EPIC FAIL

From Bad to Worse

Monday, May 26, 2014

Just when we thought it couldn't get much worse, of course it did. 

We made it through Sunday with little drama - a friendly RT stopped over to listen to Cecilia and confirmed that yes she was still wheezy.  Cecilia was scheduled to see Dr. Haigh on the upcoming Wednesday, so we were hoping she could make it until then - but we were not holding our breath.  

Monday, Cecilia was still having a hard time with her breathing and we were religiously giving her nebulizer treatments to help loosen up her airways.  Throughout all of this Cecilia was still coughing and looking just miserable.  What tipped the scales was her G-Tube.

As you know, Cecilia's G-Tube has been an ongoing source of trouble.  The first three attempts all failed - This was with a device called an AMT.  This is the device that is best suited for Cecilia's size and needs, however the balloons kept popping.  Following the third failure, the doctors decided to try a new model called a Mic-key.  The Mic-key seemed to be working well, but it leaked - a lot.  The leakage was explained away as something we would just have to deal with.  

We were told we would need to clean the site three times a day on average.  We could handle that.  The leakage should only be like the sweating on a beverage glass in the summer.  We could handle that.  The problem with the Mic-key is that it is a larger device that protrudes more from the skin - We could handle this also, if the device functioned properly.  

On Monday, we noticed we were having to clean the site more and more due to excessive leakage.  Not only were we leaking formula but there was also "gunk" leaking out.  Poor Cecilia looked like she had a ping pong ball stuffed under her skin - this was not normal.  We called the surgery team at Mayo Rochester and the on-call peds team at Eau Claire.  

Eau Claire could not handle her.  

The Surgery Team at Rochester tried to brush us off as nervous parents.  We sent them a photo and again they ignored us.  Finally when we saw formula erupting from the site and blood we told them that we were not comfortable waiting until Tuesday afternoon for someone to look at Cecilia.  We packed her up and headed out the ED again - this time in Rochester.  

We arrived at the ED in Rochester, after calling the Surgery Team at five minutes out, at 7:40 p.m.  We were placed into an ED exam room at 7:55 p.m. and poor Miss Cecilia was drenched from her G-Tube site and running a 102.7 fever.  Her respiratory infection was getting worse AND her G-Tube was malfunctioning.  At approximately 11 p.m. the decision was made to admit Cecilia and we were up in a room on the Pediatric Floor at about 12:55 a.m. Tuesday morning.

Sick Cecilia back in the hospital

Tuesday, May 27, 2014

Cecilia was scheduled for a GI Study to see if the G-Tube was still functioning before she could be seen by Dr. Ishitani.   The GI Study showed that the tube was still working.  She had a hernia growing from the G-Tube site - it looked like an alien growing out of Cecilia!  Everyone was very positive - That is until they unwrapped the site and Dr. Ishitani was able to view Cecilia for himself.

Dr. Ishitani's face changed very quickly.  He looked up at me and told me Cecilia would more than likely need to have surgery because the hole where the G-Tube was was entirely too big.  Upon examine, he felt like she had lost her abdominal muscles as well.  He would re-examine her the next day.

But we knew what was coming - Cecilia needed surgery - again.

Thursday, May 29, 2014

Dr. Ishitani, Cecilia's guardian angel surgeon, once again opened Cecilia up and performed surgery.  Dr. Ishitani repaired the hernia and painstaking sewed Cecilia's stomach muscles together in an attempt to save the original G-Tube tract (less pain and recovery for Cecilia if it worked rather than having to create a whole new tract).  

Due to the Mic-key being an inappropriate tube for Cecilia based on its size, and the damage caused by it, we all decided it was best for Cecilia to retry the AMT.  Adam and I held our breath waiting for Dr. Ishitani's phone call.

Dr. Ishitani did it again - he helped our baby girl.  We will not let another surgeon near Cecilia.

After surgery, Cecilia was her normal self and tried to extubate herself ~ It is nice to know somethings never change.

Recovery Time

Given all of the complications we have had with G-Tubes, Cecilia will need extra time to recover.  Cecilia's feeding regime would need to be reworked and she would need time to learn to eat again - She went almost a full week without eating.

As it stands, Cecilia is once again a resident of Hotel Mayo and this time we are not going to let our concerns for Cecilia's well being be brushed aside - It is about what is best for Cecilia, not a race to see who can discharge her first.  

We truly feel as if harm was done to Cecilia and that is horrible.  Plus, we do not know the dangers exposed to Zoe and Isabelle.  

Adam and I are incredibly grateful for how far our girls have come, but even we get weak and sad when we think of how far they have had to come.  Sometimes it seems like the battles they must fight just keep mounting, but we know we are blessed because they are here, they are fighting and they are purely wonderful.  With all of this, we do still ask you to please keep our daughters in your thoughts and prayers. 

Thank you.