It’s like walking on eggshells around here. Everyone is holding their breath in anticipation of Lizzie’s upcoming surgery. This week has been a chaotic blend of frustration, fevers, errors, relief, and protection. Lizzie started Monday with a fever. Cultures were ran, more tests were done in attempt to find the source. On Tuesday everything was coming back negative but Lizzie’s face had swollen so much she was unrecognizable. It was so bad she could not open her eyes, and while I have been taking daily pictures of her, I did not have it in my heart to take one. I don’t want to remember her that way. An ultrasound was ordered to rule out a blood clot in her PICC line (peripherally inserted central catheter, aka super IV inserted in a vein in your arm that goes to the vena cava/large vessel near the heart). The tech spent a large amount of time studying the fuzzy screen and looked puzzled. He called the doctors in and eventually the radiologist, turns out her PICC was in an artery. The possible ramifications and the what if’s of this error make me want to throw up. Fortunately none of the meds she received through her line were caustic, and there doesn’t seem to be any damage. But there will always be the question of “what if she actually received the medications the way they were intended to be given?” And then there is the terrifying reality of what could have happened if the tiniest amount of air had entered her artery… I can’t even go there. Livid doesn’t begin to cover it. For 20 days Lizzie was at risk every time her “IV” was accessed.
I could go into great detail about who’s at fault, why this happened, and blablabla but it won’t make any difference. The ball was clearly dropped at the expense of my child, and I had to call Josh to come help calm me down. What’s important now, though, is the ball was caught before major catastrophic damage occurred. I’m trying not to dwell on it beyond what’s already occurred and I still feel confident in the surgeons and primary doctors handling Lizzie’s case. Switching hospitals at this point is not an option for our family so we are continuing our ride in trust. Please know (if you don’t really know me well) that I am not one to sit around and remain quiet if I feel something is not right or if I feel my child is not receiving the best possible care. So please do not worry about that. I am also a former PICU nurse, which makes me the worst kind of busy body momma (for the other nurses at least). We have discussed at length what coulda, shoulda, and will happen from this point on with her medical team. While we do keep meeting hiccups and rather large bumps in the road, a majority of Lizzie’s issues would have happened wherever we had this done. We are where we need to be. I cannot imagine our family also being separated by huge distances during this time. We can at least trade out and/or sneak home occasionally for a shower during nap time, well we could if someone didn’t run off with the car keys leaving me trapped all day like a caged animal (I won’t name any names, Josh Fowler).
You may be wondering why I decided to share this, especially after I said I didn’t want to dwell on it any more. I don’t know why terrible things keep happening to my baby and I want this over with, a long time ago. I’m doing my best to find the good in all things and there has been some good. All of Lizzie’s cultures came back negative, even the viral ones. There were no clots found and really no reason for the swelling. This morning when I asked the doctor what he thought about her unexplained fever and crummy week, he asked if I wanted the scientific or nonscientific answer. I told him to hit me with the non first. He replied with “the nonscientific answer would be so we would know to get the picc line out”. That was enough for me but I was curious what his scientific rationale was so I asked for that answer too and he said, “there is no scientific reason. Your Christian faith has protected your daughter, my friend”. Ummm, how cool is that?! I love Dr. Taeed, he has a way of keeping things real. Today I am again reminded we are not working on my time table and definitely not my playbook, but there is an ultimate plan, there is reason. By the grace of God my daughter was protected.
Barring no fevers or other major set backs, Lizzie’s surgery will take place Monday morning. The surgeon and his nursing entourage came in to discuss the details of the surgery (again) and go over the consent form. When he asked if I had any questions, thoughts, or comments I realized just how different this go around is. With the first surgery I was cocky, arrogant if you will, everything was going to be perfect. But just to be safe (and realistic) I allotted for a 3 week recovery rather than the typical 2 we were told to expect. And the second time surgery was scheduled I still tried to manipulate it into my timing, what worked best for me. That did no good. This time around I am resolved to just go with whatever is best for my child. I have learned I am powerless. I shared my deep thoughts with everyone and then continued to ramble about cakes. ICU psychosis really must be setting in, when Dr Husain told me just how ready he was to get this done, I proceeded to compare his prep and build up to operate on my daughter to my cake making. I went on and on about how I think about the cakes for weeks in advance and how the night(s) before I actually decorate it I cannot sleep, yadayadayada. He was gracious enough to nod and say he was totally following me. Lol. That’s right, decorating cakes is almost exactly the same as operating on teeny tiny baby hearts. Oh Lord, I need out of here!