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. 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. A girls gotta look her best. 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.
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. She 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. She 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! So she ate ice and played on my tablet for a while and was content.I 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. We 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.
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. She was quite cranky and loud. A nurse brought in a doctors play bag full of things. That occupied her for quite a while. Then 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. Once 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…
As promised I will begin to walk you through having a feeding tube placed in your toddler.
Let me start with this past Sunday. We let Tinleigh have a cheat week. Foods we knew she wouldn’t have an anaphylactic reaction to. Sunday evening Tinleigh had some lucky charms. Around midnight she woke up, something she never does. We finally got her back into bed and back to sleep with in the hour. Around 5am she woke up and had puked the lucky charms up. Nothing else, just lucky charms. This was a delayed trigger food reaction. She went back to bed about an hour later and was fine the rest of the day. Fast forward to Wednesday evening when she had a banana. Boy did she love that banana. She hasn’t had one in months. The same thing happened that night. She was up around midnight and back in bed with in the hour. Then at 5:30am she puked up banana. This was 12 hours after she ate the banana and had a formula bottle before bed. The only thing that came up was mushy banana. So I changed her bedding and her clothes and we went downstairs to watch Diego. This time was a little different though. She continued to dry heave up her saliva. After about the third time of doing this I was getting nervous she had the flu. She didn’t have a fever though. She was also acting like her little perky self. She never went back to bed, neither did I. Soon it was time to get the boys around for school. Since she wasn’t truly puking but just heaving up her spit I asked Charlie to keep an eye on her while I quick jumped in the shower. Nathan had already left for work. By this point she was doing it about once every half hour. So right after she did it I ran to the shower. As I stepped out of the shower Gage was waking up. He was sopping wet. When I hooked him up at 7am in bed his tube popped open and continued running all over his bed instead of into his belly. Wonderful, more laundry to add to the puke towels. When I came back down from the shower Charlie had Tinleigh on the floor sitting on a blanket, puke protection, with a tray and her foam stickers and paper. Oh he’s just the best!
At 9 I got everyone into the car to go to school. Just as I buckled Tinleigh and placed a towel on her lap she puked. Once again Charlie to the rescue, he ran in and got me another towel for her. Off we went to school. I figured I had 30 minutes we could make it back before she puked again. I took a towel in with me when we dropped them off just in case. Once we were home she wanted pop. Luckily I had some sierra mist. So I gave her 1 tbsp and we went straight to the bath tub. After about 20 minutes she asked for more and hadn’t puked any up so I gave her another tablespoon. We were cutting it close to her cut off time of clear liquids before the procedure. I continued to let her play in the tub for an hour. She sipped on the bath water and had a few more tablespoons of pop. That was the end of the puking. Still no fever. I called the nurse and she said as long as there was no fever we were good to go. Nathan arrived home shortly before lunch and we left for the hospital.
Arrived at the hospital and I was so tired from the morning. Being in my last 10 weeks of pregnancy getting up at 5am isn’t something I can do easily. Tinleigh played in the waiting room and was just fine. You would have never guessed the morning we had. They called her name and she ran right back and jumped on the scales. She knows the drill. We waited and answered questions. They were super busy today. We spoke to the GI doctor who once again explained what was going to happen. She would scope down Tinleigh’s esophagus with a light and camera. Once in her tummy she would shine her light out so the surgeon could see where to make his incision. They were also checking to make sure there were no other organs in between the tummy and wall of the gut. Then we spoke to the surgeon who explained how he would secure the mic-key button. Last was the anesthesiologist who remembered us by name. We should have frequent customer points.
The nurse let her pick out some toys. Of course she picked out the cars. She must have been missing the boys. Then it was time. Nathan went back with her because the anesthesiologist said it’s not safe for me at this point in my pregnancy. So I sat and cried for a while and waited for Nathan to come back out. It took longer than usual but he finally came back out. They couldn’t get the laughing gas to work.
We made our way to the waiting room. I then had to go get something to eat and drink for the baby. I sulked down to the cafeteria where nothing appealed to me. Got us both something to drink then grabbed a bagel and peanut butter. I was about 20 steps from entering back into the waiting room and Nathan called me. He started right in about the doctor and Tinleigh. I was confused and told him I would be right in. As I walked in there he was in the consult room with the GI doctor and surgeon. I was so confused. As the door closed the doctor said Tinleigh is fine. However, we cannot do the procedure today. Tinleigh falls into a small 5% of kids where their tummy sits too high under their ribs. If they would have proceeded to try to put the tube in they ran the risk of nicking her lung and or having the tube rub against her ribs once it was in. They knew to stop, thank goodness. I asked then why did the x-ray show that everything looked fine to proceed. The surgeon explained that the x-ray isn’t always 100%, like in this case. I asked him three times because I was so frustrated we had even done that and it was a useless appointment, just something else Tinleigh had to go through.
So they scheduled her right then for Tuesday of this week in the OR. The surgeon will make in incision low on her abdomen, pull her stomach down to where they need it to be then, put a few stitches in the stomach and the wall to keep it in place. Once that is secured they will put the tube in. All during the same surgery. She will have an extra incision and a bit more pain because of this. I dread it for her.
Tinleigh slept for quite a while this time. She didn’t wake right up as usual. We think she was just catching up on sleep since being up since 5am. If you notice there’s a Popsicle in the wrapper laying above her head. The nurses know to have one ready for her upon waking. They’re an awesome crew. Tinleigh actually woke up very pleasant this time. She saw her IV and didn’t even seem to mind. Enough time had passed that the nurse could take it right out. She ate two popsicles then put on a little fake cry show for us. After that we got her dress and headed home.
We were all exhausted, emotionally and physically. Such a roller coaster of a day.
The day after her procedure I woke Tinleigh up at 9am as usual to take the boys to school. She was acting so tired. I changed her diaper and stood her up to put her coat on. She just laid back down on the floor. I put her boots on her and once again stood her up. Just as I was getting her coat on her she puked. I immediately felt her cheeks to see if she was warm. She wasn’t. But what was running through my head was she was having a reaction to the anesthesia. We have a family history of malignant hypothermia and we have to be very careful. We had only fed her safe foods the evening before so I knew it wasn’t food related. I took the boys to school and called the nurse in the procedure room immediately after dropping them off. Our anesthesiologist happened to be standing right there so she put him on the phone. He explained the anesthesia should be out of her system 4-6 hours after and that he didn’t think it was related. She continued to puke up her saliva for the next few hours as we laid on the couch together. Then all the sudden she jumped up and wanted to play. We slowly introduced liquids and then she wanted food. Still no fever. It was strange. She hasn’t puked since. We’re also not feeding her anymore cheat foods.
So Tinleigh is a rare bird. She’s in a 5% category with her tummy and tube placement. She’s in a small percentage of kids like Gage and their cousin that need tubes. She’s also in another small percentage of kids, like her cousin, that don’t test positive to foods, which makes figuring out her triggers for this disease hard.
Placing an order for a new super tubie t-shirt $11
Donating $25 to receive a tubie friend
Ordering new feeding tube covers $28
Doctor called with the kids results today. Both of the boys passed the fish trial! Gage also passed oranges and black olives. Our next trial with Gage will be cherries, tomatoes and spinach. We’re hoping to throw bacon in there once or twice a week but the doctor is thinking it over. We’ll talk with her next week. Charlie will just stay as he is, off of 13 foods. There really isn’t anything we can add back to his diet that he isn’t truly allergic to. Neither of the boys will be scoped again until June unless there seems to be some issues in their esophagus.
Tinleigh’s scope was bad. Not as bad as Gage’s right before he got his tube, but she should have been a zero with these last changes we made. She had greater than 50 eosinophils in the upper, mid and lower esophagus. She will go in Monday for a GI test to figure out where her stomach lays in her body. The surgeon and GI doctor are trying to line up their schedules and Tinleigh will get her feeding tube in the next few weeks. Pretty crappy way to start out 2014. However, Tinleigh has been miserable. Screaming in the pantry, always hungry. She’s sick of drinking the elemental formula. Hands me back her cup and tells me “no, yucky”. She doesn’t have much food that she can eat, what she can have she doesn’t want. She’s lost a few pounds over the last two months. She is a toddler and she needs nutrition not only for her body to grow but her for brain to develop as well. So even though it totally sucks it’s going to be best for her, just like it was for Gage. Yes, I do know how to handle it and I know what to do for her once she gets the button. It’s still very gut wrenching that we actually have to do it. You never want to see your child go through something like this. So it’s very hard for Nathan and I to accept that this is where we are with her. We’re just past a years time that she was even diagnosed. Gage was four when he got his button and aside from pain we really didn’t have many troubles. Tinleigh is feisty and two. We’re going to buy lots of onsies and one piece outfits in hopes that it will keep her from trying to pull it out. It will be hard. Hopefully since she has seen Gage with his and knows about button patches, hooking up and wearing a book bag around she’ll be a little better with accepting it.
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!
I remember when the allergist first told me about eosinophilic esophagitis. “It’s an allergy disease, you treat it with steroids and then you will gradually get eat regular foods again.” I thought oh that’s not so bad. We’ll get rid of all these allergies and everything will be fine. I then remember going home and finding out more about it. I read about kids with feeding tubes because they were so allergic. I watched videos and cried for those kids. Never did I think that would happen to us.
Tonight we told Gage he’ll be getting a feeding tube. I told my 4 year old he can’t eat food anymore because his body has become so allergic.
My sister-in-law ordered Gage a Tubie. It came today. Just in time for us to tell him before meeting with the surgeon tomorrow.
The dog has a button just like Gage will get.
It honestly ran a chill down my spine when I first saw it. The thought of that sticking out of Gage’s belly. I know he needs it, he needs the nutrition to help him grow big and strong.
We started our talk tonight by just giving Gage the dog. He was so excited. We told him to check the dog out. For the first 5 minutes neither he or Charlie noticed the button. In the meantime Tinleigh was screaming at the dog on the other side of the ottoman. I finally had to tell the boys to check the dog out and find something special about it. Charlie discovered the button first. I explained to them that the dog has eosinophilic esophagitis just like they do. I then went on to explain the dog is allergic to everything, so to get what he needs to grow he gets his “milk” through a tube and it goes into the button. I then went into asking them if they remembered when they were just scoped and told them we the doctor called me with the results. This is when I choked up. I couldn’t get the words to come out of my mouth. I just couldn’t tell him. I looked to Nathan. He was the same as me. Right at that moment Charlie asked where the tube was to go in the button. I jumped right up and went to get it. Wiped my eyes quickly and sucked it up. Returning with the tube we tried to figure out how it worked. I managed to blurt out that Gage and I were going to see the doctor tomorrow and he would tell us how the tube goes in there because Gage was going to get a button just like his dog. Charlie instantly started getting upset and said “Oh I’m sorry Gage.” I said no Charlie it’s ok. It’s going to make Gage’s muscles big and help him grow. Gage grinned. I kept telling Gage that his esophagus just doesn’t like food right now. Charlie keeps trying to interrupt with “oh no I have bad news”. Nathan tried to quiet him as did I. You never know what’s going to come out of Charlie’s mouth. Finally Charlie couldn’t take it anymore. “Guys I’m sorry but this means we can’t wrestle anymore.” I let them know that they wouldn’t be able to wrestle for a while. Gage insisted that meant 3 weeks. I just went with it. Tinleigh is still screaming at the dog and now has a hold of the tube trying to put it on like a necklace. They overall didn’t have too many questions. I felt good. The speech I had planned in my head was nothing that came out of my mouth. What did come out of my mouth worked perfectly and that’s all that mattered.
Gage named his new friend Sarge because he is a police dog. Gage also played the I’m nervous card at bedtime. The typical 5 minutes after we put him to bed he comes out and says why do I have to get a button? I had him come sit on my lap and just said because your body doesn’t like any food right now. He then says “Oh, can I stay up?” He’s a sales man just like his daddy. Nathan almost laughed himself off the couch trying to hold it in. I had to turn on the hard mom face and shew him back to bed.
So tomorrow I get all my questions answered by the surgeon with Gage on my side. I’m sure I’m more nervous than he is. I hope it stays that way though. I don’t want Gage to be scared.
We met with the GI doctor. sigh We’ve come to the conclusion Gage is just a very allergic kid. Since we haven’t found his trigger his body is just overreacting to everything he seems to eat a lot of. That is why he’s showing an allergy now to millet, sorghum and chicken. Gage is also still growing. He recently had another growth spurt and is on the upper side of the growth scale. The combo of those two facts have put us face to face with two choices.
1. We give his diet one more change removing the newly positive foods PLUS dairy.
2. We go ahead and put in a feeding tube.
We have the best GI doctor. She asked me if we wanted to make the decision or if we couldn’t she would do it for us. I expressed that Nathan and I had spoken all week about what we wanted to do with Gage. We knew in the back of our minds what was coming but we never said it to each other. We only spoke about the choices we would make in changing his diet. So I let the doctor know we wanted to give it one more go around before calling it quits. I can’t in my heart just do the tube if I feel like I can try one more change. I have to know I’ve done everything I can for him. Gage’s esophagus is at a point where we start risking him stricturing shut. So our game plan is to change his diet and scope again in 6 weeks. He won’t be completely healed by then but we will be able to tell if there’s improvement at that time. If there is no improvement then it’s time to put the feeding tube in.
So Gage’s new list of do not eat foods are:
beef – along with anything containing gelatin
coconut – tested low but we’ll use it sparingly for baking. I don’t think I would risk letting him drink it daily and his body starting to highly reject it
apple is in the blood test and possibly may get taken out
We are still waiting on the final word from the GI doctor for the blood test we had done. Chicken was a low positive and we didn’t skin prick for rice or oats so those were in the blood test as well. I highly doubt we can add rice in but it would be a huge help.
We’ve made it through the weekend ok. It’s going to be a tough 6 weeks, but hopefully worth it. The big thing in our house is the boys have hot cocoa every morning. It’s basically milk with hershey’s syrup or carnation instant breakfast warmed up in the microwave. They drink it religiously like I drink coffee. So we had a talk why he can’t have it. He told Charlie immediately that it wasn’t fair for him to drink it if he didn’t get to. So I’m now on a panicked search to find him some hot cocoa. There isn’t really a replacement milk we can use. Coconut, occasionally with risk. Goat’s milk we don’t want to risk since he’s so allergic to beef and broke out in hives when he ate deer. We would really have to test him on something like hemp before giving it to him. Charlie and I had a talk and Charlie told me right away he would go hide in the basement to drink his hot cocoa. I laughed a little. He won’t give it up, but he’ll figure out how he can still have it and make everyone happy. So for the last two days he’s drank it in the bathroom.
I attempted pancakes for Gage Sunday morning. By noon I had “donuts” ready. Lot’s of tears and ruined batches of goo but I came out with a winner and they both at them right up! Phew! Keep an eye out for the “I’m allergic to everything donuts”.
I have noticed in just a short 36 hours of being off of dairy that the dark circles that are always around Gage’s eyes are gone. I do hope it correlates to what’s going on inside as well!