LIVING

With EoE, Allergies, Asthma and a G-Tube

Scopes x4

We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.

The night before we made the 3 hour drive to the hotel. We set up a formula bar.camera 081Fed everyone a snack and attempted to settle in for the night. IMG_0724Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.

We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.

Here’s as far as I got

4:30am up and at em
4:37 i put my makeup on by the light of the microwavecamera 090
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kidscamera 099
6:20 got called back to our roomphoto 2
7:15 Layton got loopy medscamera 098
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back

After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. photo 5I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. photo 4Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. photo 3We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. photo 1(1)Finally Charlie came out. We propped him up in a chair as well.camera 171They boys sat drinking sprite and watching tv.  No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.

Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. IMG_0737Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction. camera 039

Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July. photo 1

Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.

For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.

We’re very happy with how things are going for the kids.  A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.

Advertisements

May 30, 2015 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Our Big Day

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.

Strike two.

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.

Now don’t forget to click on the Circle of Moms button and vote for me!

October 13, 2012 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING | , , , , , , | 2 Comments

   

%d bloggers like this: