Wow, this has been quite a busy week, I don't even know how to start.
The last time I posted, I spoke about us going home soon. We actually got them to let us go home on Wednesday afternoon instead of Tuesday so we could have more time to fix the apartment and get Leah's room ready for her. So, we rented a car on Wednesday since our car is basically out of commission until we get it fixed. We already spoke with a friend of ours who can fix it free of charge, so we were hoping that would happen this weekend, however, now it looks doubtful. Anyway, we got all the furniture, equipment and supplies needed for Leah's arrival from the hospital on Tuesday (the 19th). The room actually is not completely done yet, but it looks really cute, we decided to go with a garden theme. So, with the help of our friend Jen, we built the crib, the rocking chair, the changing table and the bookshelf on Tuesday night and got back to the hospital at around 3 am on Wednesday. I forgot to mention that 5 of our good friends helped us move a lot of our stuff on Monday night and stayed with us until midnight moving things.
Needless to say, we were absolutely exhausted the next day and had to wake up early because the baby was sort of freaking out. We were able to go back to sleep until about 11 am, at which point we started packing up our stuff to take home. At some point in the morning, one of Leah's pulmonologists, Dr. Ischander, came in to tell us that we were in luck because the sleep lab had gotten a cancellation and we were scheduled to do the sleep study at the Santa Monica hospital that night, after we went home. We were supposed to get home by 3 pm, because we were meeting with our home nurses-to-be and a representative from the nursing agency at that time. We ended up not leaving until 4, because some of the discharge paperwork got lost and they had to re-write it. grr.
She was also due for medications and we had to wait for the hospital pharmacy to bring them up. We finally were on our way home at around 4 pm. Oh, and to top it off, I was supposed to pick up her medications from one of the pharmacies that was close by to our house, the morning that we were leaving so that she would have everything before we left the hospital. And, of course they didn't have any meds ready at that time, until later in the day. I told the nurses at the hospital that it didn't matter, I could just pick them up once I dropped Leah and Zev off at home (since she was due for meds at 5).
Anyway, we got home and met with the 2 nurses we'd have, the supervising nurse and the representative of the nursing agency. Once inside the apartment, they asked us were they could wash their hands, and I told them that the bathroom door was blocked with moving boxes and they could wash their hands in the kitchen sink. I set the baby down and hooked her up to all her home equipment, the nurses came back to the room and started talking to me. Zev mentioned that something smelled like it was burning; at first I thought it was maybe one of Leah's machines, the moisture compressor that was getting too hot. And then the smoke alarms went off. Zev left the room and a few seconds later I heard "There's a fire! Get the baby out, get her out now!" I scooped Leah back up, grabbed her feeding pump and ran out the door. As I was running out, I saw the orange flames coming out of the kitchen and Zev trying to avoid them as he ran back into the kitchen to put them out. I ran all the way out the the front yard area, and could see the black billowing smoke coming out of the door. In my rush to get out, I forgot the oxygen tank and luckily one of the nurses got it and helped me hook Leah back up to it. I don't think Leah even noticed what was going on, she was smiling and laughing, being in the sunshine for the first time in months. On the other hand, there were still 2 large back up oxygen tanks left in Leah's room, which don't have wheels and are very heavy. Smoke was still coming out of the door and I wasn't sure if anyone was calling 911, so I started yelling "Fire!" to the other neighbors and knocking on people's doors. I didn't know if the fire was going to reach her room and blow up the tanks and the rest of the building. Luckily the agency rep went in and got on the the tanks. Some of the next door neighbors came running with fire extinguishers and we could hear firetrucks in the distance. Finally, Zev walked out of the apartment, his face and shirt black with soot from the smoke, and told us he put the fire out. The fire extinguishers had been too late,as he had already put it out. The firefighters were even later, they go there and just surveyed the area and used a large fan to air out all the smoke. At that point, my heart was racing and everything was so overwhelming that it all hit me at once and I started bawling my eyes out. One of the nurses offered to hold Leah while Zev hugged me and told me it would be ok. I just could not believe everything that had happened. Things could have been so much worse and it scared me to death to think what would have happened if Zev had not been able to control the fire and had gotten hurt. And to think what would have happened if Leah had inhaled any of the smoke with her trach. Or if we had gotten stuck in her room while the fire got worse. Or the oxygen tanks exploding! One of our neighbors came over and gave me a hug, and asked if I was alright. I was physically alright, but emotionally, not even close. I mentioned to the nurses that we were lucky that we got home when we did if this fire started out of nowhere. They replied "Well, I think since we were all trying to wash our hands in the kitchen and were squeezed in there, one of us might have bumped the stove and turned it on, which may have caught on the stuff that was on the counter next to the stove." I couldn't believe it. How does someone turn the stove on by bumping into it? And not notice?! Apparently, one of the plastic drawers from the fridge caught fire and it sort of spread up to the bottom of the microwave, which is now charred as well. Zev told me he was able to dodge the flames somehow, turn on the kitchen sink, grab the plastic that was on fire, throw it into the kitchen sink under the running water and put the fire out. Luckily, no one was hurt, although our new place now has charred walls and soot everywhere. Not to mention the icky powder from the fire extinguisher.
We had no choice but to go pick up her meds, since they were late; then head to the hospital for the sleep study. How lucky are we that we already had a bed set up for us away from home that night? We were running low on her oxygen tank though, so we had to take one of the large back up ones to the hospital with us. The sleep lab doesn't open until 8 pm, so we were told by Dr. Ischander to go the ER in Westwood, and ask to borrow a tank of oxygen there and just stay there until it was time for the sleep study. Her sleep study was fine, she actually slept pretty well, although it was exhausting because it was the first night away from the nurses and I had to stay up to give her meds and wake up at 3 and 5 am to give more meds, so I didn't really sleep that night either.
Thursday was not too bad, except for our slightly incompetent nurse who seemed like she really didn't know what she was doing and kept asking me how to do things that she should have known. She was nice, but neither of us really felt comfortable leaving Leah in her hands to take care of, even while we took a nap. We asked for a different nurse for the next day and we got someone awesome.
Yesterday, Leah had an appointment with Dr. Ischander in clinic and we went to see her at 11 am. In her office, they took all her vitals and noticed that she was running a fever of 100 degrees, and she recommended we go to the ER. So there we go again, back to the ER. They had us there until 6:45 pm, and took cultures of her trach, her blood and they tried to get her urine, but were unsucessfull. They sent us home saying not to worry, that she probably just has a virus and they would let us know if anything grew out of the cultures.
Sure enough, last night our friends Jen and Bruce came over to visit Leah and she had a fever again, this time of 101.3 degrees. We gave her some Tylenol and called our pediatrician, who was not on call so we got another doctor who was. She reassured me the same type of thing the doctors from the ER had said, that it might be viral, that because she had no other signs of infection, like diarrhea or vomiting, but if she developed them to call her. Leah had a rough night and so did we. At around midnight, we heard her making little sounds, which at first scared us since the last time that happened, she had issues breathing. The on call pulmonologist, Dr. Pornchai said it was a leak in her trach and that's why we could hear her voice now. But I looked at her trach and saw some goo, and suctioned her and the noise stopped, because her trach was not plugged anymore. I guess, she got a mucous plug and her voice was audible through her throat. It was so wonderful to hear her again though, even though she was probably having issues breathing at that point. I loved hearing her little sounds that she probably would be making all the time, if she wasn't trached. They have told us that as she grows, she'll get a leak in her trach and will be able to produce more sounds though.
Anyway, she continued with a high heart rate of 215-220 bpm and temperature all through the night, to the point where the home nurse was sort of freaking out and suggesting we call 911. We didn't, just because we've seen her heartrate go up considerably before.
Meanwhile, I was trying to get a hold of some doctor that we could speak to who knows Leah so that they are aware of the history and we don't have to give so much info about her. Also, so that they know what her baseline and how she normally acts and sounds when she's doing fine. I was so shocked at this page operator who was trying to page different doctors for me and the additude she gave, was crazy. She was so rude, and sounds almost annoyed that I didn't know people's name and that supposedly I "didn't specify what kind of specialist" w needed to find that right doctor. Excuse me for wanting to speak with the correct person, she was sooo rude and mean. She called me back 30 minutes after I spoke with her and let me know that she couldn't reach Dr. Ischander, so I took advantage of the chance to let her know. I basically told her that there was no need to have the annoyed tone of voice while she's on the phone and no need to be as rude as she had been to me. Instead of an apology she acted defensive and told me that she was just trying to help and that I sent her on a "wild goose chase" to find the right doctor for us. It was completely frustrated because she didn't understand that I didn't want an explication of what happened and why she was rude. I just wanted to hear an apology, something to let me know she understood. But she just kept on saying "I was trying to help you, I busted my butt looking for someone for you" but ok, thanks for letting me know. Please lady, like I need to deal with your crap on top of everything else
Anyway, that's about it. The doctor told us to take her to the ER and Leah is now at the hospital for at least another week, while she is treated with antibiotics. We shall see what happens next, every day seeems to bring something new.
I'm going to sleep now because I am super tired,
Have a great night.
Oh! and I'll post again tomorrow with pics for you guys!