Baby Steps...

The roller coaster ride that is Maia's recovery continues every day for us... it's the main reason we take things day by day, otherwise, we'd all be overwhelmed and crazy trying to deal with everything! This past week Maia battled through a fever and possible infection, and also continued moving forward in her recovery by taking her baby steps toward getting better.

Setbacks for Maia can be quite scary and discouraging. So whenever they happen, we just hope and pray she can overcome them. This past Tuesday Maia had a day where she was extremely sweaty. Her back and head were wet and her sheets were soaked! She didn't seem bothered by it so the nurses just changed her sheets. Gordon also mentioned that she's just like her uncle, who gets sweaty often, and that he himself gets hot very easily so it could be something that runs in the family. But the following morning Maia had a fever. The doctors immediately had some tests done and put her in isolation, meaning everyone that comes in to her room, must wear a mask to protect her. They also put her back on antibiotics. Her fever was gone the next day but she remained in isolation for a another day until some of the tests came back negative. For now they will continue to let the antibiotics finish their 7-day course. Fortunately, it seems as though it was just a fever and nothing else because her white blood cell count did not increase and she's showing no other signs of a possible infection. It could've been much worse but Maia recovered quickly and won this small battle!

Maia with her crazy hair

We also had one of our weekly meetings on Thursday. Some of us were finally able to coordinate schedules and get together for a few minutes. This week, the doctor was Dr. Peter Oishi, a pediatric critical care specialist for the PCICU. Our last meeting with him was a bit discouraging as he seemed to over emphasize all the negative things going on with Maia. However, we do understand his point of view and it actually helps to hear from someone who doesn't sugarcoat anything. He went over some of Maia's short term goals, including slowly reducing her vent rates so eventually she can be extubated (remove her breathing tube). A few weeks ago she was at a rate of 50 and today she is at 16! So we are all excited about that... it means we'll be seeing her face soon! He also mentioned that they plan to keep the dialysis the way it is and not make any changes right now so that more focus can be on reducing her vent rates. He talked about how Maia has overcome a lot but that she's still extremely sick. Anything is possible and that we should be prepared for anything and everything at all times. He also wanted us to be able to talk about anything to anyone. If we had any concern or felt uncomfortable with the way Maia is being cared for, we should let them know. Since Maia cannot talk and communicate her thoughts and feelings, he felt it was extremely important for us, her parents, to be her advocates. Dr. Oishi also stated that Maia is the only living baby that has this combination of HLHS and kidney failure. They know of no other baby that has survived this, so they're happy to see that Maia is a fighter and continues making small, important steps in the right direction. He, along with all the other doctors and nurses, love taking care of Maia... out of all the babies in the cardiac unit, she's been there the longest, so they've all bonded with our sweet baby girl.

Our little sleeping beauty

During our Saturday visit, Maia was very active. She was constantly trying to grab her breathing tube! Fortunately, her arterial line is now on her right arm, so she's unable to move it around as much. They finally took it off of her right ankle area where it had been for almost 3 months! Although it looked very messy, it worked so well that the nurses were hesitant to clean it. It's known for not getting infected so they never worried about it. But now it has a new home on her right arm and her ankle/foot area can rest and heal. That doesn't stop her from trying though! In fact, she kept swiping at it with her left hand. The bad thing about this is that her left fingers are still healing from not getting good circulation when she had an IV placed in her left arm when she was first born. Her fingers have turned purple then black. They have been slowly healing on their own but the doctors told us there's a chance she may lose her fingers tips! We were sad to hear this but considering her overall condition, we really didn't mind so much. Since then, only the very tip of the 3 middle fingers are black... and in the process of trying to grab her breathing tube, the black tip of her ring finger flicked off! I saw it all happen and let out a little scream! I was expecting the "tip" to have some finger flesh on it, but it didn't! Instead, it was more like a rounded black scab. When we checked her finger, we were all pleasantly surprised to see a nice fully healed finger! Yay! Now only 2 fingers are left with black tips! We're leaving them alone and the black tips can fall off when they're ready.

Maia waving with her black fingertips

On our visit this morning, the doctors mentioned during their rounds, that since Maia was getting close to extubation, it might be a good time to see how much her kidneys are working, by lowering her dialysis rate. This way, if she needs more breathing support, she can still get it since she's on the ventilator. So this afternoon, they started setting up this process. Since Maia will have to let her kidneys do the work, they anticipate that she might get swollen since her kidneys might not be as efficient as the dialysis... at least not yet. As a result of being swollen, it may put pressure on her lungs so they've increased her vent rate to 25 so if she needs help breathing, she'll have that support. They will watch her closely to see how her kidneys respond. If she doesn't do well, they'll put her back on her regular dialysis rate and continue reducing her vent rates until she can be extubated. If Maia responds well, they'll see how long her kidneys can continue to do the work, and slowly adjust the vent rates as needed. It's not so much a pass or fail test... everyone, including us, just wants to know how much work her kidneys are doing. If her kidneys don't respond well, they will wait and try again at another time since her kidneys might not be ready to take on the full work load just yet. We all just want the best for her so we're all very anxious to see what happens!

This week was also quite exciting for big brother Marcus. First, he celebrated his 6th birthday on November 16. Then Friday night he earned his blue belt in Taekwondo! He was also invited to the prestigious Black Belt Club and will be one of the youngest members! He didn't look nervous at all and his instructor, Master Perez, who was the Taekwondo gold medalist in the 1992 Olympics, said Marcus did an awesome job! We're so proud of our lil man! 

Marcus with Master Perez

Happy Birthday Marcus!

As a reminder, join us for the Hot Chocolate Run in San Francisco on Sunday, January 12, 2014. We will be making Mighty Maia shirts, available for purchase, so let us know your size and how many you would like to order! For more information, please refer to Gordon's post, "Message from dad..." and visit the website Hot Chocolate 15k San Francisco. Hope to see you there!