Thursday, December 19, 2013

Forward Progress...

It's been a while since my last post! Time has been flying by, especially now that Christmas seems to be creeping up on us! We've been keeping busy with Marcus and his activities, some online shopping (thank you Amazon!), organizing and preparing for the Hot Chocolate Run on January 12, and lately, we've been trying to sneak in a morning walk or jog to get some sort of exercise! All this while trying to continue to balance our hospital life and our home life....

Maia has been pretty stable lately with no major changes after moving into a crib 2 weeks ago. Much of the discussion about her has been about her PD (peritoneal dialysis) catheter. Her dialysis was stopped 3-1/2 weeks ago on November 25 and she's done well enough that Drs. agree she doesn't need it right now. After her first week off dialysis, the kidney Drs. were worried that she couldn't balance her fluids and that she would start to swell. Maia did gain weight that week because of fluid retention so they actually tried to restart her dialysis... but it didn't work! The catheter seemed to be blocked. They even put in a special solution hoping to dissolve whatever was causing the blockage, but that didn't work either. So at this point, they couldn't restart the dialysis even if they wanted to without performing surgery to replace the catheter. So they capped off the non working catheter again and each following day, it was discussed whether or not she needed dialysis and/or the catheter. While all this was happening, Maia started to lose some fluid weight, meaning her kidneys were adjusting to not having the dialysis, so the discussions continued about whether or not she needed the catheter. The kidney Drs. wanted to replace the catheter with a working one, so if she needed dialysis again in the future, Maia wouldn't have to undergo another surgical procedure at that time. But before any decision is made, Maia's team of cardiac, renal, and ICU Drs. all wanted to be on the same page and they wanted to hear each other's opinions. So for days, we were updated on how the daily discussion is still ongoing and that no decision has been made yet! It was a little frustrating but we got used to it!

We also had our weekly meetings with Maia's Drs.... Last week's meeting with Dr. Patrick McQuillen left us feeling a little down. He explained both the good and the bad things going on with Maia, so it felt like a roller coaster ride that ended badly. He mainly pointed out that although she's making progress little by little, day by day, the bigger picture of her prognosis didn't look very good, especially since there is no baby that has survived this combination of HLHS and kidney failure. He made it a point to emphasize "quality of life" and if we ever felt that Maia has been through too much and was suffering too much, to let them know... and although we've been told this many times by different doctors, it still hurts each time they say it. It didn't help that the way he explained things was by mentioning one good thing, then countering it with a bad thing, so our emotions were dragged up and down continuously! But at the end of the day, our feelings remained the same... we would continue the fight! Knowing how sick Maia is, we all agreed that she looks strong and is very alert. She's come a long way in her recovery and has continued to amaze everyone!

This week's weekly meeting was held today with Dr. Sarah Tabbutt. Thank goodness the meeting was with her because I think we needed to hear some positive things today! Since we all know the seriousness of Maia's condition, she focused on the next steps of her recovery. She also explained that many discussions were taking place regarding Maia's progress and recovery because many times, the Drs. are unsure of what to do since we are all in "uncharted territory," and do not have another case to refer to or draw experience from. She doesn't like to focus so much on the big picture, because for Maia it's difficult to look that far ahead... and when they do, it's usually nothing good since no baby has survived what she has! Anyway, she updated us on what decisions have been made so far regarding the PD catheter. Maia has been scheduled to go to the operating room on Friday to remove the old catheter and replace it with a more permanent type of catheter. The non working catheter is a temporary type and the more permanent one will have less chance of blockage. Although they are replacing the catheter, there are no plans to restart the dialysis. They just want it set up in case she needs it in the future, but since they don't know if she'll need dialysis again, she may never even use it. Another thing discussed was a tracheostomy, a surgical procedure that creates an opening into the trachea (windpipe) in the neck where a tube is placed into the opening to create an airway. This would take the place of the breathing tube that's been in her mouth since birth. She would wear a strap or collar around her neck to keep the tube in place, but her mouth and face would be free of breathing the tube, making her able to cry and also move her head around. This would also make it easier for her to do more "sprint" exercises and practice breathing on her own until she can have the trach tube removed. Another reason they feel this would be better for Maia is because she's almost 4 months old and this would help her development with being able to move around more and expressing herself by crying, something healthy babies her age have been doing for a while now. This was all discussed at the meeting and Dr. Sarah left early to check on a patient. She then returned several minutes later, after speaking to Dr. Gordon, the cardiac surgeon. He suggested having the trach tube put in after replacing the catheter. It would add only 20 minutes to the surgery time and this way, Maia wouldn't have to have a separate surgical procedure to put the trach tube in. So we agreed that it might be best to get it both done at the same time... So here we go again, another trip to the operating room! Once again we are excited and nervous. 

Being in "uncharted territory" feels like both a good thing and a bad thing. Good because Maia has made it this far, while no other baby has, and bad because the future is unknown and statistics show it doesn't look too bright. But I think I've mentioned before how I feel about statistics... I don't put too much thought into them since for the past 2 years or so, we've been that "1" out of hundreds of thousands that this could happen to. We've been told not to worry because the chances of something happening are 1 out of hundreds of thousands (I don't have exact numbers, but I'm hoping you know what I mean.) We joke around and say we really are the "chosen one." For once I'd love for Maia to be the "1" that proves everyone and everything wrong... to be the "1" that survives this and opens up new avenues for different treatments to help future babies!

The holiday season is a time for family pictures. So this past week, Marcus and I went to the mall to take his annual pic with Santa! He told Santa his list: Crayola Melt & Mold Factory, construction paper, and a red pillow case! Every year it seems Marcus' list gets more unique! I guess Santa agreed to try and get these for him cuz they sealed the deal with a fist bump! Santa also came to visit Maia at the hospital! Unfortunately, she was asleep at the time, but I was able to dress her up in her Santa bib for the special occasion! I'm hoping Maia isn't too sleepy next week for Christmas, so that we can take some family pics with her!

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