Still here….

I was really hoping that this next post would bear some good news. We had a change of plans in that the surgeons said that a Broviac (a more permanent line) would be too big a risk due to there being a large clot running the length from Maliyah’s collarbone (left subclavian vein) to her upper arm (brachial vein). I was a little bummed because this meant that once we treat the blood clot we would then have to come back to get the Broviac placed. Nevertheless, we were set to have the new PICC line placed on Monday, August 17, and then be discharged today. I was soo looking forward to seeing Adam and getting back to our home today.

We had set up a number of procedures to be done back to back while Maliyah was sedated. They wanted to check to see if she had a PFO that was questionable on the previous echocardiogram. We were going to also do an ultrasound of her kidneys, a VCUG, and to recheck if the blood clot in her shoulder/arm had shrunk at all with anticoagulants. While they were rechecking the blood clot they found another one that was in the junction right above and in her SVC (superior vena cava), left subclavian vein, and right arm. A total of 5 clots! Unfortunately, they were not able to put the PICC line due to too much risk and and were unsure of what the plan was moving forward.

While Maliyah was getting her procedures, I was up in the room packing to go home when the doctors came in to talk to me. They told me the bad news and that we were back to square one. This was all pretty overwhelming for me. It’s scary to know that there are a number of clots in Maliyah’s body, and to know that at any moment one could come loose and she could develop a PE (pulmonary embolism). This could have serious implications to her. I was also pretty disappointed to not be able to go home. Living life in the hospital is stressful to say the least.

The good news was that the ultrasound of her kidneys came back mildly unchanged and the results of her VCUG came back saying that there was no reflux, which means that there isn’t anything significantly wrong with with her kidneys!

At this point we’re praying for a solution to put in a much needed line and to get home soon. We’re all tired and exhausted (except for Maliyah.

Thankfully Maliyah has been in great spirits. She calls every one auntie and uncle. She helps with taking vital signs and lets the doctors and nurses listen to her heart and lungs with out complaining. She loves going to the play room and has made a number of friends there. She’s even convinced a couple of them to push her around in her car and to blow bubbles with her. She’s learning to share and the playroom employees said that she’s always polite when she’s interacting with them. When she had an IV in her foot and was not allowed to walk, she was content with sitting and playing and letting Mommy push her around in her car. Her enthusiasm for life and joy in every moment is an inspiration to me.