Step by step guide to scheduling surgery

There is nothing more sobering than seeing a child, your child, afraid and in pain.  Yesterday, I got that experience, again.  C had her DMSA renal scan (that may be redundant, perhaps its just a DMSA scan) in Philadelphia.  

We left bright and dark around 4:30 for her 7 am check-in.  Okay jerk-offs!  There wasn't even a receptionist when we arrived.  Instead, we wandered around the hospital until I found a custodian to ask for assistance.  I get it, you need to check in for the 7:30 appointment, but come on!  Ugh!  I was am tired.  Forgive me for this satirical post.  Anyway, when she finally got back there, the nurse (a fabulous man with the most lovely, sweet and soft voice) noticed that Cameron had a gunky cough.  He warned against potential complications should she be sedated (important to know), but had her checked, and subsequently cleared by the ICU doctor.

At this point, they took her BP and it was like 128 over 82, or some ghastly number like that.  He took it again, just to double check.  This time, it came in at 111 over 59.  That'd be great if she were an adult, but is too high at age 3.  Grrr!  How much of this is her being anxious? Not sure.

Step 1: They put some numbing lotion on her hands to prep them for the IV.  This was the easy part. She screamed hysterically.  No problem too big for Lemonade Mouth, or so I thought.

Step 2: They came back in the room and took a now calm C to the study room.  This is the room full of equipment, like MRI and CT scan machines.  When that door opened, she flipped out again.  I don't know if its because she remembers the room, or if its simply that she knows that she's typically catheterized when she's around that type of equipment.  We all reassured her that she got to keep her clothes on, but it didn't help because she'd already seen it.  The needle, that is.  She started screaming about the shot.  Broke my heart.

She was so upset and really fighting them (boy, oh boy, she is one strong cookie), so they had to restrain her.  They did this by velcro'ing her to the bed, with her arm strapped to her side.  They have these sand rolls (baby blankets with sand inside) that they placed on both sides of her to keep her in place.  Those, along with the huge velcro strap kept her secure...for the most part.  Then, they were able to insert and secure an IV to her left hand, to which they injected the radioactive isotopes for the study.

Step 3: After hanging out, watching the fish and buying a little frog toy at the gift shop, we were able to return to begin the procedure.  C was not happy about this.  She clung tightly to me, just like a baby monkey clings to its momma, she held on for dear life.  While grasping my neck tightly, she sat on the edge of the table and they injected the propofol into the IV.  It was pretty immediate.  One second, she was hysterical and screaming, "No wanna shot. Wanna go home.  No mommy," and the very next, she was going limp in my arms.

I'd say the tears were pretty immediate. To have your child go limp in your arms, well, let's just say that's a feeling no one should ever have to experience...no matter what the reason may be. What an amazing thing the practice of medicine is.  They proceeded to strap her to the table, insert the nose tubing and began the procedure.  

Complications:  Remember that sweet, sweet murse?  Well, he mentioned that the cough could cause complications, and he was right.  Several minutes into the scan, C's body started shaking and there was a very faint sound of coughing.  Let's just say that momma bear was ready to attack the doctors and nurses.   The coughing got worse and then it went away.  This repeated several times.  Then, the oxygen saturation of her blood dropped over 10 points, the lowest being 85.  The doctor was notably alarmed.  They suctioned her mouth and put oxygen on her.  The doctor, noticing that I was distraught, assured me that this was no big deal.  "The medical term for this is boogers.  When she wakes up, she'll be fine.  She just needs a good cough to clear it out."  Okay.  Thanks for that touch of humor there, doc!

Her pulse ox recovered nicely each time until there was 2 minutes 34 seconds left in the scan.  They just couldn't get it over 90, so they were about to call the scan and reschedule for a later date.  I was so torn.  I didn't want her to have to go through this again (the drive, the trauma of needles, sedation, etc...), but I didn't want something horrible to happen to my baby.  The stood right next to her, with the suction tube and were able to keep her at or above 90 for the remainder of the scan.

Step 4: My sleeping beauty spent 20 minutes in the recovery room so that she could awaken from her slumber and regain her bearings.  That part was sweet.  Her, laying so peacefully, done (or so I thought) with being poked and prodded. 

Step 5: We went upstairs for C's appointment with her Urologist, and guess what?  He was out to lunch! No kidding!  Even though I had them call upstairs and tell them that we were there, but still in the study.  His nurse, Miss Paula Jackson, tried to help us, but I wanted to see him to discuss next steps.  So, we went to lunch instead.

Step 6: C noshed on fresh fruit and hummus while Q and I enjoyed some chicken marsala with brown rice and steamed veggies.  Aunt H, who came along to help with Q (so grateful), looked like she was going to collapse from exhaustion since she works the night shift and had been up for a long, long time.

Step 7:  We finally saw the Dr. and discussed the surgical options: 1. Incision 96% success rate, 2 1/2 days in hospital OR 2. No incision, inject foreign matter, 67% success rate, go home same day.  Besides when I thought our daughter might be choking to death on her phlegm, this was when I really wished P could have been there (he's away on business) because I didn't want to make the wrong decision.  Ultimately, I (or I should say we, since he agrees) decided to move forward with option 1 so as to decrease the need for further potential trauma.

Before the surgery can take place though, C has to have the issue of her high blood pressure resolved by a Nephrologist.  She has an appointment scheduled in 2 weeks.  Her Urologist said that they either need to put her on medication to regulate her blood pressure or he needs the Nephrologist to submit written sign off for the surgery.  Okay.  That sounds scary, right?!  I don't know if she's just terrified of the doctors and that's why she's registering high, or if she really has high blood pressure. Eeek!  

Step 8: To help figure out whether or not the high bp is caused by scarring of the kidneys, the doctor sent her to have blood drawn.  This will determine if a certain protein is in her blood which points to poor kidney performance.  Currently, her kidneys are operating at 43 and 57, instead of 50 / 50, so I guess it is possible that we will see this protein present in her blood, though I pray to God that it is not. Really, what more does my poor little girl need to endure?!  Come on, already! My big girl was crying the whole time they drew blood.  "Her hurt me!" She just kept repeating it.  And Nurse Carla was so sweet too, apologizing the whole time.  It was hard for me to not want to kick her for hurting my baby.

Step 9: GO the F home!  Sorry, but we were there from 6:30 to 2:20.  We were all climbing at the walls to get out of there.  Thank goodness that the medical staff is so wonderful and caring or else this day wouldn't have been as lovely as it was, wouldn't have gone as smoothly as it did.

Step 10: Get everyone to bed at 7, with mom and Q falling asleep at 7:30.  That's how I'm able to be awake right now...a power nap!

I really was selective about these pictures, not to mention that I'm too lazy to get up and get my phone.  I have so many of a crying baby girl, but I think this day should be about moving forward, not being upset.  C is scheduled for bilateral ureteral reimplantation for May 25.  It turns out its Memorial Day weekend, so I guess it will be an emotional one at that.  Let's just hope my sister doesn't give birth that weekend, too because I don't want to miss it!  

Oh, since my last post, C celebrated her 3rd birthday.  I'll have to post pics later!