Friday, April 30, 2010

Green Goulash

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Oh me, oh my.

Yesterday did not even come close in comparison to the number of need to take a deep breath moments of today!

I casually mentioned last night that I was going to try to do some bolus feeds into Makenzie's stomach today. Yeah well casual turned into a real adventure.

Last night I held half of Makenzie's usual night feeds in preparation for our attempt at G tube feeds in the morning. I figured if it didn't go well I would just give what was missed during the day today. I also gave her some extra water to ensure she didn't get dehydrated.

This morning when we got up I fixed Makenzie some breakfast. She is not a big morning eater so I also blended up some food in our wonderful borrowed Vita Mix blender. Thanks Lyn so much!

I sat Makenzie down and fed her what she would eat by mouth, When she was done I attached a bolus tube into the G port of her GJ button and started pushing in the green goulash that I had fixed.

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Just a small side note.... blended rice, apple juice, blueberries, spinach, peanut butter, and olive oil does not look or small very appetizing....I'm just saying!

Makenzie did fabulous! I stopped a 1 ounce in about 5 minutes. This doesn't sound like a whole lot but it is for Makenzie. There was no gag or puke. Just a lot of smiles and giggling!

I tried to take the tube out of her button but could not get it while she was in her chair so I put on a video ran up to get dressed and grabbed her clothes. The time was ticking and we needed to walk out the door for therapy in less then 20 mins. I walked into the room to Makenzie looking at me with the hugest smile. I asked her if she was ready to get out and the smile got bigger. 1,2,3 lift.... POP!!! CRAP! CRAP! CRAP! I forgot about the tube!

I lifted up her shirt to assess the damage and realized immediately that the front of her G port was gone. CRAP, CRAP, CRAP! The button was useless. The only way to fix it would be a trip to the hospital.

Then there was that pause, the cuss words, the deep breath in, and repeat about 10 times! LOL! I wanted to try to feed Makenzie through her tummy but not without the safety and comfort of her J tube... not yet.

I composed myself and felt a quiet, gentle tugging at my heart. I was reminded of some of the events that preceded all of this happening.

1. I have been thinking about trying this for at least 6 months but never had the guts.

2. I had asked Makenzie's feeding therapist if I could borrow her super top of the line blender so I could try blending different stuff for Makenzie to eat. She had just received the blend back from another family she had lent it to just that morning and was getting ready to take it out of her car when I called. hmmmmm.. We also talked about a blended diet and I decided I was going to try it.

3. I researched nutritional guidelines last night and talked in depth with a friend who feeds her son blended food about what has worked for her.

4. I went to the store and bought a ton of food to blend.

5. Most importantly... before I started to push the food this morning I laid my hands on Makenzie and prayed giving the feeding issues to Him. Whether it went well or not it was His. Then her tube comes out. Hmmmmmmm


I called IR and they told me from their standpoint it wasn't a big deal if I pulled the tube. Putting it back in would not be a problem. The of course told me to call GI which I did and could not get a hold of Makenzie's nurse and the triage nurse was not much help.

I really didn't need their input anyways because I was going to do what I wanted anyways.... LOL!! Not sure why I am surprised that all of my kids are as stubborn as they are! hehehe

So I pulled the tube. Other then a trip to the ER we are out of luck getting it back in until Monday. I took a step of Faith. Peace and fear all at the same time. This has NEVER gone well. NEVER.

Below is a video I made changing while Makenzie's tube this morning. Many people have asked me to explain this type of tube and I thought this would be very informational on both types of tubes. It is not the greatest video but I tried!

WARNING....Some may find video of changing a feeding tube graffic...WARNING

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Makenzie did amazing. I was able to get about 16 oz into her today. We did have one small puke but it started with Makenzie coughing on her spit. Not sure it would have happened otherwise. Makenzie had a BM and has had her medicine and over 8 oz of water through her tube so far since she went to bed with out any issues! I am in awe of God's power!

Who knows if tomorrow will gp better or worse but I am asking that you pray. Pray for no belly aches, no vomit, and better volume tolerance.

I am emotionally exhausted. I trust in God's leading but I am still human. I spent the entire day on and off squeezing a syringe with green goulash in it praying with each squeeze that the food would stay in my precious daughters stomach. That my friends is exhausting but it was oh so worth it! Another glimpse of God... priceless!

Believe...Prayer Works!


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