A Closed Chest... Yay!

This morning started with a call to Maia's nurse to check how she was doing. The nurse said Maia had a good, restful night and was doing well this morning. Today, we also had a meeting with Dr. Cohen, the surgeon, (aka "the other Gordon"), along with some of the cardiac doctors and nurses, and also the social worker... to discuss the next steps for Maia and to see if we have any questions or issues we'd like to talk about with them.

We arrive to a quiet and peaceful cardiac unit, a rare sight when compared to the last few days! The nurse says Maia's been doing well and resting. Our first glimpse of her today and she looks good, very good! Yesterday, she looked good but a bit tired and sad... but seeing her today we noticed she looked a lot better, and we can also see her bed! There were fewer tubes and lines criss-crossing around her! This sight made us so happy! She was still asleep so we did our best not to disturb her.

Next we had our little meeting with some members of the cardiac team. Dr. Cohen explained that this time around, Maia handled the chest closure extremely well and her blood pressure went up immediately after it was all done, unlike the first time. They also removed 3 of the chest tubes and the cannula (tube) in her thigh that was being used for dialysis. She's on very little medication right now and is tolerating everything, especially the chest closure very well and the doctors are all pleased. For now she will remain on the ECMO heart/lung machine, which is also doing the dialysis. Dr. Cohen says Maia's heart is fine and is actually doing most of the work on her own, so he would like to take her off the heart support in the next few days, and just keep her on the lung support and dialysis. They would like to slowly wean her off the machine little by little, and see how she progresses. This past day has been her best recovery day so far and we're all hoping this continues.

Maia getting some rest

Maia, eyes wide open & checking out what's going on around her

After our meeting with the doctors and nurses, we go back to Maia's room to spend some more time with her. Like always, she seems to recognize Marcus' voice and immediately wakes up and opens her eyes! Marcus says he learned a new song in school today and sings the song to Maia, who can't stop staring at her big brother. Afterwards, she gets a pep talk from mommy and daddy before falling asleep again. Although we know this is just the beginning, we are all so happy to see her doing so well. She's beginning to make some progress in the right direction! It's been a rough 3 weeks and we only hope to move forward from here! 

Marcus serenading Maia

Once again we'd like to say THANK YOU to everyone for their prayers, love, and support... our family is truly grateful and we cannot thank you enough! We are blessed.

Another New Machine...

So the other day, we were introduced to another new machine... It's a heart/lung machine aka "ECMO" (extracorporeal membrane oxygenation) that will help Maia's heart and lungs rest while getting her ready to have her chest closed, hopefully with better results this time! The doctor explained that this machine is usually used for patients in heart failure, but in Maia's case, they are mainly using it to rest her heart, which allows her to be off her heart meds, and will help her kidneys not have to work so hard to flush out all the fluids, all to help shrink her down in preparation to have her chest closed... well, it's working nicely. However, it's quite intimidating to look at! The "circuit" connects at the right side of her neck and uses 2 large plastic tubes that moves her blood to and from the machine. Today she looked tiny and Gordon and I wished they had a machine they could hook us up to so that we can shrink down too!! Of course, this was not without some complications... Maia seems to need attention about a couple of hours before we arrive, almost everyday! It's never anything too serious, but whenever we arrive to see her, we usually have to wait about an hour or so because some procedure needs to be done on her... or there's a bunch of nurses scrambling around her little room figuring out the correct numbers and levels for the machines, and there's just not enough space to visit since all her machines take up so much room! So today, 2 of her lines started leaking because she's been shrinking, the opening for her PIC line in her right thigh has come loose, since the hole doesn't necessarily shrink along with her body. This line in her thigh was being used for dialysis. Same issue with the lines in her neck that connect to the new heart/lung machine. So they decided to not use the line in her thigh altogether and since this new machine can also do dialysis, they will use the same circuit that goes in through her neck for dialysis also, which is good since it's one less machine.

The doctors have also decided to close her chest tonight... again. We're hoping and praying for better results this time! While in the operating room, they will also take her PIC line out of her thigh and allow it to heal up, and fix and clean up the leak at her neck. I called to check up on her tonight and her nurse said they just brought her back to her room about an hour ago and she's doing well. She won't wake up until tomorrow, so I'm getting excited about seeing her! Gordon's been working half days so he gets off work around 12:30pm and Marcus is out of school at 12:20pm... so we'll all head over to the hospital once they're both out.

I don't have any new pics this time, mainly because my phone broke! Booooo! I hate when this happens. I don't even know how it happened, but the other morning when my alarm sounded, I couldn't turn off the alarm! It was around 6:00am so I was barely awake and couldn't see anything, but I felt a thin crack on the screen. Later in the morning I looked at it more closely and noticed a crack that branched out into 3 more cracks... and nothing on the touch screen worked! So I went to Best Buy and talked to the Geek Squad... ended up getting a loaner phone since my phone was on back order. So I'm hoping sometime this week I'll get my phone cuz this loaner phone sucks! For now I guess I can use my regular digital camera, I just have to not be so lazy and upload the pics after I take them!... so we'll see how that goes! For now I just can't wait to see our lil munchkin! 

Thanks again to everyone for their thoughts and prayers! We can't thank you all enough... hoping after this chest closure Maia can move forward in her recovery! She's such a lil fighter and is so strong despite everything she's already been through... we can't wait until she's well enough to meet everyone!

Banana Peel Patch 2.0

Getting a phone call and seeing "UCSF" in the caller ID any time of the day gets our hearts racing! Getting that phone call around midnight is just a lil more nerve racking! That's just what happened when we got a call from Maia's nurse Wednesday night. She called to let us know that the doctors have decided to reopen Maia's chest and it was all happening in a few minutes! They were having difficulty stabilizing her blood pressure and felt the best thing to do was open her chest again. The contraption they had made wasn't enough to raise her blood pressure... so now it feels like we're back to square one!

Banana peel patch 2.0

A couple of hours later, just after 2am, the nurse calls again to let us know that everything went well with no complications, and Maia again has her "banana peel patch" on her chest. I call again later that morning to check to see how she's doing and the nurse says she's doing great, much better than yesterday. She's responding well to getting her chest reopened and she's already opened her eyes and has been looking around. The nurse added that it seems like Maia just wasn't ready to have her chest closed because she's doing great now... which sounds good, but not really, since this is a step backwards in her recovery. Later that day when we arrive to see her, she's a bit swollen again and back on dialysis to help her get rid of fluids... again. For a change, there's not too much activity going on in her room though! She's still somewhat sedated to prevent her from moving around too much but once in a while, she opens her eyes to check out what's going on around her. Maia looks pretty good, considering everything she's been through, which sometimes amazes me because of all the tubes and lines attached to her, and the many times she's been pricked and poked, I just don't expect her to look good... but she's a fighter! The nurses always tell us that she tolerates everything so well and despite everything she's been through, she's still so cute! Of course, we totally agree because her cuteness is so hard to ignore! One of her nurses mentioned that the other nurses fight over her because they all want to be Maia's nurse! Every once in a while we'll see other nurses who've taken care of Maia before, pop into her room to see how she's doing and say hi to us.

Overall, we know that this is just the beginning of our roller coaster ride... there are many more ups and downs to survive! Tomorrow is a new day and a chance to move forward and be grateful for all the things we've been through, both positive and negative. It's sometimes hard to appreciate all the good things in life, but when you've survived so much in such a short amount of time, you learn to appreciate everything, including all the baby steps!... eventually, all the baby steps will add up! This is where we're meant to be now, and we'll get where we need to be sooner or later! God is good!