Tuesday, July 14, 2009

All Right!

Today was maybe our best hospital experience ever. Susannah had a nephrostogram at Columbia and unlike two weeks ago, our appointment actually occurred at the scheduled time. It took a little over an hour and she responded to the anesthesia very well. We spent two hours in the recovery room and were home by 1 pm -- UNHEARD of!!

What we learned from the test today is the best possible scenario we could have. It seems that swelling from the May 4 surgery has been preventing the ureters from draining as well as they should be. They did not have to insert a balloon into the tubes to stretch them or anything like that. The wires are still inside her kidneys but they are capped, which means no more bags for the meantime!! She is peeing like a normal girl and I have instructions on how to measure her urine output. She will continue to be closely monitored with sonograms. For now we are very pleased with these results.

As long as something crazy doesn't happen in the next 24 hours we are taking a trip this weekend to Maine!! We are all looking forward to a much-needed weekend with friends, sunshine, and Pabst.

Once again Grandma Moonpie is here with us and was my co-pilot at the hospital this morning. Here are a few shots of us in the recovery room.

When we got home, S really perked up. I think I was more tired than she was! She crawled, she played, she stuffed food in her mouth. She amazes us more and more.

Friday, July 3, 2009

Happy to Be at Home

Yesterday was one of the longest days of our lives but we are home now and everything is pretty much fine. We arrived at the hospital at 7 am and they did not start the procedure until 2 pm! It was criminal to have us wait so long especially since Susannah could not eat or drink anything in preparation for the anesthesia. We passed some of the time in the children's garden behind the hospital. She's pretty cheery here but as the day dragged on we are all quite unhappy.

The nephrostomy went well and there were no complications. We go back a week from Tuesday and basically repeat this whole procedure. She'll be under anesthesia again and they will insert a wire into the tubes to get a better look at what's preventing the urine from draining completely. It seems that the problem is still at the bottom of the ureters, which is kind of a good thing because it is more likely that the obstruction is due to swelling that will eventually subside. So we wait and see..... what else is new. If they make us wait that long again they will have to call security because I will resort to physical violence.

Until then, we are dealing with these bags. Almost all of Susannah's urine is now being drained into these bags outside her body. We can detach them twice a day for an hour at a time. Our job now is to devise ways to keep them out of her way and out of her mouth.

She was pretty miserable yesterday but fortunately today she is acting completely normal -- eating solid food, drinking milk, nursing, crawling and wanting to be walked. That is such a huge huge relief to us all. It's possible that having all this pressure off her kidneys will make her feel even better.

In the meantime she looks like a Guatemalan kid since the best device to keep the bags out of her way seems to be this scarf that Ben got me when we were near Tikal. (That was in 2003 when we were oh so young and carefree. But maybe S would like to go there someday....)

Wednesday, July 1, 2009

Good news, Good news, Bad news

Good news: This is the sight that greeted me when I went to get Susannah out of bed this morning. She was standing up in her crib all by herself for the first time! Her physical strength and her interest in movement has improved so much over the past eight weeks. And, a weight check at the pediatrician today has her at 17 pounds, 10 ounces, her best yet.

Good news: Darling Ben received a great job offer today. We haven't said much about it here, but he left his job back in March and if not for Barack Obama and the federal stimulus package's subsidized health insurance, we would be living in one of our parents' basements and totally overwhelmed by Susannah's medical bills. Instead Ben has been working like a dog to find another, better job and today he accomplished just that. He'll be working as a writer for an international nonprofit called The Hunger Project. The work is more creative, the commute is shorter and best of all, his supervisor is a Prescott College graduate! Or maybe best of all is that the job includes health insurance for the whole family -- the exact same health insurance that we've had for the past two years. It's such a relief, and enough cannot be said about how hard Ben has worked, how frustrating it has been, and how awesome it is that he will be taking a job that he is (1) excited about and (2) will give his family some stability. Ben, you are my hero.

Bad news: Though Susannah's behavior indicates she is feeling much better, her kidneys are still extremely dilated. The pressure on the kidney tissue (created by the hydronephrosis) continues to be just as bad as it was before the surgery according to our last two sonograms. It could just be temporary swelling from the surgery, but our urologist is concerned. So tomorrow morning we go back to Columbia Hospital, where Susannah will undergo a procedure called a nephrostomy. Tubes will be inserted through her skin and directly into her kidneys. They will drain the urine and take the pressure off the kidneys. She'll be under general anesthesia and we may have to spend the night in the hospital.

How long the tubes stay in and what happens next depends on what they find when they insert the tubes and run a few tests. The only good part about all this is that her blood work continues to show that her kidneys are functioning well. The danger is that that could change if the pressure on the kidneys is not relieved soon.

I'm being sort of general because it is confusing what is going on and what has been going on since we first got this diagnosis a year and a half ago. Everything varies; everything is one step at a time. We know she feels better than she did three months ago. We just have to get through this next procedure and go from there. Yes, we are frustrated. Yes, we are exhausted. Yes, it could be much worse.

I mean, how adorable is she?? Look at how proud of herself she is, and we are too.