Sunday, December 28, 2008

Hello I'm Jessica

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.

13 comments:

Happy in Holland said...

Welcome Jessica. It is good to have you here. So, is Jonah in the hospital now? Your poor little guy. It must have been so hard being in and out of the hospital for so long. And how hard that must be on you and your family to be going back and forth daily. I commend you. That is just what we mommies do, though. I don't know much about CLD, but hopefully I can help you out with other things. I'm in the Ogden area, so I don't know a lot about doctors in the Salt Lake area. If I hear of any good recommendations I'll let you know. Welcome!

heather said...

Welcome! This is a great site for all of us and if you need any visitors while you're at Primary's let us know! We have a neighbor with several breathing problems who has been treated at PCH and loved it there. She has found some great help with pulmacort, a dailty asthma medication, repiratory therapy with oral motor toys like whistles, pinwheels and bubbles. She also said amazingly enough that getting her son up and walking while he was in the hosptial was SO good for him.

tiptoe mama said...

My Husband's uncle is a nurse practicioner in the oncology unit at Primary's. I'll ask him if he knows a good doctor.
We're happy to have you here! Welcome again. :)

Lori said...

Welcome! Sorry to hear about the struggles with your little kiddo. Like Happy, I'm here in Ogden and I'm not very familiar with CLD. My daughter has RSD but that was residual from prematurity. Goodness, what a year you've had.

Good luck with everything, hopefully we can be a support for you!

Nancy Brown said...

While we don't live in Utah any more I LOVED LOVED our pediatrcian. Her name is Marissa Nagle. She works with Dr duffy in the Sourtridge pediactric place out by bangerter and herriman. ( the draper exit) she is Fabulous if you are interested. She took care of my baby in the NICU and then took on his care ater the nicu. She caught a lot of his issues before they were issues.

Welcome, and we are glad you are here.

Hope to see you post more!

Aprilyn said...

Welcome to the group! Dr. Pfeffer is AWESOME!! She has done many sleep studies on my 4 yr old and was te first to finally see there is a reason he can't sleep. I hope things improve for you soon.

Aprilyn said...

Oh, and I also love Dr. Mizel. He is our GI doc. We did not like the GI docs at PCMC. We also had a tough time with the Asthma Clinic there. They never knew what to do with my son whose asthma isn't quite like anyone else's.

Anita Nap said...

Oh, and I forgot to change which acct. I was posting on. I should've kept them together. Arrgh!

Katie said...

Welcome! I live in the Ogden area too but we have a bunch of doctors in SLC. I love love love our Ped. He is at U of U Hospital Dr. Paul Carbone. He always spends at least 45 min.- 1 hr. with us. He calls in favors with specialists at Primary Children's so that we won't have to wait more than a week or two to see them. He is good friends with Dr. Pfeffer and seems to know the best doctors in SLC and Ogden. I can't say how much I appreciate him.

Although our children have very different needs, I know you will love it here and find the support you need. Good luck and if you need anything, we are here.

Mel said...

I enjoyed reading your post. Wow, you sure have been through a lot with your little boy. Please keep us posted on his condition.

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Pediatric Wheelchair

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Chair For Cerebral Palsy Child

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Transport Chairs

Keep Posting:)