Day 3 at St Jude

I forgot to post yesterday. I was wiped by the time we finished everything.

December 17, 2013

Today back in Williamsburg, Jesse should have been having her tonsils out and allergy testing. Instead they put the Double Lumen Hickman Line back into her body around 9:30am CT (still trying to get used to central time versus eastern time… who knew an hour could throw you off so much..)

We started at 7am with a visit to ECHO/EKG. The lady was nice, but spoke so low I couldn’t hear her. Then a really nice nurse from C-clinic took us to where they have surgeries on the 3rd floor. Really great guy. Very compassionate.

We waited for awhile. Jesse has been having more and more pain. Some of it I wonder is from some depression over the situation. She is an introvert. She loves to be at home, and for potentially 6 to 8 months, we won’t be.

At 9, the OR nurse came to get us. Not overly friendly… basically said you can come on back and left us to find back. We meet the surgeon and anesthesiologist. After them where 2 OR nurses. They were very warm, friendly, and inviting. They allowed me to put on a zoot suit and go with Jesse until she fell asleep. I really appreciated this. I am not sure how Jesse felt about it.

Here is an image from http://pedsurg.ucsf.edu/:

We have had dealings with the same line before. You can’t get this wet. When/ If she showers, we have to use what is called an Aquaguard to protect the tape over the entry site. We have tried this in the past, and it hasn’t worked well.

Swimming is out. That will be hard because Jesse loves to swim.

At 10am I met the line nurse for the first time. She handed me a packet about how St Jude does tape and clave (we call them cap) changes. They do them every Monday, Wednesday, Friday on the tape. It is gauze tape… no sterile gloves. They do use cloroprep. Cap changes are every Friday… no masks are involved. No sterile gloves. Needless to say I had a moment. I told her that I wanted it done sterile. This is my go round with a CVL. She told me that I might be a candidate for sterile changes because I had done them before… and that they were very mechanical.

I don’t think we got off on the right foot. I don’t seem to get off on the right foot with line nurses… I want to be too clean.

On top of that they were only going to give her two doses of antibiotic… no running antibiotic like last time. Red flag in my mind, but I started to figure that with the latest news about superbugs… they had a reason to not give that.

We were allowed to go back into Recovery and wait for Jesse to wake up. Afterwards, we were able to take her for some lunch.

After lunch I was scheduled to go to the chaplain’s office to meet with him. I do believe… but this just rubbed me the wrong way. Here I am running all over St Jude’s and you want me to find the chaplain for a meeting? At CHKD, they found me. They took into account that I was busy and I really appreciate them finding me.

But I hated to waste his time… so I went to office, told him thank you, but that I would find him when I was ready. Turns out the guy wasn’t even in, it was someone else.

The nuke med nurse called me around 1:30pm CT. She could give Jesse her MIBG injection 2 hours earlier than scheduled. We jumped at the chance. This did allow Jesse to come back to the Grizzlies House by 2pm to have a nap and down time.

Mom and I saw on our return that Santa was coming to the House for dinner. I asked Jesse if she wanted to go. She did perk up, but then got really sad. I asked her why. She told me that she’d been bad, and Santa wasn’t coming to see her. I assured her that was not true, and that he was. She is very scared that he won’t find her here. But I have planned ahead to make sure that “he” does find her here. And to let her know he hasn’t forgot her. She wants a “Doc McStuffins Doctor’s Kit” badly. I have it hidden in my things. Thanks Amazon and early ordering 🙂

She also wants a toy guitar, and I have coordinated with Child Life to “hide” that in the hospital to arrive on Christmas day. I really like the lady they have assigned us to. She seems very down to earth and just like our Child Life people back home. (All the Child Life we have meet here have been wonderful and willing to help – same at CHKD)

At 5pm, we went downstairs to see Santa and get a present. The House was also serving dinner. Jesse ate a few bites of ice cream, and that was it. We did meet a few parents, but Jesse was feeling horrible. We took her picture with Santa (I am not sure if we should have… she looks like she did in the picture we have on our mantel where we knew she didn’t feel good, but couldn’t figure it out in 2010). Mrs Claus gave Jesse a toy.

December 18, 2013

Jesse woke up twice screaming of pain. I took her to the bathroom. That seem to alleviate the pain. Not sure if moving her helped or emptying her bladder. Plus at one time I could give her more morphine.

Between those times, I tossed and turned. I was planning for a fight with the line nurse. Her language of “candidate and very mechanical” torqued me off a tad.

At 8am, we met with her. I flat out told her I wanted sterile. That I wasn’t a spring chicken. She listened to me, and then we talked about my concerns. Turns out that St. Jude has never done the sterile tape changes like I am used to… they don’t even have the same kits. Once she showed me the kits they do have and explained their research has found no significant improvement in sterile over not sterile (but still very clean).

I did tell her I wanted masks on when anyone removed the cap. When that cap is off, it is a direct line to the heart. She told me she’d get me the supplies I need. We decided to try the gauze clean version first. IF the cloroprep is too much for Jesse 3 days a week, then we’ll go to the sterile method with the clear window. I am concerned with the cloroprep, because for Jesse at 2 to 3 years old, she would scream every time.

After we left her, we had time before having to go to triage for a blood draw. Jesse became very anxious over this because she thought they would poke her. Her blood pressure read 131/83. After we showed her that we’d be getting blood from her tubies (CVL)… she did calm down into the 120s…

I think that a lot of the blood pressure in this instance was due to pain. I had given her morphine at 9am.

Our next stop was D-clinic to see the nurse practitioner. As we waited a research nurse found us. She asked if they could use Jesse’s left over blood products in research and for the Pediatric Cancer Genome Project (Click Here to Learn more). To me this is a no brainer. If we can figure out how to turn off these crazy cells and save lives… let’s go.

The nurse practitioner ordered more morphine for Jesse. This did knock her out. She also marked her for a bone marrow biopsy and put LMX (a numbing cream) on those areas.

While Jesse slept. I talked with the social worker. I did voice my frustration over the chaplain meeting. She asked about my marriage. She asked if we had weapons in the home, if we were on antidepressants. Things she has to ask for her job. She also will help me get Jesse squared away for school and maybe see a psychiatrist to help with the depression. I don’t want her on depression medicine. I want her to learn ways to cope with her homesickness and find the positives here.

Jesse did tell me this morning that she hates the hospital. I can understand that… she needs someone/ something to hate. I tried to explain that they want to help her get better. I think she hates the cancer too, but how do help a 5 year old cope with a disease that she now understands a little better.

At 12:30pm, we went for the MIBG scan. They let her watch “Despicable Me” while she was being scanned. I am really proud of her for holding still for over an hour, even while telling me that everything itched. I would scratch her head, nose, and chin when she wasn’t being scanned by that part of the machine.

Jesse not having sedation at the MIBG threw the nurse practitioner off. On the schedule they only put combo procedure… didn’t say what it was. I had asked Monday when I meet with anesthesia for her to not have to be sedated for it. She did it for 2 hours in Norfolk in November…

Luckily I had kept her NPO. I think that isn’t helping either. She ate a bite of ice cream Tuesday night at 5pm. From then on nothing. By this time it was 3pm.

At 3:00pm, they took us to the procedure room (more like rooms) to do the bone marrow. Jesse didn’t want to go to sleep. They were able to get the samples, but she did have to go to sleep. Getting bone marrow is like auggaring a tree.

By 4:45pm she was awake enough for us to go get food, come back to the House, eat two bites, and declare she was full.

Around 7, we called home to talk with Mike and Christine. I am not sure if this helped Jesse or hurt her. I want her to stay in contact with everyone back there, but am I reopening a fresh wound every time? This is something I will need to talk to Child Life or the Social Worker about.

Tomorrow we don’t have to be over there till 12:20pm… but she still has to be NPO because of having a CT Scan. Once we prove to them we can do it without sedation, I think that misery will stop.

By 5pm CT, we will potentially be inpatient though I still haven’t been told if she’ll be accepted to the study. We’ll find that out tomorrow too. I am crossing my fingers, but not holding my breath until they say we are definitely in. I really hope we get in. Jesse, however, doesn’t want to go back… and just wants to go home. I wish I could get her to understand we have to take this shot. We have to try to buy more time.