In the hospital again...

From the beginning...On Thursday, we went to Robert's first cardiology appointment with Dr. Batten here in Mobile (would have been last week, but his doctor was on vacation during the July 4th week). He had an echo cardiogram and a few other tests including his oxygen saturation level which was at 82%. Dr. Batten really wasn't comfortable with that number, but he wasn't relying on oxygen to get there and it may have just been a low for the day. So she decided to order us a home oxygen monitor, oxygen, and portable oxygen. Basically, she wants us to put him on the monitor a few times a day and write down the number so she can see a bigger picture at our next appointment (and the oxygen is just in case). We weren't expecting to receive a monitor considering UAB had sent us home empty handed on medical equipment because "it would drive us crazy" (the monitor has this very loud and annoying beep each time the oxygen level drops below whatever is programmed as acceptable). And UAB is probably right...BUT if we need to be monitoring his oxygen level then we still need it. The home health group called Thursday afternoon to schedule coming out on Friday.

On Friday, the home health nurse came at 11am as scheduled. She brought the oxygen monitor, oxygen concentrator, and 2 portable oxygen tanks. She immediately hooked up the monitor and placed the sensor on his foot so we could take some reads on it before she left. In the meantime, she spent some time setting up the other equipment and showing us where to plug in the various cords and hoses and generally showing us how to work it. The monitor was reading low...As in the 70s low. So the nurse played with the monitor a bit and adjusted the sensor several times. It remained in the 70s even dipping into the 60s at times. As the oxygen was already plugged in and hooked up at this point, we went ahead and put Robert on oxygen to see how that would affect his levels via the monitor. He remained in the 70s. The nurse ensured that all the equipment was properly working and the monitor was reading correctly. Awesome. During all this, the nurse found that the regulator for the portable oxygen tank was leaking and needed to be replaced (the portable oxygen tank won't work without the regulator). So she was going to take the broken one and send out a new one either later that afternoon or next day. [No worries...Because we aren't going anywhere, right?]

After the home health nurse left, we called his cardiologist's office. Upon speaking with them (our actual cardiologist was off so her partner will be handling his case this weekend), we were told to put him on the portable oxygen and come in to be checked. Unfortunately, we did not have the regulator for the oxygen tank, therefore, we wouldn't be able to keep him on oxygen while we drove there. The nurse said that they would call us an ambulance [Ummm, why?] Apparently, the nurse had documented that we did not have access to portable oxygen and they could no longer advise us to drive Robert to their office. [Okay...He was not on oxygen an hour before the home health nurse delivered the equipment...And he seemed no different.] So this was our ride to the hospital (as an ambulance will only take you to an ER - not a doctor's office)...

My first ride (and hopefully only) in an ambulance was not very exciting. It took us a while to get loaded up, then we took the scenic route and seemingly took us longer to get there than it ever would if I had driven myself, and no lights. Robert sat on the bench next to me in his car seat while the EMT held oxygen up to his nose. Pitiful, right? And then they had to load him on a stretcher to take him into the ER... Hospital/ambulance policy seems a little overkill when you place an infant strapped into a car seat on a stretcher...

When we arrived to the ER at USA Children & Women's, they gave Robert a quick check (temp, weight, etc.) and then hooked him to their oxygen monitor. Just to check, they kept our monitor hooked to his other foot and compared the levels (to ensure our monitor was reading correctly). The numbers matched. Our home monitor was unhooked and they continued hooking him to various other things. He was left off oxygen for a while to see where his true level sat. It was in the 70s. Back on oxygen.

The cardiologist came in and looked over his stats and current oxygen level...and decided that Robert needed to be admitted for observation. So at least one night in the hospital it seemed. The orders are to stabilize his oxygen levels between 80 and 90 preferably in the mid-80 range. If oxygen is needed then keep the level at the lowest possible, but under 2 liters. If his oxygen level cannot be stabilized within a 30 minute time frame, then Robert needs to be sent to Pediatric ICU (PICU). And if it cannot be stabilized within a 1 hour time frame, then Robert needs to be transferred to UAB.

After a wait for a room cleaning, we were sent to Room 425. As I write this blog entry on Saturday morning, we still sit in Room 425. I am a little confused as to why...We definitely hit the 30 minute mark to go to PICU before midnight last night. And I would say, we also hit the 1 hour mark as well. But the residents/doctors working last night didn't feel that he warranted a trip upstairs. It was almost as if they were scared to send him upstairs to PICU because they might be reprimanded if the PICU doctors decided he didn't really need to be there. Each resident/doctor would find a resident/doctor higher on the food chain to come check him out and ensure he was still "okay" and back up their decision to keep him on the pediatric care floor. The lesser doctor would bow out at that point and allow the newer doctor to take over. I just couldn't figure out what was going on...Were they unsure why he still looked "pink" and didn't seem to be distressed beyond the numbers on the monitor??? I am confused...They trust the monitor when its reading a "good" number (i.e. 80+), but when it reads low then it must be something else (i.e. monitor is bad, sensor is in wrong place, its not picking up correctly, etc.).

On a funny note (not that much is actually funny right now), Robert gets his meals delivered 3 times a day because he is on the pediatric floor...? This was his welcome to the hospital dinner. Ummm, gross. Plus, he is THREE WEEKS OLD!

Throughout the night and the incessant beeping of the alarm, Phillip and I were left on nurse duty. The monitor does not connect to anything outside of this hospital room. Therefore, it is left up to us to notify the nurse if anything needs to be done (i.e. just generally check on our child). We were constantly checking the monitor and letting someone know that he wasn't stable. It doesn't help that the way the room is organized, we have a really uncomfortable couch to sit on that is on one side of the bed, the monitor is on the other, and you can't see the monitor from the couch. So it was just constant up and down to see the monitor. Around 1am, I pulled a horribly uncomfortable wooden chair to the end of the bed, placed a plastic pillow on the food tray, and slept there for an hour or so. At one point, a nurse came in and asked where the recliner was. [Recliner??? You mean we get more than a mini-couch and 2 wooden chairs???] Apparently, when a room goes vacant, the other "tenants" on the floor steal furniture out of the room for use in their rooms. It would be really nice to have a place to sit next to our baby rather than standing there at all times of the day. This morning has been better though...A little less beeping (the alarm level was turned to 75 versus 80 so that helps) and we seem to be a little more rested (how in the world that happened...I will never know). But his stats still aren't great. They sit in the lower 80s and have been in the high 70s for a while now.

The cardiologist came in a few minutes ago to check in. Basically, he listened to his heart rate, checked the sensor and the monitor, and said he wants Robert to be off oxygen completely and have a stable oxygen level in the 80's before we go home. That means at least one more night in the hospital. They have put him on medication as of midnight. He is taking Propranolol four times per day. We were prescribed that at our cardiology appointment on Thursday, but the pharmacy was unable to fill it until 3pm on Friday (after he was already in the hospital). So the doctor put an order in for the nurses to give it to him while here (not really sure why it took till midnight for them to start giving it though...???). The medication should help in bringing up his oxygen levels and lessening his need for oxygen to maintain those levels. According to the doctor, Propranolol is "voodoo medicine"...meaning that no one really understands how it works, but it works. The doctors at UAB warned us that Robert may be prescribed this medication at some point even though they believed that it didn't work, but also believed that it didn't hurt anything either. I guess we will just see how it goes over time...At this time, Robert is sitting at the low 80 range when sleeping and no activity (in the 70s when active) and is on 3/4 liters of oxygen. If Robert is unable to keep his oxygen in the 80s range without oxygen (regardless of medication), then the cardiologist will contact UAB to go forward with the shunt surgery. I assume that means we will be traveling the first part of next week...?

So in the meantime, we wait. We wait for more doctors to give us their opinions. We wait for the nurses to actually check on him. And we wait for results.