Emerson spent a total of 20 hrs NPO waiting for his turn to go into the OR. It was 8pm by the time we were called down and we were all exhausted & cranky. At 9:20pm the Surgeon came out and said the procedure went well and Emerson was in the recovery room. They had removed his Broviak line and placed a PICC line (peripherally inserted central line). Close to 10pm a nurse walks through the doors. I thought she'd be telling me I could go in and see my baby. Instead she tells me Unit 1 is looking for us.. They had let Emerson wake up without us there and taken him back to his room where no one was waiting for him. I was LIVID. On top of my rage, Emie's poor eye lids got really swollen from fluids and he could hardly open them. It was a late, stressful night for us all and Emerson didn't sleep the best. The next morning went fairly routinely. His eyelids were still extremely swollen but we were told they should go down throughout the day. His stooling had begun improving a bit and they were not giving him as much replacement fluid. At about 2pm Emerson's pumps started beeping "downstream occlusion" which was weird because the flow had been perfect minutes earlier. The nurse came in and couldn't flush or draw back on his line. She thought maybe he'd clotted so she went to ask someone about potentially TPA'ing (clot busting med) his line. JP was asking the nurse if a clot would be sudden because our experiences in the past had not been like this. She said no and left the room. A short while later our nurse and the charge nurse came into our room. The charge nurse said that the sudden occlusion triggered a red flag for her. They went back and looked at what infusions Emerson had been receiving and noticed that our nurse had made a MAJOR error. She had been running two incompatible products through his brand new line and it was now completely blocked with crystallized medication....... I cannot begin to describe the anger, pain, hatred, sadness, and helplessness I feel. I understand that everyone is human and errors happen.. but it is hard to accept when that error happens on your baby. We had just been through the ringer with trying to get this line removed and a new one placed and not even 24 hrs later she ruins it.. I am still at a loss for words and I don't know if I will ever be able to look this woman in the face. They tried putting hydrochloric acid in the line to bust up the blockage and let it sit for 2 hrs. It didn't work.. So we tried once more letting it sit for 4 hrs. In the meantime we had to give Emie his meds he'd missed getting through his IV so at 11pm we had to wake him up to give him oral cyclosporine and his antibiotic. Then at 2 am two nurses and the bedside physician came in and turned the brightest lights on to take out the HCL acid. Again, it was unsuccessful.. My heart is still in a million little pieces. My poor babe doesn't deserve this.. They then came and woke me up at 3 am telling me I wasn't able to feed E past 6am because they wanted to leave him NPO incase he was going back into the OR.
So today started off really, really bad. The Oncologist came into our room before rounds with a bunch of different plans all depending on what the Infectious Disease (ID) Drs had to say.. He told us we may be going in to the OR today to get another Broviak line (tunnelled double lumen central line) put in or he wanted to look further into what was causing Es fevers by sending him to get a CT scan to rule out a fungal infection. Both involved fasting and poking.. two of my least favourite things. So we sat and waited for IDs phone call.
We were called into rounds still very unsure of where the day would take us. GOOD NEWS. Finally! The ID Drs did not think it would be safe to put a new line in until Emie has been afebrile for 48hrs bringing us to Friday. Our Oncologist was okay with this and also said we could potentially get a scheduled time and not be put on the red list. He also said they told him E did not need a CT scan because the likelihood of it being fungal were slim and he didn't need to be exposed to radiation. We also decided Emie didn't need IV access until Friday because his stooling/fluid needs (so far) have gone down and he's able to take all of his meds by mouth. This may change depending on how his pooping goes. So we spent the day not hooked up to anything! They came and removed the PICC line in our room without complications. Today is the first day E has been tubeless in 5 months. Emie also hasn't had a fever all day! Which meant we were able to spend an hour outside. It was absolutely glorious :)
So now we wait and hope Emie doesn't require an IV before Friday. They told us they hope to get him in for his line placement at 2pm. We are praying for no fevers, a quick OR visit, and that we get to go home in the near future.
Thank you to everyone who gave words of encouragement and sent prayers/positive vibes our way. They mean the world to us!
D
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