Salt Lake City Regional Medical Center. It sounds bigger than it is.

Thanks. DH works for United. We have unlimited miles ;) We are number 1 on the standby list for this flight and there are plenty of unsold seats so we should be good.

He is in no way "better" we just have to use this window of stable to get him home. He may be hospitalized as soon as we reach chicago. When we were leaving I tried to talk to the nurse manager and was introduced to one of the nurses that were working all night. He didn't care. He gave me a "customer service response" Tell me what happened? Nodding, then wording the response so that he really said nothing. No admitting guilt, and did in no way acknowledge that maybe I had a point. I went to the business office and the patient advocate doesn't work today. And conveniently the only person I could talk to was in a meeting all day and couldn't be disturbed. The infectious disease doc had already given me her cell number so I called her. She works for 5 hospitals here. She said just to go. That if my son hadn't improved yesterday she was going to tell us to transfer him anyway. So we are in the hotel and will fly home in the morning.

I wish I would have either taken a photo or video. I just didn't think of it.

I actually think maybe the finger monitor is messed up. When the crowd came in after I caught them asleep my son was offered oxygen. His numbers went up to 93 on oxygen. I had him stay on it for an hour. He said it hurt his nose. So from 3:30am until now (5:40 am) he has been off and was at 89/90. I'm sure they gave him oxygen just to placate me. Only another hour or so before the docs make their rounds.

When my husband comes back in the morning. We will meet with the doctor team, I will file a complaint, and then I'm going to the hotel to take a nap.

I totally get all of that. If they weren't sleeping than I wouldn't have doubted that the monitor was wrong. But how would they know if they aren't even awake. I just feel like only the infectious disease specialist is actually good at her job. This is a tiny hospital. The goal is to get him out of here tomorrow and then back to Chicago thursday. Where at northwestern or rush nurses don't sleep on duty.

So many typos- I'm on my phone.

My son is in the icu. His heart rate is abnormal and the cardiologist is trying a new medicine overnight while monitoring all his rates. Several times tonight we've had alarms going off for the reasons he is being monitored. No one was coming in the room and ny son was making a weird sound. His blood ox level was 80. I went out to find someone and the nurse was asleep in front of the screen at the desk. So, I'm stressed but understand shift work. I wake her and ask her to check him. She comes in and has him lay on his back. Several hours later the same thing happens only on this side of icu a male nurse is sleeping on the other side 6 nurses are loudly laughing and joking (at 3am) I ask for the dr to be paged. She had told me to page her any time she is in the hospital all night. They don't page her. A few of them come in and try to tell me its his iv beeping. Its not. Then they want to know why I'm even here. They can't believe I'm his mother. I'm so young- yada yada. Then they tell me his numbers are fine and he doesn't even need to be monitered. I explain that yes he does that the cardiologist explained what we were looking for and he needs all the info from tonight to make decisions tomorrow. Argh. I know this could be me just freaking out over nothing- but am I justified in any way?

We were at Disneyland last week. Both last year and this year we stayed at the Desert Palms Inn and Suites. It was a easy walk to the parks and included a breakfast buffet. They have some pretty big suites. We stayed in one with a queen bed, bunk beds and a pullout couch. I think going in January/February is a good idea. The crowds were crazy while we were there. When the big kids were little we always had the kids pick 1 must ride and 1 back up ride. Then we concentrated on their picks. We didn't see everything. There was no stress because our expectations were so low.

I may have one soon. I'd like an old fashioned one where they take me to a nice old mansion. I can walk around outside in pajamas taking notes. Then someone will bring me over to the table and present me with food I didn't cook. I also won't have to clean up.

#1- all day every day throwing up in labor. #2- evenings only #3- very minimal for the first 12 weeks. #4- almost none (my only girl) #5- all day every day hospitalized twice. #6- same as #5 but that baby was stillborn at 25 weeks.

Diagnosis-Ehrlichiosis From a tick in minnesota. The bacteria is attacking his heart so he is on strong antibiotics and a beta blocker. He did eat lunch and we are happy to have an answer.

Diagnosis- Ehrlichiosis From a minnesota tick. The infection is in his heart so we are starting antibiotics aggressively.

His fever is back up to 102. His white count is 1.6. Which is a little better. The bone marrow biopsy is on today's schedule. The insurance is acting pretty clueless. When I get a few minutes I have to work my way up the chain. Connor would like us to check him out and drive him home.

Expert on fevers now. It's not good but only if it stays up. There isn't permanent damage until you hit 105-106 for a sustained amount of time. I'm not a doctor but I hear them in the icu. :)

No real update. He is finally sleeping and not hallucinating. So I have a few minutes of quiet before something beeps and and army rushes in. Just wanted to check in and maybe mull over curriculum or bookshelves.... Things I'm thinking include: Being so grateful that my other kids especially my daughter totally rock. She made a menu and a schedule and has both older and younger brothers completely in line. Maybe we'll drive Connor back to Chicago? The concern is germs. If we drove him he would be in way less contact than an airplane. What do you guys think? This would be after a diagnosis and treatment of course. Tomorrow is gonna be a big day. 3 procedures. Putting the central line back in (he ripped it out while hallucinating) Transfusion Bone marrow biopsy Then we wait again.

In the mix today. More fever, fewer white cells, liver damage. It could be rocky mountain spotted fever, typhoid, leukemia. Tomorrow we do a bone marrow biopsy and transfusion. I'm trying to stay together- but its definitely a challenge at this point.

Chris- I'm just copying and pasting the update I send family. Except now. :) We met with the infectious disease specialist in person yesterday and I liked her alot. She is doing everything she can to figure this out and she is consulting with the cdc and other specialists. This is a very unusual case. Its harder for them to pin down what is going on because of his travels. He was in India from April to May. Then Chicago, Minnesota, Arkansas,Colorado, and then Utah. All the time except Chicago in the woods in tents. So now they have ruled out most of the tropical things and are looking at tick spread diseases. If the tick things don't come back positive then they need to think about TB or even some kind of cancer. They would do a bone marrow biopsy. His fever will come down a couple times a day. What we are trying to achieve now is to keep it down while we wait for some test to come back positive for something.

Praying

They didn't a few years ago.

Ok. We've got a cooling blanket that circulates water on him. We've got another specialist coming in who thinks that it may be rocky mountain spotted fever from a tick. That test isn't in yet. Of course. They are going to start alternating ibuprofen and tylonol because the specialist says his blood is thick enough now to handle it. He has electrolytes magnesium potassium and the antibiotic for tick and spider bites all going into the central line. His fever is down from 104.5 to 103.2 right now. He is still confused but better a little than a hour ago. Malaria test was negative. Still waiting on typhoid and the tick tests.

I'm so happy for all of you.