Whew.
I've spent several weeks thinking about writing this to follow up with our adventuresome August. It's been almost 2 months since Ella's surgery and I've finally sat down with the computer. People continue to ask about her recovery and I'm sorry I have not done this sooner. We thank you for your concern for our beautiful daughter. Your love and prayers carried us through what has thus far been the most stressful and scary time in our lives.
Things/happenings are not as fresh in my memory as they were 8 weeks ago, but the basics are here. I won't make you read all of this, before sharing that the tumor removed from her little body was benign.
The surgery day started easy. Early morning drive to the hospital. We left around 4:45. We took her to pre-op where she changed into her hospital clothes. Green top and pants covered in creepy clowns. We sat and waited nervously for our next instructions as the room filled will little people whom I assumed were going in for tubes in their ears. As the room got full one of our pastors from church, also my friend and who's daughter is a dear friend of Ella's. came to pray with us. She also brought for Ella a purple prayer shawl that had been prayed over by our entire congregation at church meant to be given to people in times of need. I was there the Sunday we prayed over the shawls. Little did I know our family would need it.
Next we were walked into the room where all the beds were with all the people preparing for surgery. Ella climbed into her bed and got to drink the happy liquid supposed to relax her. It helped a little. This is where the anesthesia guys came in and talked to us. As we talked to them and took our eyes off Ella she was getting a little goofy from the meds which gave us all a little chuckle and relaxed us for a minute. The surgeons came by and soon our girl was taken from us alone with strangers who promised to take wonderful care of her while they cut into her little body. It was horrible. Horrible seeing her wheeled away, knowing how terribly scared she had to be. My heart hurts still thinking about that moment.
Jon and I walked down to the waiting room and met up with Aunt Judy, my mother-in-law Mary Ann, and Rudy. Soon to be joined by my dear friend Kim. Every hour to hour and a half we expected to hear from the nurse in the OR with an update on how Ella was doing. About 3+ hours after surgery began or they took her, as we were expecting to hear from the nurse, into the waiting room walks two oncologists. My heart sank. I almost fell out of my chair. The first words out of his mouth were "hey guys, I know there is never a good time...." and all the air in the room was gone. He proceeded to tell us that Ella was doing great and that they were just getting down to the tumor when they popped their heads in. I was totally confused. They had no news about the tumor. That was a horrible scare. They walked out of the room and Jon started to cry. We all lost it.
The hours passed slowly yet the time also flew by and suddenly we saw her anesthesia people wheeling her in her bed down the hall at a regular walking pace. Them not running told me she was alive and stable. I jumped out of my seat and ran to the hall walking at a distance behind them as they proceeded to push her to the PICU. One of the guys noticed and turned around to reassure me she was doing fantastic and that they would come get me shortly. Had he not turned around when he did I felt like I was going to break out running after her. I was feeling super crazy and panicked. Surly they knew this.
We sat back down in the waiting room and Dr. Fox came in. She politely asked the other folks in the room to leave. I'm pretty sure I stopped breathing. She shared that the good news was the initial biopsy said the tumor was not malignant. She continued to explain the surgery. They were able to save most of the kidney by taking just the upper pole, but did have to take the adrenal gland because the tumor had been attached to it as well. When she finished, we all cried including Dr. Fox who said she felt for us having a 7 year old of her own and she gave us all hugs. The surgery went really really really well.
Next we went into the PICU where Ella stayed for 5 days. At first glance she looked amazing for just having had a 4 inch cut made into her gut and dug in for the previous 6 hours or so. She had an epidural for pain control for the entire 5 days. He had two IVs, an arterial line, and a folly catheter. She administered the pain meds herself as needed with a button.
She was not allowed to eat at all until her bowels woke up after all the narcotics. This was horrible. She couldn't even drink water. One day as we watched TV and a Red Robin commercial came on she cried at the fries. She was so hungry. That day they started to let her have a little broth and crackers. It didn't go well. She slept off and on quite a bit for those 5 days and had no idea how many days she had been there or if it were night or day.
The days in the PICU were really hard. It's a serious place in there. Scary might be a better word. It's full of children, babies if you will, who are really in critical shape. As Ella recovered and we watched her kidney function go back to normal and we rose to see the happenings around us, we felt almost guilty that we would leave that scary place and recover and leave behind these other kids who had a much longer road ahead of them, or perhaps a short road.
While there we had a few visitors. The Sunday that we were in there, 1 week after Freddie was born, he was celebrated at church with a rose on the alter. So on Monday Hunter Johnson and her mom came to visit baring another prayer shawl, Freddie's rose for Ella to enjoy and some craft stuff. Our old neighbor Elaine came by, and at some point, all of Jon's troops came by. The PICU staff allowed them all in Ella's room and they posed on either side of the bed for a picture. This made Jon cry that they came. I arrived that day as they were about to leave and a couple of the guys had tears in their eyes imagining how it could be their daughter there.
When finally taken upstairs to a regular room Ella was allowed to start eating. At first it was a liquid diet, or as I like to call it, a high fructose corn syrup diet consisting of neon jello, apple juice, foul smelling, luke warm chicken broth, and a very red popsicle. Considering high fructose corn syrup is hard on the kidneys and may cause kidney disease...... seriously? (if you can't tell, this very much bothered me). Of course she vomited every time she ate that crap. Later when she got solid food, the apple on her tray (twice this happened ) had not been washed!
**For the record, the food quality is my ONLY complaint about NMCP and I feel bad about that, but it was pretty gross. Our care there was beyond fantastic.
For 3 days in the regular room we had to fight with Ella about moving and walking. She had to move and walk on her own so that her bowels would wake up. She needed toots in the PICU and now we had to get her to walk and poo in order to go home. Getting her to walk was not fun. It was really hard for her, she was in a ton of pain when she moved, but we had to make her. Here she was perfectly fine before the surgery, and totally dependent on us and in major pain not fully understanding the gravity of what could have been in her body. We sent her in there, now we were making her have more pain. Her emotions were all over the place as were mine. We cried together once when Jon was away. Jon spent every night with her and I came with the baby during the day. Jon was on top of everything. He was a kind papa bear all over every doctor and nurse. He is such an amazing dad.
One day Dr. Vandenboom came to visit. He is her pediatrician who started the whole work-up. He brought Ella a very nice teddy bear wearing a sailor suit. He talked to me for a bit and I thanked him for listening to me on my first concern to him about Ella's BP. He in turn thanked me and said he learned a lesson from Ella's case. (He is a resident Dr. there) He shared that as much as they are told to always listen to the parents that pediatricians are probably the worst at listening because parents are always over reacting at things. He said he will always take parents concerns seriously because of us. I hope he does. He also continued to tell me that the final pathology was not yet back and that NMCP had never seen a case like Ella's that it was that rare. Boom.
People were talking about the final pathology. I even passed an oncologist in the hallway who told me they were waiting to hear still what the tumor was. I was all "uumm..... no, the inital path. was benign so we are waiting to hear what the final says it was." She was all "ummm...... that's the first I have heard of that." She was one of the two oncologist that came in the waiting room the day of her surgery. I hated that she knew us. I did not want anything to do with those doctors. I didn't sleep at all until the final pathology report came back the last day she was in the hospital. I was a wreck thinking I had been given false hope and rejoicing over the wrong information. It was terrible.
It turned out that the tumor; a ganglioneruroma; originated on her adrenal gland. It was a good thing that the surgery went the way it did with leaving most of the kidney and taking the adrenal gland. Typically this type of tumor originates on a peripheral nerve and is pretty rare. Even rarer is to originate on the adrenal gland and even more so on a child. Not a whole lot of studies of cases out there about this. This fact makes me crazy. Really.
On the 8th day post surgery we came home. We had a car full of stuffies, flowers, and things to do in a hospital bed. We came home and Ella stayed on motrin for an entire day. She refused all pain meds after that. She had lost at least 5 lbs which is a lot on a 50lb skinny kid. She walked a little hunched over for a week or so, protecting herself from stretching her incision too much.
2 weeks out or 3 weeks out (I can't remember) we went back to see Dr. Fox for follow up. This time in the pediatric unit:-) They ultrasounded both kidneys each of which seem to be exactly the way they hoped and working well. She explained that the final path said the tumor had positive margins and that she felt it was a false positive because after they removed the tumor they went back in and took more of the kidney. She said it is possible there are still some cells in there and it could grow back but she felt confident they got it all and that it likely would not be back. Again there is not much research or cases out there like this so ....... this is something I can stress about.
They will monitor her. She will have a big ultrasound in Nov. and then once a year from here on out. IF the tumor grows back we will know in a couple of years. sigh.....a couple of years......
Oh, I left out that this type of tumor makes its own hormone that will raise BP. Yeah, her BP is back in a normal 7 yr old range! It's thought that the tumor had been growing in her for at least 5 years.
Other happenings...... She has started 2nd grade at a new school and riding the bus. She is playing soccer, joined girl scouts, making new friends and continuing to amaze us with her braveness.
I would be a terrible parent if I didn't give the middle brother props. The kid is and was amazing in the hospital each day that we drug him there. Mary Ann kept him most of the time, but she was need there during the PICU stay as well. Rudy is a great kid.
Freddie was SUCH a great distraction during all of it. I can't imagine how we would have made it through this without him or with me still prego.
Now we are moving ahead.
Our friends, family, neighbors and our First Pres. church family are the reason we survived all of our stress in a somewhat graceful fashion. God answered the prayers you said for us and he gave us sleep, sanity, meals, and new friendships. Thank you.
Next up in major life events in our family is Jon's 6 month deployment to an undisclosed location in a dangerous part of the world. What a brave and amazing husband and father we have. We are blessed.
