Tuesday, December 3, 2013

Our Thanksgiving Week...

This past week was quite eventful for us! We celebrated Thanksgiving, enjoyed our Home For The Holidays staycation, and for some of us, battled coughs and sniffles, and also a bad back! We all had our own reasons to give thanks and celebrate, including Maia. This 2013 Thanksgiving holiday was filled with family, friends, food, and fun... the way it should always be!

Wild hair during a wild week

Our holiday season started off nicely when our social worker, Judith, asked us if we'd like to stay at one of the local hotels for several days, during Thanksgiving week. It's called Home For the Holidays, when the hospital chooses 6 families whose child is hospitalized, to spend some time at a nice hotel. Despite living locally, she thought it would be a nice idea for us to get away from our house and stay at a nice hotel to rest and relax, and it would all be complimentary, including valet parking... of course we said "yes!" So our plan was to pick up Marcus from school then head over to see Maia, before checking into our hotel, the InterContinental San Francisco... our temporary home for the next several days! But while walking Marcus to school, Gordon and Marcus were trying to step on each other's head shadows... and to make a long story short, Gordon ends up on the ground on his hands and knees, in pain! He hurt his back yet again! Let's just say he walked funny in the days ahead! Anyway, we enjoyed every minute of our stay at the beautifully modern and luxurious hotel! Marcus actually insisted we live there and didn't want to go home! We all enjoyed the floor to ceiling windows with views of San Francisco and the bay, and also the indoor pool. It was also nice to be only a few minutes away from Maia at UCSF and not have to worry about traffic! Additionally, we were also closer to our favorite coffee place, Philz Coffee in the Mission! 

Marcus checking out the view from our room
Pool time

Monday might've started off rough with Gordon re-injuring his back, but it ended very nicely with our daily visit to see Maia! We walked into her room and was greeted by her nurse, Janet, who says to us "they're stopping her PD today at 4pm!" The Drs had discussed stopping her peritoneal dialysis before, but that's as far as it got, talking. So it was a nice surprise to have it finally happen! So after draining for 10 minutes, they disconnected part of the catheter and capped it off. The kidney drs. plan to watch her over the next couple of days and hopefully get a better idea of how well her kidneys are working. They also expect Maia to have her breathing tube removed soon, so they wanted to test her kidneys before extubation, in case she has trouble peeing and starts to swell, which may make it harder for her to breathe. So we've all been crossing our fingers for some good results!

The day before Thanksgiving we attended Marcus' Thanksgiving feast, where his class sang songs and then we all enjoyed dishes from each students' culture, so that everyone could try something new to eat. Marcus filled himself up with about 10 cucumber rolls (vegetarian sushi). It took forever for him to eat them though because he insisted on getting one roll at a time! While all the other kids loaded up their plates with chow mein, pita bread with hummus, cookies, and cupcakes, Marcus had one roll with an occasional watermelon slice! He certainly has a mind of his own and knows what he wants!... Crazy kid! We then had our family's annual Turkey Bowl dinner, held the night before the flag football game. This year (and last year too) Gordon and I opted out... we officially retired about 2 years ago! The following morning was spent at one of the local parks watching the family battle it out in this year's Turkey Bowl. It was an unusually warm morning in the Bay and we were all sweating by the end of the game, even those that didn't play, like me! 

Marcus' kindergarten class singing during their Thanksgiving Feast

Marcus watching Turkey Bowl from up in the tree
Unfortunately, by this time, both Gordon and Marcus had come down with a cold. Not a big deal, except when you have a baby who is recovering from the first stage of a three stage surgery... and that would be us! So they both had to stay away from the hospital and could not visit Maia for several days. A cold to us is such a minor thing, but if Maia gets a cold, it could cause a major setback in her recovery, and she may even die... so it's not worth it to come and see her when they're sick.

Thanksgiving dinner was at my parent's house where we had all decided that we didn't want turkey this year! None of us really like turkey and in years past, it seemed like such a waste to serve it while nobody ate it... so this year we happily agreed on having crab as the main dish! It is crab season and this year, we had no leftovers! We're actually thinking of having crab again for Christmas! I can't get enough of it... however, there are times I get an allergic reaction, so I do somewhat of a taste test. If my lips tingle, I stop. The times I didn't stop eating crab after feeling the tingling sensation, my lips got huge! (Similar to the movie Hitch and the benedryl scene! Not pretty). But this time, there was no tingling, and that was one thing I was thankful for this year! 

For the rest of Thanksgiving weekend, I visited Maia solo or with my brother. This included Maia's 3 month birthday, which was the day after Thanksgiving aka Black Friday. So we celebrated privately and quietly by reading some books, donated by an alumni family of the PCICU. Each time I entered her room, I was searching for the dialysis bag (dextrose solution) that usually hangs up high near her bed. For the last few days it hasn't been there! We are so happy that the Drs are giving her a chance to pee and show them that her kidneys can do the work. Of course this all isn't possible without the help of Maia's nurses. They, like us, are also her advocates. They know her as well as we do (and maybe even better!), so they've been making themselves heard whenever the Drs have wanted to start the dialysis again... Nurses, another thing we are so grateful for!

Maia at 3 months old
 On Monday, the Drs. decided to try and extubate Maia! She had been practicing for about a week while still on the ventilator. They do this by turning off some of the settings and having her initiate her breaths... they call it "sprint exercises" similar to incorporating sprints when running to train for long distance runs. When it came time to finally extubate her and remove her breathing tube, the respiratory therapist and nurse carefully removed the tape from her face, then placed the nasal canula, the small tube that goes into her nose, into her nostrils. Maia did not like this! I was able to sneak in between the Drs. and get a pic of her and her chubby cheeks, but she was so mad and I felt so bad for her... then they removed her breathing tube and she got even more mad! They gave her a pacifier and had me hold it in place. This usually calms her down right away... but not this time. I actually heard her try to cry too! She sounded like a little puppy with her whimpering cries! After several minutes, I could tell it wasn't looking good and they decided to put her tube back in. I was somewhat sad but also relieved to see her calm down again. She seemed to panic as soon as the tube was removed, which is understandable since she's only been without it for 1 day of her 3 month old life. Then after that initial shock and reaction, her breathing seemed too out of control for her to calm down and breathe on her own. It was a little disappointing but the Drs. quickly reminded me that it's amazing that we even got to this point in her recovery and that we shouldn't consider this a setback. It didn't go so well mainly because she wasn't strong enough yet and that all she needs is more practice, more sprint exercises, to build up her muscles and strength. Her blood gas results and her vital signs were all very good, so they said were very happy to see her do as well as she did... it's only a matter of time, and after she builds up the strength, they expect her to have no problems. It kind of reminds me of long distance runs... it's very hard to run a race with little or no training. The more you train, the better your results will be!

Waiting to be extubated
Maia during extubation

So like I stated earlier, it's been quite a week for us, as our roller coaster ride continues! During the Thanksgiving holiday is when most people reflect and think about what they're most thankful for... but during these last couple of years, I've realized that I should be grateful everyday for everything, including the good and the bad. We shouldn't be or feel thankful for just one day. We should always be this way, and just use the holiday as a reminder to continue being thankful and grateful. Without the ups and downs we've experienced, we wouldn't be who we are today. I truly believe that we are right where we're meant to be in life. God has a bigger plan for us, and he chose us to be the parents of Marcus, Marissa, and Maia for a reason... and for that we will always be grateful!

Hope you all had a wonderful Thanksgiving!


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