We talked to Dr. McKenzie’s nurse practitioner this evening about the plan for Reiss’ third open heart surgery in 2.5 years.
After further review of the CT scan, echo, and Reiss’ stats, the team decided a pacemaker is necessary. As mentioned in our post yesterday, Reiss is already at a high risk for needing a pacemaker in general because of her specific type of heart defect. Instead of trying to wait a couple days longer to see if her heart would conduct properly, the decision was made to go ahead with the surgery.
Additionally, they found some narrowing of the left pulmonary artery (LPA), just distal of the conduit/pulmonary branch connection. The narrowing, according to the NP, is pretty significant. If Reiss didn’t already need a pacemaker, this could be ballooned through a cath procedure. However, Dr. McKenzie will already have her sternum 0pen for the pacemaker procedure, so they will address the issue then. Most likely, they will augment the artery with a patch material to widen the vessel instead of trying to balloon it again.
While our pulse ox saturations have been better than usual with readings in the low 90’s, they have room for improvement. By adjusting the LPA, we hope to bump that up to 100.
Side note – I know you were wondering if Reiss finally had a BM. She did! We are glad that happened before they put more sedation and other meds through her system, which could all add to the issue.
Reiss will be NPO (no food/drink) at midnight today in preparation for a 7:15am start – the first case in the morning. She will need to be on the heart/lung machine again for a small amount of time while they repair the pulmonary artery, but at least the surgery will be shorter than her previous one on Wednesday, which lasted 11 hours. The NP projected the surgery to be complete by noon.
Tomorrow will be different than Wednesday. Reiss will not be as carefree and just jump on the anesthetist’s back to go to the OR. Thankfully, she already has IV’s and other lines still in and working. They will give her a medicine to make her loopy and easier to separate from her family.
Reiss will be groggy, recovering from the surgery for the rest of the day Thursday. Friday, however, will start a new physical therapy regimen – including getting up and walking. Walking! I’m so excited to get her up on her little feet. I believe wholeheartedly that once she gets up and walking, her recovery will progress significantly.
Some pacemakers are attached to the heart through a vein, and nestled up underneath the patient’s collarbone. However, in a child the size of Reiss and with her defects, they chose an Epicardial option. The leads are sewn into the external surface of the heart and the pacemaker is placed in the upper abdomen under the rib cage.
The pacemaker is pretty small (pictured, left). The dimensions are about 2″ x 2 ” x 0.5″. The picture only shows one lead with two branches, but Reiss will have two – one will have both branches sewn into the right atrium, while the other will reside in the right ventricle.
The pictures below show a diagram and description of the epicardial option and how big the pacemaker is in reference to Reiss’ hand.
What to watch for at home
Here are some things we will need to watch for that will alert us to pacemaker, leads, or battery failure while at home.
- Twitching in her stomach or chest muscles
- Hiccups that won’t stop
- Trouble breathing
- Constant Fatigue
- Chest Pain
- Extra skipped heartbeats
- Call the doctor if she falls or is hit on the pacemaker site
Luckily, we will go home with a bedside monitor. This monitor will download all of the pacemaker’s daily information and send it directly to Texas Children’s Hospital without us having to do a thing – other than sync the two daily. The receiver is mobile and can go where we go if we want it to. This will help put our minds at ease if we feel like her pacemaker may not be functioning properly.
Also, we will go home with a pacemaker identification card for when we travel. For instance, we would have to present this to airport security if we chose to fly.
Reiss’ Fixed Heart
Fixed heart. This sounds foreign to me, and, technically, is a complete misnomer. Reiss’ heart may be mended, made to function to increase quality of life and function, but it is most definitely not fixed.
Congenital heart defects (CHD) cannot be fixed.
It is a lifelong battle. For some, it means transplants, multiple cath procedures, or open heart surgeries. It is lifelong maintenance, pacemakers, testing, and follow-up appointments. It includes machines at home, tubes, syringes, medicines, and becoming OCD with antibacterial solutions. Some children live into adulthood, while many children lose the fight too early.
There is not a cure for CHD.
While we will want Reiss to experience life to the fullest, there will always be something she is not allowed to do – contact sports, MRIs, or anything that could compromise the safety of Reiss and/or her pacemaker.
Reiss’ mended heart will allow her to be around family more often, play more, do more, learn more about life, as well as greatly extend her life in comparison to what the Fontan promised. We are ready to get the pacemaker placed, start her physical therapy regimen, and begin to make large steps in the recovery process.