That’s how I feel today, like I am standing in line for a roller coaster. Only I don’t want to be on it, I don’t like roller coasters. But atlas, I am already riding the roller coaster of life and there is not getting off, not yet anyway.
What is the source of this? Ian had his 6 month check up with the Nephrologist (Kidney Specialist) at Children’s hospital in Bellevue today. We had to be at the hospital before 9:30 this morning so not knowing what the traffic was going to be like and not wanting my parents to miss their Thursday at the temple we had a friend walk the boys to school. Tom had a meeting in Tacoma for work that he was going to try to make, so we drove separate cars. Amazingly, he arrived just as we were finishing checking in, we had the carpool lanes, he did not.
Once checked in we headed down to the lab for a blood draw. She took us in right away. Ian was very nervous. I sat in the chair holding him on my lap trying to distract him. He was pretty upset. Screaming and crying, almost in hysterics. He has had this done several times. Believe it or not, he is actually doing better. Maybe by the time he is 20 he will be able to sit still and just wince when they draw the blood. That of course is assuming that he has blood draws twice a year until then. Okay, maybe that is a little sarcastic. I’m trying to belittle him. He really gets upset and is really scared. I have seen him take much worse things better than he take blood draws. I feel so terrible for him and totally helpless. He calmed down really fast once it was over. During the blood draw the tech left the door to the room open and the window between the lab and the waiting area. When we came out Tom and Eric were waiting for us. Tom said they had been upstairs but heard Ian crying so they cam down. He was afraid that something was wrong. I guess he has never been in the room with Ian during a blood draw before. When I told him Ian did better than last time he was surprised. I think the tech should have at least shut the door. It is a good thing there were no other children waiting for their turn!
After this event we headed upstairs to wait for our appointment. But we had one more thing to do before they called us back. A urine sample. On a normal visit to the doctor Ian has no trouble with these. He can pee in a cup with the best of them. But today…. after the blood draw…. he was terrified it was going to hurt. In the waiting area there was a Wii and I told him he could play a little. Unfortunately there was another kid on it. We waited a few minutes then I suggested we get the sample over with and maybe the Wii would be free. Once I convinced him is wouldn’t hurt he had no problems.
I returned the sample to the lab and came back just as they called his name. We went back to the room. On the way they checked his weight and height (One indicator that your kidneys are not working properly is that you don’t grow. Checking his height is not just a formality) Then of course they took his blood pressure. He actually likes his blood pressure being taken. They call it an arm hug. When we got to the room Ian saw the BP machine and he said “Yes, an arm hug, I love those!” The MAs always get a kick out of him saying that. After taking his blood pressure she left. A few minutes later the nurse came in. She took his BP manually. After she did that Ian leaned over and whispered in my ear “what else do I have to make it thru?” I giggled but inside my heart broke a little for him. He is so sweet and so brave! I’m not sure his brothers would be able to take all that he goes thru as well as him.
Doctor Hernandez came in soon after that and briefly went over the history of Ian’s case: We know he has decreased kidney function, possibly from damage done during his infection. In September 2013 his creatinine level was 0.5.
Then he gave us the results of today’s tests. Ian’s creatinine level is now 0.6 (Probably could hear a strange sound escape my mouth at this point. Not sure if it was disappointment or relief. We wanted his levels to remain constant, definitely not go up. However, an increase of 0.1 doesn’t seem that bad right? Unfortunately it is.) That change of 0.1 puts him at about 70% kidney function. I began to panic at this point. (We have been told for the last year and a half that he was at 85% function. We were told not to worry until he was at 65% It was bad enough to be 20 percentage points away from the level we should be worried at but 5 percentage points!?!? Not only that but 0.1 made the difference of 15%!) The doctor follows his revelation of the 70% function with “We’ll worry when he gets to 50% function.” Really? What changed in the last 6 months? We were supposed to worry and 65%, now that he has gotten close to that you’re just dropping it to 50%?
Tom and I were in too much shock to even have enough brain function to ask why it is okay for him to have less than 65% function now and it wasn’t 6 months ago. Hopefully, in September, when we take him in again, if the level had stayed at 0.5 we wouldn’t have to go back for a year, we will ask that question.
Going into this appointment we were really hopeful that his function would have gone up since the September ultrasound showed that both kidneys had grown. Thankfully this decrease in function does not change the treatment/life plan. However, I did feel like he put more emphasis on the plan. Ian is to avoid all NSAID drugs, this includes ibuprofen. A nephrologist (preferably from Children’s) should be consulted before any NSAID drugs are given. We are also to make sure that he stays hydrated. This is really important because his ‘good’ kidney may still be vulnerable to infection and damage, due to the pop off that occurred after surgery, if he gets an UTI. We will check his numbers again in September and have an ultrasound again.
I think we just sat for a minute after the doctor left. Still trying to process the news. The doctor was encouraging but the news was not what we were hopping or expecting.
After we exited to the waiting room Tom left for his meeting in Tacoma. The Wii was free so the rest of us sat down so that Ian could play for a while. Meanwhile, Eric caught the attention of a volunteer. Eric would hide then she would move and peek at him. After a while he climbed on my lab, covered his eyes with his hands and said “who turned out the lights?” It was really cute.
I noticed an outdoor play area at the hospital so I took the boys out there to play for a while. Then we headed to Bellevue Square. I had scheduled Ian’s 5 year well check up with his pediatrician for later that afternoon and didn’t want to go home and then try to get them to leave the house again. We grabbed lunch at Safeway then headed to the play place to play.
The main reason I scheduled this appointment for the same day was so that I could discuss the results of the Nephrology appointment with Dr. Robertson before I forgot the details. As we were discussing the appointment I was reminded of why I think I have one of the BEST pediatricians around. I mentioned to her that we had been told to worry about function when he was at 65 and now they are saying 50% but….. and she said “but you are his mom and that is your job.” Ian then says “you worry about me? Why?” I said “I’m your mom and I love you.” As I said this she said “we love you.” It is really great to have a doctor who obviously cares about my kids. I have seen her worry and even have tears in her eyes as she talks about them with me. She is the BEST!
As for the difference (65% vs 50%) she said she thought that the creatinine level was a bit of a sliding scale and that if may just be that he is 5 now and last time he was 4 so he lands on a different part of the chart. She said we’ll just trust Dr. Hernandez. I know this is true but I will probably be thinking about it a lot more over the next 6 months then the previous 6 months.
And so we continue on this roller coaster ride with Ian. I’m grateful for the high points in the ride and even more grateful for the love and support we have from family, friends, doctors and our Heavenly Father during the low points of the ride.
Thank you to all who continue to think and/or pray for Ian while he is on this ride. I hope and pray that things will stay relatively level where his kidneys are concerned.
Briten 