In January I took all 4 kids to see the GI, that was an experience.
We know now what we’re doing with each one for the year.
Charlie: he is currently trialing shrimp. We thought it was going well until he had a reaction at dinner. Not a major one. Itchy bottom lip, itchy fingers and the outside of his throat was itchy. We will try it one more time to see if maybe there was some cross contamination with that bag of shrimp. Charlie will be scoped in March as long as we continue trialing shrimp. Next trial will be eggs, as in scrambled. He already passed eggs baked in things. After that he’s pretty much done. There isn’t anything else on his do not eat list that he doesn’t have and Ige reaction to. We will also be keeping a close eye during scopes as to what else is going on in Charlie’s esophagus.
Gage: He will continue food trials. He hasn’t grown much this past year and GI is concerned a bit about that. So we’re going to give him until June in hopes he’ll have a growth spurt. If he hasn’t grown much more then GI wants to look at his growth hormones and make sure everything is in check. His feet just grew a ton so I’m thinking he’s about to shoot up a few inches soon.
Tinleigh: Since Tinleigh’s last horrific scope we are going to let her go at her own pace. The doctor had a sweet talk with her and reassured her that everything will be fine. She told her that when SHE decides she wants to be scoped so she can move forward trying new foods then we will. Tinleigh is currently trialing black beans and it seems to be going okay.
Layon: She is such a picky little eater and some days won’t eat hardly anything. GI wants me to just treat her as a picky eater for the next 6 months. Keep introducing foods over and over and over. Do not let her graze and sit her at the table 5-6 times a day to eat. If she’s not eating in 6 months we may scope her again. Her favorite food right now is ice chips. She chews things then spits it out. It’s frustrating to have a “normal” toddler. Of course in the back of my mind I worry she has it. However, I have to try and stay positive and believe that she doesn’t.
Food allergies are no joke.
Here’s an example.
Tinleigh is anaphylactic to dairy. You might remember our Halloween episode. I have a tablet with a keyboard I let the kids play on. Yesterday Charlie got a few drops of milk on the keyboard. I thought i had cleaned it off well. This morning Tinleigh had the tablet. She announces to me her tongue is itchy. I was confused for a moment as to why it would be because she hadn’t eaten anything by mouth yet this morning. Then I realized she had touched the computer then put her hand in her mouth. Her whole mouth was breaking out. Her dairy allergy is very real.
If your family is allergy free you might not understand how careful allergic people have to really be. If there’s a child in school that’s allergic to nuts and the class is asked to wipe their hands after eating, this is a great example of why. Gage’s nut allergy is so bad if he touches someone that has eaten a nut he would go into asthmatic symptoms and require a breathing treatment.
Please try and understand how scary our big world of food can be to someone that could die from coming in contact with a food normal people would never blink an eye at.
I can’t believe Tinleigh has had her tube for one year.
It has been rough, I’m not going to lie. Tinleigh is a grazer and loves to eat.
We have found that we can curb her cravings by grinding up ice in the blender and letting her eat “snow”
Like Gage she’s sick of all the sugary candy she’s allowed to eat.
I don’t think she really understands what it means to be full or nauseous. Half way through a feed she’ll complain she’s going to puke so I’ll unhook her then she turns around and says she wants to eat. If she does do a full book bag then she’ll say she wants to eat so I’ll get her something and she’ll take a nibble then be done. So I guess we have to work on explaining those tummy feelings she’s feeling and help her understand what her tummy is really telling her.
She is now 3 and she understands allergies. She can explain to you that she can’t eat chocolate or she will need an epi pen but Gage’s chocolate won’t make her sick. Although she’s not actually allowed to eat Gage’s chocolate at this point.
She will also explain to you that when she’s 8 she won’t have her button anymore and she can eat all foods. I don’t know where she got this idea but she will go on and on about it. I hope it comes true.
She currently has 2 foods she can eat, blueberries and olives.
The variety of blueberries isn’t big. You can have fresh, frozen or dried.
She failed rice and green beans big time.
We took a 6 month break from scopes this year due to our move and insurance, that’s why she didn’t have the chance to add more.
She’s spunky as ever, happy and very healthy.
We learned she carries the strep virus around her button which has caused some problems. When it flares up it causes her pain and always one or more of us end up with strep throat.
When she got her button I think we went through 3 or 4 rounds of strep and then this fall we have had it twice.
She’s a typical 3 year old that can do everything your three year old can do.
She might be a little tougher than your 3 year old though.
I pray for Tinliegh to get to add a lot more foods over this next year.
This tube hasn’t slowed her down one bit and has been the best thing for her growth. If I remember correctly she’s gained 10 pounds and grown around 4 inches! Not to mention the CHEEKS!
I love you fancy pants.
I want to start this post with a little comparison picture. Tinleigh got her feeding tube in January, three months ago, and has been elemental since then. Look at the cheeks on this girl! She’s finally getting the nutrition she needs. The day of her tube surgery she weighed in at 25 pounds. She was scoped this week and weighed in at 30 pounds. We definitely made the right decision.
Our initial plan after the kids being scoped in December was to wait until June to scope them again. We needed a break. Well that didn’t happen. Gage started having some reactions to the foods he was trialing and Tinleigh was BEGGING us to eat. Since it had been three months since her tube was placed it was okay now to go ahead and scope her. Same with Gage, we typically trial foods for three months then scope.
Gage was trialing cherries, tomatoes, pork and corn syrup. The cherries didn’t seem to be an issue. The pork we thought he was just truly allergic to and we were hoping it wasn’t effecting his esophagus. Some days he could eat pork with no problem. Other days he would cough, get itchy ears and throat. Tomatoes were starting to cause him to cough while eating them.
Typical scope day procedures. The kids were applauded for their good behavior and co-operation with everything. The doctor, anesthesiologist and I joked in the procedure room as Gage was being knocked out if we practice scope day at home because they do so well. Sadly, we’ve just done it so many times it’s just another day to them.
Tinleigh was first and she came out with the good results. I was fearful of what her results would show because she had eaten a few rice cakes and black olives in the weeks prior to her scope.
She showed no eosinophils in her biopsies so in a way she sort of passed rice and black olives.
Moving forward I fed her rice everyday for a week and have since moved onto green beans. In another week we will try blueberries. She will be scoped again in three months to see how things are going in there.
Next was Gage’s turn. Unfortunately his scope wasn’t so good.
As you can see in the first two pictures there are some bumps and lines, that’s bad. The esophagus should look smooth like the back of your hand. His biopsies showed greater than 40 eosinophils in the upper, mid and distal (lower) esophagus. Nathan and I were both very sad for him. This means we have to remove pork and tomatoes from his diet. We knew from seeing reactions while eating those two things we had to remove them. I’m still sketchy on the corn syrup but that’s mainly in candy and he’s not eating a ton of candy so we’ll leave it in and pray his next scope in 6 weeks is clear.
I had to have a talk with Gage after we got the results to let him know how things were and break the news about pork and tomatoes. I sat him on my lap and we talked about what the doctor told me and I showed him his esophagus pictures. He then asked if he’s allowed to trial corn. I got a little teary eyed and explained we first have to take away the pork and tomatoes then we have to let his esophagus heal for 6 weeks. We’ll re-scope him to make sure he’s all better THEN we get to possibly try corn. I sort of reviewed with him how crappy the pork and tomatoes make him feel to help him be okay with getting rid of them. He understood. He wasn’t thrilled that we have to wait but he never threw a fit or cried. I then felt I needed to talk about Tinleigh’s results with him. Explaining that she had a good scope and will get to add foods this time. I reminded him of how exciting it was when he had his first clear scope after getting his button and getting to start foods. We agreed to be happy for Tinleigh and celebrate her good scope. Down the road I can see how this is going to make things extra hard. One having a good scope and the other a bad one. I need to make sure I cover all feelings and emotions now with them so there’s no jealousy or acting out in the future. EoE is not fair to begin with, throwing crappy results on top of that makes it worse. Especially if your sibling has good results.
We’re home and have to get back to it. I needed to get Tinleigh adjusted and to her new normal. That morning I was up at 7am to hook up Gage in bed. Then off to the shower. I packed lunches and got the boys all set for school as usual. Tinleigh still slept. Mom ran the boys to school for me that morning while I stayed at home and hooked Tinleigh up for her first morning feed. Our issue with the day was going to be the feeding tube pump. We only had one. So I sent Gage to school with his feeding tube book bag and formula bag all ready. Once Tinleigh was done mom was back and I had to leave for my monthly ultra sound to check on baby’s growth. Before my appointment though I had to run the pump to the school so Gage could eat lunch.
Mom stayed home with Tinleigh and they played all morning. She played pretty low-key. She was able to get up and move around but was very cautious. She wouldn’t bend over to pick anything up. Stayed very straight. So they did stickers, tea parties and played on my tablet.
I returned from my appointment and had to run right to the school to get Gage’s pump for Tinleigh’s next feed. Luckily while I was gone I had a call from the home health letting me know we would get a delivery of her pump and back pack that evening.
She did pretty well with her feeds once she was hooked up. The anticipation of the tube hurting made getting hooked up and unhooked hard. I hated playing tough mommy but she had to do it. When Gage was home from school he was right by her side coaching her through it or trying to help distract her. What an awesome big brother he is. I’ve never see the two of them interact like that.
We did have a puke incident. She had been drinking water though before a feed. I think we just stuffed her.
She went to the pantry a few times asking for food. Not because she was hungry, but because it’s habit. I would ask what she wanted. She would point to something and I would just tell her she can’t have it because it would make her puke. She very much understands what it means to puke. Then I would offer her a pixi stick, fun dip or sucker. She would pick one and be happy with it.
The big event of the evening was the back pack arriving! It was so adorable and tiny. Just her size. It did make me a little sad but I had to accept it. Tinleigh thought it was just wonderful. “Just like Gage” she yelled in her own Tinleigh language. She wanted it right on. So we put all of her stuff in it and got her going. I highly suggest getting a tiny back pack so your toddler can run free!
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.
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.
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.
I’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.
Please pray for Tinleigh’s surgery to go well with a smooth recovery.