Today we had Hope's monthly cardiology appointment at the hospital. We were happy to hear that her heart function is still looking good on the echo and all the surgical corrections are holding well. Her strider is still very present and causes her to labour quite a bit while breathing. The cardiologist was reassuring that this is not causing any distress on her heart and she is tolerating it well. He did caution that if she were to get an infection of any kind, that it would push her over the limit and could be very dangerous for Hope. Please continue to pray that Hope would stay totally healthy and germ free until her body is ready to handle an infection.
Hope also had blood work done for the second time this week as her blood thinner levels were too low to keep her clots in check. We haven't heard back but I'm assuming the higher dose of blood thinners will get that back under control and she shouldn't have to be retested for another 2-4 weeks. Both times we visited the lab this week, we had the same technician. She was amazing, she got Hope's vein on the first poke and was very quick. That is not an easy task with Hope's tiny veins and I was so excited to not see her suffer for too long. Praise the Lord for that awesome victory.
Hope was not a happy camper during our visit to the hospital today. She screamed through the entire echo, we even had to take a break to let her get her oxygen levels back up. She screamed through her weigh in, blood pressure and physical exam. She screamed so much through the first 2 hours of our appointment, that she slept through the exam with the cardiologist! These appointments are not only difficult for me to get to with our schedule and Sadie, but they are also terrible for Hope. She is absolutely terrified in the hospital and knows that she is often "hurt" while she's there. Please pray that I would be able to comfort her during these stressful times and make her feel safe.
When we finally headed back to the car today, 3 1/2 hours later, Hope threw up all over herself from her constant screaming. I didn't want to make her angry by taking her out to change her and get her cleaned up, so I popped her in the car and drove home with her covered in vomit and soaking wet. As I expected, she fell asleep as soon as I started to drive. I'm thinking the carseat could use a good clean, maybe I'll get around to that next year!
A new dilemma in our house...Sadie has started to shove things up her nose! So far it is just small pieces of kleenex or toilet paper. Today I had a friend pin her down while I went up her nose with tweezers to pull out these masses of tissue. She had been really grumpy all day and I assume it was from these masses in her nose. I don't even think they were from today! I did manage to get it all out, I hope so at least. The last thing we need is for Sadie to end up in the OR with something lodged up her nasal cavity. Please pray she was traumatized enough today from the extraction and will remember the pain when she considers shoving something else up her nose. I'm pretty sure the obsession with her nose is a result of Hope's feeding tube. She comments on it all the time and asks to have one! She asked me so many times one day, that I attempted to put one in and show her how much she wouldn't like it. I was barely in her nose when she changed her mind, they weren't as cool as she thought.
The nice part about the cardiology clinic visits is the care we receive. Anyone who has been following along from the beginning may remember when I took Sadie for her echo. I commented that all the other parents there seemed to know the staff in the clinic very well and had a relationship with them. The staff are very sensitive to the journey heart parents are on and are so understanding. I have been amazed at the things they pick up on, not just with Hope, but with the emotional toll this all takes on us as parents as well. I am truly thankful for the team that works with Hope and feel blessed to have people that care about our family as a whole.
Tomorrow morning we head back to the hospital to do our pre-op appointment for Hope's MRI. She will be put to sleep for the MRI and the anaesthesiologist needs to see her before this happens. We were hoping to get an official MRI date tomorrow but have been told that it might take another week before we get that. We are really hoping for a date in August and would love for you to pray that we can get a date as soon as possible. We won't be able to receive a surgery date until after the MRI, so much is up in the air until we have that surgery date and we are waiting, but not patiently!