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.

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

Home

That evening the Gage met us in the garage. He was so excited to see Tinleigh and have her home.  He immediately wanted to see her button. I told him we needed to get her hooked up very soon because it was time. As Tinleigh and I made our way into the family room Gage took off. After a few minutes I went up to the kitchen to get her formula ready. Gage was getting things ready for her. He had gotten a new formula bag out and had it hooked up to his pump. He was filling the little water bottles with distilled water so we could flush her when we were done. He also had the pitcher of formula sitting on the counter. I can’t imagine how he felt. He was so happy to help out. Shortly after he got his button he would ask us when everyone else was going to get a button. His little dream came true.

So we sat Tinleigh down on the couch and proceeded to try to hook her up. Of course she was scared it was going to hurt and didn’t want anyone touching her. Gage was right by her side trying to distract her, telling her it doesn’t hurt and that she needs the food in her belly. It was so sweet. Finally the two of them have a connection. One of us sat with Tinleigh during her feed and when she was done Gage was right there to help flush out her extension tube.

I gave her a bath after her feed. One thing to know about your new tubie is that they can get it wet but they can not submerge it under water for at least two weeks. She played for quite a while in the tub. I bet it made her feel like a million bucks.

That night I laid her down at her usual 7:30 bedtime. She slept so soundly the entire night. She didn’t wake up until after 9am the next day. Poor thing was exhausted. She had not had her full daily calories by bedtime, but we assumed her tummy had shrunk and didn’t want to push it. I also was not about to hook her up over night she needed some good sleep.

I was glad we went ahead and came home instead of staying one more night.  DSCN3976

January 21, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

Day two at the hospital

Tinleigh and I slept in until after 9 on Wednesday. Starting around 6am though I had to keep shoeing doctors and attendees out of the room because I knew she needed her sleep. Finally when I did allow a group in I shook the lead doctors hand and Tinleigh shook everyone’s hand as well. I knew we were going to have a good day. She was being friendly. She even let me get a picture of her belly.

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I said say cheese! She said no.

Mom arrived a short time later. I was able to change my clothes and brush my teeth. I touched up my make-up. Tinleigh put some on as well.

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A girls gotta look her best.
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The little guy next to us had gone to the playroom and was gone all morning. I sort of felt relieved I didn’t have to worry about how loud we were being after our late night. I did apologize. The mom was so understanding and told me had we been there the night before we would have heard him yelling the same way she had been.

Finally our GI doctor came in. She informed me that as long as Tinleigh wasn’t in a great amount of pain we could go home today. She just had to be able to tolerate two feeds of formula through her tube. I took the deal! So our plan was to hook her up now, then again around one. We also had to discuss our plan of action for the next few months. Funny thing is a few short weeks after I found out about our little #4 surprise our GI found out the same thing. So we’re due with in weeks of each other. That puts us close to what would be Tinleigh’s first three month scope on elemental only. We worked things out and have a plan, my mind is at ease. We will scope Tinleigh in three months time only if she’s begging for food. If she’s content how she is then we’ll push it off for 6 months. That is around the time we will be scoping Gage for his new food trials.

Tinleigh did awesome with the first feed. She was a little groggy. When she had woke up she was complaining her belly hurt so we did one more dose of morphine. She just wanted grandma to hold her. I ended up running down to grab us some lunch while she was happy in grandma’s lap. When I got back Tinleigh was asleep in her bed. Mom said she wanted to get back in her bed. So she laid her down and she fell right to sleep. She was still sound asleep when it was time to hook her up again. We decided it was best for her to rest rather than to worry about getting out of there asap. Tinleigh slept and slept. To the point where it was getting to cut off time of mom having to leave to go get the boys from school. So I made a few quick phone calls and was able to have a friend get the boys so mom could stay with us and we could leave when Tinleigh was ready.

She finally woke up and we got her going. She was very leery of us touching her button. I’m sure it was very tender. We assured her though it was ok and I was ever so careful. Luckily I didn’t have the shakes like I did when Gage got his button.

The number one thing I had already started getting lined up was her home care delivery. Gage gets a shipment of supplies monthly. This would include his formula, formula bags and extensions. Before we even had surgery I had already spoke with someone in our GI office about the supplies I wanted for Tinleigh. I told them the size bags, brand of pump and the special little book bag I wanted for her. So when we got to our room the day before I immediately began finding out where they were with her delivery and if things were in place. They had the call into our home health delivery company but things weren’t 100% lined up yet. So even though Tinleigh had finished her second feeding we weren’t cleared to leave. I assured them I had supplies at home and she could share Gage’s pump. They were fine with that. They wanted to make sure though she would get her delivery the next day. So it took about another hour before we got the final ok to go home.

In the car I quickly realized Tinleigh’s seat buckle hit exactly where her button was. So I had to recline her seat a few notches so that she wouldn’t be sitting straight up and risk pushing on the button. I was so certain I would hit a bump and she would be screaming in pain. Luckily we made it home safe and sound.

I would say our biggest issue was keeping Tinleigh occupied. Some of the things I took with us included a paper doll book with stickers to dress the dolls in. Sheets of stickers I purchased at the dollar store. My tablet. My phone. She has a Dora hard plastic backpack that we packed with all her little animals she plays with. I even took some plain paper and construction paper with crayons. Luckily the tv system they had there allowed us to also rent movies. That helped tons!

Then we were home…to be continued.

January 20, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , | 2 Comments

Round two

Back we went to the hospital the next Tuesday morning. Nathan had an important meeting at work he could not miss so mom went with me this time.

We pulled into the parking garage and Tinleigh said “No”. She knew what was going on. We got her up to peds surgery and tried to get her to play. She was so hungry and thirsty this morning. She was not a happy camper. Luckily it wasn’t long before the nurse called us back. Tinleigh was hesitant to go back this morning. We finally got her to willingly walk back. She did however refuse to put on the hospital jammies. DSCN3960She made her mask just like she does every time. Then we tried to keep her occupied playing with cars and a little train set. She was begging for something to eat and drink. We tried our best to keep her mind off of food and drink and tryed to get her to focus on other things. Finally I told her the doctor would bring her a drink, oral versed. From that point on every time a nurse would walk by she would yell “Doctor drink! Doctor drink!”

Finally she got her oral versed, I signed consent forms and spoke with the doctors that would be in her operating room. DSCN3961She was relaxed and ready to go. I had slipped on her jammies with out her even really noticing what I was doing. She had her tubie buddy with her that she had received the week before. The attending anesthesiologist came and got her and off they went. Huge deep breath. Here we go again.

Mom and I made our way to the waiting room and settled in. I then decided we better eat because it was going to be a long afternoon. Once again I sulked down to the cafeteria wondering if they would be able to proceed with the operation this time.

I made it back to the waiting room with our food and there was no sign of the doctors so I assumed things were going as planned. A few minutes later Nathan arrived. I’m not quite sure what time it was but I got a call from anesthesia that they were done and reversing her meds to wake her back up. Five minutes after that our GI and surgeon met us in the consultation room. The surgeon explained everything went great. He didn’t need to make the extra incision he thought he was going to have to make. He was able to do everything through her belly button. We discussed her pain levels and the plan for feeding her while we were in the hospital.

It was over. Now we just needed to get to go see her. Because it takes a little more to knock her out, it takes her a little longer to wake her up. Mom had to leave to be able to be back in town to get the boys from school so she left before we got to go see Tinleigh. It took Tinleigh quite a while to wake up but we didn’t mind. We knew there was a great chance she wasn’t going to be a happy camper.

We finally got her to come around. She woke up calm. We were shocked. She looked at the splint with the IV on her hand and didn’t even make a fuss over it. She did sort of grab at her belly a few times but because it hurt. She didn’t realize there was anything in there. I think we got up to her room around 3 and our plan was to hook her up for the first time around 6. It wasn’t long before she was sitting up and eating ice. Still quite groggy from the morphine but she wasn’t about to let that stuff make her sleepy! DSCN3963So she ate ice and played on my tablet for a while and was content.DSCN3962I was just waiting for this explosion of the little Tinleigh I knew.

Around 6 we showed her, her button and explained we were going to hook her up. Just like Gage. She repeated things back to us and understood she had a button like Gage. The first time we hooked her up it was with pedialyte. It was only a few ml’s into it and she said puke puke. The problem was she had been drinking so much pop and eating so much ice her little tummy was already full. So I just stopped the machine and unhooked her. I wasn’t going to stuff her and make her puke. So I informed the nurse of what I had done and sort of told her how it was going to go. DSCN3964We waited a few hours then we hooked her up again. This time at a very slow rate and we kept her on it over night. When I say slow I mean like she was getting one ounce an hour.

It was getting late and she was hurting again so we gave her some morphine in hopes it would also knock her out.DSCN3965

Big negative. Not our little fighter. In this picture she appears to be praying. Instead she actually has both thumbs in her mouth and is dozing off. Refuses to lay back and go to sleep. It was 10pm at this point. She was no about to give in. Before this picture happened she did fall asleep sitting up with her index finger half way up her nose. We finally laid her back and she slept.  Then an hour later she woke up! Ready to go again. DSCN3967She was quite cranky and loud. A nurse brought in a doctors play bag full of things. That occupied her for quite a while. DSCN3968Then her and Nathan had a fun time banging on the plastic roof on her crib.

Nathan finally had to leave so he could get up for work the next day. Once he left she wanted me to hold her. I turned the tv off along with the lights and I held her in the chair, barely. Because of my stomach she kept sliding off. By 1am she was asleep. For the next two hours I tried twice to lay her in her own bed. She would wake up and yell. So I knew that wasn’t going to happen. Problem was I couldn’t fall asleep holding her because I wasn’t sure she would stay on my lap. Plus we had IV cords and her belly was hooked up. I didn’t want to risk something coming out. Finally around 3am a nurse came in to check on us and I asked him to help me get her into her bed. With success we laid her down and she stayed asleep. I tip-toed down the hall and used the restroom while he pulled my chair bed out and made it up for me.

The worst part of all of this is that we had a shared room. We had the bed closest to the door and I wasn’t allowed to use the bathroom in the room because it was for the other half. So every time I had to pee I had to make sure someone was in the room with Tinleigh or make sure she was asleep. The other bad part was that we were the bad neighbor. I didn’t hear one peep out of the little guy next to us the entire time we were there. I literally heard him call out to his mommy once in the middle of the night. Tinleigh was the loud screaming bad roommate. Lastly, once we were in the room I started chugging water because I hadn’t drank much all day and my ankles were swelling. So during the night I was using the restroom constantly. Those nurses probably had a bet going on how many times I would go. DSCN3974Once Tinleigh was in her bed she pretty much didn’t move the rest of the night. Even during her status checks she didn’t wake up. I slept some. I kept waking to check and make sure she hadn’t moved because I didn’t want that cord in her belly pulling out. Plus every one knows how hard a hospital guest bed is.

Overall the day went better than I expected. She was mellow until she started fighting sleep. I believe that because Gage has a button her getting one was just normal to her.

She accepted it.

To be continued…

January 19, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

Life Changing

Tomorrow is Tinleigh’s big life changing day. It is life changing. We have no idea how long she will need this feeding tube, it could be for life. Though we pray it’s for a short few years.

DSCN3871I’ve been on support boards and read the question many times, “My little one is getting a tube tomorrow, what should I expect?”. I am going to do my best to record every detail we go through. She is at a horrible age, two. She wants to do everything herself and is quite feisty.  Absolutely hates to have an IV and screams after procedures until we take it out. We know a little bit of what to expect having gone through this with Gage. However, he was 4 and a very mellow little guy. We know it’s very painful for them, I dread that for her.

DSCN3784Our hospital stay should only be until Saturday at the latest. Today I’m packing a few toys and things to hopefully keep her occupied. What do you pack for a two year old that will be laying flat?

DSCN3779If she rests a lot at the hospital I’ll get my posts started then. If you don’t see anything for a week then assume it’s not going so well.

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Please pray for Tinleigh’s surgery to go well with a smooth recovery.

January 8, 2014 Posted by | Tinleigh's allergies | , , , | 8 Comments

   

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