Hi I'm Jessica and I wanted to thank you for welcoming me to this blog site. I was doing random searches for support groups because I wanted to join one. I found a few out standing ones but they were out of state. Not that it mattered...well it did. I am sure you are all seeing different specialists for this and that, so I thought it would be nice to be able to find out about other doctors and how well they listened to you and your child. So here I am!
My child's story is a lot different then most- Jonah was born full term & weighed a healthy 6lbs 7oz. He is my second and so we felt comfortable leaving the hospital as soon as we could. He was healthy until he turned about 12 weeks. We noticed he was coughing a lot and having a lot of secretions. So much that he started working really hard to breath. I took him to our pcp and let him know that Jonah was wheezing.(my daughter has asthma) He did not here it and sent me home giving me simple instructions to get over the "virus". It was 2 days later that I was getting really worried and I took him into another Dr at Foot Hill Family Clinic. That Dr Said that he is fine and just has a case of the common cold. I kick my self now for not listening to my inner voice. He was getting worse every hour that passed so finally the next morning I took him up to Primarys. They did a Viral Panel on him and the results came back saying Jonah had RSV. He was admitted and gave me a rough estimate of a 3 day stay. On the 2nd night I learned how many medical people could fit into that little room. He was rushed away and hooked up to all of these strange machines in the PICU. One of them was a ventilator. I had know idea that a ventilator was aka life support. He stayed on this vent for many days and he was just getting worse. His carbon dioxide levels had reached 190 ( normal is 40) He turned into a code blue and they moved him into what i call the fish bowl and hooked him up to yet another vent called an oscillator. It was a long hard month but Jonah eventually moved his way back up to the main floor and then back into our home on Feb 13 2008.
By the end of March he was sick, again with something respiratory. I took him into his pcp and he told me Jonah is going to have to go back up to Primary's. My heart fell out of my chest and it was then that I realized I have to save my son. I called a friend who was a nurse and asked if she knew a Dr who works with kids who can't breath well. She gave me the name of a Dr Pfeffer. Dr. Pfeffer saved my Jonah's life! I got an apt with her immed. and she did a bronch on him the very next day. While Jonah was recovering from that in the hosp. he caught yet another resp. virus. He was again put on the vent.
This is how life has been since Jan of 2008.Consistently in and out of the hospital. The only diagnosis they can give me is Chronic Lung Disease. (CLD) I believe that it was caused by the vents he was on and off for so long. In September Jonah got his G tube (feeding tube) placed. He also had anissen surgery. it has been a full 90 days since he has been admitted. He is always sick but it is being controlled with meds and 2 good doctors who keep a watchful eye on him. My hopes are that one day he will catch up and be off of oxygen. For the time being I hope that I can find great support with all of you.