Two days in one post… This one is long! I am not a raving lunatic… I swear.
I think St. Jude was making sure I got a full 2 weeks of hospital time in my first 2 days back with Summer as a “caregiver”.
Monday was scheduled to be a lackluster day with one appointment for Physical Therapy. One and done! We canceled that appointment because Summer has been very weak and unsteady. No reason to rush to the hospital and try to do exercises.
Even better, Summer was supposed to have labs in our housing at 11 am. This is great because it means we can stay in the room till the last minute and then walk down the hall to our nurse’s station in the apartment complex. We have the closest apartment to it! Eazy peezy! We knocked. No answer. We used the app to check-in. No response or callback. We went to the front desk. Nobody could explain why they were not in the clinical room.
That kind of changes things. Summer had to get dressed in outside clothes.
We got to St. Jude and the registrar said she could not check us in because we were checked in at Target House. “Well, that may be because we used the ap, but NOBODY showed up to Target House. That’s why we are here!” is my abridged slightly frustrated answer. The registration assistant had to call back to Target House to confirm my story for lack of a nicer way to put it. Even when THEY called… Nobody knew where the nurses were.
We got labs drawn and then waited for the results. After 30 minutes we had the news. Low platelets and low hemoglobin.
The rest of the day and into the night was several transfusions and lab tests . We were thinking this might run until 9 PM or so.
In the meantime, I ran down to valet parking to get the car situated so we could have a clean exit when everything was done. This was around 6:30. They directed me to the last valet attendant and I told him our situation. “I am not ready to leave, but can I get my keys because I know you guys are gone soon”. 7 PM is when they leave BTW. He said no problem and handed me the keys. “Are you guys going to lock the lot or block it off? I don’t want to get stuck in there”. “Nope, you’re fine”. I should have really questioned this, but I thought I made myself clear.
As it turned out… We did not get done with the transfusions until 11 PM! This was a brutal way to end a day that was supposed to be easy! In reality, this pile of complications and poor blood readings is what I was expecting last week during the holiday. I was sure that Thanksgiving was going to be ruined by Summer being stuck in appointments like this. I am honestly happy it happened a week later when it was just her and I.
I pushed Summer in a wheelchair to the exit… And then had her wait inside while I went to get the car. The weather was colder and wet. I thought it was the gentlemanly thing to do.
Sure enough and not one bit surprising… There was a big Nissan Cargo van blocking the valet entrance/exit. This is why I asked those questions when I got my keys earlier. To avoid this situation. I got in the car and circled the lot and plotted a way to hop the Prius over the curb and dodge the van. Honestly, if it had been my Prius… I would have driven over whatever was in my way. The slow burn of the day’s turn of events was finally getting to me and it was late. We have a 7:30 appointment on Tuesday, and that is all I can think of as I walk back into St. Jude to find someone to help.
There was somebody to help back at the security desk. But, she was by herself and could not leave the desk. Oh, and it was 11 PM shift change.
I really have a problem with being angry with anyone here. They are all generally helpful. But this is not my first run around with after-hours security or valet. I don’t know if it runs itself or if there is actually somebody making rules. But it doesn’t run well. I am getting everything for free, so again, I hate to complain. What kind of a jerk gets pissed at St. Jude staff who are helping his kid get world-class treatment??? This guy. This guy who has a sick and tired kid sitting in a wheelchair who just wants to get home. It’s almost primal to hold your kids well being above any rational thought process about being polite. 
The replacement staff asked if I needed her to bring up my car. In my head: “REALLY? Do I look helpless? Hulk Smash! Hulk Smash! “. “No, I just need the van moved so we can leave” was my semi-polite answer.
We got out. I think I was in bed by 11:45 PM.
I proceeded to thrash around in my bed and wake up every 2 hours until it was 6:15. It’s like when you know you have to be up early for a flight. You can’t sleep the night before. That’s what I had. Except, we were not going anywhere fun or cool.
This morning we got to St. Jude at 7:30. Katie and the Brain Clinic team were there to take labs and go over the numbers. They were low. Again. Summer would need transfusions. No brainer, we kind of figured that since she is weak and tired still. Again, I am totally happy that this is happening now and not last week.
The next appointment is an injection of a drug she gets once a month. We set down, late, but still with enough time to get to our outside appointment at 1:30 in a little bit.
Summer got sick during that medication. Our nurse was super great, but she wanted to keep Summer under observation for another 30 minutes to make sure we didn’t have any other problems.
We DID succeed in getting away and went back to Target House for directions to the Plastic Surgeon that I did not see on the refrigerator. Summer attempted a 20-minute nap and I think she generally accomplished what she wanted. REST!
We drove 25 minutes through some decent rain to a clinic that specializes in facial reconstruction or “reanimation”. Dr. Raj looked at Summer’s movements in her eyebrows, jaw, and tongue to start making a plan of attack to get some movement back to the right side of her face. He even noticed some flickering below the right eyelid when he commanded her to close her eyes hard. He thinks this might be a sign of nerves still active in her face and that’s a good thing. It means she will have a better hold on her face for a long time. Don’t quiz me on this. All I can say is it was a positive conversation. We are scheduling a follow-up that will test nerve connections in her face with needles. Needles don’t bother her at this point. Neither did talk about grafting nerves out of her leg. We had a laugh when Summer told the doctor that his scars would probably be nothing compared to her neck and leg from brain surgery. I think he was scared to ask about the leg.
The surgery for her smile can only be done after Chemotherapy. So the soonest this will get done will be next Summer. He did say the window for atrophied muscles is 24 to 30 months. We have time, but the sooner the better.We stopped at COSTCO and I filled up with 2.69 gas. I have to rub that in as I know that’s at least a buck cheaper than Illinois.
I stopped at Target House, and I let Summer lay down for about 30 minutes. I called work and then attempted to nap. It must have worked a little. I drooled on a pillow for 10 minutes before waking myself up. Summer did not want to get ouf of bed. I really felt like this was going to be a “Lets make a deal” type transaction. But, being the trooper she is, she got moving.
We arrived at St. Jude. Checked in for the 4:45 transfusions… And sat. And sat. We talked to another family in the waiting room. They had been there since 4PM… And we’re still waiting. Eventually, they got frustrated and told the St. Jude staff they were leaving for the night??? I just know they left.
I went into the registration area around 6 to see what was up? I am not saying they forgot us… But they definitely had some lost looks when Summers name was brought up. “You are the next room that opens” was what I was told.
To ease the time lost, I ran to the cafe and took a picture of the food being served to see if it would be appetizing for my super picky kid. 2 Beef Tacos, as plain as Aiden would eat them. In fairness, I think Aiden eats them a little fancier now, but I got the message. We ate in the waiting room. I slammed down my burrito, I must have been starving! Summer nibbled at one and eventually ate it.
30 minutes later, she was in the bathroom losing her taco.
Today, along with the extra long day yesterday compiled to make her a bit cranky. We sat for about 30 more minutes in the waiting room before Summer said “Go, Karen on them or I will”. I went into the “medicine room” and tried to be firm. And I could tell everyone was trying their best. There was a girl, probably about 8 or 9 that was screaming and wailing at her Dad “Don’t let them do it Daddy!” She did this over and over. It was painful to my soul. I couldn’t see the Dad, but I could see the nurses all trying their hardest to calm this little girl down. It made me feel like I was being a bother by complaining about anything!
The attendant gave us a room number and we settled in.
It’s now 10. We are down one bag of platelets and are into the first bag of blood. I am guessing after the second bag (Hemoglobin/blood take about 45 minutes each) they will make us wait another 30 minutes for labs. We will be here later tonight than last…
But at least I know the car is not in the valet.
Little wins.
Eric: Thanks for the messages. WOW, they say patience is a virtue, I think patience is just a looong wait. Two huge long days of hurry up and wait. It sounds like you both need more rest time. Summer is a trouper to have this many transfusions. So sorry, she is sick. I hope you both can catch up on sleep. Thanks again. Summer, you are in my prayers.
Summer, glad for the positive conversation with your plastic surgeon; Something to look forward to when all of these transfuions are done. Praying and l Love you, always.
This was a hard read. I don’t know how you can not get upset when you see what your child is going through. All the waiting seems brutal. We continue to pray for you all.