Update on Coughing Up Blood
Our last post about our new normal was the last time Reiss coughed up blood (yeah!)….until this Memorial Day weekend (boo!). She puked with some blood, as well as coughed up small blood clots for about 48 hours during the weekend. Even after getting through most of the week sans blood, I’m still waiting to see it every time she coughs.
We did hear back from the doctors in New York. While they were only given a portion of the information they needed (don’t get me started on that. The whole process of getting your records sent to the right place, in a timely manner, with all the requested information…..well, suck.), they did side with St. Louis Children’s Hospital (SLCH) in terms of the right path to follow. They believe that the Fontan is the way to go and if bleeding continues post-Fontan, they will continue to look for sources.
Children’s Hospital of Philadelphia (CHOP) has tried calling us, but we are just playing phone tag at this point. Hopefully we can connect to talk some time this week.
Surgery this Summer
Since we haven’t heard back from our second opinion, and our third opinion agrees with SLCH, we are continuing on the path that SLCH talked about the last time we were admitted into the hospital. Reiss’ cardiac surgeon has been out of town the last couple of weeks, so her case has not been put on the conference schedule yet. She is scheduled to be on the conference agenda on June 10th. The conference is held every Wednesday with a variety of doctors from different specialties to discuss cases, hoping to decide on the next step for each. After the conference we will know if they want more tests – like another catheter procedure (requires sedation) and/or another MRI (requires sedation). They may not know an exact surgery option until after these procedures are complete and analyzed.
We should hear back from the scheduling department to at least reserve the operating room this summer by the end of this week. It is our preference that this happens near the end of July, when Roy has his “dead week” from football and before preseason and school start back up for him.
Keeping Reiss Well
In between now and surgery, we need to keep Reiss well. I know I keep talking about this, that we need to keep her well because she is coughing blood, or because she can’t breath, or because….whatever reason. This time it is imperative. We’ve been a little laid back on taking her places since her coughing up blood decreased over the past 4 weeks. Now, as surgery approaches, we have to make sure she is well for at least 6 weeks prior to surgery. And if she does get sick, that only pushes back the surgery that she needs to (fingers crossed) help with coughing up blood and her breathing issues. If we get the date we want, that is only 8 weeks away. 8 WEEKS AWAY!
What Reiss Loves
Have I mentioned that Reiss is smart?! Seriously, people. I’m not sure where she even gets half the stuff she tells me. When she isn’t making stories and talking about catching fish, she is playing doctor. Giving shots and administering i.v’s are the norm. She also plays with a real stethoscope and follows the same procedures the doctors and nurses do – put stethoscope around your neck, introduce yourself to the patient, clean off your stethoscope, put it in your ears, tap the stethoscope to make sure it is working, check the heart, check the lungs, tell the patient it sounds great, put stethoscope back around your neck.
She loves to read, she now loves to play cards – we played UNO this weekend and she thought it was super funny. She loves alligators, sharks, cows and baby goats (i know, weird mix of animals). Side note: why can’t i find girls clothes with animals on them? Reiss has to shop in the boys department to get what she wants. She loves baby anything. “mommy, I hold the baby goat like this. I want a baby goat. Mommy, do you want a baby goat? I love baby cows….” Reiss also loves to be silly. Hiding, screaming, joking, trying to put things past old mom and dad, laughing with family and friends, dancing, singing, jumping and being crazy in general.