We got to Houston around 1:30am on Thursday morning and went straight to the ER to be admitted for symptoms of heart failure. Most of Thursday was spent talking about the changes we saw in Reiss that made us concerned and the steps we took to get to Texas.
By about 8:00am, we were escorted up to the 15th Floor. Half of this floor is part of the Cardiovascular Intensive Care Unit (CVICU) and half is the Step-Down Unit patients visit prior to going home. We have been here before. In fact, we walked right past the room we had in early June. A wave of memories flooded our minds: taking her test tube out, learning to walk post-surgery, and thoughts of what the future will hold.
This time, however, we walked through a secondary set of doors – the doors that separate the CVICU from the Step-Down Unit. I swallowed the lump in my throat as I read the words above the doors – “HEART FAILURE INTENSIVE CARE UNIT.” Then I looked at Roy. He read it too, and, by the look in his eyes, I knew he felt what I was feeling – scared and anxious.
Two months ago, we were looking at the future. It was bright and big and unending.
After learning that she was in heart failure, however, our thoughts of the future made a complete 180. The bright future was now overshadowed by doubt and what was once unending was now viewed as finite. Our thoughts went straight to the worst – her heart is failing and she will need a new heart. How long do you wait for a heart? What happens if it doesn’t take? All of these worst case scenario questions were running rapidly through our heads.
Where do we go from here?
Lasix – Reiss started on Lasix on Thursday and continues to be on them to help get fluid off of her heart and out of her blood (so she doesn’t have to pump so much volume through her heart). They will keep her on this regimen until they reassess on Monday. They may wean her down from an IV dose to an oral dose sometime next week, but she will always be on this med even when we go home. So far, it is already working. Her heart rate and number of respirations have decreased. Her fatigue seemed to get better today, so we are happy about that as well. Her appetite is still down and it is a struggle to get her to eat and drink. She has lost about 2.5 lbs in 3 days and we are worried that if she doesn’t keep at least drinking, that she will become dehydrated and have to be on IV fluids.
Ace Inhibitor – this helps decrease blood pressure in her arteries, as well as increase heart function. While the lasix may decrease the workload on the heart, it won’t help the ventricle squeeze as it should. The ace inhibitor could help it squeeze. She had her first dose of this today. We are to watch to see if her fatigue increases over the next couple of days. If it increases, they will attribute it to low blood pressure and have to adjust this medicine.
Surgical Intervention – We haven’t discussed much of what this would entail. If the lasix and ace inhibitors don’t work, they will discuss surgical interventions at that time. Two things they did mention were:
- Repairing the tricuspid valve – this was mentioned briefly as an option. However, even if the valve is working properly, if the right ventricle isn’t squeezing as it should, then you are no better off. Additionally, a repair of the tricuspid valve isn’t a successful surgery to begin with.
- Adding another lead to her pacemaker – this lead would be placed on each ventricle and would pulse at the same time to help the ventricles pump together instead of working against each other.
Heart Transplant – the team hasn’t talked about this one yet, but has mentioned they thought they had “a lot of room to move” with medicines before a surgical approach was needed.
How Long Will We Be Here?
We don’t really know. We talked to our surgeon’s NP, Tammy, and she thought we could be here for 2 weeks as we try to figure out a good mix of medicines and if surgery is necessary. If surgery is necessary, it will be longer than 2 weeks. If a heart transplant is necessary, we could be here for months, depending on when a donor heart becomes available.
What are we doing now?
We are just waiting around to see if the medications are positively affecting her condition. X-rays are completed daily and blood work is on Mondays and Thursdays. She will get an echo as needed to see how far she has come since her admission, but most importantly, they are watching her to see if her respirations, fatigue, energy, appetite and general attitude improves or regresses.
Reiss visits the playroom, which keeps her attention for a bit. We also watch movies, color, and go on walks around the unit.
Carrying the Olympic Torch
One fun thing she got to do this week was carry the Olympic Torch for the Heart Warriors
as part of the Texas Childrens Olympic Games opening ceremony. She was very serious about carrying the torch and was worn out after.
Thank you for the continued prayers as we go through this uncertain time.