After Reiss got her chest tube out on Monday, the next 48 hours went by pretty quickly. Her echo, x-ray, pacemaker, and EKG tests came back good enough to warrant a discharge for Reiss, and they sent us home with a long list of “don’t do this.”
Over the next 6 weeks, Reiss/we cannot:
- lift, push, or pull anything that weighs over 5 pounds (including her body weight), or perform repetitive movements (like ball throwing)
- pick her up from underneath the arms, or pull her by the arm
- play on a bicycle, trampoline, swing set, playground equipment or anything else that she can fall from and hit her chest.
- be in crowded places such as school, church, birthday parties, family reunions, sporting events, grocery store, etc
- follow up with Reiss’ pediatrician, cardiologist and pulmonologist
- supervise closely when playing with other children
For now, we are watching Reiss pretty close. She wears a mask when we leave our room at the Ronald McDonald House, and we have what seems to be an unending supply of antibacterial solution everywhere we go, after everything (I mean everything) we do.
Reasons for such strict protocol
- Her surgical wound, especially with two open heart surgeries in 10 days, is still healing. It will take her sternum 6 weeks to fully fuse back together. Until then, if any bacteria gets on her wound, it will be able to go directly to her heart, causing major issues.
- Her pacemaker is on her lower, left hand side, just underneath her rib cage in her belly. It is still healing, also. Any blows (big or small) to her belly, could dislodge her pacemaker box, or its leads. We learned during Reiss’ pacemaker test on Monday that her escape rate was in the upper 40’s, not the 70’s as previously thought. That means, if her leads break or become detached from the heart, it will quickly become an emergent situation since her heart is mostly dependent on the pacemaker to survive.
Reiss went home on a handful of medications
- Lasix – a diuretic to reduce the build-up of fluid in her chest and around her pacemaker incision
- Aspirin – to help thin her blood and reduce the probability for blood clots in her pulmonary conduit
- Antibiotic – the is customary to reduce the probabiolity of infection after surgery
Prevacid – for acid reflux. We were on this prior to surgery
- Sildenafil – we were on this before surgery to help relax her vessels and reduce the probability of hemoptysis (coughing blood)
- Iron – we didn’t take this at the hospital, but will continue this post-discharge
During her hospital stay, she was never on any allergy or asthma medicines. Before surgery, she was on a pulmicort nebulizer treatment twice a day, and Zyrtec and Singulair both once a day. These medicines were prescribed to Reiss in March 2015 after the doctors in St Louis couldn’t diagnose her reoccurring hemoptysis. The idea was that if we could control the cough that was causing her to burst blood vessels, we could control the hemoptysis. So, they prescribed allergy and asthma meds hoping it would help. It has never helped. In fact, her hemoptysis didn’t really seem to get better until Sildenafil was prescribed in July/August 2015. At our last local pulmonologist appointment, we talked about trying to wean Reiss off of these medicines slowly post-surgery.
Looks like we have successfully weaned her off of these meds over the last two weeks. We have never seen any increase in nasal drainage or coughing because of it. I do believe that her headache the day or two post-surgery could have been partly due to the lack of steroids (the pulmicort) in her system. I have seen it before when she has missed a couple of treatments at home. We asked that the doctors at Texas Children’s call our pulmonologist at St. Louis Children’s and ask if we even needed to readminister this allergy and asthma regimen. The answer was no. No more breathing treatments and other allergy meds! Hooray!
Reiss had some physical therapy while we were in the hospital, but she consistently had issues with her right foot. Instead of walking heel-toe, she was dragging it and walking on the outside of her foot. The PT thought that because she had two open heart surgeries in 10 days, coupled with the inability to get out of bed and move to to pacemaker leads for those 10+ days, she has become weak and tight in her hips, causing her foot to turn as she walks.
This has improved slightly since discharge, as we are working on it daily. However, we will probably need to get a prescription for physical therapy from our pediatrician to fine tune her technique once back in Springfield.
Keeping a 3-year old occupied and safe
It is interesting – trying to keep a child both occupied and safe from slips, trips, and germs. Most activities outside the House include large groups of people, which is a no-no. So we stay in. We have many activities, including a tablet, we can do in our room, which helps. We also go to the play room in the Ronald McDonald House . Other than that, we don’t do much.
If the weather isn’t too hot or wet, we may make a trek out to the walking trail near here. We’ll just have to wait and see.
Thank you for all of your thoughts and prayers! We believe in the power of prayer and its major role in Reiss’ recovery.