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Friday, August 25, 2017
Mason bounced back after we got home like nothing ever happened. He is so resilient! I only wish we could somehow match his endless energy! He is now back to school full time and loving every second of his new 3rd grade class and teacher. He forgets or doesn't care that he still has large incisions still healing 🙈. Keeping him subdued is, well, impossible, so we are just hoping he doesn't tear it open in some crazy way and we come out of this on top with no trips back to the hospital! Thanks again for the great support!! 😘
Sunday, August 20, 2017
💗You guys!!! We are blown away, in absolute awe, & so grateful for the outpouring of love shown to to this little boy of ours!! Countless people from the neighborhood gathered to welcome Mason home from the hospital! I am humbled and so so touched that people would take the time out of their Sunday to come!! We have the best friends!!! People cleaned our house, mowed our lawn, sent letters, well-wishes, brought dinner, made signs, helped with child care, and showed their love in many other ways. 😭😭We have no words to describe how full our hearts are and how blessed we feel to have such a support system around us! 😘😘😘☺️ THANK YOU!! #ohmason
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Saturday, August 19, 2017
"Is there gonna be a limo waiting to pick us up?" 😂 #iwish #ohmason #homeagainhomeagainjiggetyjig!
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Friday, August 18, 2017
And he asked this volunteer ever so sweetly if he was from China. 🍜 #prettysurehewasnt #ohmason
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Making himself at home amidst his admirers! He looked up his favorite songs on the nurses computer and of course dance and sang them. I wish I would have been faster to get on video him dancing and singing and "dabbing" down the hall and back. He had the whole wing in stitches and wanting to watch the show he put on. #ohmason
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Thursday, August 17, 2017
Good news! Mason is now off pain meds, oxygen, and the iv (if he keeps drinking). He can eat now and so far it has stayed down. He's in good spirits but still somewhat subdued than normal (which I'm perfectly fine with 😉). He's happy and hopeful we can get a release late tomorrow or Saturday. We still have concerns with his distended belly and other things so we aren't out of the woods just yet, but the end is near! Thanks for your continued support and prayers! We have been touched deeply with the compassion and love shown to us in so many ways! 💋 #ohmason
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Wednesday, August 16, 2017
Mason is tuckered out after the most active day he has had since the surgery. He got to play BINGO and wanted to go in the playroom to participate. He sat next to a volunteer teenager and told "you're so beautiful!" We played a lot in the playroom today with his siblings and he joined us for lunch in the cafeteria. His play looked more like sitting in a chair watching kids play, but he was up and out of bed so I let him sit there as long as he wanted. It's looking like we will be here a few more days yet (best case scenario). #ohmason
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Tuesday, August 15, 2017
Now that's the Mason I know! The surgical team walked in while he was wearing these and he wouldn't take them off. Some of the team came back later when we were telling jokes. The team asked Mason if he knew any jokes and he said without missing a beat "What do you call a camel with 3 humps?" They asked "What?" And he couldn't remember the answer 😋. We discovered later it was from Zootopia and the answer is "pregnant." 😂. After he tossed his cookies he was feeling much better and wanted to go on the outdoor patio. He was waving the non-iv hand and doing the ghetto-neck movement to "Just Dance" and "Watch me Whip" to name a few. It's nice to have him feeling a little more like himself. Poor kid can't eat but that doesn't stop him from dancing!🕺🏼#ohmason
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We got Mason up walking today a few times and then let him snag a wheelchair when he got tired. He was not up for the playroom but did sit and play a minute at the piano. He threw up last night and didn't want to eat anything all day until later tonight. Annnnnd that came up, too. The doc said it's a sign that his bowels aren't working yet and it's a waiting game until they kick it in gear. He has a lot working against him, so this just means more time at the hospital. He is off oxygen ish--just needs it here and there when he sleeps. He is maybe in slightly less pain, but now down to Tylenol through his IV (which he is still on 24 hours daily). We told the doc he won't take anything orally (he gags before it even touches his lips) so they are worried about how his pain will be managed going forward. Basically, given our options, he will just have live with the pain and we just pray it won't last too long! We will see what tomorrow brings. 🎹 #ohmason
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Monday, August 14, 2017
Sunday, August 13, 2017
This captures my relationship with Mason. I have been with him at 99.9% of his doctors visits, hospital stays, therapies , etc. The .1% is when his Dad comes to my relief. I don't like to leave him (especially when he's in the hospital) because I just couldn't bear not being there if something happened to go south. I know him well and, given our history, I am slightly paranoid and so I make sure any sign of respiratory distress or pain is addressed to immediately (mostly to ease my mind). There have been times when my paranoia (or is it "mothers intuition"?) has paid off so I probably won't quit anytime soon. 😊 I guess what I'm trying to say is that I love this child to the core and I know without a doubt the Lord is with him--with us. Some people bond with their kids over sports or other activities; our bond was solidified in the doctor's office. It's our "thing." Hey, I'll take it. #blessed #ohmason
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I can only attribute his rally today to the many people who have expressed love and sent prayers our way. They finally got a handle on his pain and he perked up towards the end of the day (since he was catching up on sleep he lost last night). He even cracked a smile and said a few words! He walked twice and wanted to hang out in the Ronald McDonald room at the hospital that overlooks the city. FYI-the Room contains a few private rooms where tired parents can take quiet naps, washer and dryer, a living room-type area, computers, and a stocked fridge and kitchen free to the parents. Most days at 6pm people sponsor a dinner and anyone can come eat for free. These amenities help offset the cost of eating out every meal, give a place for families (like mine) to spend time outside the stuffy hospital room. If you are ever looking for somewhere to donate to--that's a good option. Anyway, back to Mason. He is now off the morphine drip (but can have it if he needs it), on a plan of Tylenol and Ibuprofen (toradol) and best of all--his bowels are showing signs of working again!! 🙌🏻 We are so thankful. #ohmason
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You know you are a hospital family when your kids are excited to go visit. "Yay! They have toys there! Can we play in the playroom? Can we eat in the cafeteria?! Is it my turn to watch cartoons?!" 😊 Mason's pain was managed pretty well during the day yesterday but man, the nights have been brutal. Lots of pain and last night not a lot of sleeping for either of us. He was throwing up and just really struggling. He was sweaty (we think because of the pain), and his belly is quite distended. All this is likely just part of the healing process. I feel kind of silly sometimes documenting the details but for some reason I feel like it's important to share. I also know that within a week's time or so all this will be behind us and it will just be a blur. The body is an amazing thing! #ohmason
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Saturday, August 12, 2017
It was a rough night last night. His BP, Pulse Rate were sky high and his oxygen sats kept dropping. He isn't taking very deep breaths because of the pain he is in. He's been sleepy and lightly moaning in his sleep😔. They are working on getting him different meds that are more effective and don't make him so tired. We got up and walked today and we had to get a wheelchair to take him back to the room because he just couldn't take one more step. But! He is in good care and we are just taking baby steps to get him healthy. #ohmason
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I tried to do a Facebook/Instagram Live concert but the connection was spotty so it was a little shaky (and it was my first time doing it) but I wanted to share the moment with everyone. To rest in between Mason's walk, we stopped at the piano. His dad played and played and Mason was sleepy but didn't want him to stop! His cute little finger was tapping to the music and loving every second. It was magical💕! He loves music so much he even yelled out in his sleep (after not saying anything all day) "Alex Boye!!!!!!"😂 Huge Fan! @alexboye4 #alexboye We kept him out a little too long because when he got back to the room his Oxygen Sats were ⬇️ (next time we will take the oxygen with us). #worthit
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Friday, August 11, 2017
🌟3 Nephi 17:23 "And he spake unto the multitude, and said unto them: Behold your little ones! 24 And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and encircled those little ones about, and they were encircled about with fire; and the angels did minister unto them." Prayers and angels are real! Mason's doctor gave him the goal of "sitting in a chair" today and he walked clear down the hall and back! Awesome! This pic makes it look like Spider-Man is telling Mason to go to Jesus...and I I kind of love it. 💫
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This pic is obviously not from this hospital stay but they all start looking the same after awhile so I wanted to break it up. Mason is now on some oxygen because anesthesia and pain meds somehow make his oxygen saturation numbers go down. This isn't unusual for him so we know it's a waiting game and they will be back up soon enough. He's been good about telling us if he's hurting this time around. Normally, his pain tolerance is so high that we don't know he's hurting --usually we just guess by watching his pulse rate. This morning he whispered "mom...stomach huuuurts" so we knew to get him some relief. Hopefully this communication continues. It's hard to watch your baby hurt or in his case, suffer in silence.
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Thursday, August 10, 2017
The aftermath. They did an incision below his belly button and a few small incisions on the sides if his abdomen. The tube is placed in his belly button to keep the hole open where we do nightly flushes and run a fluid solution through to clean him out. It was from his previous operation, an appendicostomy, where they attached his appendix to his belly button to work as a tunnel to his large colon. It's basically an enema from the top. Fluid goes in and comes out...below. For the past 2 1/2 years he has had to sit in the bathroom for at least 45 minutes a day. We were hoping to eliminate (or at least shorten the amount of times we had to do them a week) with today's operation but it's looking like we will still have to do them given his history. The good news is they should be more effective. 👍🏻
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Mason is currently still in surgery (3 hours and counting). I found out he can get special delivered messages from people delivered to his room. I'd like to have some to hang on his wall to make his stay here happy. Here's the link but I will also put it in his profile, too. Thanks for all the love and support!!😘 #ohmason http://ift.tt/2vrrOCP
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I got to ride on his bed with him to the surgery room. He doesn't like to talk much while in the hospital, but all of a sudden he cried out with a tear in his eye, "Mom! I want you to come with me to the surgery room!" 💔 We got to take him to the operation room door and by then he was already somewhat sedated. We will be there when he wakes up so maybe he will think we got to stay the whole time. :) #ohmason
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Wednesday, August 9, 2017
😷 Prepping for surgery tomorrow! This one is a doozy! They are taking out part of his large colon to hopefully help with gastrointestinal issues he's had since birth. We are praying for success and a good final result that will give him (and our family) a better quality of life. Time will tell! So, if you can spare a minute to send a prayer his way--we would welcome it! He will be in the hospital through the weekend (likely longer) to recover. 🏨
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