I have seen so many heart babies get sick with a cold and end up in the hospital for weeks and weeks, and every heart mama knows that something insignificant for a healthy child could mean days or even weeks in the hospital for our heart kiddos.
This week tiny P got sick. One day her oxygen sats were lower than they should be, and by that evening she had a low grade fever. The next day her temperature stayed at 103 even though she took tylenol around the clock (transplant kiddos can’t have ibuprofen).
She stayed on the couch, and was just miserable. I talked to her cardiologist, and her team several times a day while we debated what to do…
We decided that since she was able to take in a ton of fluids via her g-tube…can we just talk about how much I LOVE having a g-tube?! In normal life we use it just for meds, but when our baby is sick, and not eating or drinking? We pushed so many liquids through that tube, and it was a life-saver… anyways, she was getting fluids, and not losing her meds, so everyone agreed to keep her home.
Then she got the croup. Hello, freaky cough…and we went to the ER. By this point in our week, little M had joined tiny P and had a cough, and had stopped talking because it hurt, so I took her along to the ER with us. Little M had pneumonia (heart kiddo with weak lungs turns a cold into pneumonia!).
So sad. This week has been all about taking care of our sick girls and getting them back to a healthy place. Little M is getting there, but tiny P will probably be sick for a while.
This is the way of things with heart kiddos…add in those immunosuppressants after transplant, and her little immune system cannot fight off infections.
We are still keeping a close eye on her temperature, and her oxygen sats, and her team checks in with us daily. We will get more blood work done this week to make sure that nothing bacterial is happening…we want to make sure we are keeping her heart safe!
Hopefully this won’t last too long, and we can keep our girl home!