So much to share but it is late and I’m tired so this will focus on today only. We will write more about Ella’s adjustment and family life next time – both are going well.
So today was the exploratory cath procedure. We arrived at 8am. The doctor’s came to our room and explained the procedures and of course the risks. I was surprised how much this impacted me. Of course I knew what the risks encompassed but it is different hearing it in relation to your daughter. They gave Ella Versed in hopes to relax her before using gas to put her asleep initially. She was laughing and doing flips in daddy’s lap so not sure how effective the Versed was… Time to head to the procedure room and she knew something was up. There was NO way she was going to lie down on the cart so they allowed us to carry her back. She cried and wouldn’t lay down once in the procedure room either (in typical Ella fashion). I held her and she reached out for Paul. Oh, it was heart breaking! The watermelon scented mask went over her face and within a minute she was out. I left in tears and Paul held me and said a prayer. We made our way to the 4th floor to wait for the 2-3 hour procedure to be over and to receive the news. I was a nervous ball of energy. I called a good friend for support and more prayer and that did the trick. Of course the brownie, candy bar and meal from McDonalds also helped. At hour two I paced the floors and played games on my phone. There was a nice distraction when the “Parent Comfort Cart” rolled by and they came in to ask if we needed anything – really? It was the best. Everything from snacks to personal care items and even neck roll pillows, all free of charge. Paul told them I needed deodorant. As the man pulled out the tray I shot him my dagger eyes!
Finally 2.67 hours later the doctor rolled in to the waiting room. Tell me, tell me, tell me. He smiled and said the procedure went well, actually, as good as it could have gone and Ella was being recovered – whew! Then we talked anatomy and possible options. So the main thing everyone wants to know is what they will be doing to help her and the short answer is – MAJOR OPEN HEART SURGERY. While this is a scary proposition and we don’t yet have all the details it is also good news. The fact that we can even consider/do the surgery is a big plus. Okay, now for you medically minded people who need to know the details – her heart anatomy is a conglomeration of problems. Per the doctor, she does not have complete transposition of great vessels as neither ventricle actually pumps to the lungs. Say what! Yep, the shunt is the way she receives her oxygen. Her O2 saturation today was 90 – big sigh of relief. Of course she has already demonstrated with crying or exertion she easily drops in to the mid 70’s. She has a “massive” hole between the ventricles. Not the biggest he has seen but a “big one”. There is a hole between the atria. Here is the most amazing part – her right atria is over the left ventricle and the left atria over the right ventricle. Slow down and read it again. I pondered this for awhile and then finally asked how exactly this happens and was correct is assuming the heart “twists” during formation. Per the doctor this took place between weeks 3-5 of development. Note it took an hour of pressure to stop the bleeding (yes, we will be testing for a clotting disorder, no meds on board). We have attached the drawing of Ella’s heart anatomy for your viewing pleasure. The picture of Ella’s heart is correctly tilted in the opposite direction of the normal heart. It also sits right of midline slightly.
Alright many of you want to know details about the fix – for now all I have to say is that it is COMPLICATED but doable. There are a couple of options but the main goals will be to make the left ventricle the pump (as it should be) for distribution of oxygenated blood to the body, the VSD repaired, and a new shunt placed. Yes, they have exceptional surgeons.
So a nurse comes almost running into the waiting room asking us to come back as Ella is becoming agitated – never a good sign. We arrive just in time to see Ella crying then screaming and writhing in bed. No, she wasn’t in pain. She is a three year old who doesn’t like to be told what to do, plus she is scared to death. As a side note on at least two occasions I laughed out loud when I was told that the plan for keeping her calm and flat for 4 hours after the procedure involved no additional sedation and only Tylenol. Oh, alright, if you say so. Anyway, after 20 minutes of screaming, the ear piercing type, crying and trashing about in bed the nurses ask what calms her down what types of things does she like? I laid it out there and told them she wants out of bed and that is the only thing that will make her happy. One nurse assures me she is just trying to find a comfortable position and we should let go of her and then all will be well. Two seconds later guess who is on her way out of the bed all the while giving off ample attitude with exorcist rivaling “NO’s” to the staff. They finally get the hint and some scramble out the door to call the doctor. Now they think it might be a good idea for some sedation – what took you so long! Another nurse in the room asks me if Ells would calm down if she could sit in my lap. I say yes but not if it is in the bed. We had WAY surpassed that opportunity. They figure she is no longer hooked up to any of the monitors from all the trashing so what can this hurt. On the way out of bed I notice fresh blood. I was relieved to know she only pulled out her IV and that she is not re-bleeding. So for four hours Ella lay curled up in my lap on a chair. It took her an hour to finally calm down and fall asleep. Yes, they did return with sedation medication but anytime the staff came within 5 feet of her, Ella made it clear that they were not welcome. For all you nurses – no vitals were taken during the entire recovery period and the site looked at once by me with a nurse standing nearby. The moral of the story is – don’t mess with Ella!! The staff was kind and did know their stuff but they got the message and are already planning differently for our next visit.
Paul and I are awaiting a detailed phone conversation with Ella’s cardiologist - we hope tomorrow. We have been led to believe that the surgery will happen sooner rather than later. There is medical reasoning for this but I’m too tired to explain. Is soon a couple weeks or a couple months – don’t know yet. She will most likely be in the hospital for 2 weeks. Anyone have a coupon for open heart surgery that we could have - maybe 50% off?
There is a lot going on at the Hammond household. I will not let her medical condition overshadow the amazing little girl she is or how she has blessed our lives and fits into our family with precision. God is in control. He has been since the beginning of this journey. There is no fear for fear is not of God. Is there concern for her well being, safety and protection of her heart – yes. God will cover those as well. Thank you for your prayers.
Happy 7th Birthday Colin Andrew!!
So today was the exploratory cath procedure. We arrived at 8am. The doctor’s came to our room and explained the procedures and of course the risks. I was surprised how much this impacted me. Of course I knew what the risks encompassed but it is different hearing it in relation to your daughter. They gave Ella Versed in hopes to relax her before using gas to put her asleep initially. She was laughing and doing flips in daddy’s lap so not sure how effective the Versed was… Time to head to the procedure room and she knew something was up. There was NO way she was going to lie down on the cart so they allowed us to carry her back. She cried and wouldn’t lay down once in the procedure room either (in typical Ella fashion). I held her and she reached out for Paul. Oh, it was heart breaking! The watermelon scented mask went over her face and within a minute she was out. I left in tears and Paul held me and said a prayer. We made our way to the 4th floor to wait for the 2-3 hour procedure to be over and to receive the news. I was a nervous ball of energy. I called a good friend for support and more prayer and that did the trick. Of course the brownie, candy bar and meal from McDonalds also helped. At hour two I paced the floors and played games on my phone. There was a nice distraction when the “Parent Comfort Cart” rolled by and they came in to ask if we needed anything – really? It was the best. Everything from snacks to personal care items and even neck roll pillows, all free of charge. Paul told them I needed deodorant. As the man pulled out the tray I shot him my dagger eyes!
Finally 2.67 hours later the doctor rolled in to the waiting room. Tell me, tell me, tell me. He smiled and said the procedure went well, actually, as good as it could have gone and Ella was being recovered – whew! Then we talked anatomy and possible options. So the main thing everyone wants to know is what they will be doing to help her and the short answer is – MAJOR OPEN HEART SURGERY. While this is a scary proposition and we don’t yet have all the details it is also good news. The fact that we can even consider/do the surgery is a big plus. Okay, now for you medically minded people who need to know the details – her heart anatomy is a conglomeration of problems. Per the doctor, she does not have complete transposition of great vessels as neither ventricle actually pumps to the lungs. Say what! Yep, the shunt is the way she receives her oxygen. Her O2 saturation today was 90 – big sigh of relief. Of course she has already demonstrated with crying or exertion she easily drops in to the mid 70’s. She has a “massive” hole between the ventricles. Not the biggest he has seen but a “big one”. There is a hole between the atria. Here is the most amazing part – her right atria is over the left ventricle and the left atria over the right ventricle. Slow down and read it again. I pondered this for awhile and then finally asked how exactly this happens and was correct is assuming the heart “twists” during formation. Per the doctor this took place between weeks 3-5 of development. Note it took an hour of pressure to stop the bleeding (yes, we will be testing for a clotting disorder, no meds on board). We have attached the drawing of Ella’s heart anatomy for your viewing pleasure. The picture of Ella’s heart is correctly tilted in the opposite direction of the normal heart. It also sits right of midline slightly.
Alright many of you want to know details about the fix – for now all I have to say is that it is COMPLICATED but doable. There are a couple of options but the main goals will be to make the left ventricle the pump (as it should be) for distribution of oxygenated blood to the body, the VSD repaired, and a new shunt placed. Yes, they have exceptional surgeons.
So a nurse comes almost running into the waiting room asking us to come back as Ella is becoming agitated – never a good sign. We arrive just in time to see Ella crying then screaming and writhing in bed. No, she wasn’t in pain. She is a three year old who doesn’t like to be told what to do, plus she is scared to death. As a side note on at least two occasions I laughed out loud when I was told that the plan for keeping her calm and flat for 4 hours after the procedure involved no additional sedation and only Tylenol. Oh, alright, if you say so. Anyway, after 20 minutes of screaming, the ear piercing type, crying and trashing about in bed the nurses ask what calms her down what types of things does she like? I laid it out there and told them she wants out of bed and that is the only thing that will make her happy. One nurse assures me she is just trying to find a comfortable position and we should let go of her and then all will be well. Two seconds later guess who is on her way out of the bed all the while giving off ample attitude with exorcist rivaling “NO’s” to the staff. They finally get the hint and some scramble out the door to call the doctor. Now they think it might be a good idea for some sedation – what took you so long! Another nurse in the room asks me if Ells would calm down if she could sit in my lap. I say yes but not if it is in the bed. We had WAY surpassed that opportunity. They figure she is no longer hooked up to any of the monitors from all the trashing so what can this hurt. On the way out of bed I notice fresh blood. I was relieved to know she only pulled out her IV and that she is not re-bleeding. So for four hours Ella lay curled up in my lap on a chair. It took her an hour to finally calm down and fall asleep. Yes, they did return with sedation medication but anytime the staff came within 5 feet of her, Ella made it clear that they were not welcome. For all you nurses – no vitals were taken during the entire recovery period and the site looked at once by me with a nurse standing nearby. The moral of the story is – don’t mess with Ella!! The staff was kind and did know their stuff but they got the message and are already planning differently for our next visit.
Paul and I are awaiting a detailed phone conversation with Ella’s cardiologist - we hope tomorrow. We have been led to believe that the surgery will happen sooner rather than later. There is medical reasoning for this but I’m too tired to explain. Is soon a couple weeks or a couple months – don’t know yet. She will most likely be in the hospital for 2 weeks. Anyone have a coupon for open heart surgery that we could have - maybe 50% off?
There is a lot going on at the Hammond household. I will not let her medical condition overshadow the amazing little girl she is or how she has blessed our lives and fits into our family with precision. God is in control. He has been since the beginning of this journey. There is no fear for fear is not of God. Is there concern for her well being, safety and protection of her heart – yes. God will cover those as well. Thank you for your prayers.
Happy 7th Birthday Colin Andrew!!
