This morning Hope was back to her old habits. She was completely happy until she noticed that I had entered the room. Suddenly life was horrible and she pretended to be miserable until I picked her up. Then life returned to normal and she settled right down. I was having an amazing snuggle with her when a technician came in to do an ECG and I had to put Hope back in her bed.
Last night Hope's potassium spiked to a dangerous level. It was 3 times higher than it should have been and could be deadly. Thankfully the staff jumped on it right away and were working at getting it down. Hope's heart rate was incredibly low, but started to climb up a bit as the day wore on. We can't seem to find the right place for all of Hope's electrolytes. They have been too low or too high for over a week now. We are hoping that, with the diarrhea improving, Hope's body will get back into a normal routine.
Over the weekend I noticed that Hope's right hand was much pinker than the left. This was a change and with the PICC line in that arm, it concerned me. I pointed it out to a few doctors and they decided to do an ultrasound this afternoon to make sure everything was okay. Unfortunately, it was not okay. Hope has a clot in her right arm. Thankfully, it is still quite low and has not reached her shoulder. With the line still in, there is a high risk that the clot will grow and could run into the neck. This is the exact area I have mentioned before. If this area clots, there is nothing more they can do, it will surely take Hope's life. Normally the line would be pulled to avoid this happening, but we don't have that option as it's also the line keeping her alive. This is the site that her TPN is running through and, until we begin feeding her again, this is vital to her survival as well. Once again, we are stuck between a rock and a hard place. Please join us in praying that this clot will not move a millimetre!
Now for some good news... Hope's left lung has slowed down a lot in its drainage! They are considering pulling the chest tube tomorrow as they feel the fluid may be at a low enough volume. If this is true, we would stay on TPN for the rest of the week at least, but should be able to start feeding Hope at some point next week.
If Boston and Toronto come back with an answer this week, and say not to operate, we may be Calgary bound! With the chest tube out and the Chylothorax under control, we should be able to return to the Calgary Children's Hospital. We will continue to await their decision and hope that we will be heading South soon.
Thank you to everyone that continues to pray for our family and especially Hope. She is full of complications, constantly doing things they have never seen before and is often thought not to survive. Yet I believe in a God that is able to do miraculous things. I believe that He is capable of saving her and am humbled by those that have chosen to believe and pray alongside us.