Tuesday, May 6, 2014

The Day of the Glenn

Monday, "CINCO DE MAIA"... surgery day!

The day started out early since the night before it was hard to go to sleep with so much on our minds. We kept thinking about the good and bad of what can happen, and what has already happened since her first surgery, the Norwood. We don't want any of these bad things to happen again, such as the kidneys failing and having to keep her chest open. We kept our focus on the good, the positive, and praying to God that all goes well, whatever the outcome may be. We started our morning getting up a little after 5am and then got ready and headed out to Philz coffee in the Mission. We got there when they opened and got our "cups of love." Then we headed to UCSF which is just over the hill from Philz. We arrived in Maia's room around 6:30am and started cheering her on. She was a little confused mainly because she's never seen us there that early! Maia was already up and smiling, ready for the day, ready for her Glenn.

Sitting up with daddy

We were told they were thinking of taking her within the next 1/2 hour (before 7:00am), but that turned into a little over an hour. It worked out great because we had more time to spend with her before walking her down to the operating room. I gave her a pep talk, letting her know "you got this, handle it, you're strong, you're mighty."  As she grabbed onto her trach I told her "if you want this completely out after the surgery, you have to show the staff you can do without it, show them with your stats, with your breathing and hopefully we will not have to have a trach again!." She looked into my eyes the whole time and I know she understood me, I know she heard me. The time was coming as the anesthesiologist came in to prep her and take her down to the operating room. They were talking to Maia and reassuring her that she is safe and listening to us talk to her as we kept telling her "you got this!!!"  Nurses, Drs and other staff members stopped by periodically to cheer Maia on and tell her we will see you later today, with big huge smiles...
The time came to walk her out of her room. She was slightly asleep at the time, then opened her eyes when she felt the bed rolling. We walked down the hallway, through the double doors and then into the elevator. We were by her side the whole time, talking and cheering her on. We got into the elevator and as she held my finger I kept telling her "show us all how strong you are." The doors opened and we were on the surgery floor. We walked with her until we reached the double doors leading into the operating room, then stopped to tell her our goodbyes, kiss her and tell her we will see you later and we love you... Then they wheeled her off into the operating room section of the hospital and we headed back up to her room.

She fell asleep right before heading down to the OR

Now the waiting starts. We kept ourselves busy by helping clean her room and going through all her toys, blankets, headbands and all the stuff she has collected over 8 months. Six full bags later and her favorite stuff set aside, we stepped out so the staff could finish mopping her room up. After taking down the bags to the car and coming back we sat and rested as we waited for two of her God parents, Frank and Lydia Ibarra to arrive. Thank you for enduring the traffic and the long drive... We love you guys. After they got here we went to brunch and got much needed fuel for the day. It was really nice to get away for a couple hours and rest our bodies and minds from what has been going on. During brunch Rizza was sitting next to me and her phone rang, it was UCSF calling. As everyone at the table got quiet and tried to listen in, I stared at her face and expressions to see what I could figure out without hearing the conversation. When she first picked up the phone and looked at who was calling and getting on the phone, she did not have a worried look but a look of "why are they calling so early?" We have been preparing for the worst but praying and hoping for the best, so to us this was still an early call, only a few hours had passed since we left Maia's side... The call, let's get back to the call... Okay. As Rizza listened and we noticed her facial expressions were all good and all positive. She got off the phone to tell us they are close to being done and that Dr. Gordon Cohen, Maia's surgeon, was going to come talk to us in about 1/2 an hour. We told them we went out to eat and would be back in about an hour or so since we had not even got our food yet. We were all delighted that we were already called, being we were thinking the worst that we probably would get a call around 5pm. So we all got our food and ate and then made our way back to UCSF. We get back to 7 East and they call Dr. Gordon to come and talk to us. A short time later he comes in all smiles with his broad shoulders upright. He goes on to tell us everything went great, better than expected. We all say that because as you all know, Maia has not followed what is normal, she is on her own timeline and does what she wants. So Dr. Gordon went on to tell us about the some details of the surgery and answered any questions we had....

Then we just sat and waited for the 1/2 hour call, that lets the staff know that she is ready to come up. During that time, nurses and Drs circled outside her room checking on when is she coming up. The call came in and everyone started getting ready and then it was time... she was coming up. We then exited her room and went to the family lounge to wait until she was all settled into her room and ready for some visitors, for us to give her a kiss, for us to keep cheering her on. As we sat patiently and happily waited, Uncle Bobby and Auntie Violie showed up. It was really nice of them to come cheer on Maia and they even had there Maia Knows Heart shirts on. We all just hung out. Then we see the surgical team and anesthesiologists wheeling Maia by in her crib, so we knew the time to see her was coming closer. About 15 mins later anesthesiologist, Dr. Hung Nguyen, came in and updated us that she did great, she is such a warrior and she did better then expected since we all remember how she did after the Norwood surgery. He told us she should be ready for us to go in about 15 more minutes so we waited 20. Rizza went in just as one of the nurses was coming to get us. Rizza and Rommel went in first and then Rommel came back to get me and I went in. So happy to walk down the hall, so happy to go through the double doors and then to make the left turn into her room. I see her laying there with the tubes and wires all in and coming out of her. Did not bother me one bit as I know this is part of the healing process and this will make her better. I did look to the right side and saw that she already had peed in the little collection case. Yaaaaah! That was a concern at one point, but when I talked to Dr. Gordon, he was not concerned since he knew that she would do great, and like always, he was 110% correct.

Maia post-op pic, 3 chest tubes, 4 IVs, catheter, breathing tube

We continued on with the day by Maia's side, cheering her on with all the nurses and Drs. At about 7:30pm it was time to go home and get some much needed sleep and most importantly, update Marcus and check if he had any questions and show him we love him so much. We get home and he is so happy to see us, as we are to see him. Big hugs all the way around... We talk to him and see how his day went, at school, at Lala's work and back at home. He had a good day. He was not ready to ask how Maia was and I did not push it, then after a bit he asked how is Maia. We talked to him about how good she is doing, but at the same time we held back a little because she is going to get puffy from the surgery much like what he saw before, after the Norwood, or at least that is what we were thinking. We let him know that all the DRs and nurses are so happy baby sister Maia is doing so good. Then we went on to tell him we think the best day to come would be Thursday, on bingo day (normally he comes Tuesday which would be tomorrow). We as parents were thinking the day after the surgery may not be the best day, since we do not know how puffy she is going to be. We put Marcus to bed and then we also went to bed soon after as our adrenaline from the day went south and we were exhausted.

Tuesday, first day post-op

A little swollen, but looking good
We left early Tuesday (this morning) stopped to get our cup of love at Philz in the Mission, and I got my large "Anesthesia" and made our way over the hill to UCSF. Today is a Marcus day, so I come to see Maia and then take off to pick him up from school. He does not know that I am picking him up and does not know I am taking him to DB (that is Dave and Busters) to play games and to have fun. We support this little big guy as much as possible. As much as we went through the past couple years, so has Marcus. We always remember and take into consideration that as adults we can express and talk about what are feelings are and it is harder for kids Marcus' age. This gives me and him time alone together and time to talk and just concentrate on daddy-Marcus time. We as parents always want the best for our kid(s) and through experimenting, talking, watching his behavior, have found that he needs daddy days, mommy days, and needs to be shown that through all the turmoil that is going on, he feels loved, liked, appreciated, and that he is the first born (only child syndrome), I say this because it is a characteristic kids have and we recognize it, and make sure he knows we are always, and will be, by his side no matter what. We all love this lil guy so much and as he grows we want the best for him mentally, physically and emotionally.

The past couple of days have been crazy, but for now we can relax a little bit. It's such a big relief to know that so far she is doing great. Again, we want to thank everyone. This all wouldn't be possible without all the love, support and prayers we have received, and continue to receive, from family, friends, and the caring strangers that pray from near and far. We've been through so much already and we know there are more ups and downs to come in this adventure we call life. We're so blessed and grateful to have everyone be a part of the Mighty Maia Fight Team!!!


  1. Wish we could be there everyday by Maia's and the Mead's side but near or far you all are in our heart's and prayers , for sure! Definitely cheering baby girl Maia on wherever we are at , keeping faith knowing that our lord is with her with every step she takes to live her life to the fullest. Love you all , much love Frank and Lydia Ibarra.

  2. So relieved for you guys that things are so far so good! Go, Maia, go! I'm cheering you on from my little island in the South Pacific. Think of you guys whenever I put on my Mighty Maia shirts and have been praying for her, especially for the Glenn.
    Also, just wanted to encourage you guys that it sounds like you are doing a great job with Marcus. It's neat to hear of the things you have learned about how to show love, teach and raise him in the midst of all this. You guys are doing awesome with him; keep it up!
    Love and prayers!


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