2:06 a.m. Nurse Eric came in, took blood for labs; vitals were taken. Took about 25 minutes.
6:10 a.m. Nurse back in for meds. Tech was in as well, took vitals and Lanie’s weight.
7:40 a.m. Transport arrived to take Lanie to imaging for the ultrasounds.
(Lanie was given a unit of blood sometime here or with the 6:10 a.m. meds.
Here Hgb was 6.6. They are wanting to keep it above 7.)
8:25 a.m. Dr. B arrived to check on Lanie. She was still at imaging. Dr. B told me that liver function numbers were high yesterday morning, then in the afternoon went up into 600-700 range. That is why they “peeled back” on medications.
Now liver function numbers are coming down; so that is good. She mentioned that Dr. R, from Neurology, asked about giving Lanie a blood patch, but, again, Dr. B already said no twice. Yep, she said no again 😊as Lanie’s platelets are too low; so not a good idea.
8:35 a.m. Lanie came back from having the ultrasounds. Dr. B asked her how she was and how her headache was. Lanie said seems to be a 7 this morning so a little better. The Dilaudid and Flexeril are giving her some relief with the headache and upper back pain. Doc believes neutrophils should be coming back up this weekend. Ultrasounds were done to check for liver damage and a possible clot, which may be the cause of any liver dysfunction. Stopped the Tylenol yesterday to prevent any kind of liver failure.
The rash on her abdomen looks a little worse today. The bumps are brighter and there are more of them. Dr. B still believes it is a drug rash. If not better by tomorrow, after stopping the vancomycin, the antibiotic Meropenem will be changed to see if that is causing the reaction, if that is what it is. It could also be a viral infection.
Lanie is still to lay flat, rest, and have fluids. Dr. B says move around in bed while resting. She is not happy about that. She just wants to prevent Lanie from getting any clots. Lanie’s mouth feels okay. Doc looked at it and said lesion looks smaller. Lanie got a little bit of sleep – and now she is back to sleep again. Knocked out right before Dr. B left at 8:40 a.m.
8:56 a.m. Nurse Maryla W., from infectious disease, came by to check Lanie’s PICC line. Everything looked fine.
9:13 a.m. Lanie’s blood transfusion finished. Nurse Jane came in to disconnect the empty bag, write the numbers I requested on the board, and also said she would get Lanie’s next dose of Dilaudid. Hgb was 6.6; WBC .03; Platelets 36.
9:30 a.m. Nurse Jane came back in with Dilaudid. Lanie said her pain in her upper back is an 8 out of 10. Jane also put a Lidocaine patch on her back at Lanie’s request. She also asked about her MRI, if it was for her abdomen. Lanie told her no; it was of her head. I asked her to bring Lanie a Flexeril. She said she would.
9:40 a.m. Nurse tech came in to take Lanie’s vitals.
10:50 a.m. Resident Doctor Naomi Roman came in with the two medical students who have been working with Lanie’s oncology team. Dr. Roman explained that Lanie’s ultrasounds were negative for vascular issues and negative for liver failure. Everything was normal. Phew!
She still has a mass in her gallbladder, but they have known about that; she stressed to us it was not a new finding.
They also mentioned how unique and abnormal Lanie’s case is, and that she is probably the most interesting case in the hospital. They are just wanting to find out what is causing her headaches or to confirm that it is a post-lumbar puncture headache.
1:45 p.m. Dr. Rubenstein, the neurologist, came in to check on Lanie. He was surprised she has not been taken for the MRI. Also, we told him that Lanie was only being given 50 mg caffeine. He said it was supposed to be 200 mg. Lanie explained that the nurse cut it in four last night. I explained how, yesterday, all the different orders from different doctors were going in at different times, and the nurses were getting confused as to which orders were the finals orders. Dr. R does not know where the confusion came from. He said he will straighten that out. Also, he will be here all weekend; so we will know the results of the MRI when he does.
(Just a note that the nurses were confused, but they
were administering everything correctly.)
1:50 p.m. Nurse tech came in to get vitals.
1:56 p.m. Dr. Haplin was next to check on Lanie. She asked about Lanie’s pain. The Dilaudid seems to be helping some. Dr. Rubenstein also relayed a message to us through Dr. Haplin: He wanted Lanie to know he fixed what was messed up with the caffeine, and that she did actually receive the proper dose yesterday.
Dr. Haplin also said that the liver numbers were just a mystery, and they are all hoping to find out what the MRI shows (that she has not been picked up for yet) to rule out or confirm a meninges aggravation or irritation or something.
2:03 p.m. Cleaning lady came in right as Dr. Haplin was going out. She mentioned that Lanie’s rash could be a viral infection as well, but she hopes not.
At 2:30 p.m., I left to cook dinner and shower. I stayed the night in the hospital last night.
I get back at 4:45 p.m. Lanie is up and on her new MacBook with a hat on. I brought pork and gravy, rice, and sautéed zucchini and squash.
5:30 p.m. Transport arrives to take Lanie for an MRI. Lanie’s nurse came in and explained that the MRI would take 3 hours (WTH??!!) and asked if Lanie would like an Ativan. Lanie was shocked about the 3 hours but rejected the Ativan; she said she could stay still for 3 hours.
The nurse mentioned that she administered Lanie’s Dilaudid last at 3:30 p.m. I asked if she would be able to get it again if she would be able to get her 7:30 p.m. dose if she needed it. The nurse said she could take it down for her.
8:30 p.m. Lanie got back from having the MRI. She was hungry and ate dinner finally.
9:30 p.m. That’s a wrap for me. I came back to my apartment to finish this and work on some other things. It will be a great weekend for hanging out with my little girl and her precious Jordan.