Post Tracheostomy

It was less than a week post tracheostomy & Jordan began healing & doing much better.
Jordan came home August 30th. Life as we knew it had changed. What followed was a long winter of more illness & hospital stays. Mostly respiratory & tracheal infections. Jordan also started having more seizures without having fevers. Medication, and some time seemed to help those issues. Late October began nursing help which was a disaster until I switched agencies in February. I am currently still with that new agency & it's working out.

Over time Jordan became more stable. His seizure med's & breathing treatments have been changed. It seems we have finally found the right mix. I was now able to focus on his development again. I had since requested a lowering of his Baclofen medication, which will increase his tone but allow him more strength & less sedation. He seems much more happy & alert.

Jordan still has a GJ tube & receives all nutrition & medications through the J-port. Only his stomach med's go into his stomach. It has been decided to just let Jordan be healthy for a while & address the stomach issues later. All tests and scopes come back normal. There is no answer to this day, as to why he can not feed through his stomach, but he is getting enough nutrition and he is happy & healthy.

My how perspective has changed. Jordan started out with a diagnosis of Cerebral palsy, reflux & a g-tube. After the fundo, everything was great, for 2 years. Then, it was a long agonizing year of unexplained vomiting and respiratory illness & surgeries. I just wanted Jordan back to the way he was. I had finally come to terms & accepted his challenges, and how life would be for him. Then it has all changed. I looked at it as he was getting worse. Until I saw how he gained weight. In fact he became overweight & we had to cut back on feeding. I saw how once the winter season ended, Jordan became more stable. It was easier for him to breath. He didn't have to work so hard. He needed time for the trach to do it's job. He needed time for his body to adjust to his environment, everything was different. He needed time to heal from so much time of being sick.
Jordan has finally become healthy.