Eva’s Progress And G-Tube Emergency!

The night before last we didn’t have a nurse and Eva was sick. I was up most of the night suctioning her. The next morning I was so exhausted and felt a lot like I did 2 months ago BN(Before Nurses) ha! We weren’t scheduled to have a nurse last night either but I immediately called our scheduler and asked her to please get us one! She did and I got a good 7 hours of sleep.

 

Today I feel like a normal human being. Not having a nurse while Eva was sick took me back to the “dark days”. Those 6 months were SO HARD and I honestly can not fathom how I survived them. I literally lived off of about 3 hours of broken up sleep a night for 6 months! With each trach baby there has been a period of extreme struggle that I’ve had to get through and knowing that there was a light at the end of the tunnel was the only thing that got me through it. I can officially say I have reached the light at the end of the tunnel! Well, I guess it’s all a matter of perspective…having a baby with a trach is never easy but we’ve gotten past the first hurdle. There will be other “tunnels” during the next year with Eva and the process of getting the trach and g-tube out but the hardest part is over and I SURVIVED!

 

I feel so happy and grateful for where she is and how much she is progressing. She has gone from being on a continuous feed at a rate of 36mls an hour 24 hours a day, just 2 short months ago, to working up to a bolus feed and making great progress at a rate of 120mls an hour for an hour and a half 4 times a day! She eats about an ounce and a half of sweet potatoes 3 times a day! She is making such great progress and I couldn’t be more proud of her.

This was her with her constant companion, the feeding pole, 2 months ago. Now the suction is her only constant companion.

There are always going to be bumps along the road. Little experiences to keep things interesting. This past weekend I got to spend most of the day on Saturday in the ER with Eva. Let me explain…Friday night I was able to make arrangements for Rich and I to go on a date! So exciting and that is a whole separate post. Our nurse, Erica, came early to watch Eva and I got a sitter for the kids. In our rush to get out the door and make it in time for our reservations I didn’t explain to Erica that I no longer wanted the feeding tube to be taped on to Eva but instead I wanted it to just be taken off after her feeding. She taped it on and told me that she had done so when we got home which was fine and not a big deal at all. It was late and I didn’t bother to check how it was taped on, I just went to bed. The next morning Rich let me sleep in and he got up with Eva and the kids. I slept until 10! When I finally got up and went into the living room the kids were surrounding Eva on the floor tickling her tummy. Out of habit I leaned down and felt over her pj’s for her g-tube just to make sure it was closed. This is the shocker…I felt NOTHING! I looked over next to her and on the floor was her feeding tube with the g-tube attached! Rich and I both freaked out and had no idea how long it had been out. They can start to close up pretty quickly so I grabbed the emergency kit and tried to put it back in. When it wouldn’t go in I grabbed a 12 french catheter from the emergency kit and that wouldn’t go in either! Rich called our friend who has a ton of g-tube experience with her two 8 year old boys that have g-tubes and she was here within a couple of minutes. She tried the g-tube, 12 french catheter and a 10 french catheter which thankfully she was able to get in but we still needed to take her in to Primary Children’s to have the g-tube put back in. She was so sweet and drove me and Eva so that Rich could stay with the kids.

My friend, Laura, with Eva.

Our taping of the catheter, haha!

 

We were quickly admitted and in record ER time the doctor was in the room and trying to get the g-tube back in.

 

He was unsuccessful and Eva’s little stoma was getting very sore

They had the surgeon come down as a last resort and this is where I lost it. I’m normally pretty strong when it comes to the crap my kids have had to endure but this time was just too drawn out for me to keep it together. She came in with this iron rod that was about 10 inches long and was rounded on both ends. One end was slightly thicker than the other. She sprayed Eva’s belly with a numbing spray and then immediately shoved the smaller end of the rod in. There was no gentle pressure to try to get it in, she just forced it in and Eva was in so much pain. I was holding her right hand, Laura was holding her left hand and a nurse was holding her legs. The first few minutes I just held her little hand and kissed her on the forehead 10 million times. The surgeon stretched and pulled and then she switched to the thicker end and did more of the same. This went on for about 5 minutes, the whole while Eva was crying and kicking. The surgeon finally stopped and tried to put the g-tube in. It wouldn’t go in. She went back to the rod and repeated the process. When she started up again I just started bawling. I tried so hard not to cry but watching Eva in that much pain for that long was more than I could handle. After a couple more minutes of stretching her stoma with the rod she tried the g-tube again. I’m pretty sure I was praying out loud. It did finally, after a few seconds of pushing and wiggling it, go in! That was a horrible experience for Eva…and me! She is so strong and resilient. After a couple minutes of snuggling, she was back to her happy self and didn’t even need the tylenol that they brought in!

 

All that was left to do was an x-ray with contrast to make sure that the tube was in the right place. When I put her down she started whimpering. She was scared.

I made funny noises to get her to smile.

They wrapped her up like a mermaid.

 

The x-ray.

Her tummy. It was in the right spot, yay!

We went home and she was as good as new. I was so grateful that I had these two on hand. Grateful for a great hospital that sent me home prepared in case this should happen.

Funny thing is, the day before this all happened, I pinned this to one of my boards on Pinterest.

It’s meant for a trach which will undoubtedly happen at some point but I think it is also fitting for this situation. This will be printed and hung in Eva’s room for sure! Another funny thing…after I discovered her g-tube on the floor and tried to get it back in, I was sitting on the floor next to her, a nervous wreck, when all of a sudden she rolled over from her back to her belly! I couldn’t help but laugh that her first time rolling over was in a moment that I was to stressed to enjoy it! She’s a funny one, this girl!