March tube change out

Every three months Jillian goes in for a tube change out. Most button style feeding tubes last about 3 months. After 3 months they are more prone to have issues.
Jillian has all of her tubes changed in interventional radiology (IR) because her tube enters in her stomach and goes down into her intestines. To make sure it is in the correct place there is a line on the tube that they can see in x-ray.
I get to go in for tube changes. To go in you have to wear a paper suit and special slippers over your shoes and a hair net. It is so fashionable. They you have to put on a led apron.
We take Jillian in and lay her down on a able. They wrap her legs so she can not move. Normally this is when she becomes unhappy however yesterday we were talking about Mickey mouse so she was distracted.
They then place a guide wire into her tube. They pull the old tube out and put the new tube in over the guide wire. Then they inflate the balloon that holds the tube in place. Then they take the guide wire out. Next they put liquid in each port of the tube to make sure it is placed correctly. After that we put her belt back on and we are on our way.
Normally this is done while Jillian screams at the top of her lungs. This time was different. This time she whimpered once. That was it. We talked about TV shows Jillian likes. She tried pushing buttons on the x-ray machine. She tried to help them. She pulled the tape off of her pad (her pad was off for the tube change). She did AMAZING! I am SO proud of her. Normally tube change outs break my heart watching her cry, but this time everyone was really relaxed since she happily laid on the table.
She did bleed this time during the change. She normally does not bleed with tube change outs however she currently has some stomach bleeding going on so there is already an irritation in there somewhere. They used gaze and they were able to get the bleed to stop.
At the end of the tube change the radiologist looked at me and said "they did tell you before this that this would be the last time she can have a tube like this?" Well with that question my head went a million different directions. Did they mean she could no longer have a GJ tube? (If that was the case she would need to have surgery to place a J tube). I told him "no." He said that they will no longer be carrying AMT brand tubes and instead they will be carrying Mic-Key tubes (different bands). They are currently using up the last of the AMT tubes they have. Then I was annoyed (ok annoyed is putting it lightly).

Jillian's AMT G-Jet tube

The AMT G-Jet has worked well for Jillian. We have not had a clogged tube since she switch to this tube. We have not had it become dislodged and her skin growth around the tube looks much better with the G-Jet then it did with her PEG tube. We have a tube brand that works for us. Why mess with something that works. There is enough unknown with Jilli, changing tube brands when we have one that is working is frustrating.
The only issue with have had with the G-Jet is that on Jillian it tends to spin. Spinning of a button can be a problem because if it spins it can cause the tube to coil and become dislodged. To prevent spinning we use Tegaderm to tape her tube down. It works great. I think us taping her tube is part of the reason that we have not had her tube accidentally pulled out (that and her belt).
The AMT G-Jet has silicone pieces that we are able to use to tape her tube down.The new brand of tube she will get next has a few things that I do not like about it. It had no way for us to tape it down. Instead of having a plug for each the g and the j port like the AMT tube, the other brand has a plug that goes over both so to use the j you have to have the g unplugged. This could be problematic (read my blog post from a few days ago about why two plugs are good) There are also several other little things about the other tube that I do not like as well (yes I have touched this other brand's tube myself. I have read about it in the past and heard other parent's opinions about it, this is not an uneducated opinion) I am hopping for the best but we will see. Here is to enjoying her AMT tube for the next 3 months before we have to switch.

After we were done at Children's we headed over to the zoo! Jillian's grandparents get us a zoo membership for Christmas each year. This is a great reward for a little girl after having to do unpleasant things at the hospital. It was BEAUTIFUL outside! (I even wore flip flops) The giraffes at the zoo gave all of the children a reproduction lesson. I have never seen the giraffe building clear out that fast! Jillian was mad because we did not hang out with the giraffes very long... Most of the animals we inside yesterday and the train was not running so we did not spend very long at the zoo but Jilli was happy to see the elephants and monkey.

Then we went over to Brookfield Square mall. In collage I worked at Learning Express in Kenosha. After I worked there they moved the store up to Brookfield. We have been looking for more games for Jillian. She LOVES her Doc memory game and Seek-a-boo but there is only so many times you can play two games over and over (like multiple times a day, lol) We went to the store and looked at games and caught up with my old boss.
Then we went over and picked up Olive Garden to go. My cousin Jake is in the hospital for a two week stay for his lungs. In the car ride from brookfield to tosa Jilli kept saying her tummy hurt and was crying but once we got to the hospital and she got out of her car seat she was better. We met Brent at the hospital and brought Jake food and hung out with him. Rooms are much smaller at Froedtert then at Children's! Jilli kept having gas and pooping. That happens after tube changes because they are moving stuff around in there. We left Jake around 8pm and headed home.

Today little miss woke up wheezing. Not sure if it is from the tube change or the warmer weather. I woke up this morning to her "singing" herself a song. I have no idea what song it was but it was so cute! Once I got her out of her bed she curled up in mommy and daddy's bed and took her neb. We are having a calm morning here!