The More Rare Something Is,
The More Likely It Will Happen
If I ever questioned how strong our little girl is, the last two weeks have taught me better. Cecilia is one of the toughest baby girls I will ever know - Each day she teaches her father and I about patience, determination, and happiness. As much as we pray for her to not remember all of these turbulent times, we pray just as much for her to remember them as a testament of how strong she is, how hard she has fought, and how, no matter what the odds, she has never given up.
Placing a G-Tube
After much thought and discussion, Adam and I finally agreed to allow the doctors to place a gastrostomy tube (also called a G-Tube) into Cecilia. A G-Tube is a tube that is inserted directly into the abdomen to deliver food directly into the stomach. Cecilia had previously had an NG-Tube (a tube that went up her nose and then down into the stomach).
Cecilia had done such a wonderful job eating and tolerating her feeds that she could finally come off of TPN (her IV nutrition) completely, which meant it was time to remove her Hickman (central) line. Instead of having Cecilia endure multiple procedures, we agreed to piggy back (combining multiple surgeries) her Hickman removal with placement of her G-Tube. The doctors spent quite a bit of time telling us a G-Tube was extremely safe and that the failure rate of a G-Tube is minuscule.
A G-Tube would be easier for everyone when Cecilia is able to come home. Ideally she won't need any sort of feeding assistance, however, if she does need assistance and we decided later to place a G-Tube, the hospital would get to keep her for 4-6 weeks after placement. Adam and I decided we were more comfortable with the thought of a G-Tube versus an NG-Tube at home. Additionally, if Mayo ever decides to release Cecilia and she did need the G-Tube and we hadn't placed it, we would have to wait even longer for her.
We agreed to place the G-Tube, but only if the fabulous Dr. Ishitani was her surgeon. Dr. Ishitani knows Cecilia inside and out, literally. Based on Cecilia's history, Dr. Ishitani felt it safest to place the G-Tube in an open procedure - yes this means another scar for Cecilia (but boys dig scars, right?).
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| Post Op Cecilia |
On April 22, 2014, Cecilia once again was put under anesthesia, and under the protective hands of Dr. Ishitani, her Hickman line was removed and her first G-Tube placed.
Complications
Cecilia did fabulous during surgery. Unfortunately, she had some post-operative complications, difficulties coming off the ventilator and ended up in the PICU again. Approximately 30 minutes after arriving in the PICU, Cecilia decided she was done with the vent and helped to extubate herself. Typical Cecilia.
Cecilia spent the night in the PICU and went back to her room the next day. She was very happy to be back in her room with all of her toys.
G-Tubes 2, 3 and 4
Remember when I told you G-Tubes are safe? That G-Tubes have an incredibly small fail rate? Well, forget all of that because in our case, the fail rate is incredibly high.
Cecilia's first G-Tube lasted 8 days. On Wednesday, April 30, Cecilia's first G-Tube failed. It is our understanding that two portions of the tube failed - the actual tube and the balloon which holds the G-Tube in place. We had to jump through Mayo hoops and people practicing CYA rather than protecting Cecilia. It was an incredibly frustrating process. Especially when people kept saying to us "You must understand ... It is incredibly rare for these to fail ... I have never seen this happen ... "
Finally Adam told them to stop because in our situation the failure rate was 100% and we just wanted to know what they were going to do to ensure Cecilia was ok. After getting no where with people on the phone, we finally convinced them to contact Dr. Ishitani who took Cecilia into radiology and replaced her G-Tube. Dr. Ishitani called to say she was better and he had fixed her - again.
Adam and I took a breath - I mean G-Tubes don't fail, right? We could relax.
WRONG!!
On Friday, May 2, less than 48 hours later, Cecilia's G-Tube failed - again. This time only the balloon failed but it still failed. Our poor baby girl was going to need yet another G-Tube. Thankfully this time they were able to replace the G-Tube bedside and she could resume her feeds.
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| I'm a big girl! |
If you are thinking we could breath at this point, hate to break it to you, but no.
Saturday, May 3, less than 24 hours later, Cecilia's third G-Tube failed. Experienced nurses were dumbfounded, trying to explain to us that in their 10, 14, 20 years of nursing experience, they had never seen a single G-Tube failure let alone three on the same baby!!
Adam and I were extremely fed up. No one had a reason why the tubes were failing. But finally, they decided to try a different brand and manufacturer. We are now on day 5 of her 4th G-Tube and just holding our breath that this one lasts. You should not go through four G-Tubes in four months let alone in under two weeks!!
Progress
Despite the G-Tube fiasco, Cecilia remains an incredibly happy baby. She is a social butterfly, wrapping nurses and doctors around her little fingers. She absolutely loves to go on walks, exploring the hallways, saying hello to everyone who passes her. She is growing and learning to sit up on her own. She is doing much better with her oral feeds and like to hold her own bottle sometimes.
We are hoping and praying that Cecilia can join us at home one day soon but as of right now we still do not have an EHD (estimated home date).
Thank you for your continued love and support!
Adam & daneille
