LIVING

With EoE, Allergies, Asthma and a G-Tube

5%

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. DSCN3949We 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.

We got Tinleigh in her gown. She made her gas mask. DSCN3951

The nurse let her pick out some toys. Of course she picked out the cars. She must have been missing the boys. DSCN3950Then 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.

After we were done talking I quickly inhaled my bagel, can’t forget to feed the baby! As I took my last bite the nurse called us back to be with her.DSCN3952

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.

So I will continue on with our tube story Tuesday.Tinleigh-5286

Advertisements

January 12, 2014 - Posted by | LIVING, Tinleigh's allergies | , , , ,

2 Comments »

  1. Oh Kara….sometimes my heart just breaks for you….but then I see that love/determination on your face and I just know. You are amazing, and although not in the traditional sense, you will all be fine!
    Tracy

    Like

    Comment by Tracy | January 12, 2014 | Reply

  2. She’s in that small percentage that’s truly going to leave their mark in this world. 🙂
    She’s just adorable. I so wish there were no such thing as EE!! But your kiddos are lucky to have a mom that works so hard for them. Keep the posts coming. You are truly inspirational. Best of luck with the next procedure.
    Angie

    Like

    Comment by Angie Bulkley | January 12, 2014 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: