Day two was by far MY favorite day. My wonderfully supportive good friend Rachel drove her 3 boys two hours to meet us at the zoo! We haven’t seen each other since January of 2011! It was a much-needed get together. What better place to do it than a zoo where the boys could all run, enjoy the animals and burn their energy out.
The weather was perfect and everyone was in a good mood. That’s important on a long zoo day. Especially with 6 kids under 6. Rachel and I were able to catch up while the boys ran. My favorite moment that I actually missed was Charlie and the gorilla. There was a huge old gorilla laying on a box right by the glass. Charlie walked over, stepped up on the ledge and started pounding the glass right by the gorilla’s head. If I would have seen him I probably would have given him an earful. The gorilla took care of it for me. Rachel said that gorilla just reached its long arm out and smacked the glass right at Charlie’s head. Scared the crap out of Charlie and he went flying backwards off the ledge, that’s the part I saw. It makes me laugh just typing it. Charlie learned his lesson. I’m not going to bore you with a ton of animal pictures you’ve seen before at your own zoo.
It was a great day with a great friend and her sweet boys. Much needed. Thank you Rachel!
Oh, duh, food allergy blog what did we eat? I had brought some lunch meat then just a bunch of snack type things for the boys. I did our usual pack up with food bag, medical bag, diaper bag and I think that’s it. It was a little trickier being that I had to pack out of our hotel room and could only use what I had on hand. It worked though, that’s all that matters.
Now for the Cheesecake. Rachel suggested Nathan and I take the boys to the cheesecake factory for dinner. Their menu is huge and we should have no problem feeding them. I text Nathan to find a local one and we had our plans made.
This night I ordered myself a long island iced tea. Oh boy was it yummy and probably 2-3 years since I had, had one. It was not spilled. Rachel was right. They had a great menu with something for everyone. Charlie had a cheese quesadilla, Gage had a bread-less blt and some fruit, Nathan had a pizza and some kind of Asian dumpling appetizer, I had a chipotle chicken pasta dish, Tinleigh had some baby food and french fries. All was
good PERFECT! I couldn’t have been happier, my tea helped that along. We asked them to remove the bread from the table so no one was bent out of shape about not getting to eat it. I even ordered key lime cheesecake to go. I felt a sense of calm knowing everything went so smooth. Thank you Cheesecake Factory!
We went back to the room and then went to swim for a while. The water was freezing but you know kids and water. So we left them freeze for a half hour then headed up for bed. We were all exhausted from the long day so going to sleep was no problem. Then around 5:30 am I woke up SO SICK. Lucky me, I got food poisoning. I knew it was a day too good to be true.
Day 3 – weird science. Stay tuned.
In the midst of all our bad news Nathan was getting ready to head out for a trade show. Why don’t you all come with me he says. Get out of the house and take a break. I checked with the school and that was fine for Charlie to miss the rest of the week. So at 6pm Monday night I packed up.
I am a pro at packing. I can pack for a weekend, week or the entire house in the blink of an eye. Once we were all set we needed a trailer to load everything.
3 duffel bags of clothes
3 kids book bags with things to do
a large cooler
a medium Rubbermaid container with dry food
pack n play
one extra bag for meds, nebulizer and pool things
plus a book bag for me of quick snacks, tablet, camera, a few extra coloring book with crayons and the dvd player with dvds.
The next morning we were on the road for our 9 hour road trip. We all feared the screaming display Tinleigh would put on. She is still a screamer and recently hates to ride around town. I’m not sure if it was the constant motion or if she just sensed she needed to be calm but the stinker only had maybe a few outbursts. The boys didn’t even nap and all was well the entire way.
I had packed ham for the boys with bread, chips, sunflower seeds, Gage’s fruit pouches, Charlie granola bars and baby food for Tinleigh. Eating along the way worked out just fine.
We arrive late in the evening and head down to the hotel restaurant for dinner. We’re sure they have something the boys can eat. The kids menu had grilled chicken for Charlie but no pork for Gage. They do have pork chops on the menu so I ask if they can do a child size and pan fry it.
Waiter: No ma’am but we do have the apple compote butterfly chops.
Me: Ok then cut it in half and pan fry it.
Waiter: Ma’am do you realize they’re $22.
Me: Yes I do, but he can’t eat anything else.
Waiter: Ok, would you like the apple compote on it?
Me: NO, please just cut it in half and pan fry it plain. Steamed broccoli and pineapple on the side.
Waiter: Do you want the apple compote? NO!
Me: I’ll eat the other half of the chop.
Nathan and I then each order a beer. We needed one after a long day on the road. Waiter brings Nathan’s and walks over to hand me mine. Somehow, the big round tray lands on Tinleigh’s head the beer flips off onto the table backwards spraying poor shocked Tineligh in the face and all over the table. I wanted to crawl under the table of chaos. With in 2 minutes they had us up and moved to another table. Poor Tinleigh stunk like a beer and was hysterically crying at the drink guy. I had to take her out.
While Tinleigh and I were out the rolls came. Nathan and I decided that since Gage is getting a tube what’s the harm in a little wheat until it happens. He’s never had an outward reaction on it and he’s even had a clear scope while eating it. We don’t really know if it affects his esophagus or not. So Nathan allowed them each to have a half of a roll. When I returned with Tinleigh the boys were both grinning ear to ear so excited to tell me they ate a roll. I would have never guessed something so common for anyone else going to dinner, would be so exciting to an allergy kid. I of course panicked because we didn’t know what all is in them. I asked, we never did get an answer. Shortly after Gage became extremely gunky, coughing and could barely talk. We gave him Benedryl and it cleared him up. Gage repeated over and over that it wasn’t the roll making him cough, it was his lettuce. Broke my heart. He wanted more roll and was trying to make it OK for himself to have another one.
Going to bed that night was tricky for Tinleigh. She’s fine in the pack n play but not fine with others in the room. Took some screaming and a completely dark room to knock her out.
We all slept in the next morning which was a nice change. Ready to start day two!
Not sure I really realized what an adventure this was going to be.
Looks can be deceiving. Eosinophilic Esophagitis likes to play that game. I spoke with the GI doctor on the phone Friday. She told me she knew the boys biopsy results since Tuesday but wanted to give us the week to be happy.
Let’s start with Charlie. His esophagus looked normal, however, eosinophils are present. When the GI doctor takes biopsies they take 3-4 in each area that they take them in. EoE is a patchy disease so they want to make sure they are getting a clear reading. Charlie’s upper esophagus was only a 4. His distal was 30 on one biopsy and the other 2 in that area were zero. The distal is the lowest part of your esophagus. Charlie has never really had much inflammation. His first scope was 24 eosinophils present and there was no inflammation.
Treatment for Charlie will be to do skin prick testing on all foods and see what that says. He hasn’t had a skin prick test in 2 years. There maybe something that he’s eating a lot of that’s causing the patch and small number of eosinophils to be present. We are not putting him back on steroids since he doesn’t have inflammation and because I asked that we wait and see what happens.
Our hopes for Gage were high, even higher when his esophagus looked so good. Unfortunately, Gage is worse. In one area he dropped a little but stayed the same. He was 30-50 and now it’s 20-50. Not great improvement but some. There’s a range because of the 3 biopsies. See how that works? In another area though he jumped from 50 up to 70. Even the GI doctor is frustrated. We have been told from the start we’re not the typical family with allergies, allergy testing or Eoe. This scope for Gage proved true to that statement.
1. Do patch testing again on him and see what comes up.
2. We wait it out for 6 months, stay exactly the same with diet and steroid and see what happens.
3. He goes on an elemental diet, which means we put a feeding tube in.
The GI doctor said it’s up to us. It’s a very hard decision. She even suggested we get a second opinion. This is why she waited until the weekend to call us.
Our decision: We will not patch test because if we do and more foods come up positive what will be left for him to eat? If we wait for 6 months we risk him getting worse. His body is already attacking more and more foods. Along with that, he can’t thrive on what he’s eating now. He’s lost weight since this last diet change. My boys aren’t picky eaters. When you don’t have much left to eat though food gets boring. Gage is also basically on an Atkins diet but with out the diary and fat content. A four-year old can’t grow on a diet like this. His brain is still growing as well as his bones and muscles. It’s almost selfish of us at this point to keep him from the nutrition he needs. So with that said we made the choice to have a feeding tube put in. We will be doing one that goes directly into the belly. I explained to the GI doctor that Gage would never leave the house if we did the N-tube, through the nose. If it were Charlie he could pull it off no problem. Telling everyone he meets why he has it and what it does. That’s not Gage’s personality. She agreed to do what ever works for our family. I also let her know that a second opinion wouldn’t be something we would do. I know we’re at the point of a feeding tube and any other GI doctor probably would have pushed it on us earlier on. This doctor worked with us and let us go with a plan so that every other option was exhausted.
There is that tiny chance that if we did wait 6 months he could be better then we could add food back. Is it worth his health though when he’s a growing pre-schooler? We didn’t think so.
One other freak problem our family has is we don’t have symptoms. If we had symptoms ruling out certain foods would be so easy. Many children have chest pain, belly aches, diarrhea, rashes, etc. We don’t have any outward guides to go by. Ever wish painful symptoms on your kids? Our first GI doctor didn’t even want to scope Gage because we had no other symptoms than multiple food allergies. Gage only has a handful that he actually is truly allergic to.
Once the feeding tube is in place we have to get a clear scope then we can add food back into his diet. He can eat things like cotton candy and smarties while he’s on the feeding tube for now. There is a small chance though that we don’t get him down to a clear scope. That is a different ballgame the doctor said and we’ll cross that bridge if we come to it. Meaning it would probably be a life-long feeding tube. Let’s pray that doesn’t happen. So, when we do get a clear scope the doctor would typically give us some of the least allergic foods to try first. A grain, fruit, vegetable and meat. When most kids start adding back foods this is when symptoms are a huge help. You add back a fruit for two weeks then the vegetable an so on. Let’s say you start having chest pain after you add the vegetable. You would know not to keep eating it. We don’t have that problem, no symptoms. So adding foods back maybe a lot slower for us. After you eat the new foods for a period of time you are scoped to make sure you’re still at zero eosinophils. If you aren’t then all are taken away. It’s a very long a frustrating road ahead. He will be scoped more, if we wish. Just depends on how fast we want to get things back and how well he does. It is always our decision though to take a break. Go 8 months or however long with out scoping and just let him be.
There is no minimum time frame of how long he will have this feeding tube.
He can still take a bath and swim in a chlorinated pool. He can cover it and play on the beach. Contact sports will not be allowed, but we have plenty of time until we get to that.
I worked my butt off feeding him since May of 2010 when he was diagnosed. It is all I have done. I pride myself in the fact that he is still growing and is in the 70th percentile across the board. I just wonder how big he would be if he didn’t have food allergies.
Even though I know we are at the point that we have to take away food I feel defeated. I let him down. I couldn’t beat this stupid disease for him. It won.
I hope he takes this in stride. I fear it’s going to be very hard for him though. We’ll see.
Please say a prayer for my family.
I think the boys think I’m super mom.
Charlie’s really been buttering me up lately with complements. The other day we were talking about Tinleighs hair color and Charlie asks if she’s half of me and half of Nathan. I tell him yes. He says well I am too right? I said yes and Gage. Then he asks “Well what of you am I? Am I sweat, loving and caring just like you?” Then just last night he says out of no where “Mom do you know what you’re full of?” I half fearfully shook my head thinking he had heard “Full of shit” somewhere. He says “SUNSHINE!” He giggles and hugs me. So he just thinks I’m great, I hope it stays that way.
Now Gage expresses himself a different way. I know he thinks highly of me because I bake everything for him, he thinks I can do anything. I make him his milk. That must be magical to him that I create his milk and Charlie’s comes from a cow. Well tonight he requested that I make him cheese. Nathan quickly informed Gage cheese is made from cows milk and he can’t eat it either. Gage didn’t care for what Nathan had to say. “Just make it mom.”
Guess I better get a cape and super mom shirt. 🙂 This super mom needs to do some mega research for a cheese substitute.
The Daiya cheese has pea protein in it and he can’t have peas. I know he misses dairy products in a huge way. I miss the calories, nutrition, fat and protein he got from dairy. Maybe someday Gage.
I arrive home tonight and the boys are yelling at me to go check the mailbox. They were so excited and could hardly stand it. So I pick up Tinleigh and we head out the front door. There’s a snake slithering across the sidewalk! I scream like a girl, because I am one. It was also bigger than I like to see slithering around my house. I yell there’s a snake. I’m thinking in my head how in the world did they do that. Nathan and the boys come running out armed with a broom and plastic container. Gage asks if I had checked the mailbox yet. This wasn’t the joke.
The snake gets to a bush. Nathan works and works to poke it out with the broom. The boys are screaming and so excited and right in Nathan’s space. So he’s telling them to get back. Charlie’s giving everyone orders on what he’s going to do when the snake comes out. I’m yelling at him he’s not doing any of what he’s saying. The snake comes out, quickly goes past the Japanese Maple and into the next bush. Gage is screaming at the top of his lungs, scared and excited all at the same time. Tinleigh starts yelling because everyone else is yelling. Nathan’s beating the bush with the broom. I’m sure if anyone would have driven by they would have thought we were crazy.
Finally the snake makes another appearance. Charlie prepares the container as Nathan pins the head with the broom and bends down to grab it. CAUGHT IT! Charlie runs and gets his snake encyclopedia, see it does come in handy. We inspect the snake. Everyone pets it. Charlie ever so gently wraps its tail around his arm and talks to it while Nathan holds the head. Tinleigh is grunting and yelling at it in her deep voice this time. Gage is begging to hold it but is too scared to touch it.
The boys and Nathan took the snake in the container back to the creek. I didn’t witness it but rumor is the snake went crazy when they released it. Charlie tried to pin its head and pick it back up. It then bit Gage’s hand and Charlie’s big toe. Neither of which have a mark but that’s what they told me. Charlie told me for the next hour his toe was tingling.
We later identified the snake as a garter snake. I guess snake club is still alive.
What was in the mailbox? A little plastic scorpion.
Charlie missed a few days of school. Today when I picked him up I asked if his friends missed him. He replied “Yes! They didn’t even do snake club. I guess that’s just how important I am.”
I just hope the snakes stay in the creek!
I had a scare today, what’s new.
As I was making the boys lunch I turn to see what Tinleigh is doing. Little stinker had found Charlie’s milk cup and was drinking it. OH NO SHE’S DRINKING IT! CHARLIE GET YOUR CUP!!!
Charlie’s grabs his cup. She of course screams at him and comes after him into the kitchen. By the time she reached me she was coughing and very gunky. I picked her up and she had hives around her mouth. I grabbed a wash cloth to wash her off. She was now digging at her ears and rubbing her whole face. WOW the reaction was coming on quick. OK Benadryl – SHIT WHAT’S HER DOSAGE???
Last I knew it was 1/3tsp but how much did she weigh then? I hop on the phone and call the pediatricians office. “Hi I need the dosage amount for a 20lb baby for Benadryl right now please” I was transferred to the nurses voicemail. I hang up and call our allergists office. “Hi my baby is having an allergic reaction. She weighs 20lbs and I need her dosage amount for Benadryl” After a minute the receptionist comes back and says “The nurse said it can be different with different brands of Benadryl. You need to call the pharmacy you got it from.” I hang up.
I went ahead and gave her a 1/2tsp. Well not all of it made it in her mouth because she decided it was gross. I don’t blame her. Still coughing and itching I wanted to find out what her dosage is and if I could give her more. So I call the pediatricians office again along with texting a few nurse friends. This time I let the receptionist know that I had just called and I need the answer right now. Again, I am transferred to voicemail. By this time I am getting incredibly angry. I Google it and find nothing then call the pharmacy. Whom I’ve called before for drug advice for my kids but they told me I need to ask my pediatrician. So I didn’t have big hopes. Luckily the girl did help me!
A baby weighing 20lbs can have about 3.6ml, which is closer to 3/4tsp.
THANK YOU! So I gave Tinleigh a little more.
Lesson of the day: Always know dosage amounts before you have an emergency.
Now, not every family would think to know the dosage amount of Benadryl for their family. What if they did have an emergency like I did. They may have no clue how much to give their baby. I will be letting the doctors offices I called know what happened today. I am not a happy camper. I have jr epi pens in the house and could have used one if needed, but again, not everyone does.
In the meantime Charlie keeps apologizing to me. I told him it wasn’t his fault. Not to worry about it. She is fine. He replies “Well, at least we know” Meaning we know how allergic she really is to milk. He’s exactly right too. I didn’t know, she hadn’t had a dairy product since she was 2 months old through my breast milk. I had tried around 9 months to give her nutramigen milk based formula but she maybe only had 3 oz total of it. She didn’t have a reaction because the protein is so broken down her body probably didn’t recognize it. I could only get about an ounce in her at a time, she didn’t like it. I had been thinking about giving her some food now with milk in it to see how she did. Now I don’t have to. Now we know.
So that was just another adventure in our allergy life.
Our goals for the day: have Tinleigh’s consult with the GI doctor and get both boys scoped.
By now the boys understand that on scope day you get sprite until a certain time and then nothing until after the doctor looks in your throat. It’s not a big deal. I don’t dwell on it and I certainly don’t eat or drink in front of them. They ask for something and I remind them the rule. They have never whined about it.
So up in the morning and plan to leave at 9:30 which happened to be the cut off time for sprite. Perfect. I give both boys a nebulizer albuterol treatment before we leave as the doctor suggests since they both have asthma. Gage’s always becomes asthmatic when they knock him out. In the truck we go with two boys buzzed up on sugar and albuterol and normal, loud little Tinleigh.
Everything was fine. We pull into the hospital an hour later and Gage pukes. SHIT. A million thoughts go through my head. This stuffy nose is actually the flu, his respiratory isn’t healthy which makes him puke at times, he’s car sick and oh my gosh are they even going to scope him now? Luckily it was only a little bit of sprite. I’m beginning to think he was just car sick. So we all hop out. I load up the stroller. Where’s Tinleigh’s pacifier? She had it when we got in. It’s lost.
We now need to buy Gage new pants and Tinleigh a pacifier.
We go to the GI clinic first for Tinleigh’s appointment. The waiting room was so crowded there was no where for us to sit. I’m thinking to myself this isn’t going to happen. So I very happily inform the receptionist we must be at same day surgery at 11:30. She smiles and says she will let the nurse know. So by 20 after 11 I approach the desk again to let them know we are leaving. “Ok Mrs. Root. I did let the nurses know.” I told her to let them know to come get us when our doctor is ready for her.
Off we go again, this time to same day surgery.
We are quickly called back and they give us just a huge area in the back instead of a tiny room. Thank you thank you thank you. So as the boys chat the nurses ear off she notices Gage’s pulse ox was only 92. Now I knew he had a stuffy nose but had not heard a bit of wheezing, I have a stethoscope. So I am almost peeing my pants worrying today won’t be Gage’s scope day. I wasn’t about to mention he had puked unless she asked me first. She then tries another finger and gets 93. Shoot! She calls over another nurse and together they listen to his lungs. “There’s a crackle in his right upper lung” I explain he was stuffy yesterday afternoon but he does turn for the worse very quick. After we go through the pile of paper work, get the boys gowns on and we talk with everyone involved they decide to give Gage an albuterol nebulizer treatment. He did have a productive cough and cleared his lung so they weren’t too worried about him being too sick. Phew.
As we’re doing the paperwork a few nurses come looking for us from the GI clinic. They informed me we missed our appointment. I informed them we were there and they didn’t get us in on time. Nathan and Tinleigh left to go meet with the GI doctor. I sent him a quick text with all the information I needed them to go over. The conclusion of that meeting was that she has no problem scoping Tinleigh and will gladly do it whenever we want her too. She said with our history she has no reason to turn us down. She did put Tinleigh on a reflux medication so that if she does have some eosinophils we know it’s not from reflux.
With the boys happily watching a movie we get things in motion. A nurse brings in Gage’s albuterol treatment and hooks him up. In the meantime the doctor says let’s go I’m ready. Well they had Gage marked as going first but he’s not ready. Ok then let’s do Charlie first. Well the albuterol treatment won’t take long and Charlie’s not fully in the computer yet. We still don’t have anethesia here to have the parents sign papers. *sigh* In walks two girls, younger than me, but old enough to be out of college. “Hello Mrs. Root I’m with children services and I’m here to explain to the boys and show them pictures of what they will be doing today” I jump right up “oh thank you but NO” I think I burst her bubble. I quickly explained that we have done this a number of times and the boys are completely comfortable with what’s going on. I just knew her pictures and explanation would only bring up a million questions. She was so flustered and didn’t know what to say. I said I was sorry but we have things just how we need them and I don’t need anything scaring them or creating bad images in their little heads. So then she asked if she could let them pick out their smell for the mask, I allowed her to do that. She smiled and went right to work. Both boys agreed on bubble gum. She marked it down and skipped away.
Nathan and Tinleigh came back at this point. Poor baby was starving and tired. So I turned her stroller so the boys couldn’t see and I begged her to eat baby food from the jar. She did! I couldn’t believe it but just shoveled it in hoping she wouldn’t change her mind. I didn’t pack her anything else. Anethesia showed up as well. We went over the boys allergies and our history of malignant hypothermia. With an egg allergy it makes it harder to administer the drugs because they typically use egg based drugs with MH patients. So Gage gets a very special concoction of things. We like to keep things interesting. Anethesiologist brings back the oral versed and gives it to Gage. Game on!
Over the next 15 minutes we watch Gage slip into silly world. Today though it makes him super sleepy. By now it’s 1pm and he’s had nothing to eat. So they get a wagon, Nathan puts him in it and off he goes. Here come my nerves! Today I take on some lovely chest pains instead of butterflies. My anexiety has been so high lately it’s common. It typically takes about 45 min until the doctor comes to talk to us. I hate those 45 minutes. I don’t know how a parent waits when a child undergoes a heart surgery or something so major. My wait is so minor. Finally the doctor appears. He’s shaking his head no and I just start blurting out questions. First I asked if he was still all white and covered in eosinophils. The doctor smiles and says Gage doesn’t show any signs of eosinophilic esophagitis. WHAT? He said there were some slight striations but other than that his little esophagus looked normal. I ask again if there was any white patches because I’m just not sure he understood me. He assured me Gage looked great. Nathan and I high five. This is awesome! I was so excited.
As it slowly starts to sink in they give Charlie the oral versed. Round two!
Tinleighs getting antsy now. As a nurse passes by I asked where I could buy her a pacifier. I very well knew they had to have some somewhere for patients. Score! The nurse promptly brought Tinleigh a new pacifier. It wasn’t her typical kind so it took some getting use to.
The OR nurse comes to get Charlie after about 10 minutes. The drug hadn’t really taken hold yet but I said it was fine to take him. He was very relaxed. So he gets in the wagon. He starts getting goofy now and tries to hide. Away goes Charlie. We now get to move to the waiting room. Nathan goes to get us some food, neither of us had eaten all day and now its 2pm. About 20 minutes later Nathan comes in with our food. Just as we get started we’re called to meet with the doctor. Of course. So we head into the little room. He greats us with good news again! We couldn’t have been happier. About an hour goes by and I say “I hope Gage is ok”. We would usually have him by now. Just then the receptionist gets a call and yells “Parent of Gage”. I thought we would get to go meet him in recovery. Instead it’s a phone call from OR. Gage is still intubated. He’s having a really hard time waking up. He’s ok, just really sleepy. Not something I wanted to hear. So we wait another 20 min and they call us to go meet Gage in recovery, Charlie wouldn’t be far behind.
Tinleigh at this point was starting to get restless. I let her crawl around on the floor of every room we were in. She was exhausted but doesn’t like to miss a thing. I just knew the recovery room was going to be fun.
We meet Gage in the hall and he’s awake and happy to see us. He immediately shows me they put a drink in his hand again, IV. The nurse was laughing. She said the boys weren’t side by side in the OR recovery room but as soon as Charlie woke up and saw Gage a few beds down he yells “Hey Gage it’s me Charlie” and starts waving. The nurse said they kept talking to each other over the other kids in there. I can only imagine how cute it was. In the recovery room the kids get to chose if they want to sit in the recliner alone or have a parent hold them. Gage chose daddy. His oxygen was only around 91 and that worried us. He wasn’t wheezing so we weren’t sure what was going on. The nurse said since we had to wait on Charlie she would let him sleep a little longer and give him some oxygen. He fell right back to sleep. Tinleigh is wanting every nurse to hold her. It was cute. Then Charlie comes in and the last kid leaves. We had the whole recovery area to ourselves. Charlie was more alert and ready to roll. He wanted me to hold him. So I did for a while. The nurse holding Tinleigh had to put her back in the stroller. Tinleigh was not a happy camper now. Luckily Charlie was fine with me getting up. I gave him the tablet and he watched a movie. I made Tinleigh a bottle and pushed her around while she drank it. Luckily she finally fell to sleep.
The nurse removed Charlie’s IV and he was ready to go home now. We still didn’t have Gage where we needed him to be though. He was responsive but so sleepy and still low oxygen. So after speaking with the anethesiologist the nurse said she was going to give Gage an albuterol treatment and we would see what that did for his oxygen. It brought it up to 94 and boy was he awake now. So they gave Charlie some pudding and I gave Gage one of his fruit pouches. After they ate the nurse said we were free to go.
We pile in the truck. I had 4 puke bags ready. I love those little green puke bags. Gage was white. Lips and all. So I didn’t have high hopes he would make it home with out getting sick. I put the movie on for them and we get on the road. An hour later we’re a mile from our house and Nathan stops at the gas station for some pop. I turn around and Gage is puking in his bag. 😦 Nathan jumps out and runs inside. Um, ok. I jump out with another puke bag and trade Gage for a clean one. It was his fruit pouch. All of it. He said he felt a lot better. I was glad he did but hate that it took puking to make him feel better. Once we were home Gage wanted to eat and drink water. The color was back in his lips now so I knew he was on the mend. He ate some of his millet bread and drank a little water.
That was our day, that was it! Well, not actually. My chest pain had radiated to my back. Right between my shoulder blades. I was so tight and tense by the time we got home it was almost hard to breath in it hurt so bad. I have got to learn some relaxation techniques!
Our day was chaotic, emotional and draining. We never did get Gage new pants.
Tinleigh will be scoped in December. We will have the biopsy results back for both boys next week. That will give us the true reading of what’s going on in them. I am still sort of in shock that Gage looks so good now. I honestly was preparing myself for the g-tube. I am so thankful our GI doctor gave me the opportunity to try one more food change before we had to do it. I am so glad I didn’t give up! It’s been a very hard food change but next week we will know for sure that it was the right choice!
You can buy this story on e-books for your kindle or tablet for just $3.99. lol Sorry it was so long. Just getting all the details in there.
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I have to share a bit of how Charlie’s mind works.
The teacher’s question: How do you help your mom?
Charlie wrote “I help by being lazy”
I asked why that’s helping. He said because I’m not asking you for a snack, to play a game and I’m not getting more toys out. I’m being lazy and leaving you alone so you can clean.
He drew himself laying on the couch. Even did the detail of the blue lamp, chandelier and blinds in the window. That’s me in the pink shirt looking like a line backer.
Thank you Charlie for “helping” me.
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This is a long over due post. I had started at the end of the last school year and thought I better finish it! It’s an example of another one of our adventures! As you read this think May.
Because Charlie had to miss his field trip I took all three kids to the zoo for the day. We haven’t been to the zoo since we moved, so it was going to be a fun day.
They had recently opened a polar bear exhibit. Charlie thought it would be funny to look like he was running from the bear.
I will forever laugh when I see this picture. What a great imagination he has.
I let them ride a camel. They thought it was awesome!
Tinleigh, of course, enjoyed a bottle.
Then we came to the baboons. Yes, they’re doing what it looks like they’re doing.
There’s a reason i didn’t zoom in.
It couldn’t have been a better day. Took us 5 hours to see everything. The kids were very good, for the most part. Walking around for 5 hours will take a toll on anyone. It was cool enough that all the animals were out for us to see them. They didn’t have a ton of animals, it was more walking. We can say we’ve seen the zoo now.
We didn’t have any allergy problems all day. I was prepared though. What does an allergy mom pack for a trip to the zoo. Every high energy food she can!
2 juice pouches
2 bags of pop corn
2 containers of cheese and meat
crackers for both boys
A Gage safe cookie and sunbutter cups for Charlie
baby food and formula
Two packs of dry oatmeal for myself. I eat it right out of the pack. It’s quick and easy for me. Then of course our emergency bag. Today I had to add orajel and baby tylenol.
A days trip to the zoo can be done!
I almost forgot. We were able to buy something to eat and drink at the zoo.
Sprite and Lays chips. I think this may have been the highlight of their day.
Thinking about what adventure to write about tonight and I realized I have a lot of little tidbits to share.
1. Sadly we poured the sea monkeys to rest on Friday.
They lived 7 days with us. We loved watching their little bodies jerk crazily through their tank. We should have invested in the sea monkey water filtration system. The instructions did repeat “with the right conditions the sea monkeys will live a long life”. We apparently didn’t give them the right conditions.
2. The boys watched the movie the Sandlot this weekend. The dog freaked Charlie out so much he no longer wants a pet dog.
3. Nathan is now protesting Arby’s for bringing in sliced turkey. He can no longer eat their due to his deathly poultry allergy.
4. We all have our Halloween costumes picked out now. Watch for the Candy post coming soon.
5. Upon making a call to the GI doctor to get Charlie and Tinleigh signed up for the EoE clinic they were able to get Charlie squeezed in the same day as Gage in two weeks. Well after a nurse finally realized they booked us at the wrong location their appointment got moved up to this Friday. I am quietly freaking out. I feel like I should be doing something with Gage to prepare for this scope. There’s nothing I can do though. It’s either going to show that removing dairy is the key to him getting better or his little body is so haywire a g-tube is our only route at this point. As far as Charlie’s scope goes I have no idea what to expect. I pray he’s still clear and all is well. He has been having some reflux issues and a tummy issue for the last few months. I am so tuned into Gage right now that I just don’t know how Charlie’s scope will go. Gi will do a consult with Tinleigh the day of the boys scopes and then we will probably schedule hers. I’m second guessing doing that now.
6. Please keep voting for me daily for the Circle of Moms top 25 food allergy blog contest! Voting ends Oct 17th. I’ve been lingering right around 10th place.
7. We’re getting ready to tackle a new adventure – boy scouts! Stay tuned.
8. Charlie’s last flag football game is this weekend. I know I haven’t blogged on it this season yet. His asthma is totally staying in check. Could be the right weather or could be he’s starting to outgrow it!
9. Snake club is dying down a bit at school. However, here at home Charlie has built his first snake trap. He plans to catch snakes in the spring when it starts to warm back up. I may have to post some pictures of this trap.
10. Tinleigh has started biting, with her two teeth. It comes out of no where and it’s very intense with screaming. Tonight she attacked Gage’s toes for no reason. It is comical to watch her frantically try to clamp down on something while she shakes her little fists and screams. Oh my we are in for it with her. Thankfully Charlie giggles at her and Gage just calls for my help. I don’t have to worry about them trying to take action on her. I’ve got two sweet boys.
I think that’s it. Oh I do have one more but I’m keeping it a secret until it arrives.
Okay one more thing, I stole a pinterest idea – what do you think?
You take your picture with them starting on their first birthday and do it every year. I was only going to do it with Tinleigh but thought why not do it with the boys too. They may like to look back on the pictures when they get older. I’ll just continue to do all 3 on Tinleigh’s birthday every year.