Where do we begin?

The Grateful Dead song goes "what a long, strange trip its been..." Well-- they didn't know the half of it.

After posting the great news on Monday night, life got a little interesting on Tuesday. Its a long story-- see below for all of the details-- but the short story is that on Tuesday morning, Madeleine went into respiratory distress and she ended back at Children's in the ER after taking another trip in an ambulance and was transferred to the CICU on Tuesday evening. Thankfully, she was released from the CICU on Christmas Eve as the doctors determined that her respiratory distress was related to a mechanical problem that shouldn't arise again. We were extremely relieved and grateful that we could spend Christmas morning in our home with our daugther and we're having a great time playing with her.

You're probably asking yourself, "How did you end back up in the hospital after being home for only one day." Well I'll tell you. Throughout Monday night and early Tuesday morning, Kirsten and I checked on Madeleine through the night as her pulse oximeter monitor kept going off. Normally, this isn't a big deal but we were on edge given that it was her first night home. Kirsten got up at 5:30 to see that Madeleine's sat levels were a little low and weren't recovering-- she's usually satting above 95% and she was at about 91%. She and the nurse talked and they decided to suction her as this is the usual solution for a child with a trach. Madeleine hates being suctioned-- try shoving a tube down your throat and see how you like it-- so they weren't surprised when her sat levels initially decreased to the high 80s but they were concerned when Madeleine didn't recover into the 90s. I came downstairs and after conferring with Kirsten and the nurse, we decided to change the trach as there are times when the trach can become plugged and no matter how much you suction, Madeleine won't recover. Again, this frustrated Madeleine and her sat rates dropped a little lower and she failed to recover. We continued to be frustrated and decided to re-position madeleine a number of times expecting that if she could get comfortable, she'd breathe easier and her oxygen levels would recover. We continued doing this for about an hour when we finally discovered that the oxygen supply had been disconnected from the ventilator explaining why Madeleine was satting at a lower level. When we hooked up the oxygen, Madeleine's sat levels recovered and she calmed down. At that point, we realized that Madeleine needed to be suctioned again but we decided that we would let her rest for a while as she'd been agitated for well over 90 minutes and we didn't want to suction again and bother her. This was the regretable mistake we made.

I went to work and Kirsten cleaned up a bit and then jumped in the shower. When she got out of the shower, she could hear the pulse ox and the ventilator alarms going off so she hurried downstairs to see Madeleine again in respiratory distress. She and the nurse suctioned one time and were able to get some secretions out but Madeleine was in severe distress-- her sats were in the 70s and falling and her heart rate was also falling. Not knowing the exact cause, Kirsten dialed 911 and an ambulance picked them up. I received a call at work-- after being in the office less than 5 minutes-- and I ran out the door to meet them at Children's Emergency Room. Once in the ER, the nurses assessed the situation realizing that Madeleine's trach was plugged and immediately replaced her trach. There was concern that Madeleine's pulmonary hypertension was a root cause and/or an infection was related to the distress so they did a full work-up on Madeleine necessitating the admission to Children's and the transfer to the CICU. In the end, all tests came back negative and after a short 36 hour stay, we were released on Christmas Eve with the best Christmas present in the world.

Kirsten and I were a little embarrassed by our sudden admission to the hospital but we learned a great deal from the entire episode and in a strange way, it was very nice to see all of the doctors and nurses that cared for Madeleine for so long. (On a side note, one of her long-time attending doctors walked up to me and said "Man, she wasn't even home for 24 hours?" and walked away smiling.) We were able to talk through all of Madeleine's issues one more time and they really helped us put things in perspective. Additionally, we could show off how much Madeleine had grown in her three week stay at HSC and we now feel much more confident in our ability to handle Madeleine while she's home.

As far as getting her home, we were pleasantly surprised on Christmas Eve when our doctors decided to release her after they were convinced that her admission was simply related to the mechanical eror of her trach getting plugged. When we arrived home on Christmas Eve, the entire transition went much smoother and we had a wonderful Christmas morning that we spent opening gifts and getting used to moving Madeleine and her equipment through the house.

Since Christmas, we've had a wonderful time relaxing at our house-- the kitchen remodel is really paying off-- and we're learning to work with Madeleine's team of nurses. Through this Wednesday, we have full time nursing and then our hours cut back to 18 hours per day. With that schedule, we'll have nursing at our house when we're sleeping as well as when we're at work but will also have some time alone with Madeleine each evening. As you can imagine, we're ecstatic by all of Madeleine's progress and we hope to continue to post the good news-- look for new pictures shortly of both Madeleine as well as the completed kitchen.

Thanks again for everyone's support. We hope your holidays are as relaxing and happy as ours.

Brent and Kirsten