04/05/10 Care Conference

Today we have a meeting with Pulmonary, Social Services, Home Care, and the NICU staff to look at alternatives for Eli's care. I've been pushing very hard for some answers or at least an alternative way of looking at things. I think the medical profession in general is lacking in creativity when it comes to "thinking outside the box".

By all accounts Eli is stable and doing well but he does require additional respiratory support. We're not sure if the CPAP/BiPAP is going to be able to provide that support for Eli in the short term due to equipment issues. The biggest challenge is the mask that Eli is quickly growing out of. For reasons I've already documented there doesn't seem to be an intermediate mask that will carry us over until Eli is big enough to fit into the mask that's approved for home care. The other issue I've been pushing to address is our need to stay in the very expensive NICU.

**Note Regarding Financial Issues**

We've had several people give us gifts over the last two months and a few people have even sent us cash. I'd like to thank everyone for their support. Patricia and I very much appreciate everything people have done and are doing for us and the level of compassion everyone has shown us is absolutely remarkable. If you want to support us and help Eli, Patricia and I want to respect your decision, but please understand we aren't asking for people to send us money. If you want to help and make a difference in our lives then please pray for us and pray for our little Eli. Our faith is strong but it's been difficult at times and we need compassion, kind words, and prayers more than we need money right now.

When I write about financial issues in my blog I'm trying to put things into context so people can understand the very real debate over health care reform that is going on in our country right now. I'm not advocating for or against health care reform. I've been fortunate in my career to work for great companies that have great benefits, including health insurance. In fact I've made it a point never to go uninsured even when unemployed. The cost of health care is staggering and my position as a controller with a couple different companies has given me the unique opportunity to see just how much private health insurance really costs. A lot of people make the conscious decision to go without health insurance because it can cost you a lot of money out of pocket each month. Weigh that against spending $10,000 a day in the NICU and going without insurance just doesn't add up.

Having said all that, some of the issues we're struggling with are financial but they are more related to our insurance coverage than anything else. Since we don't know what Eli's prognosis is I'm concerned with our ability to provide for Eli's needs *if* he should require long-term care. Most insurance policies have a lifetime maximum benefit to limit exposure and while my current medical insurance is extremely good I don't want to risk doing nothing now and end up short several years down the road. For example, if Eli is stable and doing well then why do we need to stay in the NICU? Wouldn't we be just as well off with Eli on the floor? We've been pushing for answers to these questions because I don't want to eat into Eli's lifetime maximum any more than we have to. We don't know what care Eli will need down the road or how expensive that care will be. Further, we don't know what impact the health care reform is going to have regarding our situation with Eli so we want to be as conservative as possible.

The answers to our questions, so far, have not been adequate. We've been told that it's "hospital policy" to have children on CPAP/BiPAP cared for in the NICU. We've been told that there have been exceptions before so we obviously we need to challenge that policy and the ultra conservative approach the hospital is taking. If there are no safety considerations then there's no reason we shouldn't push to get Eli admitted to the floor.

Getting back to the "Care Conference", we had an opportunity to question the doctors and experts about Eli's care this afternoon. Eli's primary issue is his ability to maintain an acceptable range of CO2. Off CPAP/BiPAP Eli's CO2 level increases until he is in the high 70's or low 80's. On CPAP/BiPAP we're able to maintain Eli's CO2 level in the 55 to 65 range. Neither of these options is acceptable for long-term care and neither option gets us any closer to taking Eli home. The only viable option at this point is the tracheostomy. While this option still scares the crap out of us I think we're coming to accept the inevitable conclusion that Eli needs to have the procedure done.

There is a lot that goes into a tracheostomy and I'm sure I'll be writing more about it in the future should we decide to move forward with this option. A tracheostomy is a procedure where they cut a small hole in the wind pipe and place a tracheotomy tube in the hole. The resulting tracheotomy allows breathing directly from the hole bypassing the soft tissues of the throat that are prone to collapse and obstruction. Additionally, the tracheotomy tube can be hooked up to a machine, either a CPAP/BiPAP type machine or a ventilator, with the tracheotomy forming a well sealed connection or circuit. From our discussions with the staff today we learned a lot more about this option but even if we decide to go down this path we're looking at another 6 to 8 weeks in the hospital. After discharge we would have a nurse in our home to help take care of Eli 16 hours a day until he is at least a year old.

We still have a lot of questions about Eli's care and we're still waiting for the CCHS gene sequencing which might help us make the decision to move forward with the tracheostomy should Eli test positive because then we'd know what we were facing. Not knowing what our future holds is the toughest part and I'm worried that we might be making a decision that sets Eli back more than it benefits him in the long run. It's so hard to know what the right decision is...

Patricia and I will be gathering more information regarding the tracheostomy this week and I'll do my best to put that information down in subsequent blogs.