Seeing Her Again
Day 1 – We watched Reiss go around 7:30am on Wednesday morning. We eagerly waited for each update, which came from the Nurse Practitioner about every 1.5-2 hours throughout that day. We tried to keep our mind off of the wait with food and menial tasks, but the day continued to linger.
After they closed Reiss up, got her to the Cardiovascular Intensive Care Unit (CVICU), and had her hooked up to the monitors, we were able to see her. Almost 14 hours after we watched her go, we were reunited.
Reiss was completely sedated and intubated when we arrived. Here is what we saw.
- There were two nurses prepping her, giving meds, taking vitals, and documenting everything. They introduced themselves and quickly gave us an update on Reiss and the expectations over the next couple of hours.
- Machines pumping medications through her body for a variety of reasons were all hooked up and running.
- An endotracheal (ET) tube and breathing machine were helping her with her
respirations and air volumes. This was with its own monitor station, complete with an onscreen dashboard of pulmonary information.
- The orogastric tube (OG tube) was in place to help pump fluid out of her stomach.
- Her wrists were restrained so that she wouldn’t pull out any wires, leads, or IVs
- A new wound, this one running 6-7 inches down her sternum, completely covered her old one from her first open heart surgery. It was shiny, red and slightly inflamed.
We were told that the old wires holding her sternum together were cut and removed at the beginning of the operation. When they sewed her shut, she got 5-6 brand new wires. The tissue layers on top of the bone were then sewn together with dissolvable stitches. The skin was then glued shut, giving the outside suture line a shiny, glassy look.
- A monitor was hooked up to closely follow her heart rate, blood pressure, central venous pressure (CVPs), respirations, oxygen saturations, and temperature.
- Stickers, wires, and lines are connected all over – an IV in both arms, pulse ox light on a finger, lead stickers and wires on her chest, NEARS sticker on her forehead, central line in her neck, an atrial line in her left wrist, temporary pacemaker wires in her chest, as well as a chest tube (to drain fluid from around her heart) underneath her scar.
We were worried about her pacemaker, hoping Reiss’ heart would heal enough to start
pumping correctly on its own. Then, an amazing thing happened – Andrew, the attending on the floor for Wednesday evening, turned the pacemaker off and her heart conducted (beat on its own) perfectly for a small amount of time. He was pleased with this result, then turned the pacemaker back on to support her through the night. We were all smiles.
Turn of Events
Unfortunately, our smiles didn’t last long. Reiss’ heart stopped conducting, her blood pressure and pulse ox readings dropped, CVPs increased and she started coughing and gagging on fluid and the OG tube. This was the start to Day 2.
Throughout the day, the doctors tried different things to get her blood pressure (systolic needs to be over 70, Reiss’ dipped to 59), heart rate (between 90-100, she was at 155), CVPs (needs to be around 11, she was setting at 25), and pulse ox (in the 90’s, she was in the 80’s and lower) in line. She was given a steroid, which helped temporarily.
Part of her coughing was good – she needs to cough to get the fluid off of her hearts and lungs. However, Roy and I (and most of you) know that coughing has preceded hemoptysis for the past year. This was another worry of our’s. We worried that the increase in coughing would burst a vessel, or when they took the breathing tube out, it would injure her esophagus, and we would end up with significant hemoptysis issues.
We saw our first blood sighting when the nurse suctioned out saliva from Reiss’ mouth during a coughing fit. It was bright red. She said it could just be a side effect from surgery, but we had a feeling it was the hemoptysis – and made sure to voice our concerns throughout the day.
The most dramatic part of the day – the turn of events – came shortly after they extubated Reiss (took the breathing tube out). After the wires were out, I went downstairs to grab a drink and rest a bit. Then I got a call to come back upstairs. Reiss had coughed blood again.
A swarm of doctors came into the room, ENT was called (remember – this service did Reiss’ bronchoscopies in the past), expedited tests were ordered, and nurses rushed to push fluids. Echo and X-ray came in to see if there was any obstruction, look at volumes and flow, and make sure there wasn’t excess fluid. Blood was drawn to look at blood counts and other elements of her blood.
We tried/found out:
- Oxygen – after extubation, they did put a nasal cannula in to help with her pulse ox levels. After her hemoptysis and the decrease in her pulse ox levels, they upped the amount of oxygen given. She is still on this level, but it doesn’t seem to be really bumping her numbers up significantly.
- Pushing fluids – this worked the first time, causing her blood pressure to increase and CVP to decreases a bit. However, the numbers didn’t stay this way. When they tried to push fluids again, it did nothing.
- Took nitric oxide through a nasal cannula to help decrease the CVP and the backfill they saw on the echo in the pulmonary arteries – that didn’t work
- Since nitric oxide didn’t work, they put her on sildenafil (we were on this vasodilator at home for the reoccurring hemoptysis) – she will be on this throughout her stay
- ENT – this group showed up ready to put a scope in Reiss’ throat, but the surgeon vetoed it. They were made aware of Reiss, the current situation, and her history. If she has hemoptysis again, this group will most likely be called in again.
- X-ray – showed fluid in her right lung
- Echo – the superior vena cava (SVC) to right atrium (RA) connection – this is where they took down the previous Glenn and reconnected it to the heart – was not obstructed and neither was the pulmonary conduit taking blood from the right sided left ventricle to the pulmonary conduit. The ventricles were filling nicely, and pressures looked fine. They did, however, see that the pulmonary arteries taking blood from the heart did show some backfill. They thought this was most likely because the pulmonary veins are narrowed.
- Blood work – lactic acid levels, hemoglobin, CO2, and red blood cell count all were in normal ranges
- They pushed calcium – this helps increase blood pressure. She is not on this anymore, but could go on them again at any time if they see fit.
- Pushed epinephrine– this was to raise the blood pressure also. She is still on this, but will probably discontinue use tonight or tomorrow morning once her steroids kick in.
- Steroid for her airway – Reiss’ airway was swollen from the breathing tube. Consequently, when she talked after being extubated, it hurt and not much sound could pass through. The reason for adding this steroid was to help reduce swelling, hopefully making it easier for Reiss to breath. She will only need to take three doses of this drug.
- Steroid for her blood pressure – After all of the above didn’t consistently increase her blood pressure, they placed her on this steroid. She will take it throughout the day, each day until they decide her blood pressure has stabilized enough to warrant weaning her off of the drug.
Dear Heart: You have been reassigned
Reiss seems to be good for now. The medicine regimen they have her on is working, she is completely awake and taking direction well, and we are trying to get her moving to help get the fluid out. Her pain is evident, but we think we have it under control.
It is hard to say we are out of the woods at this point. If they wean her off of the drugs, we aren’t sure if her blood pressure will stay up where it needs to be. They just recently tried to see if her heart will pump as it should without the pacemaker (it is not that her heart isn’t pumping – it most definitely is pumping. The chambers just aren’t pumping in sync as they should be), but it still requires the pacemaker to help regulate its conduction.
It is Day 2 and we are only about 30 hours out from surgery. It is still early. The operation was a long one, wearing on this little one’s body. The heart was reassigned a new job – to pump in a biventricular fashion. The heart needs to learn its new circulation, and its structures their new jobs. Over the next 24-48 hours, we hope to see even more progress in this regard. Additionally, we are praying like mad to not see anymore blood.
Wow. When we gave people the ability to turn Facebook and Twitter orange, we didn’t anticipate the magnitude of the event. Facebook was completely covered in orange over the past 24-48 hours. Prayers and well wishes were most appreciated. I tried to get back to each and every comment – but I just couldn’t find the time (as you can see from the above post). Please know that you support was seen, heard and most definitely appreciated.
It’s also amazing the funds raised through our Go Fund Me page. We cannot tell you enough how much this will help our family – not only as we incur costs for food and lodging in Houston, but also for medical bills when we return home. Thank you.