05/07/10 Bad News

Once again the sleep study was a complete waste of time and money. Eli had a very restless night and he didn't get a lot of sleep. Not only was the sleep study a total waste but Eli's CO2 reading this morning was in the high 60's so it's clear they aren't going to let us leave the hospital this weekend.

I went to the hospital after work today and found an assorted team of doctors hovering over Eli again. They are examining him without any respiratory support. Our pulmonologist, Dr. Makris, is listening to Eli and trying to figure out a way to keep him from obstructing his airway. Eli's low muscle tone causes his throat to collapse a little which results in and obstructed airway.

They have been examining Eli and watching him on the nasal pillows and they have now deemed the nasal pillow mask to be a failure. We go three weeks in the NICU with stable CO2 levels and then move to the floor for 4 nights and they declare the mask and respiratory support we've been giving Eli a failure. I'm not sure how that happens. Eli has been on the floor for 4 nights. His first night was pretty rough by all accounts. He was in a new environment and on a new machine. The next day he was circumcised so he probably had some residual pain on night two. On day three they decide to monkey with his mask and respiratory support. Regardless of their tinkering Eli seemed to have a fairly decent night the third night. Night four was the sleep study. Since we've moved to the floor we haven't had one single night where there hasn't been something going on that would be a disruption to Eli's sleep. Maybe Wednesday night but I think all the tinkering with his respiratory support in the afternoon impacted him to some degree.

During our discussions with the doctors there was another concerted push to move forward with the tracheostomy. I just don't think we should do it. We don't have a diagnosis and Eli seems to be getting stronger with every week. The tracheostomy route would leave us sitting in the hospital for another 8 weeks. What's going on right now with Eli just doesn't feel right to me. They have every incentive to keep Eli in the hospital and no incentive to let us take him home. I'm afraid this nightmare is going to keep going on and on and on. I expressed my frustration again with the process and our desire not to have the tracheostomy done. We're not ready to throw in the towel yet. In another 8 weeks Eli will be stronger and his breathing has continued to improve so the risks involved with the tracheostomy don't seem worth the benefits.

The compromise for the short term is another mask. We rigged something that we feel should work for Eli but now we have to go through the process of proving Eli can be stable on this new solution. I think I wrote about our concerns with "starting over" in a previous blog and now those fears are realized. Once again we're getting stone walled when it comes to laying out a plan for Eli. Do we need to prove he's stable for a couple days? A week? Two weeks? The answer is always non-committal. I'm not sure I can take much more of the "system". I've been trying to fight it single handedly for the last month or so and I think I've failed which means I'm failing Eli. I don't think the care they are giving Eli is anything more than we could do for Eli at home so I'm starting to think we need a new approach to fight the "system".

After talking it over a little with my Mom tonight I think we're going to give the hospital and this new mask solution a couple days. If it's managing Eli's CO2 and holding his level in the 50's then we're going to ask to be discharged. If they won't let us go then we'll have to explore some other alternatives.

Several years ago my Grandmother had a stroke and we had to put her in a nursing home for full time care. My Mom and Dad tried for a year to manage her care but there were numerous issues. My Mom told me they had to bring in an Ombudsman to help them advocate for my Grandmother's care and it made dealing with the medical staff and the bureaucracy of the nursing home a lot easier to handle. Maybe that's what we need to help us deal with Seattle Children's. I don't think the doctors there are bad or that they're being malicious but the fact is they are unable to find a solution that will help Eli and allow us to take him home. We can't live in the hospital indefinitely and they can't even communicate a timeline to us for when we might be able to take Eli home. The whole situation is unacceptable and I think we need some help to resolve it.