Saturday, September 5, 2009

New hospital. New doctors. New nurses. New blog. In a lot of ways the past couple of days have mirrored the days immediately after Charlotte was born.

While in Marquette her health was steadily declining with more frequent and deeper (less than 60%) desaturation episodes.

When she was doing well previously the ventilator oxygen level would be supplying as low as 21%, the same as room air. This week they were keeping it above 80% constantly and even at 100% she wasn't responding very well.

This all culminated with an episode late Wednesday afternoon when she was fighting the ventilator. Her respiration got so bad she started to turn blue and the nurses had to manually "bag" her to stabilize her.

Dr. Frei had been in contact with doctor's at Children's Hospital of Wisconsin in Milwaukee during the day and it was at this point, with her stable, that the decision was made to transport her to Milwaukee that evening.

On a positive note, from the night she was born to this decision to transport her, we have found that when a decision is made things start happening very quickly. Everybody involved is a pro.

The jet from Milwaukee arrived in Marquette around 9:45 and the team was at the hospital shortly after 10:00. From there everything ran very similar to the night she was born, only this time she traded four wheels for some wings.

I had left earlier in the evening to pack our things at Beacon house, gas up the car and purchase much caffeine for the drive. Around 11:00 p.m. EST she was stable in the transport isolette and was on her way. We followed them out and hopped in the car for the drive to Milwaukee.

We were blessed with a bright moon and no deer as we drove down through Escanaba, Marinette and Green Bay. I started to fade a little around Sheboygan, but we pressed on and pulled into Children's around 3:30 a.m. CST/4:30 EST. Charlotte had beat us by a good three hours and was resting.

Children's Hospital is operating on whole other level from Marquette General. Instead of one big NICU open space, there are pods of 5-6 rooms. Right now there are approximately 40 infants here. The hospital itself is enormous and we've managed to get lost more than once.

Once they briefed us on everything we were able to sleep for three or four hours in a room just upstairs from Charlotte's level. Then during the day we lucked out in securing one of the long-term stay rooms at the Ronald McDonald House directly across the road from the hospital.

The RMH is just as amazing as the hospital. Our "room" really is more of a suite and - drum roll - we have TV. Cable TV. The quiet and solitude of Beacon House was nice most of the time, but there were days, particularly stressful days, when watching stupid t.v. was sorely needed to zone out for a bit.

So after getting over the initial panic and fear when we found out she was being transported, we're comforted a bit by the knowledge that she is in the best place she could possibly be right now. If there is anything to be done for her they can do it here.

Not much has changed with her condition here yet. For now they are assessing her status and mostly continuing the level of treatment she was getting in Marquette.

They do think that much of her recent difficulty is related to pulmonary hypertension. The blood vessels in her lungs were constricted, causing weak blood flow. She is receiving nitric oxide now and that seems to have helped a little. She is still very weak and a relying on the ventilator completely, but she continues to put on weight, 2lbs 2 ounces yesterday. And she has a bow in her hair.

Kathy and Dennis, who happened to be on their way to Marquette for a visit when we called, arrived here shortly after Charlotte and are staying through the weekend.

Katie's joke is that we forgot to tell Charlotte that my graduate courses through UW-Milwaukee are online. She did choose my first day of "class" to move.