perfectly healthy baby who gets trach

Gabriela - posted on 09/07/2015 ( no moms have responded yet )




My baby girl was born perfectly healthy...7 pounds 12 ounces. We had no problems up until she got her first fever at 6 months old. She ended up getting the flu and noticed her breathing sounding bad. I took her to her pediatrician and he did nothing! "Just keep doing home remedies" He said. I ended up taking her to the ER and they treated her with Tamiflu and breathing treatments. She started retracting and her chest was caving in so they admitted her to the ICU the next day they had to put her on the breathingtube and that's where it all began. She ended up getting staph infection in her trachea, she had phenomena, and a UTI. The hospital we went to did not specialize in kids so I knew it was a bad idea going there. When it finally came down to taking the breathingtube out she would fail every time and she was on high flow oxygen for a while. ENT dr came in and would dialate her airway. Finally he said he couldn't do anymore after doing 7 dialations he said it was time for a trach. I'm heart broken thinking how and why did this have to happen to her? A healthy baby up until she was 6 months. She spent 6 months in a hospital all together. We went to Houston for a second opinion before we agreed to the trach. The ent dr said that she was a good candidate for a reconstruction surgery to avoid the trach. So we did it...she was doing okay up until she started retracting again and she needed CPAP to help. The ent dr said that she needed the trach so we agreed and now she has a trach.
She's only on cpap at night and she has her HME on all day. This is difficult for me to grasp and just understand. She's home now with 24 hour nurses and is doing better but now she's spiking low grade fevers. The drs are saying 1 to 3 years with this trach. Has anything happened to anyone else? I guess I just need some advice

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