the patches looked positive to our untrained eyes. We met with the allergist this morning. After looking at his back he said that what we saw as maybe being positive is really an ambiguous result. However, 3 years ago when Lili had the same testing and the same "positive" result to chicken and turkey, we removed them from her diet. All her symptoms cleared. Since we had good results in her case, the allergist agreed that pulling the foods that appear to be ambiguous from Jacob's diet along with the top 6 would be a direction we could go in. So here is the final list of what Jacob can no longer eat:

wheat
dairy
eggs
soy
nuts
seafood
peas
squash
chicken
turkey
ham
beef

In 3 months we come back and scope. If the disease goes into "remission" then we add one food back at a time.

The dietitian came in next. He was very helpful with suggestions on what we can substitute. He also said that depending on how much protein we are able to get into Jacob, we may have to supplement with elemental formula. I truly appreciated his advice and wished I had had this help when we first put Jacob on his elimination diet. But all the while I kept thinking about how am I going to feed this kid. No more hot dogs which was always our fall back. I do believe the first food we will trial is beef so he can have his beloved hot dogs back. Then I had the horrible thought of how is my mom's dahl, which she makes for Jacob, classified? Is it considered a pea? It's a lentil. Sensing that I was on the brink, the dietitian said he would fight to keep legumes in Jacob's diet. That would mean approval from the allergist. So off he went to discuss the matter and came back with a thumbs up. Oh thank you! Because besides hot dogs, our other fall back is mom's dahl. Phew.

I spent the rest of the day thinking about this whole situation and about how horrible this disease is. We went out to dinner and Jacob couldn't eat, his stomach was hurting.

This has been a long week for both kids and has taken it's toll. Jacob's behavior in the past few days has gone to almost intolerable. But he's in pain, tired, and just as frustrated as we are. At least that's what I keep reminding myself of. He often reminded us that this was the worst trip ever. Unfortunately, he's too young to really understand how all this poking is to his benefit in the end.

Tomorrow we go home and we are all excited for that. We will visit Cincinnati Children's Hospital in 12 weeks.

Thursday, April 28, 2011

cincinnati - Day 5

The day started early. I think the kids were still asleep when we got to the hospital bright and early at 7:30am. We ate a quick breakfast in the cafeteria and then headed up to C2 for our meeting with our new GI doctor.

Lili's MRI came back normal so we now are waiting for the results of her gastric emptying study that we did this afternoon.

Jacob, on the other hand, is a disaster. The disease is active. His eosinophil count is over 100. When he was diagnosed it was at 50. The decision was made to stop the steroid and put him on an elimination diet. In 12 weeks, we fly back for another scope. If it's clear then we will add one food back at a time, with a scope after each trial. The goal is add as many foods back into his diet as possible without aggravating the EoE.

We then met with the pain team here at Cincy. They said that EoE and abdominal pain run hand in hand. They want to try one of 2 pharmaceuticals to see if we can manage his pain. They are going to find a pain management doctor back home that we can work with that will also work with them.

Both Gary and I feel like we finally have a definitive plan. The doctors and staff here are incredible. It's been a long week for both Jacob and Lili but in the long run I think it was worth the time and expense. And I think they both realize it.

Tomorrow is our last day, Jacob will have his patch tests read and we will meet with the dietitian to discuss how to go about the elimination diet. It's been a long and emotional week but the decision to come here was a good one.

Wednesday, April 27, 2011

Cincinnati - Day 3 & 4

What an exhausting week and it's not over. Yesterday was a hard day for all of us. We started at 8:30am with Lili. She had an MRI enterography done. This test requires an IV and Lili was hysterical. So much so I thought she was going to have a psychotic break. But the nurses were incredible and we got through it. While Lili and I were in radiology Gary took Jacob up to allergy for his appointment. However, Jacob's appointment was pushed back so I got to him just in time to hold him down while they skin pricked him 75 times. All negative. So on went the patches. The patches come off Thursday and will be read on Friday. So far the patches are staying on so hopefully we might actually get some results. After the trauma of the day we left and had lunch at a local restaurant, The Rusty Bucket. Then we hit Target to buy the kids "rewards". Physically and emotionally exhausted, we went back to the hotel where we all just relaxed.

Today, thankfully, did not involve any testing. We were back at the hospital for an educational lecture on EoE with 2 other families. We learned about the disease, how it is diagnosed and how CCED manages this disease. I am so impressed with how the hospital works as a team to manage each case individually with the goal of helping these kids feel better. Finally a method to the madness. We then got to see parts of the research lab.

After the tour we decided to have some fun and took the kids to the Newport Aquarium in Kentucky. The kids loved it and it was nice to see them have a little fun. Tomorrow is another long day at the hospital but we will get results from Jacob's biopsies and we will start talking about how to manage his illness.

I'm so proud of both kids. They are stronger than I give them credit for sometimes.

Monday, April 25, 2011

Cincinnati - Day 2

We had a long day today. We were up early and at the hospital at 8am. Jacob has a DEXA scan first. It looks at bone density. Since he takes a steroid for the EoE and they don't know what the long term effect are yet, they are collecting data. He's within range but they think he may have an extra vertebrae. Then we met with his new doctor. We went over both Jacob and Lili's histories and talked about what is going on now. Based on Lili's symptoms, he has ordered a MRI enterography and he is repeating the delayed gastric emptying study.

Next stop was same day surgery for Jacob's endoscopy/colonoscopy. It looks like the furrows in his esophagus is back which means the disease is active again. We'll know more when the biopsies come back.

Both kids are tired but Jacob is glad to be eating again. Tomorrow is another early day beginning with Lili's MRI.


Sunday, April 24, 2011

Cincinnati - Day 1

Well, we made it. Our flight from Dallas to Cincinnati was cancelled due to weather. So we milled around the airport for 4 hours until the next flight. We got into Cincinnati at about 10pm and to our hotel at about 10:30pm. Now the hotel...I don't even know what to say about this situation. It's a converted apartment building which is nice because we have a kitchen and a family room. The kids share a room and Gary and I have our own room. However, decor, flooring, kitchen, carpet, bathroom, the whole thing needs a serious upgrade. I don't think the owners have realized that we are no longer living in the days of WKRP in Cincinnati. Oh and the gym, good grief.

We woke up late due to our still being on California time. We drove to the local Whole Foods, thankfully there was one nearby, and did some shopping. Jacob is on a clear liquid diet today in preparation for his endoscopy/colonoscopy tomorrow. We've had to give him magnesium something or other which produced not so pleasant results. Tonight he gets 3 enemas and a 4th tomorrow morning. His stomach hurts and he's hungry. So far I've bribed him with a new app on my phone, Pocket Fish. I'm sure there will be more to come.

Tomorrow we finally see the inside of Cincinnati Children's Hospital.

Wednesday, April 20, 2011

How are you?

How are you doing? I'm not sure how to answer that question anymore. What do people really want to hear, the polite obligatory answer or the truth? The polite answer is "I'm fine" said with a smile allowing the other person to continue on with their day without upset or worry. The truth, at any moment I feel like I'm going to loose hold of what sanity I have left. The truth, I never expected that being a mom would be easy. What with the influences of drugs, alcohol, sex, and who knows what else, kids are susceptible to the clutches of so many dangers. But I never thought I would have 2 kids with special needs and chronic health issues. The truth, most days I question everything we are doing. Is switching doctors the right choice. Is subjecting them to another medical procedure the right choice. Is flying across the country to see a whole new set of doctors the right choice. The truth, I don't know how much longer I can do this. I know I have to, I have no choice. The truth, I may say I'm fine but I'm not.

We leave for Cincinnati Children's Hospital on Saturday. Jacob has been somewhat stable. Since we can't figure out what the trigger foods are we've been letting him eat. But he's having tummy pain and leg pain. He's beside me right now in bed because his stomach is hurting. Lili's tummy is also causing her trouble. After spending 4 hours at Stanford's nuclear medicine department yesterday, we have learned that she has delayed gastric emptying and will start an antibiotic tomorrow to help get her stomach moving. The doctors in Cincinnati have agreed to see her so we will see what they suggest.

You see the commercials of children who are sick and have to fly to hospitals for special care. You watch and are heartbroken that such a young person has to endure so much. And you wonder at the strength that their parents must have to keep going. Never did I think I would become one of those parents with one of those kids. Both Lili and Jacob, they keep going because they are kids. They want to play and go to school and hang out with their friends. And if that means putting their pain aside so they can participate in their lives, they will. As for my strength. I'm learning that what appears to others as strength is really just a disguise. The disguise goes on when you have to take them to an appointment and you know they are going to be poked and prodded. The strength stays on when they are curled up beside you in pain and crying that it isn't fair. The strength lasts long enough while you explain to your own parents what is happening to their grandchildren and while you listen to them express their concern and you see the worry, almost panic, in their eyes. And in the still, when you're alone with your thoughts about the day and the future ahead, that disguise is gone. What is left is unrecognizable but all too familiar to my husband. An exhausted, shattered mess is what is left for him to piece back together. And as the hours of the night pass, a new disguise of strength is built up and put on and the next day begins.

I plan on blogging about our week long experience in Cincinnati so I will keep you all posted. We hope to find some help, answers and direction in the week we are there.

The Maupin's

The Maupin's