Last night when Sarah asked me what was for dinner at around 10:30, my response was interventional radiologist (IR) sliced and diced with a side of prickly resident.
After I posted yesterday, we had a really rough evening. While Gracie’s central line surgery was technically a success, her recovery was anything but smooth. When the IR doc spoke with us yesterday, he shared some of the challenges they encountered during surgery and all of the impromptu decisions that resulted. For one, the catheter that they insert has to do a loop up in her neck near the shoulder blade (under the skin). It didn’t want to loop, so they tried for a while to push it deeper and deeper to get it to loop. Ultimately they made a tiny incision to help make the loop. He closed it with superglue. This challenge led to a longer surgery than we expected.
‘All good and well. Thanks so much for passing along the info.’
The problem was that while they were pushing the must have burst a capillary or two, causing the point of entry to bleed more than expected. The IR told us it was "oozing" and we were instructed to apply a little pressure and the bleeding would stop after a few minutes. When they took Sarah and I back to see Gracie in the recovery room, she looked ok. One of the Post Anesthesia Care Unit (PACU) nurses, we’ll call her Helen, was holding her all swaddled up in a rocking chair, rocking and soothing her while applying pressure to the spot. The other PACU nurse, Zelda, was sitting in a chair working on her documentation.
Gracie was squirming and wiggling in Helen’s arms, clearly not liking the pressure she was applying. Helen was really good with her, trying to keep her calm. Zelda, on the other hand, was very clearly annoyed by our presence. I guess we were in her way. No amount of “thank you” and small talk would warm her up. Zelda was our primary caregiver in the PACU, while Helen was the charge nurse, helping out because the PACU was winding down and because she loves Gracie, remembering her from our previous visit back in February. Zelda gave us no reason to trust her, or to have confidence in her.
Without going into too much detail, Gracie’s oxygen saturation was running low, which the nurses attributed to the lead placement. Fine, I asked them to replace it to make it more effective, as it was scaring the crapola out of both Sarah and I (especially sensitive to this after our previous incident). They replaced it but the numbers were still too low for our taste. Still Zelda and Helen were unaffected. As the numbers continued to drop, both of us vocalized our concern again, and Zelda finally decided to follow our suggestion to increase the oxygen levels around Gracie, to help her out a bit.
The numbers moved up. Whew!
Then, Helen decided it would be best to go ahead and lay Gracie up on the bed. Helen didn’t have the best grip, but got her up there. While rocking Gracie in the chair, Helen changed blood covered gauze pads frequently. I’d estimate about 10 pads in the 30-45 minutes we had been there to this point. When she removed her hand once Gracie was up on the bed, we got to see the horrible insertion site of the catheter. Gracie’s skin all down the left side of her body was stained dark red with blood. The “oozing” site, was not just oozing, it was running. Seeing this pushed Mommy closer to the edge, and made both of us a bit antsy to get this bleeding stopped. Helen also seemed pretty concerned that the bleeding was still so strong given all of the pressure applied so far.
At this point, big bro instincts took over and I started to demand things. Info on how long they had been applying pressure thus far? Answer – nearly 2 hours. Questions about other options? None. Demands to talk to the doc? Zelda called the IR at home (she heard his dog barking) and he insisted that we continue to apply pressure. We didn’t speak with him.
After 20 or 30 more minutes and still bleeding, I started to pressure Zelda again. She didn’t like it, and at one point told me to get out of her chair. I wish I had know the Chief Nurse Executive’s name right at that moment, just to drop names and be an ass, but I didn't. Sarah did speak with the BMT resident over the phone, who also said 'just continue to apply pressure,' even though she had never even seen the chart, any images, or Gracie and her catheter. Sarah let her know what she thought about that – uncle Mackie was very proud of her for standing her ground. Apparently, the resident couldn’t drag her sorry ass down two flights of stairs to speak with us in person and to see what we were dealing with.
There was an anesthesiology resident walking by, who offered to help us out. I feel sorry for him, because by the end of the night I was handing him four letter word after four letter word, not about him, but about his medical colleagues and their unacceptable response. Sarah and I were both concerned about unnecessary infection risk of being in the PACU and just this open wound in our little immune compromised baby. Central line infections can be really serious, and will be all over the docs’ collective asses to be sure the rule out any problems.
After about 3 hours of this and still pretty heavy bleeding, there was no more nice chit chat. Both Sarah and I were in high complaint mode. Poor Helen was totally on our side, but unable to do anything. By this point, Zelda stayed away from us as much as she possible could. Because the PACU was pretty slow, and we were causing a stir, Gracie’s little bay could’ve used some stadium seating.
We had our friendly and unsuspecting anesthesiologist call the surgeon again. Again, he came back with continue to apply pressure. FINALLY, he got the resident to come down. Helen asked us to step out for a minute, and told off the resident. Go Helen! We finally went back up to our room of 5-D, and Sarah held Gracie while the nurses took turns applying pressure. At 10:30, it seemed like the bleeding was slow enough to just cover it up. When I looked at it this AM, it had bled quite a bit more, but was truly “oozing” at this point.
Ultimately, the IR doc was probably right. We needed to keep applying pressure. However, spending 4-5 hours doing it was the wrong call – or at least having us at the bedside while they do it was the wrong call. After an hour, they should given her platelets or something to help the clotting. After 2 hrs, one of the docs should’ve been at Gracie’s bedside, either applying the pressure himself, or coming up with alternate solutions. The worst part was the horrible communication of what needed to be done.
Another problem with all of this was that the IR doc didn’t know where the source of the bleeding was, so we were to move where we applied pressure up and down the catheter until we found the spot that made it stop bleeding. How do you do this? It’s one of those statements that makes sense to the person barking the order because he doesn’t have to think about executing the order.
Zelda told one of the docs that Gracie had been losing about a teaspoon of blood every 5-10 minutes. Multiply that times a few hours and you can imagine the mess Mommy was going through.
Ok, this is dragging on too much. I can’t do the event justice, other than to say it was all infuriating and exhausting. Poor service. Bad manners. They forgot that Gracie is OUR baby, not just another baby. :) Both Gracie and Mommy slept better than usual.
Argh. I really would eat him.