Wednesday, May 28, 2014

Almost Home...

As I sit by Maia's bedside, here in the hospital, I can't seem to go to sleep. It's Wednesday night and I'm having a sleepover with Maia in the Transitional Care Unit aka 7 North, so I can provide more hands on care, as the nurses teach and guide me along the way... Maia is coming home "soon" so we all have to be prepared! She is more than ready, so now it's our turn!!

Last day with a trach

It's been a very exciting week for us!... Last week's family meeting revolved mainly around the trach. Dr. Cohen, Maia's heart surgeon, and Dr. Chan, Maia's ENT Dr. had been going back and forth for days about whether to take her trach out or not. So Dr. Chan attended our meeting and gave us his input. He let us know that he's on the conservative side and likes to do things by the book, the way he was taught. This way, things are more predictable for a better outcome. He was extremely hesitant to decannulate a baby like Maia, who was only 8 months old. He was taught that it was better to wait until babies are at least 1 year old, so to him, Maia was still very young and may not be strong enough. Opposite of this was Dr. Cohen, who himself handled trachs when he was in London years ago. His approach is to take the trach out and see how the baby does... if the trach needs to be put back in, then they put it back in. So they reached a compromise of taking Maia's trach out again, and watching her closely to check and see how she does. They knew she would be fine for a few hours, but Dr. Chan was worried if after a couple of days, she starts to struggle and need the trach. If that's the case, Maia would need to go down to the operating room and have the trach surgically put back in. The stoma (hole) heals very quickly so they may not be able to just put it back in. So we were all in agreement that we would like to see Maia pushed, to see how she would do without the trach because as her parents, we knew she could do it. 

Waiting for decannulation!

So the following morning, Dr. Chan allowed me to do the honors... I pulled out Maia's trach for what could be the last time! They quickly covered the stoma with some gauze and Tegaderm. Maia usually goes through a mad phase which usually lasts for about 5 minutes, but this time she didn't. She was so calm! She didn't get mad, she didn't show any signs of struggle. She only got angry when they put the nasal cannula in place so that she could get some oxygen. After a while, we all felt confident that she was ok, so the Drs, respiratory therapist, and nurses left the room. Maia looked great! We constantly looked up at the monitors to check her heart rate, respiratory rate, and oxygen saturation. All looked good. She was off to a great start!

No more trach!

A few hours later, Dr. Chan came in to check on Maia before he left for the day. He was very pleased to see her doing so well! He was actually amazed! Dr. Sandrijn van Schaik, one of the critical care specialists told him that some babies just need that extra push, and they can do it. She said that Maia is one of those babies and that she's been unpredictable her whole life, so nobody knows what she's going to do... she's always done things her own way. Then she told him that he shouldn't feel bad because Maia has proven almost every doctor wrong, so he wasn't the only one!

Maia has continued to do well without her trach. The nasal cannula still bothers her, along with any sort of bandage that covers her old trach site. They replaced the gauze and Tegaderm with a band aid today but Maia has taken it off 3 times! So they said the site is healed enough where it doesn't need to be covered. Maia has done so well that she no longer needed to be in the PCICU. Yesterday, she was moved into the Transitional Care Unit... another sign that she's closer to coming home "soon." On her last day at 7 East (PCICU) the nurses got Maia a cake that had "Good Luck Mighty Maia!" written on it. They also made a poster for her with signatures from the nurses and staff... it was so sweet of them! We will surely miss them all!

Making herself feel at home at 7 North

Maia and her "graduation" cake

So today when we came to the hospital, I almost opened the door to 7 East! It was very strange not to go into that unit. We entered 7 North and headed over to see Maia, who was wide awake and watching some cartoons. We met her nurse for the day and then joined the Drs. and nurses for rounds. It was here we got an official discharge date of Friday... 2 days from now! We knew it was going to be "soon" but we didn't think she'd be ready that soon! Maia was doing great and they felt that there was really no reason for her to stay in the hospital any longer! They had weaned her meds to twice a day, her bolus feeds were every 4 hours, she was down to using only 1 Liter of oxygen... we were pretty much just waiting for her feeding pump supplies and oxygen to arrive at home. I was introduced to her new feeding pump earlier today and tomorrow we will be trained on how to care for her G-tube. They're also planning to wean her oxygen down to .5 Liters by the time we leave the hospital. Everything seemed to be set in motion. 

So happy her hair is long enough to braid

Today, Maia had her last echo before being discharged. This echo seemed to take forever! It didn't help that Maia had been fussy to begin with and didn't take her usual late morning nap. So after a few breaks by the tech and Dr. and a dose of Tylenol for Maia, they were able to finish... everything looked good, she was able to take a short nap. Maia is no longer hooked up to many machines, so she's able to be more mobile, especially when she's done feeding. We can take her around the hospital more since she only needs her oxygen for now, and it's much easier to get around. So today, we went on a wagon ride with Helen, her occupational therapist. First we visited 7 East to say hello to all our old friends! They were all so excited to see her! But I think Maia was wondering why everyone was staring at her! Then we decided to take her to the patio on the 6th floor. It was her first time outside! The sun was shining brightly so we found some shade, but it was still really bright. Maia tried hard not to squint and ended up looking so mad in her pics! She wasn't angry or fussy thought, in fact, she was very calm and relaxed. It was nice to go outside for a change and breathe in some fresh air and a nice cool breeze. After about 10 minutes, she started yawning and rubbing her eyes, so we headed back to her room. But once she was back in her crib, she was wide awake and just wanted to watch tv!

I think I could get used to this
Where are my sunglasses


For the past few days, Gordon and I have been constantly going over our mental checklist of what needs to be done at home, in preparation for Maia's homecoming. With the help of There With Care, a non-profit organization, that helps families with hospitalized kids, we were able to get the house cleaned, including the vents. We've also rearranged our bedroom to make room Maia. We have the carseat and stroller ready... I think we're ready... I think... then at the end of the day, they decided to change our discharge date to Monday, June 2! That made me feel a lot better! Although we're ready, we could use the extra days to be even more ready. I think we're just a bit nervous... but excited too! It's so hard to believe this is all happening right now! We've waited so long. We've waited 9 months! It will feel so weird to finally wake up and not have to drive to the hospital. I can't help but have flashbacks! Tonight is the first night since Maia was born, that I'm spending the night at the hospital. Tomorrow she will be 9 months old!!

So now we wait for Monday. In the meantime, we busy ourselves with preparations for Maia's homecoming! As I've said before, we are where we're meant to be... and everything happens for a reason!

1 comment:

  1. Wow, I'm so excited to hear that you guys are finally going home, and I'm so impressed with her progress. I know that you will do great with her care, but it might be a bit of an adjustment getting used to being without the security of the nurses and doctors right there. My advice is communicate often with your doctors (no question is too small), and trust your instincts. Finally, try to relax and enjoy being home!

    "Morgan's Mom"- Emily


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