Day 24 – Headache and Back Pain

This morning, Dr. B told us that Lanie will be taken for the MRI of her head today.  They are still trying to figure out why her headache is so terrible, her back pain, plus nausea — all of which occur when she sits up and when she lies down, it just dulls.  Neurology will look at the MRI and confer with the oncology team.  We probably will not hear results from the MRI until tomorrow.

It is important for healing that Lanie to be up and around, keeping her body moving, plus they simply do not want her to be in pain.  Dr. B also stated the blood patch, which was suggested by one of Dr. Maurice’s partners yesterday, was not an option for Lanie.  One, the timing of administering a blood patch would have been sooner; two, Lanie does not need blood injected into her system.

A rash is present all over Lanie’s abdomen, which started two days ago but was just mentioned to Dr. B this morning.  Dr. B looked at it and asked Lanie some questions, then concluded that the “easy” explanation is a reaction to drugs, although it does not look typical.  The rash was not noticeable to Lanie, meaning not itchy, hurting, nor bothering her at all.  Jordan is the one who noticed it about two days ago.

Dr. Haplin came in after Dr. B to speak about Lanie’s headache pain.  She is one of Dr. Maurice’s partners.  She stated that Lanie is so “complicated,” they just want to find the root of the pain (again, confirmation of Lanie’s rare and unique condition), not just increase the Dilaudid.  If all the pain stems from the lumbar puncture (LP), which is unusual to begin four days after the LP, then she only needs to be concerned with pain management while this headache runs its course; so if that is the case, increasing the Dilaudid would be fine.  Finding the root of the pain is essential.

One of the things mentioned was viral meningitis, which is something I personally am concerned about.  Lanie does not have the fevers, but she’s on so much Tylenol — and I asked the doctor this — it could be masking the fevers.  Also, the pain is in between her shoulder blades, not her neck.

Another point brought up today is kidney function.  The last blood workup showed the numbers have changed to indicate a negative turn in kidney function. Dr. B and Dr. Haplin both stated the cause of the negative change is probably due to the amount of Tylenol being administered to Lanie.  Lanie was taking Norco, plus extra Tylenol, but then it was stopped yesterday.  Now she is taking Fioricet, which also includes Tylenol.

I also spoke to Dr. Rodriguez’s nurse practitioner from the transplant team.  She stated that once Lanie is in remission, they will start the process for genetic testing for the stem cell transplant.  She will put someone in touch with me concerning the grants and financial assistance to help with certain aspects of the transplant process that insurance does not cover.

10:46 a.m.  Her pain is a 10 out of 10 right now.  The nurse (Allie) just told us that the Fioricet was changed to every 8 hours and the Dilaudid was increased.  Lanie asked who changed the Fioricet to every 8 hours.  Allie looked it up and told us it was the resident doctor, Naomi Roman.  Lanie asked to speak with someone because Dr. B’s priority was controlling her pain.  Lanie was angry and has every right to be because she is in so much pain.

I also understood, as Lanie did, the Norco would be stopped but not the Fioricet, which is the only thing giving slight relief from this headache.  Dr. Naomi Roman did come in just now and explained that Dr. B only wants Lanie on 2 grams Tylenol per day.  So she increased the Dilaudid to 4 milligrams and decreased the Fioricet because of the dosage of Tylenol included.  All of this change has to do with the decrease in Lanie’s liver and kidney function, which showed up in the numbers from her last blood workup.

Lanie was just given the increase in Dilaudid at 11:01 a.m.  We will see if her pain changes within 30 minutes.  If it doesn’t help, I asked Dr. Roman to contact Dr. B, and Lanie insisted that they speak to Dr. B and do whatever is necessary to control her pain because she cannot function.

11:36 a.m.  Dr. J. Madhu came in.  She is a dietitian.  Lanie’s weight has gone down so she wanted to make sure Lanie was eating.  She wants to send Lanie an Ensure twice a day.  Lanie explained her weight was so high because of all the masses.  Now she is at her normal weight.  They still want to send her the supplement.

12:15 p.m.  I asked Nurse Allie for Lanie’s Fioricet.  She gave it and now Lanie’s pain is a 4 out of 10.  Finally went down some but still there.

At this point, with all the different doctors and nurses coming in, I decided to log each visit Lanie had for the rest of the day.

12:45 p.m.  Dr. Martin, infectious disease here to help with antibiotics. Checked on Lanie’s rash and lesion in mouth. Will keep check on both.

1:23 p.m.  Nurse Natalie and Peggy Siegele, Nurse Practitioner (NP), from Neurology, came in to ask about headaches.  Lanie explained head hurts and how; where it hurts; where pain radiates when moved forward; and when leaned back, radiates to upper back; when sitting up, hurts in front of head; and she can’t put chin all the way down to her chest.

Without meds, her pain is a 10.  Headache is a 5 right now – or upper back is, and the pain is going towards the middle of her back.  Back pain is constant.  She explained that she’ll put her arms behind her back, while laying on her back, to arch her back some, which helps a little. While laying down, headache is still felt but bearable.  When this headache is really bad, she gets dizzy (visually), and it’s hard to tell the difference in vision as it relates to her headaches prior to being hospitalized and the ones now.  Light and sound bother her without meds, and she gets nauseous when she sits up.

She’s been able to see the pulse in her eyes for the last few weeks, like stars.  She explained how the ophthalmologist and ENT docs both stated she had “unrelated” fluid behind her eye, causing her vision issues.  Her perspective is also off in that one eye.  When she closes her eye or puts a patch on the problemed one, her other eye gets tired.

No history of migraines.  Family history is her Nana and sister have migraines. This headache is a strong, dull ache.  Before LP, strong ache, but incomparable to what she’s experiencing now, but also had neck stiffness.  Stiffness in neck started before hospitalization.

1:31 p.m.  Nurses are doing exam on her.  All her reflexes worked.  Headaches in past never debilitating. Hair follicles have a heightened sensitivity and feel like someone is pulling her hair out.  They’ll talk to Dr. Lee, Neurologist, then come back.

2:15 p.m. Lanie trying to Nap.

2:25 p.m. Dr. Rubenstein, Neurologist, with Natalie G. and Peggy Siegele, NP, came in again. Definitely worse when sitting up, headaches started night before last; no bending over coughing.  Dr. Rubenstein stated he’s sure she’s sick of telling people what her headache is like. Laying down back continues to hurt. symmetric rather than one side or the other.  Sitting up makes nauseous. Vision messed up to begin with.  Perspective different right now.  She sees her pulse in her eye (told Dr. R).

Lanie explained the rash all over stomach and now on back.  No numbing or tingling in hands or feet or legs. Dizziness fro headache is not quite spinning but some movement, especially when moving too fast.  Dr. R is doing another examination.  Checking eyes, following pen, hold hands out in front like holding a tray; making her walk around; making her walking one foot directly in front of the other.  New problem for Lanie, Dr. R says.

Possibilities – malignant cell related; no growth of cells so unlikely possibility. He’s sure related to LP.  Bloodwork causes pain; she has no platelets to clot punctures. Same with LP.  Leaking of cerebrospinal fluid goes into the meninges and they’re aggravated.  The chemo may have aggravated the meninges. When MRI scan comes, they’ll be able to determine.

If thick membranes, LP is the reason; if not, that would mean the chemo inserted during the LP is causing aggravation to the meninges. The doctor said something about it being chemical meningitis.  They’d give her steroids and, hopefully, she’ll respond to steroid treatment.  Can’t give steroids before MRI so not to obscure anything they’d be looking for.

Blood patch may be option for LP headache. Dr. R stated it may be this late after LP because Lanie has high pain tolerance, or it’s possible the cerebrospinal fluid may be leaking really, really slow still aggravating the meninges.  Doc and nurses left by 2:43

3:02 p.m. Dr. Rubenstein and Dr. B both thinking it’s an LP headache; so ordered Lanie to lay flat for 24 hours.  Restrict to no head elevation for 24 hours.  Also, she’ll be given extra fluid.  Caffeine increases CSF production so will look to see if they can order caffeine pills.  They don’t want to have a CSF headache for a long period of time. Lanie said she’d lay flat after head buzzed.

3:10 p.m. As Dr. R was leaving, nurse tech came in to take Lanie’s vitals. She has not had rest at all today.

Lanie had Jordan buzz her hair off because it was falling out excessively at this point, but she still had a ton of hair!!

9.27.18 Our beautiful daughter, Alehna

By five mintues to 6 p.m., Lanie said her pain was down to a 2 out of 10. She is being administered liquid Fioricet with fluids and is getting 4 mg of Dilaudid also.  She has told all the doctors that Dr. B insisted her pain be controlled so she can move around and function, and she’s extremely frustrated and aggravated right now because all her medication orders are different from person to person, and the nurses are confused.  She still hasn’t been taken back for her MRI. She’s finally lying down resting.

And it’s 6:07 p.m. now, her machine started beeping and the nurse came in.

6:14 p.m.  Nurse came in and asked Lanie if she wanted the MRI done at 11:30 tonight or first thing in the morning. Lanie said in the morning. She’s not getting the antibiotic menophenom(?)

6:17 p.m. Dr. Knouse came in (resident), from infectious disease, asked how Lanie’s headache is. He’s here to look at her rash. Took off vancomycin.  Dr. B stated earlier that she feels antiviral is causing Lanie’s rash.

Dr. Knouse repeated that Lanie’s liver function test (LFT) numbers are abnormal as of last night; moreso now than before, not necessarily that concerning at this point.  Lanie can no longer take any Tylenol; so going to change to caffeine only from Fioricet. Looking for other tests that could be causing headache, such as viral infection and they’ll do two ultrasounds in the morning:  one, to look for a blood clot; two — can’t remember.

6:41 p.m. Dr. Knouse, another resident under Dr. Bufalino, confirmed, after speaking to Dr. B, two different ultrasounds in the morning, and they’re also wanting to add something to her blood test – all bedside.  All about liver function and to make sure no sign of a viral infection. Lanie needs more platelets. Pretty soon. Dr. B talked about medicine, no meds with Tylenol. And because of ultrasound, no eating after midnight.

7:35 p.m. Nurses Allie and Eric both came in, asked if she’s eaten. She said yes. The MRI people were trying going to do hers now, but she ate because they said in the morning. Also, she’s in pain again in her back. She asked when she would get her caffeine pill. They both said the order was confusing. Lanie is highly upset and frustrated that they’re messing up her meds all day.

7:55 p.m. Dr. Wahle, resident internal medicine, coming in to check on Lanie. Lanie explaining her headache is coming back, back pain hurts, meds are messed up. Doc says IV caffeine is what was ordered; she’ll check on it. Lanie said she’s tired of the nurses being confused about her meds. Doc is looking at rash. Lanie explained off of vancomyacin. No belly pain, on chest.

8:07 p.m. Dr. Wahle is back with confirmation of drugs.  LFT numbers as follows — AST 778, ALT 656, ALK PHOS 639.

Between this time and all the way until almost 10 p.m., the nurses came in to adminster platelets, give Lanie her night time meds, caffeine, Dilaudid, Flexeril, and Benadryl, plus she had to do her antibacterial wipes.  She had a quick bite to eat afterward, and she is finally getting some sleep.  Eric, her nurse, said he would leave her alone until 2 a.m., when she will have to get vitals and labs taken again.  What a day and night!!! My poor baby girl.

Please continue prayers for our daughter.