Sunday, June 25, 2017
Fun for All!
We've been home for three full days and they have been nothing short of fabulous! Everyone is still giddy and so happy to be together after three long weeks. Honestly, I can't decide who is happiest! Although we will focus on cocooning and staying close to home for the most part this summer, we had a daily activity this weekend with the girls' softball games on Saturday and the zoo after church on today. It felt so good to praise God in His holy house together! And the zoo lived up to almost everything Apollo dreamed of...sans the lion and tiger (shoot me!). It's always hit and miss with them on any given day. The big thrills were undoubtedly the hippos, elephants, rhinos, and the train ride.
I won't update too much anymore as we're back to our beautiful chaos. Apollo has a follow up cardio appointment this Wednesday at SLCH so I'll post after that. We're anticipating a glowing exam! I'll also start scheduling more appointments - pediatrician, international clinic, dentist, and probably immunolgy and GI because of his heterotaxy diagnosis. Let the frequent trips to Children's begin!
Friday, June 23, 2017
H-O-M-E!!!
Home is where your heart is - we are HOME and my heart is now full and complete with 10 little eyes, 50 little fingers and toes, and 5 necks and faces that I can't stop squeezing and kissing! And of course, Mike's too!
There's no time to post as we're in a blissful flurry of fun all together! But last night was a beautiful, tearful, and joyous reunion. We are "Together at Last", "Boston Strong" and this has been "All for Apollo"!!
There's no time to post as we're in a blissful flurry of fun all together! But last night was a beautiful, tearful, and joyous reunion. We are "Together at Last", "Boston Strong" and this has been "All for Apollo"!!
Thursday, June 22, 2017
Post Op Day #9
1pm
Tick, tick, tock. Goes the clock. After a restless night full of whimpers, we were woken up early for a 6:30am chest xray. It was quick but not painless since Apollo had some tears free flowing from the lack of sleep. We got back to our room, started packing, ordered breakfast, and bathed to be all ready for our big day. That was 6 hours ago and we are still waiting for the final box to be checked - a lung scan. We were supposed to go down at 8am and that has come and gone. Lil boy hasn't taken a nap all week but fell asleep before he could even start in on his lunch. We played, said premature goodbyes to friends, filled his prescriptions, and have watched the clock. It's a good thing I didn't purchase our flights like I wanted to this morning!
This all seems so trivial now that I know a little heart princess who had received a transplant passed away this week. Please pray for little 2-year-old Victoria who was in a room several down from us in the CICU. I can't imagine what her mama is going through right now as I shudder to think it was almost our boy. But it wasn't and we have our angel to thank again every day for the rest of our lives.
10pm
Tick, tick, tock. Goes the clock. After a restless night full of whimpers, we were woken up early for a 6:30am chest xray. It was quick but not painless since Apollo had some tears free flowing from the lack of sleep. We got back to our room, started packing, ordered breakfast, and bathed to be all ready for our big day. That was 6 hours ago and we are still waiting for the final box to be checked - a lung scan. We were supposed to go down at 8am and that has come and gone. Lil boy hasn't taken a nap all week but fell asleep before he could even start in on his lunch. We played, said premature goodbyes to friends, filled his prescriptions, and have watched the clock. It's a good thing I didn't purchase our flights like I wanted to this morning!
This all seems so trivial now that I know a little heart princess who had received a transplant passed away this week. Please pray for little 2-year-old Victoria who was in a room several down from us in the CICU. I can't imagine what her mama is going through right now as I shudder to think it was almost our boy. But it wasn't and we have our angel to thank again every day for the rest of our lives.
After a very long day of waiting and waiting, Apollo was discharged!! I bought plane tickets on the ride to the airport and we made it to the gate with 15 minutes to spare after sitting in bad traffic. Then we ran straight to the Chicago gate for our connecting flight to St. Louis. Like we need any more stress! I'm pretty emotional and would love to write it all down but there just isn't time. I also don't have time to update our afternoon pics because we're waiting to take off for St. Louis! There are some pretty cute ones but here's our "goodbye"! :)
Thank you all for your prayers! I truly don't think we could've done this without the strength we felt from your love and support. I am beyond proud and amazed by our baby. He is...
Wednesday, June 21, 2017
Post Op Day #8
2:30pm
3 weeks. Today marks three weeks in Boston. 3 long but beautiful weeks of attachment, love, and renewed strength for our boy. We're waiting to see Dr. Marx today to hear about yesterday's Echo results. We know he didn't get enough images since the sonographer came back to do more today. I'm praying it's not an indication of anything wrong. If it all looks good, our last hurdle is a clear chest xray tomorrow morning. We've made ourselves at home here so I want to start packing up a bit but really don't want to jinx it!
We also had another long playroom visit and got to meet a little Chinese heart warrior, Titus, and his sweet mama. I would've chatted the whole morning but we were called away to meet a beloved China family (part of the whole family!). They were here shortly for a follow-up visit. I just adore the mama and her husband, a pediatrician, wrote an expedite letter to hurry Apollo home. They're very special to us. We gabbed and gabbed but it wasn't enough. We could've sat there all afternoon with our heart warrior boys playing, and a big brother too. I'll say it again, I LOVE my China heart community! We're off to go have a music party in one of the playrooms now!
7:30pm
Dr. Marx just stopped by to say he's ready to give his blessing to go home tomorrow as long as the chest xray looks good! Please pray so I can squeeze 6 other Duff necks and a Grammy who has taken such good care of them for so long! Apollo didn't love the music session (though I did!) but he had a little 1:1 jam session at the end.
We're ALL praying tonight is our last night in Boston for months and months. We love this city but we love Troy even more!!
3 weeks. Today marks three weeks in Boston. 3 long but beautiful weeks of attachment, love, and renewed strength for our boy. We're waiting to see Dr. Marx today to hear about yesterday's Echo results. We know he didn't get enough images since the sonographer came back to do more today. I'm praying it's not an indication of anything wrong. If it all looks good, our last hurdle is a clear chest xray tomorrow morning. We've made ourselves at home here so I want to start packing up a bit but really don't want to jinx it!
We also had another long playroom visit and got to meet a little Chinese heart warrior, Titus, and his sweet mama. I would've chatted the whole morning but we were called away to meet a beloved China family (part of the whole family!). They were here shortly for a follow-up visit. I just adore the mama and her husband, a pediatrician, wrote an expedite letter to hurry Apollo home. They're very special to us. We gabbed and gabbed but it wasn't enough. We could've sat there all afternoon with our heart warrior boys playing, and a big brother too. I'll say it again, I LOVE my China heart community! We're off to go have a music party in one of the playrooms now!
7:30pm
Dr. Marx just stopped by to say he's ready to give his blessing to go home tomorrow as long as the chest xray looks good! Please pray so I can squeeze 6 other Duff necks and a Grammy who has taken such good care of them for so long! Apollo didn't love the music session (though I did!) but he had a little 1:1 jam session at the end.
We're ALL praying tonight is our last night in Boston for months and months. We love this city but we love Troy even more!!
Tuesday, June 20, 2017
Post Op Day #7
11:30am
Today should be the big day to say "sayonara" to those pesky chest tubes! I am holding my breath and waiting on the team's every word. They wanted Apollo up and about and that's what we've done all morning. After a morning showing of "The Secret Life of Pets", I gave him a sponge bath and went for a long walk around the unit. We found our way to the playroom and haven't moved for nearly 2 hours! Dr. Marx found us again and oohed and aahed over our brave boy. They are all just so surprised how well Apollo has done and cautious that he still won't have pleural effusion. He mentioned the word "discharge" for maybe tomorrow or Thursday! Yes please!!
We also had a special furry visitor named Sam. Apollo loved him and pet him over and over. Uh oh, after our Cooper, I said we would never have a dog again...
The dietitian also found us again as Apollo has been on her radar and checks in often. He's at the point where he really needs to start consuming more calories so we spoke at length and will try several different treats. She's sending up all the unhealthy foods he loves like Oreo cookies, chips, and crackers. She said it's not about healthy calories, just calories at this point so whatever he will eat works for her. Ok, if you say so! We have free reign of smoothies and shakes and she wants me to order one of every kind if it will help us find what he likes.
Crossing fingers for a big update this afternoon!
5:00pm
Just when we were starting to think today wasn't our day, we were pleasantly surprised and the chest tubes are no more! Gone! It was quite the production and a student nurse was denied watching since there were already six of us in the room. Apollo did great and I'm so very thankful! Sadly, he had an epic meltdown right before because I made him leave the playroom to start his IV meds for the tube removal. He screamed and cried for a really long time, tantrumed, and scratched himself. His nurses were shocked but I explained this is the raw truth of adoption. It's hard but it's worth all of the pain, fear, and sadness.
Just as he was falling asleep on my lap, we were taken to the treatment room for all of the excitement. We're now waiting for an Echo (which can qualify him to be discharged!). He will then need a clear chest xray for him to kiss this place goodbye for a couple months. My handsome boy!
Today should be the big day to say "sayonara" to those pesky chest tubes! I am holding my breath and waiting on the team's every word. They wanted Apollo up and about and that's what we've done all morning. After a morning showing of "The Secret Life of Pets", I gave him a sponge bath and went for a long walk around the unit. We found our way to the playroom and haven't moved for nearly 2 hours! Dr. Marx found us again and oohed and aahed over our brave boy. They are all just so surprised how well Apollo has done and cautious that he still won't have pleural effusion. He mentioned the word "discharge" for maybe tomorrow or Thursday! Yes please!!
We also had a special furry visitor named Sam. Apollo loved him and pet him over and over. Uh oh, after our Cooper, I said we would never have a dog again...
The dietitian also found us again as Apollo has been on her radar and checks in often. He's at the point where he really needs to start consuming more calories so we spoke at length and will try several different treats. She's sending up all the unhealthy foods he loves like Oreo cookies, chips, and crackers. She said it's not about healthy calories, just calories at this point so whatever he will eat works for her. Ok, if you say so! We have free reign of smoothies and shakes and she wants me to order one of every kind if it will help us find what he likes.
Crossing fingers for a big update this afternoon!
5:00pm
Just when we were starting to think today wasn't our day, we were pleasantly surprised and the chest tubes are no more! Gone! It was quite the production and a student nurse was denied watching since there were already six of us in the room. Apollo did great and I'm so very thankful! Sadly, he had an epic meltdown right before because I made him leave the playroom to start his IV meds for the tube removal. He screamed and cried for a really long time, tantrumed, and scratched himself. His nurses were shocked but I explained this is the raw truth of adoption. It's hard but it's worth all of the pain, fear, and sadness.
Just as he was falling asleep on my lap, we were taken to the treatment room for all of the excitement. We're now waiting for an Echo (which can qualify him to be discharged!). He will then need a clear chest xray for him to kiss this place goodbye for a couple months. My handsome boy!
Monday, June 19, 2017
Post Op Day #6
1:30pm
We've had a fun and relatively pain free morning - hip hip hooray! The plan was supposed to be to have his chest tubes and pacing wires pulled this morning but that didn't happen and we're not so sure it will happen today at all. He's still putting out too much fluid. His feisty and ornery little personality is coming out so he is showing us how much better he feels. Once those last tubes leave him, I'm sure he'll feel like a million bucks!
We played in the playroom for a long time where Dr. Marx found us and couldn't believe how different he looks. He remarked that he isn't the same boy he met a couple weeks ago and I agree. I was able to snap an awesome shot of them together!
While in the playroom, we waved to some Patriots players since Apollo didn't want the big, scary guys to get too close. And since my lil buddy won't let me out of sight, I was allowed to take him off the floor with me for the first time and do some overdue laundry. He was thrilled to see something other than his room and we sat in front of the jumbotron in awe. He had another blood draw (they don't get any easier), we switched our load, and are now all nestled back in bed for lunch and a nap. We're praying these chest tubes come out this afternoon!!
4:45pm
Chest tubes won't be removed today. :(
We've had a fun and relatively pain free morning - hip hip hooray! The plan was supposed to be to have his chest tubes and pacing wires pulled this morning but that didn't happen and we're not so sure it will happen today at all. He's still putting out too much fluid. His feisty and ornery little personality is coming out so he is showing us how much better he feels. Once those last tubes leave him, I'm sure he'll feel like a million bucks!
His "strong" pose
We played in the playroom for a long time where Dr. Marx found us and couldn't believe how different he looks. He remarked that he isn't the same boy he met a couple weeks ago and I agree. I was able to snap an awesome shot of them together!
While in the playroom, we waved to some Patriots players since Apollo didn't want the big, scary guys to get too close. And since my lil buddy won't let me out of sight, I was allowed to take him off the floor with me for the first time and do some overdue laundry. He was thrilled to see something other than his room and we sat in front of the jumbotron in awe. He had another blood draw (they don't get any easier), we switched our load, and are now all nestled back in bed for lunch and a nap. We're praying these chest tubes come out this afternoon!!
4:45pm
Chest tubes won't be removed today. :(
Sunday, June 18, 2017
Post Op Day #5
Happy Father's Day to all of the wonderful men in our world. And the happiest of all to a certain special baba.
Grammy had a different adorable craft gift from each lil Duff to Mike and he took them golfing for their annual tradition. When we get back, we'll be sure he has a restful day since today couldn't have been without Mama's help!
As usual, Apollo has had both ups and downs today. We made it to the playroom for the first time which lit up his face like a Christmas morning delight. He tuckered himself out playing with ALL of the animals (his favorite), crayons, legos, and a train. We'll sure to be there several times tomorrow. He is now a fan of the Minions and even giggled while watching the movie. On the flip side, there have been many tears from injections, a blood draw, and chest tube pain. His chest tubes wrap all around inside his torso and are so very painful. Tomorrow should be the day for them to make their exit! He's eating and drinking more to everyone's relief. We're one day closer to home and hope to have an idea of when that may be tomorrow. I am praying and asking for a long-awaited mid-week reunion!
Grammy had a different adorable craft gift from each lil Duff to Mike and he took them golfing for their annual tradition. When we get back, we'll be sure he has a restful day since today couldn't have been without Mama's help!
As usual, Apollo has had both ups and downs today. We made it to the playroom for the first time which lit up his face like a Christmas morning delight. He tuckered himself out playing with ALL of the animals (his favorite), crayons, legos, and a train. We'll sure to be there several times tomorrow. He is now a fan of the Minions and even giggled while watching the movie. On the flip side, there have been many tears from injections, a blood draw, and chest tube pain. His chest tubes wrap all around inside his torso and are so very painful. Tomorrow should be the day for them to make their exit! He's eating and drinking more to everyone's relief. We're one day closer to home and hope to have an idea of when that may be tomorrow. I am praying and asking for a long-awaited mid-week reunion!
Saturday, June 17, 2017
Post Op Day #4
1pm
Sorry for the delay but Mr. Apollo has me busy now that we're on the inpatient unit. He's doing extremely well! His team is being cautious as he's had a few slumps so we know we're not going to be out of here in the next couple of days. The goal of the surgery was to increase his pulmonary blood flow which it did. Now we are in the balancing stage where he's getting too much flow that it could be damaging so he is being closely monitored. One would be ecstatic to see oxygen sats in the 90s but not for Apollo. It's too high for his anatomy so they will continually make adjustments. And as of right now, he is off oxygen (though they're leaving his cannula in place!)! He's also had a sponge bath (which he did not enjoy). He had another injection this morning and will have a blood draw in a bit to test the heparin level and hope they can stop them. Please pray for his emotional state as he does so well and is happy only to come crashing down when needing injections, blood draws, or when his chest tubes really hurt. He is so brave and saves his tears for the really, really painful times. We're the only ones in our room and we're loving the privacy as we've settled in comfortably!
Sorry for the delay but Mr. Apollo has me busy now that we're on the inpatient unit. He's doing extremely well! His team is being cautious as he's had a few slumps so we know we're not going to be out of here in the next couple of days. The goal of the surgery was to increase his pulmonary blood flow which it did. Now we are in the balancing stage where he's getting too much flow that it could be damaging so he is being closely monitored. One would be ecstatic to see oxygen sats in the 90s but not for Apollo. It's too high for his anatomy so they will continually make adjustments. And as of right now, he is off oxygen (though they're leaving his cannula in place!)! He's also had a sponge bath (which he did not enjoy). He had another injection this morning and will have a blood draw in a bit to test the heparin level and hope they can stop them. Please pray for his emotional state as he does so well and is happy only to come crashing down when needing injections, blood draws, or when his chest tubes really hurt. He is so brave and saves his tears for the really, really painful times. We're the only ones in our room and we're loving the privacy as we've settled in comfortably!
10pm
Overall Apollo had a great day full of fun. We were reminded several times how much pain the meds are masking when they start to wear off a bit. We enjoyed several movies (his sisters will be thrilled he's a Disney Princess fan), played with bubbles as respiratory therapy, play doh, books, duplo blocks, and took several walks. He is still very frightened and wants me in sight at all times especially since he has to have several "ouchies" each day. I'm hoping they will let me take him off the floor tomorrow so I can do laundry since he's had multiple bodily fluids leak onto both his and my clothes (sorry for too many details). We also plan on seeking out the playroom which Magnus and I loved. And we just ran into one of our favorite nurses from Magnus's stay who recognized me right away while helping with his injection. She remembered Magnus by name along with his surgical repair. He leaves quite the lasting impression with many! She was happy to hear we'll be frequent fliers here for awhile so that we can keep chatting it up. We're all tucked in and hope for an uneventful night with only vitals checks and meds to wake us. It looks like it's going to be another night of Mommy and Apollo in the bed together.
Subscribe to:
Posts (Atom)