"That Which Doesn't Kill Us,

makes us stronger." ~ Clarice, Steel Magnolias

We had our first visit with our PID at Seattle Children's Hospital on Thursday afternoon. I had planned to go to the clinic, drive down to visit Andrea, and then drive home on Friday. During the visit it became clear that Jubilee had TB at some point in her life. I was told she had been treated, but there was no mention of it in any of her medical paperwork from Ethiopia, and the immigration test results are safely tucked away at the CDC. Just to be on the safe side we were admitted to the hospital to do sputum tests every 8 hours for 3, 8 hour periods. Not my original plan, but since I've only been home from Ethiopia for two weeks I'm still in the "no problem" phase.

I had, fortunately, asked for an interpreter. That was very helpful. He was able to explain things to her in a way that she could understand. He was also able to talk to her during the down times and help me get a better idea of where her education level is. He asked her to do some writing in Amharic, and asked her some questions about school. He explained to me that in Ethiopia they automatically promote the children regardless of their performance. Some children can transfer from schools in Ethiopia and go directly into the same grade in the US and do very well, while others are not actually at grade level. He told me that Jubilee is not at grade level for where we have her in school. He told me that I need to work with her on more foundational learning skills before she will be able to succeed in school. I also talked to him about how to help her keep her Amharic. He suggested Internet radio in Amharic, as well as YouTube. Of course, the more she can speak it to other Amharic speakers the better. He said that most children her age will not completely forget it, but they will lose the confidence to speak it. They will understand what is being said, but won't want to talk with others. I was so glad that I had him to ask her questions and help me get a better picture of what is going on with my sweet daughter.

The clinic visit was not too bad. She did get very upset after having her blood drawn, and then having to get vaccinations as well. I couldn't blame her for shedding tears, and wasn't really sure how to console her. The interpreter did let me know that closeness is important culturally in Ethiopia. He very tactfully let me know I should hold her hand and keep an arm around as much as possible. He also encouraged letting her sleep with me, since that is the norm in Ethiopia. She did need a lot more comforting and it was a good opportunity to bond with her since we ended up stuck in a hospital room for the next 48 hours.

After my previous blog post, I won't start raving about the idiocy of institutions that see you only as a birth date on a chart, and not as a person with a name and individual needs. Suffice it to say that I do not know my children by their birth dates, I know them by name. Which is why when doctors ask me their birth dates I need to think about it for a moment. I have actually had snarky comments about whether or not I was their mother because I didn't come up with their birth year in less than 2 seconds. There were numerous occasions that I had to refrain from upbraiding the poor nurse for following the procedure. I did have one lovely nurse with some wisdom. I asked her if I could use my cell phone in the room. She smiled and said "no! but no one cares so go right ahead. If anyone asks I said no." Later I asked if I should give Jubilee her meds, she again explained the hospital policy and then told me to go right ahead. I wanted to kiss her.

The hospital policy is that they want to dispense all meds, so that they can MAKE SURE that the patient gets what they need and that it is administered correctly. Whatever! Both Jubilee and I have watches with alarms that go off twice a day to remind us to take meds. Our alarms would go off, and no nurse would come. We would wait and an hour later I would walk out to the nurses and ask about meds. They explained that they do meds twice a day, and not on our schedule. They gave us her meds at least an hour late, sometimes more. I'm glad they don't let the families take care of their children at the hospital, we might really screw it up. Editorial note: I had written about a med that they didn't give us, but as it turned out it was an antibiotic that she no longer needed. My PID emailed and cleared that one up for me. My apologies to the poor nurse I maligned.

Lest I sound completely ungrateful, I have to say that Children's is an amazing hospital. I was glad I was there and that they were able to handle the situation. We did discover that Jubilee had TB at some time in her life, but that she is in not a health risk to anyone at this time. It was a tough time for Jubilee. She opened her food tray on the first morning and said "airplane food!" I assured her it wasn't that good. After a particularly scary lunch I asked if I could go get her some t'bs. She was willing to let me leave her there for one hour if I promised to bring Ethiopian food and a Coke. I scored!



I had the opportunity to do some serious bonding. We were in isolation, at least she was, but I could come and go. She asked me at one point why I love her. I was able to tell her all of the good things people had told us about her, and that we had been praying for her for a long time. We were able to talk about enduring tough times. There was a code blue while we were there. We prayed together for the little one that was suffering so much more than we were. We also watched Steel Magnolias. What a great movie. She realized that maybe what she was enduring wasn't so bad, and having someone to laugh and cry with was really helpful. It wasn't the weekend that I had planned, but it was a good time with my girl. I told her next time we were in Seattle for the weekend we would get a hotel with towels and fluffy blankets and better food.

I also had some great support. My husband, who is getting good at being Mr. Mom, did a great job at home. Lisa's oldest daughter Hannah brought us books and snacks. I hadn't brought any reading material, since I thought I was staying with Andrea. Andrea was ready to take me in at the drop of a hat. Of course they would not tell us when we were going home, so I was constantly trying to figure out where I would stay if they let us out when it was too late to drive home. Andrea eventually just drove up and had coffee with me. It was so great to have a friend to talk to. My Mom was also arranging to take us in if we needed her. It was a great comfort to know that so many people were pulling together to cover all of our needs.

It is very good to be home. I am grateful for home cooked meals and board games. I also have a great list of things to take with me next time we go to clinic, which looks like it will be in a month.