Week 4: Friday

It's hard to believe my last post was Sunday.  I am very much tired but have to tend to my motherly duties.  The week has been long and tough to bare.   
Monday, we went to Georgetown University Hospital for a PET Scan and CT.  Jasmine had to be sedated.  How else would you get a 3 year old to sit still?  David just got home from work just hours before I was trying to get him up.  Of course, the bag I packed had a dissatisfying assortment of t-shirts and he went through and made some changes.  I made sure to pack the car and get everyone out by 7am.  I put the GPS to work and the arguing began from the passenger seat.  I merely pulled out the driveway with no response.  Yes, I was taking my final statement from my last post seriously.  It wasn't until we got closer to DC traffic did it all begin again.  All I could hear was "Stupid &*#@&@$ TomTom".  Yes, the TomTom had us going in circles.  We did get there as we scheduled we would but it was not easy due to traffic.  There was roadwork everywhere we went.  The hospital was nice but it took a while for them to get Jasmine sedated and scanned.  The poor child had not eaten in several hours.  I hate afternoon sedation.  She did well for her sedation and scans.  Everyone wondered why we were doing treatment in DC instead of UVA.  We tried to put it nicely.  "We were not satisfied with the information we received from the oncologist and decided to seek a second opinion", is what we said.  I could feel the spark run through me when the subject was brought up and wanted to say so much more.  I'm glad I kept my cool.  After getting Jasmine to wake up we headed out into the traffic from hell.  As before, the TomTom picked up just where it left off.  No Signal.  Which way were we supposed to turn?  David told me to turn right and I asked why didn't I hear the gps.  That was the last straw.  David ranted profanities until I exploded myself.  I let out a few of my own with a final SHUT UP.  I told him it made no difference to me who was directing me anymore, I just wanted to get there in one piece.   We had to go way over the other side of DC to the Ronald Mc Donald house. It's similar to going crosstown in NYC except the street grid makes no sense.  It's no wonder why there are so many accidents in DC.  The design is to fault much like the politicians who live there. 
We finally made it through traffic and relied on the gps again after it had been resuscitated.  Mind you, this didn't go without the occasional statement of negativity from my other half.  " TomTom has us driving through the ghetto, " he said multiple times.  There was some truth to it but what else could we have done.  Should I get out and start asking for directions to have someone think of me as an easy target?  Sure, why not, and get car jacked while I'm at it.  It's only got 150000 miles on it. Best of luck trying to sell parts from a Hyundai. 
Once we finally got to the Ronald McDonald House, the tension eased SLOWLY. We tried to unpack necessities and figure out what to do about dinner.  We decided to order a pizza for dinner.  David tried to catch up on some sleep while since he hadn't slept almost at all. Jasmine and I headed down to the kitchen to have some clear liquids and some crackers to start her diet up again.  We played in the playroom for a little while and went back up to the room to watch some tv.  The room was cold and the heat was not working. I changed her clothes to something warmer. When David got up we ordered food from a local place but that was another bomb in the making.  What we ordered was incorrect.  It was late and we had to call Dominos.  Never again.  It took a total of 1.5 hrs to get dinner for me and Jasmine. She ate half a medium dominos pizza all by herself.  My girl had a healthy appetite.   What can I say?   She hadn't eaten in a while and she needed something on her stomach to start off her treatment.  
First thing Tuesday morning and I was up taking a shower and kicking everyone out of bed. Yes, kicking them out of bed.  It was cold again but we had to wash the sheets as part of the rules while staying.  I ripped the sheets off and ran down to start the loads.  I packed us up and cleaned the bathroom (another rule).  We fixed ourselves a cup of coffee and made sure Jasmine ate something.  David took out the kitchen trash.  We were running behind schedule.  The wash had taken longer than expected.  I packed the car up and I told the person in charge that the wash was still going.  I handed her off the key with our donation and thanked her.  
We got in the car with our frozen gps again.  This time I knew my way around a bit more.  I'd been her before and remembered it.  We got there in no time.  I didn't accidentally run any lights and felt more comfortable. We checked in and off we went.  

It started off smooth and we mentioned to the staff what drugs worked best for her nausea.  It appeared Jasmine was one of the few that used these and the more common drug was ativan (did not work well for us last time). We asked them kindly to stick to this method around the clock.  We knew she would be asleep for most of her stay with this combo but it worked better than the other.  We experienced sickness once again. This time me and David both received some as well.  Jasmine went through 2 changes of clothes in under an hour.  She hated vomiting and so did we. Jasmine fought us many times.  Her strength was unbelievable.  She refused to sit up as we tried to force her up.  She locked every joint and vertebrae to resist our efforts.  On top of everything she insisted on holding it in as opposed to letting it out.  Yes, she was swallowing her own vomit.  She gritted her teeth after every time.  It was horrible.  I could never do that.  The thought just seemed so painful.  The girl was made of steel.  Every once in awhile she would let one go.  In an effort to catch her erratic spills, I followed her with a bucket while David held her.  She kicked the bucket and it landed over David.  Yeah, he was going to hate me for that one.  I changed her sheets and it happened again.  We needed help.  We called for the nurse and they got on it.   They finally gave us a gown for Jasmine.  We got settled again with clean sheets, new gown, new shirts for me and David.  I went to work in the bathroom trying wash out all that had been dirty.  The clothes would be ruined and not make it if I didn't do it then.   I rung out and hung what I could.  
Interesting little fact that one of the nurses shared with us.  We should have been using gloves to hand anything that had been vomited on as well as her diapers.  Yes, I had to wear gloves while I changed my own child's diaper.  I haven't done that since we went searching for her hearing aide battery.  
After some sets of sickness throughout our stay, many staff members asked us if we wanted to try ativan.  I said no every time.  We stuck to our guns.  We knew this combo was one for us and did not want to be steered in a different direction. The result of the other was horrific.  
Thursday came around and we had finished her chemo the evening before.  Now it was just waiting for IV fluids and nausea meds to continue.  We had a plan from our wonderful nurse who came back from rounds.  She asked the docs if we could bend the rules a bit and be out by 4:30.  This would put us home by 8:30 maybe 9.  I was thinking it was perfect timing.  Until the residents changed shifts.  Great.  The plan was changed without us knowing.  I had packed the car and got Jasmine's clothes ready thinking we would be leaving.  Hell, we even got the paperwork started for discharge.  
The resident walked in to propose her plan and I thought we were getting our final pat on the back.  More like stab in the back.  She wanted Jasmine to have a movement.  Good Luck with that one.  SHE HAS NOT EATEN IN 48HRS.  Yes, her last movement was Sunday but she fasted on Monday.  Monday she ate dinner and chucked it up on Tuesday. What goes in must come out, right?  It did.  What did she want back, Jasmine IV fluid? She had nothing more to give but fluid.  Everyone said her belly was nice and soft and we should think about taking Miralax daily due to one of the chemo side effects.  I was cool with that.  I was running on E.  My patience was wearing thin.  
I realized that we chose this as the facility of treatment and praised the team, but this one came out of left field. I feel like a hypocrite for saying this but she had no idea what she was doing.  Why traumatize my child with a suppository on top of what she has gone through?  Her belly was fine.  I think I know my child enough to know things in that department were okay.   I guess what it comes down to is I am willing to listen to the advice of a medical professional but know that I don't have to take it.  My motherly instincts just won't allow me to be a follower when it comes to my own child.  Everyone respected that, why couldn't she? Why the sudden change?  After she went through her speech of drinking colace or getting a suppository, I reminder her that she will not eat or drink.  She basically left me with no other choice.  I kindly reminder her that we had a 3 hr drive with a good chance of getting sick along the way and she might be adding an additional problem.  That would be a good way to dehydrate my child. 
After a few hours, we saw absolutely nothing.  We left the hospital at 7pm.  We got home at about 11.  She got sick once along the way but it wasn't too bad.  I started the wash as soon as we got in.  I went to bed after I threw it in the dryer.  I got my clothes ready for work and was in bed by 12:30.  
It was a half day today and was manageable. I went to the bank and had to get Jasmine's prescription filled. When I got home, we got a visit from a friend with a care package.  It was really nice.  I still have yet to thank all those who have sent care packages with a thank you note.  I have many to thank.  For now, I will have to recoup.