Yesterday was a very long day.
In the lead up to Riley getting the Cardiac Catheter Procedure we found ourselves constantly having to explain it to everyone; I get that people don't know how this all works. I didn't even know anything about all of this until we had Riley.
That's part of the reason why we wrote this blog. On the one hand maybe there will be a family who stumbles upon it and needs to hear from somebody who has been through something similar to them and on the other hand it's a great information tool for our friends and family so I don't have to explain the same thing over and over. Even though I inevitably have to anyway.
The funny thing I found was quite a lot of people thought that this procedure was her open heart surgery. Whenever we told people we would be back by the end of the week they were shocked because they were under the assumption that we would be gone for months. It was then a little bit awkward to explain that what she is about to go through this week is still a big deal but not as big a deal as having open heart surgery. Even though the idea of our daughter being poked and prodded was not something we were particularly looking forward to; we knew we just had to get this over with.
When we got to Brisbane; we met her cardiologist Dr Justo who grabbed us quickly in between appointments to talk us through what would happen. Namely the timeline on what they will do with all the information they will get from the procedure. They take them to a conference with all the parties involved in her major surgery and then book in a date. Only problem is that Dr Justo will be running a clinic in Myanmar when next it meets so they more than likely won't discuss Riley's case until he gets back. So it's possible we couldn't hear anything for weeks; but we have also been told by other heart families to expect them to just give you a month rather than a day. So they may get back to us and say "We are going to do it in May" without saying what date in May. Thankfully we don't feel impatient about this; we are okay with waiting.
He also let us know that not only were they going to feed the Catheter through her groin area but also in her neck as well. It was good to know these things so that we could prep Riley as best as we can.
The nurse then gave us the news that we would need to be at the Hospital at 6:30am and that Riley
would be the first on the list. This was a relief because she would have to fast food and water so we didn't want to drag it out too long. Unfortunately the reality was that when we arrived at 6:30am on Tuesday morning; it took quite a bit longer than that. They don't even start accepting patients until 9am even though they want you there 2 1/2 hours early. So we did A LOT of reading books to Riley and other things to try and keep her pre-occupied. Riley can be an eating machine so I was really worried we would have to deal with her growing hunger but she powered through without a single complaint.
Finally the time came to give her to the team and the wait began. Even though we had been through all of this before with her as a baby; that was back when we only had one child. Now we have a second one to keep amused; it felt like a little bit of a wake up call that when Riley has her Fontan Surgery we won't have the luxury of putting our full attention on Riley. Now we needed to keep Maya amused as well. Last time we went for some food and then just sat in the waiting room. This time we had to take Maya to the playground, the starlight room and every toy area in the hospital we could find.
Even when we finally got the call that Riley had entered Recovery; only Jess got to go in to see her and I had to go take Maya home and give her an afternoon nap. When we have to go away for a longer period of time for the Fontan Surgery; it's going to be a bit of a juggling act.
Dr Justo let us know that her pressures were good; there was nothing unexpected and her structure is how it was supposed to be. No big surprises. She did have blockages on both sides of her lower body which made it difficult to see some things they were after but going through the neck got most of the information they needed.
Riley as you would expect woke up from her procedure and was not a happy girl. A requirement of any patient who goes through this is that they have to lay flat on their bed for four hours afterwards but Riley was not in the mood. This caused her oxygen sats to drop which puts the nurses on alarm. Meanwhile Jess knew exactly what to do; she always does. First Riley needed to go to the toilet and second she needed to put on a movie or a TV show and Riley would lie stiff as a board.
One rule however in Recovery is that there can be no electronic devices; so Jess kept letting them
know if they move her onto the day surgery ward where she could watch something then Riley will do exactly what they wanted. When they finally did; it proved her right and Riley returned to her normal self. In fact if you chatted with her right now you would have no idea anything had happened to her.
And since Riley no longer had to fast; she made up for lost time. Namely by eating anything and everything in sight. I am sure if we told her that her pillow was edible; she would have tore into that too. Otherwise by 5:30pm they were happy enough to send her home. We were all so tired from the day that most of our family was in bed by 7:30pm that night.
We just want to say thank you everyone for all the prayers and support; it means a lot to us. We don't know when the next part will happen but Riley has continued to be the superstar she was when she was a baby going through all of this before which encourages us greatly that when the next part happens; everything will be okay. She's a little champion.
In the lead up to Riley getting the Cardiac Catheter Procedure we found ourselves constantly having to explain it to everyone; I get that people don't know how this all works. I didn't even know anything about all of this until we had Riley.
That's part of the reason why we wrote this blog. On the one hand maybe there will be a family who stumbles upon it and needs to hear from somebody who has been through something similar to them and on the other hand it's a great information tool for our friends and family so I don't have to explain the same thing over and over. Even though I inevitably have to anyway.
When we got to Brisbane; we met her cardiologist Dr Justo who grabbed us quickly in between appointments to talk us through what would happen. Namely the timeline on what they will do with all the information they will get from the procedure. They take them to a conference with all the parties involved in her major surgery and then book in a date. Only problem is that Dr Justo will be running a clinic in Myanmar when next it meets so they more than likely won't discuss Riley's case until he gets back. So it's possible we couldn't hear anything for weeks; but we have also been told by other heart families to expect them to just give you a month rather than a day. So they may get back to us and say "We are going to do it in May" without saying what date in May. Thankfully we don't feel impatient about this; we are okay with waiting.
He also let us know that not only were they going to feed the Catheter through her groin area but also in her neck as well. It was good to know these things so that we could prep Riley as best as we can.
The nurse then gave us the news that we would need to be at the Hospital at 6:30am and that Riley
Finally the time came to give her to the team and the wait began. Even though we had been through all of this before with her as a baby; that was back when we only had one child. Now we have a second one to keep amused; it felt like a little bit of a wake up call that when Riley has her Fontan Surgery we won't have the luxury of putting our full attention on Riley. Now we needed to keep Maya amused as well. Last time we went for some food and then just sat in the waiting room. This time we had to take Maya to the playground, the starlight room and every toy area in the hospital we could find.
Dr Justo let us know that her pressures were good; there was nothing unexpected and her structure is how it was supposed to be. No big surprises. She did have blockages on both sides of her lower body which made it difficult to see some things they were after but going through the neck got most of the information they needed.
Riley as you would expect woke up from her procedure and was not a happy girl. A requirement of any patient who goes through this is that they have to lay flat on their bed for four hours afterwards but Riley was not in the mood. This caused her oxygen sats to drop which puts the nurses on alarm. Meanwhile Jess knew exactly what to do; she always does. First Riley needed to go to the toilet and second she needed to put on a movie or a TV show and Riley would lie stiff as a board.
One rule however in Recovery is that there can be no electronic devices; so Jess kept letting them
And since Riley no longer had to fast; she made up for lost time. Namely by eating anything and everything in sight. I am sure if we told her that her pillow was edible; she would have tore into that too. Otherwise by 5:30pm they were happy enough to send her home. We were all so tired from the day that most of our family was in bed by 7:30pm that night.
We just want to say thank you everyone for all the prayers and support; it means a lot to us. We don't know when the next part will happen but Riley has continued to be the superstar she was when she was a baby going through all of this before which encourages us greatly that when the next part happens; everything will be okay. She's a little champion.
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