Yesterday was the big cathiterization day for Mia. This procedure will tell us when her upcoming open heart surgery will be. Everything went well and we got wonderful results.
We got to the hospital at 6 am and Mia was fantastic leading up to the cath. She got some "goofy juice" about 30 minutes she was taken back and she was just hilarious. Art and I got to back into the cath lab with her while they put her to sleep. That was an interesting experience. They only let you go back after your child is 1 and this was the first procedure Mia had since we've been able to.
We were updated every hour by phone on her progress. Amazingly when we got the first call they already had her IV and breathing tube in and had already gotten the catheter in both her neck and groin.
Next call they let us know that they had made the decision NOT to balloon or stent anything and they were then going to be working on coiling the collaterals. They also told us briefly that the pressures in her lungs and arteries all looked good.
The next update we got was from the cath doctor himself after he was finished. They only had to coil one collateral (we were shocked). Everything else looked good. She does have narrowing of the left artery, but nothing that needs intervention immediately. She also has narrowing where the superior vena cava and the right pulmonary artery meet. It almost looks like a 45-90 degree turn that is slightly pinched. They didn't feel it was necessary to intervene in that area either because it will be patched at the time of surgery.
We couldn't be happier with the results that they found. Everything us much, much better than we were expecting. So now the question still remains as to when her surgery will be. Our cardiologist told us that it still could kind of go either way, this summer or next summer. Because Mia has a fall birthday and they don't "elective" surgery in the fall, winter, and part of spring months, we're limited on when it can be done.
Our cardiologist is going to present Mia at the cardiology conference meeting on Monday, June 3rd (of course it so happens this coming Monday is Memorial Day, so it can't happen then). At that time everyone will weigh in on what is best for Mia's care. Her surgeon will essentially make the final call. So we wait some more. But ya know, I'll wait as long as is needed for them to make the best decision for Mia. Especially now that we know, for sure, that she's doing very very well considering the circumstances!
Thursday, May 23, 2013
Tuesday, May 21, 2013
It Seems To Be A Go
As of right now, 2:42 pm, on Tuesday afternoon, Mia's cath is still a go. I have checked with our cardiologist and the schedulers at the hospital. Hopefully I don't jinx it by typing this post.
I'm nervous. I have butterflies in my stomach and I feel like I need to check and re-check everything. Between Tuesday last week (day before the original cath) and today, I have cleaned our house, almost top to bottom. I have to keep my hands and my mind busy.
Last week as we were approaching the original cath day, I was uneasy. To the point that I had, what I would call, a gut feeling that something was going to go horribly wrong. Perhaps it was that it all got cancelled and rescheduled, I don't know. But I haven't felt that way for the past week. I wouldn't go as far as to say that I've felt ease and contentment, but I haven't felt the on-edge feeling that I was having previously.
We will be on the road tomorrow morning by 5 am. We have to be to the hospital at 6. And Mia's cath is at 7:30. Who knows how long it will take, ideally, it will be 2-3 hours long. Her last cath lasted more like 5-6 hours. We will try to update when we can. Once everything is said and done, we should know within the next day or two when the doctors predict her Fontan surgery will be. Even after the cath is over, and you'd think our fears and nerves will subside, they won't. Then we'll be moving on to a whole new time of preparation. Preparation for open heart surgery number three.
I'm nervous. I have butterflies in my stomach and I feel like I need to check and re-check everything. Between Tuesday last week (day before the original cath) and today, I have cleaned our house, almost top to bottom. I have to keep my hands and my mind busy.
Last week as we were approaching the original cath day, I was uneasy. To the point that I had, what I would call, a gut feeling that something was going to go horribly wrong. Perhaps it was that it all got cancelled and rescheduled, I don't know. But I haven't felt that way for the past week. I wouldn't go as far as to say that I've felt ease and contentment, but I haven't felt the on-edge feeling that I was having previously.
We will be on the road tomorrow morning by 5 am. We have to be to the hospital at 6. And Mia's cath is at 7:30. Who knows how long it will take, ideally, it will be 2-3 hours long. Her last cath lasted more like 5-6 hours. We will try to update when we can. Once everything is said and done, we should know within the next day or two when the doctors predict her Fontan surgery will be. Even after the cath is over, and you'd think our fears and nerves will subside, they won't. Then we'll be moving on to a whole new time of preparation. Preparation for open heart surgery number three.
Tuesday, May 14, 2013
A day in our life
I wish there was a way for me to express in words the gamut of emotions that I felt today. Here's a run down of my day.
I woke up early and double checked that I had packed everything that I would need for the overnight stay at the hospital we were expecting tomorrow night for Mia's cath. Once Mia woke up, I found the last few remaining items of hers that we would need. I got her medicine ready for the day and prepared it to bring along with to the hospital as well. Just in case anyone was ever wondering, Mia gets 9 doses of medicine throughout the day. Totally random, but many people have asked me!
The rest of the morning was pretty routine. Only thing that was different was that Art and I were trying to get ahead with our business in preparation for not working tomorrow. We ate lunch and were playing outside when my phone rang. "Children's Hospital" is what the caller id said and I was thinking it was just a reminder call for the cath tomorrow (as if I was going to forget). Nope. It was a scheduler telling me that due to unforeseen circumstances, Mia's cath was cancelled. And that was it. She didn't offer me a new date and time. I asked her if our cardiologist was aware of this cancellation, she said that she probably was, but she'd have our card call me to explain further.
About 30 minutes later our cardiologist calls. Yep, there's nothing she can do, she didn't know this was going to happen, it's been cancelled. Why you might ask? Now I feel for this family, I really do, but we were seriously almost 12 hours away from leaving our house to drive to the hospital. A new baby is being born tomorrow morning that needs a cath right after delivery and consequently, we got bumped. To when? We still didn't know.
Now please realize, we have been in our house, not leaving other than for walks and to drive around the city to maintain our sanity, for almost 2 weeks. We are all healthy, but we have cabin fever like you wouldn't believe. Both of our parents had taken off of work to help watch Izzy tomorrow. Not to mention we had mentally prepared ourselves for this cath.
3:00, 4:00, 5:00 pm rolls around and we still didn't know. They had told us that there was a possibility of it still being tomorrow, if a different cath doctor was available. Turns out, he's not.
Finally a little after 5, same scheduler as the first call, calls me. She says that they cannot accommodate us tomorrow and it will have to be rescheduled. Yep, I got that. Again, I ask her when. Not until mid-June. You've got to be kidding me. We told her that was unacceptable. She told us that she'd have her manager call us to explain the situation to us again. We didn't need it explained again, we needed a cath date sooner than mid-June.
I call our cardiologist again. She can't do anything about it. While I'm talking on the phone with her about how medically necessary it is for Mia's cath to be this month, more like this week, the scheduling manager calls back. And thank goodness, with a new cath date and time. Next Wednesday, May 22nd, still first thing of the morning. She offered us a few gift cards to the hospital gift shop as a thanks for our accommodation. Uh-huh, gift cards, that will make months of stress and now this huge added stress all better.
So now we will endure another week of limited contact with the outside world, lack of sleep due to anxiety, and prepare all over for Mia's cath. This is a day in our lives.
I woke up early and double checked that I had packed everything that I would need for the overnight stay at the hospital we were expecting tomorrow night for Mia's cath. Once Mia woke up, I found the last few remaining items of hers that we would need. I got her medicine ready for the day and prepared it to bring along with to the hospital as well. Just in case anyone was ever wondering, Mia gets 9 doses of medicine throughout the day. Totally random, but many people have asked me!
The rest of the morning was pretty routine. Only thing that was different was that Art and I were trying to get ahead with our business in preparation for not working tomorrow. We ate lunch and were playing outside when my phone rang. "Children's Hospital" is what the caller id said and I was thinking it was just a reminder call for the cath tomorrow (as if I was going to forget). Nope. It was a scheduler telling me that due to unforeseen circumstances, Mia's cath was cancelled. And that was it. She didn't offer me a new date and time. I asked her if our cardiologist was aware of this cancellation, she said that she probably was, but she'd have our card call me to explain further.
About 30 minutes later our cardiologist calls. Yep, there's nothing she can do, she didn't know this was going to happen, it's been cancelled. Why you might ask? Now I feel for this family, I really do, but we were seriously almost 12 hours away from leaving our house to drive to the hospital. A new baby is being born tomorrow morning that needs a cath right after delivery and consequently, we got bumped. To when? We still didn't know.
Now please realize, we have been in our house, not leaving other than for walks and to drive around the city to maintain our sanity, for almost 2 weeks. We are all healthy, but we have cabin fever like you wouldn't believe. Both of our parents had taken off of work to help watch Izzy tomorrow. Not to mention we had mentally prepared ourselves for this cath.
3:00, 4:00, 5:00 pm rolls around and we still didn't know. They had told us that there was a possibility of it still being tomorrow, if a different cath doctor was available. Turns out, he's not.
Finally a little after 5, same scheduler as the first call, calls me. She says that they cannot accommodate us tomorrow and it will have to be rescheduled. Yep, I got that. Again, I ask her when. Not until mid-June. You've got to be kidding me. We told her that was unacceptable. She told us that she'd have her manager call us to explain the situation to us again. We didn't need it explained again, we needed a cath date sooner than mid-June.
I call our cardiologist again. She can't do anything about it. While I'm talking on the phone with her about how medically necessary it is for Mia's cath to be this month, more like this week, the scheduling manager calls back. And thank goodness, with a new cath date and time. Next Wednesday, May 22nd, still first thing of the morning. She offered us a few gift cards to the hospital gift shop as a thanks for our accommodation. Uh-huh, gift cards, that will make months of stress and now this huge added stress all better.
So now we will endure another week of limited contact with the outside world, lack of sleep due to anxiety, and prepare all over for Mia's cath. This is a day in our lives.
Sunday, May 12, 2013
Mother's Day
Happy Mother's Day to all the moms out there! We celebrated by planting some flowers and pumpkins in our back yard. We played outside for a few hours. And we've relaxed all day. I didn't care what we did, as long as I was with my two girls and my hubby. I love being home with my girls every day. Some days I forget that. Today was a good reminder of how lucky I am to be a mom!
Thursday, May 9, 2013
Living in the Moment
We started our "lock down" 5 days ago and are still going strong. We have only left the house to go on walks around the neighborhood. As we walk I keep my eyes peeled for humans walking around that we need to avoid. Yes, this is what life at our house has been like this week. My husband's thoughtful grandparents brought us cupcakes the other day. We waved at them through the window like quarantined animals! My dad dropped off Mia's new prescriptions yesterday and we did the same. As it happens, it seems so silly and I feel so overprotective, but oh well. We're almost there and we're all healthy. In less than a week Mia's cath will be done and we'll be moving on to the next phase of life.
We talked to our cardiologist on the phone at the beginning of the week. Just had some questions we wanted to make sure were answered before the procedure. She told us that potentially Mia's surgery could be within 6 weeks from the cath depending on what they find. That hit Art and I hard. We may be going from lock down right now to major lock down in another few weeks. That scared me, but it's comforting to know that in less than a week we'll have answers to our burning questions. Finally.
I've actually really been enjoying our time at home this week. I've been drinking in my girls and the fun ages that they are. I love seeing Izzy's imagination going wild and Mia exploring everything in our house. I thought that I'd be brutally bored, but that's not the case at all. It's nice having so much time, just the four of us, before our life gets interrupted with another open heart surgery.
As I'm typing this, Mia is standing next to me, talking to me in her own little language and putting stickers on a piece of paper. I love her so much. Her smiling face gives me hope and when I look at her my heart aches because I never want anything bad to happen to her. I want to protect her in any way I can, I want to give her half of my heart. Since I can't physically do that, I will instead give her my whole heart full of love. That sounded really cheesy, but it's the truth!
We talked to our cardiologist on the phone at the beginning of the week. Just had some questions we wanted to make sure were answered before the procedure. She told us that potentially Mia's surgery could be within 6 weeks from the cath depending on what they find. That hit Art and I hard. We may be going from lock down right now to major lock down in another few weeks. That scared me, but it's comforting to know that in less than a week we'll have answers to our burning questions. Finally.
I've actually really been enjoying our time at home this week. I've been drinking in my girls and the fun ages that they are. I love seeing Izzy's imagination going wild and Mia exploring everything in our house. I thought that I'd be brutally bored, but that's not the case at all. It's nice having so much time, just the four of us, before our life gets interrupted with another open heart surgery.
As I'm typing this, Mia is standing next to me, talking to me in her own little language and putting stickers on a piece of paper. I love her so much. Her smiling face gives me hope and when I look at her my heart aches because I never want anything bad to happen to her. I want to protect her in any way I can, I want to give her half of my heart. Since I can't physically do that, I will instead give her my whole heart full of love. That sounded really cheesy, but it's the truth!
Saturday, May 4, 2013
Packed Away
Last night I sold one of the last "baby" items that we still had in our house, our Pack N' Play. I wasn't sad at all as I posted it on Craigslist and got it all cleaned up. I wasn't even sad when the buyer came to pick it up. Suddenly this morning, I was standing in Mia's room, which now has lots of extra space, and it hit me that my girls aren't babies any longer. Mia is running all over and saying a new word every couple of days. Izzy is finishing her first year of preschool and is going to be starting soccer soon. They're growing up. My memories of them being tiny are packed away in my mind and I will treasure them forever. Instead of packing the pack n' play away with those memories, it was time to let it go. On to the next chapter!
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