Blogging has been on my mind but not getting done. I’ve been thinking a lot about what has been going on and quite frankly I don’t know how I’m sane.
Since October we’ve had:
6 scopes – three bad, one better, one worse and one a little better but not enough.
3 ER visits – 9 stitches, 102 fever with no walking with an added bonus kid fever while there and once for food impaction
we’ve moved twice
The boys are starting their third school this week. Charlie has been a Fighting Tiger, Purple Eagle and now a Blue Devil.
Gage has had bacon and had it taken away. he’s also trialed rice and now blueberries
Gage and Tinleigh have had skin prick alllergy testing twice and Charlie once.
Tinleigh was diagnosed with EoE
Tinleigh was already off of dairy but we also removed wheat, soy, chicken, beef, beans, potato, apple, fish, shellfish, eggs, tree nuts and peanuts and banana.
We removed Chicken from Charlie’s diet
We had Gage off of 26 foods. He was down to 36 pounds. chicken, turkey, beef, fish, shellfish, tree nuts, peanuts, dairy, wheat, celery, eggs, soy, rice, oats, pea, potato, sweet potato, apple, sesame, corn, mustard, deer, beans, hmmmmm what were those other two????
Gage got a feeding tube.
We celebrated feeding tube awareness week for the first time.
Gage now weighs 43 pounds.
Tinleigh turned one and has only gained two pounds since her one year check up, she’ll be 19 months this week.
We started Tinleigh on drinking Gage’s feeding tube formula mixed with her rice milk.
Gage’s feeding tube formula wasn’t covered by insurance. It cost $40 a can. He drank a can a day. It took two months before we had coverage.
Gage was allergic to our new house and we had to scrub the entire house down before we could complete our move.
It took us one whole week to do our most recent move due to cleaning. During that week half our belongings were in one house while we slept in the other house.
Gage’s feeding tube fell out.
In two months time Nathan used 5 epi pens on himself.
We’ve had asthma flares.
Charlie turned 7
Tinleigh learned to walk.
I’ve had to transfer all mailing addresses twice.
We celebrated Halloween, Christmas and Easter trying to avoid food.
Kids had to have physicals for new school.
I’ve had to find new doctors for everyone.
We had pet sea-monkeys. They died.
I’ve had to find Gage a pre-k twice.
We did Gage’s 3 month tube change at home.
Luckily I only had to pack the house for one of the moves but had to unpack both times.
We had snow
Is this the end of the list? No, I know there’s been “minor” issues here and there also but they don’t stand out in my head. Then there’s the everyday things like laundry, running a household, keeping your kids and husband happy, finding things to cook for your allergic family, making multiple dinners every night so everyone can eat and I have to sleep. So these are the reasons my blog has been lagging. Maybe once this house is unpacked, we just finished the move last weekend, I will be able to get back into a blogging routine. That’s my hope anyways. We have so much going on right now with EoE I want to share!
It started last saturday the 16th. We arrived at Nathan’s sisters house and Gage was shivering with a headache. Looked as pale as a ghost with dark circles around his eyes. He had woke up with a stuffy nose. In allergy world that’s common. We took his temp and he had a low grade fever. So Nathan took him to lay down and finish his feeding we had started in the car. About 10 minutest later Nathan was calling me, Gage had thrown up. He does get car sick so I was sort of thinking it was a combo of carsick and not feeling good in general.
Sunday 17th: Gage’s fever spiked up to 103.5. I gave him pedialite through his tube and by bedtime was giving him formula again. He didn’t vomit anymore.
Monday 18th: Gage woke up with a low grade fever. By noon he had broke out in a full sweat and was fine. I thought we were done. By 5pm he was back up to 102. Darn. He had even had normal feedings all day.
Tuesday 19th: Gage wasn’t walking. He woke up that morning and told us it hurt to walk. He was up on his tiptoes when we did try to make him walk. What in the world was going on? His fever was low. Then we remembered he had been complaining about pain behind his knees. We had wrote it off as growing pains. Some red flags went up that we didn’t want to say out loud. So I packed up Gage’s feed bag and snacks for Tinleigh and off to urgent care we went. Our pediatrician was in meetings until noon and we couldn’t be seen until 4. I wasn’t going to wait. The answer we got at urgent care was wait a day. If he’s still like this tomorrow take him to the hospital where they can do x-rays and blood work.Home we went. Gage’s fever had gone away the rest of the day and we were happy about that but he literally sat on the couch all day. Charlie even tried to get him to play. He would not walk, it hurt. Things were great until bedtime, his fever went back up. Oh, wait, it had dipped down to 96.4 at one point during the day. Strange. I had fed him normal feedings all day and he never vomited.
Wednesday 20th: I was so anxious for morning to come in hopes he would bounce out of bed fine. Yeah, that didn’t happen. He was still on tip toes. Still had a low grade fever. I called our pediatrician, he was now on vacation for the next 10 days. So I packed Gage’s feed bag and tons of food for Tinleigh then headed to the pediatric ER. We arrived at 11:15am. I was pushing Tinleigh in her stroller with my big purse/diaper bag, a duffle bag full of Tinleigh and Gage food and 43lb Gage on my hip. We must have looked so funny that instead of offering help everyone just watched us walk by. Luckily we were checked right in. Gage was nervous and told everyone no needles. I very well knew there would be needles. The doctor evaluates Gage then says he wants another doctor to look at him instead. In the meantime they came for blood. Gage knew exactly what was about to happen as soon as two nurses walked in with the little tray. His chin started quivering. I just semi laid next to him and we pressed foreheads. I kept apologizing over and over to him. They drew the blood and left an IV in in case he needed antibiotics. The IV was do traumatic for him he couldn’t stop complaining about it. I don’t know what it was this time, he’s had a dozen IV’s. This time, he was mad. A few minutes after it was in the second doctor came in to take a look at him. We had to bribe him down off the bed to show her how he was walking. The IV had him so distracted that he was walking better than he had been. The doctor was awesome. I told her this was the best I had seen him walk. Well, she was noticing things I wasn’t. There was definitely something wrong. I inquired about our length of stay and she advised I call daddy to pick up Charlie from school. Darn. A few hours later and the blood tests they had done for infection were negative. Then it was off to x-rays. He went in by himself like a big boy and did just perfect. The time waiting for the x-ray results were horrible. I was so scared we would see something. Luckily they came back just fine. Next step was more blood. However, they couldn’t draw it from the IV. They had to stick him again. I wasn’t happy and neither was Gage. Around the time of the x-ray I had put Tinleigh in her stroller. She was calm so I just kept pushing her back and forth to try and get her to nap. It worked, for about 10 minutes until someone woke her up. However, she sat there quietly and didn’t try to get out. So I kept pushing, she dozed back off.
Finally around 3:30 they came in and had results. Gage’s CK (Creatine kinase) level in his blood was up. This causes myositis. This can all be related to an autoimmune disease as well so I have some questions for his GI doctor, EoE is an autoimmune disease. He wasn’t dehydrated but his body needed extra fluids to flush things out so his muscles would feel better. This meant we would be there another 4 hours while they gave him fluids through his IV. Great.
I asked where the vending machines were because I was starving. They were nice enough to bring me a little food they keep for patients. Guess I basically got what they would have given Gage. Tinleigh had dozed off one more time, that was strange.
Finally around 4ish Gage was hooked up and Tinleigh had woke up. She had bright pink cheeks. Just then the nurse came in to take Gage’s vitals. I asked her if she was allowed to take Tinleigh’s temp. She got a sly look then quickly did it under her arm. 102. Shit. So I gave her some tylenol and called Nathan. We decided to just admit her to the ER as well. About 2 hours later Tinleigh had her own little band on her ankle which we had to hide under her pants because she was PISSED off they put it on her. I’m not going to go into details about everything that ticked her off for the rest of the ER visit because it was basically everything. I was concerned she could end up with high CK levels like Gage and I wanted her swabbed for the flu. What happened with Gage was common, but for it to happen to Tinleigh wasn’t likely. He likely had something viral and then the CK levels went up in result of the virus. They go hand in hand but not always together. So I didn’t need to worry about that with Tinleigh. They swabbed both Gage and Tinleigh for the flu. By 8pm Gage was done with his IV and released. He was walking normal and after another blood draw we learned his CK levels were coming down. Praise!! Shortly after Tinleighs flu results came back positive for flu B. They told me Gage’s was negative.
By 9:15 we were in the car headed home.
We beat my birthday Charlie stitches ER trip by an hour. We arrived home around 10:30 and Nathan said Charlie was on the couch pretending to be sick. So I went in with the thermometer just to give Charlie some special attention. Well, turned out Charlie wasn’t lying. He had a 101 fever. Darn.
Thursday 21st: Everyone slept in a little since we were up so late. Gage didn’t have a morning temp. Charlie’s was low grade and Tinleigh slept. So I hooked up Gage and got Charlie some toast. Tinleigh still slept. I got laundry going and dishes done. Tinleigh still slept. I called mom and she suggested I do go wake her up and get some fluids in her. I did just that. Her temp was only 101.7. Not as bad as I had expected. She felt cruddy though, she just wasn’t her spunky self. She didn’t want her milk bottle so I gave her some gatorade and tylenol. She chugged down about 4 ounces. Then about 10 minutes later she puked it all up. She immediately grabbed her bottle and went to town on it again. Then puked it right back up. She then went to the fridge and started yelling EAT EAT EAT. I had to distract her because no way was I going to put her through that, eating and puking more. I got playdough out for the boys and she wanted to play too so I pulled her chair up and they all played. I hooked Gage up for his lunch and made Charlie some noodles. Tinleigh was starting to get irritable so I got her down from the table and gave her a little more gatorade. It stayed down. Then I unhooked Gage. As I started to gather Tinleighs things for nap Gage moaned at me. As I turned and looked at him it was like slow motion. I knew exactly what was about to happen but couldn’t do anything. He was about to puke. Then he puked. I grabbed the trash can and he puked more. He continued puking until every drop of his feed was in the trash can. All 13 ounces. Well crap. Then about 20 minutes later my phone rang. High Kara this is so and so from the ER just letting you know that Gage and Tinleigh both came back positive for Flu B. Really? I hadn’t noticed. We’re thinking Gage had a virus and now has influenza. So Gage is now back down, Charlie’s fever is slowly rising again and Tinleigh is napping by 1:30. Gage didn’t have a fever but instead had a low temp of 97.4. I let a few hours pass then I hooked him up with 6 oz of pedialite. I can’t let Gage get dehydrated because his CK levels could easily go back up. Charlie wouldn’t eat anything but toast and drink chocolate milk. As long as it was staying down I stuck with it. Tinleigh slept. Finally around 6:30 Nathan got home. Gage had fallen asleep on the couch and Charlie was up to 102 and feeling like super crud. I made my break for the grocery. Just as I’m checking out Nathan calls, Tinleigh woke up, drank gatorade and puked. UGH. Home I go. We decided Tinleigh needed pedialite so Nathan ran and got some. Charlie decided he wanted to go to bed. That was fine with me. Gage was on his 3rd feeding of pedialite since he had puked. I am so glad he is keeping it down. Before bed I checked everyone’s temp. Charlie was 102, Tinleigh was 99 and Gage was 95.5. Both boys got a shower and were tucked in. Tinleigh wasn’t quite ready for bed and I wanted to try and get more fluids in her. She drank 2 ounces and all was well. Her and I sat and watched team umizoomi. About 15 minutes into it she had slithered her way off my lap and onto the floor and was just laying there. She was definitely ready for bed now. Nathan was upstairs working so we went up to say goodnight. I laid her on my bed to change her diaper and I could hear it coming up. I scooped her up and leaned her over my arm outward so she would puke on the hardwood floor and not my bed. She yakked up all the pedialite. Darn. So she’s on the fast road to dehydration at this point.
I just checked the boys temps. Gage is at 96.5 and Charlie is at 99.7. I also gave Gage another feeding while he slept. Hopefully we can try formula tomorrow. I woke Tinleigh up and offered her some pedialite. She drank about 3/4 of an ounce. So far it’s staying down and she went right back to sleep. So they’re all medicated and sleeping.
Nathan has to travel tomorrow and won’t be around so I want to try to avoid an ER trip with all three kids. It was a year ago March 1st that Tinleigh had been in the hospital with RSV. That reminds me Gage also has a full blown cold, which on day three always means asthma flare. Tomorrow will be day 3 of that.
The boys get scoped next Tuesday. I’ve already called the nurse to see if it can still happen. She informed me as long as they don’t have a fever the day of and can breath normally then they will be scoped. So stay away asthma and go away fevers!
I’m sure I’ll update tomorrow. Hopefully someone will improve!
Todays topic: We can all use a little help: Friends and Family
What is your advice for those who are faced with the decision to tube feed or are new to tube feeding? Share your knowledge and experience to help others!
Today’s topic was a logical decision but very hard for us to say out loud.
Like I have blogged before, I never would have imagined we would be at the point we are now. Our road seems to be turning into dirt as I type. A little Tinleigh update – she’s recently had some food impaction and is back to choking often. Not good since we have removed all foods she has tested positive to plus some. We don’t have high hopes for her next scope, which may result in a tube for her as well. Few extra prayers for Tinleigh if you don’t mind.
Back to the topic
The decision of getting a feeding tube can almost be a selfish one for the parent. It can go either way too. Especially with the allergy kids. A parent can say yes give my child a feeding tube then I won’t have to worry about cooking all these special meals for them. Makes me sick to my stomach to type that out. A parent can also say no you will not put a tube in my child I would never do that to them. (guilty here) Which may result in poor nutrition and poor growth.
When considering a feeding tube for your child you must think about your child’s health.
A child’s body is made to grow. It is your job as a parent to help them do that in a healthy way. If your child is falling on the growth charts it’s your job to get them back on. Their little brains are developing as well. If the nutrition isn’t there, then their brain can’t develop as it should be. You need to get your child what their body needs to thrive. If that means through a tube then you should help them to get one placed.
We struggled back and forth on the decision. What it came down to was what Gage needed, not us. He was losing weight. Being 4 his little brain is developing a lot right now. He was missing an entire food group from his diet. How selfish of me to even think about trying to remove something else from his diet to get him a clear scope. It was time to throw in the towel to his horrid disease and give Gage what he needed, a g-tube.
Gage is shy. We knew it was probably going to be hard for him at first. He has shocked the pants off me though. He is quite proud of his tube. He’s also proud of how big his muscles are growing. I think it may have been a totally different ball game if he would have had to have an n-tube first. That may have turned him into a hermit. I’m glad we made the decision to push for the g-tube from the get go. I’m also so glad we had an understanding GI doctor at the time.
There are many diseases that may require kids to get a feeding tube. I only have experience with the allergy side of it. I think that all parents of tubies would agree, seeing your child thrive with a feeding tube is a huge sigh of relief.
I won’t lie, I don’t miss cooking for Gage one bit. However, if he had enough food in his diet to thrive on, I would cook for him again in a heartbeat. Hopefully that day will come. For now I’m just calling this my Gage cooking break.
Gage was SO excited to get his shirt. Just the fact that it said super tubie excited him. Not because it was actually about his tube, but because he thought it made him a true super hero. Of course I could go all sappy on how in our eyes he is… So then, with Charlie in his shirt Gage assumed that meant Charlie was his side kick. You would think that when I put on my t-shirt I would become a side kick as well. He said “No mom, that makes you my butler.” Some days I feel that way Gage.
I decided we would wear our t-shirts as much as possible this week and I will wash them every night if the boys want me to.
Both still had sleepy eyes. Gage had his backpack on with his “breakfast”.
Then right after I snapped the picture I caught a true brother love moment.
Gage turned to Charlie and gave him the biggest hug. I didn’t say a word, but I’m pretty sure Gage was just so happy Charlie was wearing his shirt to school too showing his support.
Then I got Tinleigh up and dressed. Dropped Charlie off at school. Gage had a morning doctors appointment, no school for him today. When we came back home I tried to get Tinleigh’s picture in her tubie gear.
I kept getting this. She is ornery. Flat out ornery. She is giggling with her back to me.
I finally got one good one.
Today’s topic for awareness week:
Happy Feeding Tube Awareness Week! The mission of Awareness Week is to promote the positive benefits of feeding tubes as a life saving medical intervention.
It was a given when we came to the point of Gage needing a feeding tube. It sucked telling the doctor okay let’s do it. Sucked even more telling Gage what was going to happen to him. Some days are still so very hard. However, while flipping through some pictures recently I realized how much of a difference Gage’s feeding tube has made.
I am starting off feeding tube awareness week with two pictures. The first is Gage in sept 2012. He is trying his coconut milk for the first time. The second is last night. I can’t believe how much he has filled out! So even though adjusting to the feeding tube is so hard, just seeing how much he is thriving is enough to make it worth it.
Look at the belly and how much his little arms have filled out! He has put on 5 pounds since December 5th, the day he got his tube. That’s 15% of his own body weight! I’ll take that!
One of the first things we told Gage when he was going to get his tube was that it would make him faster and stronger. It sure is! We remind him that all the time too. When he see’s a family member he hasn’t seen in a while he likes to flex and show them how big his muscles are getting.
Charge on Gage! This awareness week EVERYONE is cheering you on!
When we first found out Gage had Eosinophilic Esophagitis I, like any other mom, ran to the computer and googled it. I can remember sitting and watching this video and crying. I felt horribly for those kids. I couldn’t imagine having to pay the equivalent to a mortgage payment for formula. It never really hit me then that it’s a life long battle. That we would be fighting this for days, weeks, months and years. I never thought it would get worse for Gage. I never imagined Charlie having it and certainly not another child.
Well, here we are. It did get worse. Gage is on a feeding tube. We did pay $1200 a month for two months for formula to feed him. Charlie is flaring back up. Tinleigh is a horrible mess.
I think my reality is starting to set in. For the last 3 years the focus has been so much on what to feed them I’ve never taken a step back and looked at the big picture. We are a special needs family. Sounds so strange. It’s very much the truth though.
My kids face everyday with the risk of having a deadly anaphylactic reaction. I just learned this week your lungs can collapse with such a reaction. I’ve seen Nathan in the ER I don’t know how many times so I felt I could handle one if it happened to the kids. Learning about the lungs collapsing scares the pants off me.
My kids also face a life long journey of food battles. I imagine the teenage years being the hardest. By that point we’ll all be so tired of this shit they’ll boycott treatment and if they’re anything like their dad they’ll eat what they want and risk it. Scares me knowing I can’t always control what they put in their mouth. That’s a long ways off though, I’ll do my best training now to prevent that from happening!
We’re not the only family dealing with this, please take 5 minutes and watch this video.
My miss Tinleigh
It’s that dreaded time every baby fears. Shots. My temperamental fireball gets mad at herself if she falls down. How will she handle shots this go around?
Not well. She had to get 5. I’m not sure if the shots themselves were worse or if it was the removal of the band aids after her bath that night.
The thing that worried me the most this time around was the MMR shot. Development of the vaccine involves eggs. Gage is anaphylactic to eggs but got the shot before we knew that. He did just fine with it. Tinleigh doesn’t test positive to eggs but does test positive to chicken. She has never eaten an egg though. Not sure why I was so worried with her getting it. It maybe just the fact that all three of my kids are allergy balls and if someone were to react to a vaccine it would be one of my kids. The doctor wanted her to have it because he felt the risk of her catching one of the viruses around here was high. So we did it. Five shots in with some very loud screaming and one pissed off baby I decided it would be best to linger in the doctors office a little longer than usual afterwards. It’s been two days since the shots and no symptoms.
We did decide not to do the flu shot this year. Both boys test positive to eggs and chicken. Having the allergist do a skin prick test with the actual vaccine to see if they have a positive or negative reaction, is by far worse than the kids actually having the flu for 24 hours. My kids fear needles more than doomsday prepper’s fear the end. I had a flu bout towards the end of December and Charlie had it just this week for 24 hours. Luckily Gage and Tinleigh haven’t gotten it. Knock on wood. I refuse to put the kids through more needles unless it’s necessary. Nathan and I both agreed that even though the flu can turn ugly, it’s not worth putting them through what they think is torcher to get the shot. I do all I can to keep them healthy everyday, what’s curing a little flu bug?
I believe vaccines are a huge controversy. Mainly linking to autism. How do other allergy moms feel about vaccines? Do they avoid giving their child certain vaccines? Are they like us and pray for no reaction to the vaccine to protect our child’s health in the long run? Do all egg positive people steer clear of the flu shot or do they risk it?
ALWAYS ALWAYS ALWAYS talk with your kids about epi pen safety.
Then do it again.
Keep doing it.
Especially if they’re little.
We had a scare tonight.
I’m in the kitchen.
I have my back to the boys.
I hear a click.
Then a scream.
I turn and Gage has something hanging from the center of his hand.
Hmm, I thought, what could that be?
Must really hurt, he’s really screaming.
I run over and realize it was Nathan’s epi pen dangling from his little chubby hand.
I literally had to pull it out.
Gage screamed and Charlie cried for him.
It was so dramatic and intense.
Turns out Gage is just fine and learned a good lesson.
They make practice epi pens with no needle.
He told me he was trying to practice on his leg but couldn’t get the needle to come out.
Yep, he’s just 4.
On a side note, always print out emergency room directions from your new home the day you move to a new state.