It's been a while

There is a big gap in postings here. Many things have happened. There were changes in the family and a move to another town. Jordan was also not well for quite a time. His seizures became out of control, and he was just getting sick a lot and had several lengthy hospital stays. His seizure meds have changed which helped with his awareness level. He isn't so sedated anymore. He had a few surgeries with his tummy so he no longer has the GJ tube but just a g-tube now. He is tolerating food in his tummy!! Jordan is on a ventilator at night when he sleeps. His 02 was dropping for no reason even during the day so doc put him on the vent and it seemed to help. Jordan was breathing shallow the vent helped give bigger breaths and fill up the lungs in hopes to improve lung function. However the first couple nights with the vent, the apnea alarm was non stop. It explained a lot but we also learned Jordan has severe sleep apnea.

The few hospital stays Jordan had the last few years were scary ones. One time was for seizures. another was for sepsis. As I stated the seizures are now under control but would you believe just needing to poop would cause such a severe issue. Apparently, if Jordan doesn't have a bowl movement on a regular basis (like every day) it throws his ammonia levels off as well as some other counts, which in turn cause seizures. Pretty scary, needless to say we make sure he stays regular. As for the sepsis, they ran numerous tests and cultures and never did find what caused it. That is scary because I need to know so it doesn't happen again.

It's been a rough time here, nursing issues were difficult to say the least and we had to have several staffing changes. For the most part I hope they are mostly resolved, but it seems to be an ever changing situation, which is stressful for everyone including and especially Jordan who has to deal with them one on one daily, depend on them and trust them. The equipment and supplies have been another year long battle to get what Jordan needs but for some reason, in the middle of the states budget crisis, God showed us all he is taking care of Jordan in-spite of the state of Illinois. Jordan got a new wheel chair, a ceiling lift, and some more nursing hours just recently. If I could fill those hours with good people he can go to school and I can go to work and sleep.  With the shortage in help... RELIABLE help, I realized how much the stress and lack of sleep affected me. I need the help. Some days I wish I didn't but it's what keeps Jordan home with us.

Once I relearn how to use this blog, with the new technology I have (still unsure how most of it works) I will post pictures.

For now, Jordan is well and stable. Not as interactive as he used to be but hopefully getting him out and about more with school and the little trips we make here and there he will be. I hope he will bring out that personality again and be my happy little peanut.