Miracles and Mayhem
Today was a day of lessons learned.
An adventure with God.
A culmination of every effort of faith I have ever gathered.
We left our hotel in a rush early this morning, got stuck in massive traffic and not just morning traffic in Salt Lake but there was some crazy person driving the wrong way down the freeway so things were moving extra slow in an effort to keep everyone safe. It was pouring rain, as if we were in the middle of a car wash. It took a solid hour to get from our hotel to the hospital which normally would have been a 20 minute drive.
There was no sitting around once we arrived and they whisked Spencer off for his two hour PET scan. Shelbie, Sam and I went back to the car with our plan to show up in the ER at the University Hospital so that they would call a Nephrologist on call and Sam could get the help his kidneys need.
When we got to the car, I suggested we stop for a minute to pray. I prayed that I would know the steps I needed to take in order to get Sam the care that seemed important for him to receive. I prayed that if in fact Sam was in kidney failure like our local doctors thought, that things would fall into place and we would be led to the next best thing for Sam.
As we pulled into the parking garage, I had a feeling that I needed to go to the Kidney Clinic first and try to talk to the scheduling coordinator that I have been talking to every day since last Thursday. Surely a face to face meeting would be easier than all the messages and phone calls. I had taken all of Sam's test results from the past two weeks to show her how serious it was.
We did that and the secretaries were happy to get the scheduler for me. I reminded her about the situation and she literally had no clue who I was or what the story was. Nothing rang a bell to her. I have spoken to her every single day and some days more than once. She was not a friendly person. She was abrupt and sarcastic. I showed her the test results and she said, "This? This is what you are in a panic over and think he needs to be seen right away?"
I immediately felt shamed and crazy. Maybe the doctors back home were all wrong about the seriousness of this. "Well, all I know is what I've been told. I just thought maybe if you could show a PA here, or a Fellow, maybe a doctor if they have time and if they don't think it's a big deal, I'll stop bugging you."
"Everyone bugs me!" She said in return. "I haven't even received a referral or records and I've checked all the faxes this morning already. Our doctors are booked out months."
I felt sick in every way and all I wanted to do was cry...in a ball...in the corner. We left and took the elevator back to the hospital lobby. We were going to go back up to Huntsman Cancer Institute where Spencer was but instead, I said, "Guys. I need to sit down."
We found a row of seats and sat there. "We are not moving from here, until one of us has an inspiring thought of what to do next for Sam so start praying people."
We sat. And sat some more. I tried calling to our family doc again because they promised me they sent the records and referral two days ago yet it still wasn't where it should have been. I kept getting disconnected. A dozen times...the call wouldn't go through. Once it did and I left a discouraged, pleading message for the nurse to just give me a break and get the records sent like she had promised she would do. I wasn't mean and ugly, just so exhausted.
Shelbie said, "Why don't you take him to the urgent care instead of the ER. Maybe everything is better and he really won't need to see the Nephrologist."
That made so much sense to me and Sam agreed. The urgent care is part of the ER actually and I thought, at least, they could retest his urine and CBC and if it still looks bad, they can write me a referral that I could take down to the Kidney clinic and they would have a record that there is in fact a problem. We headed down there and they took us right back. Not one ounce of waiting around. I explained the situation and in less than 5 minutes, Sam was giving a urine sample and we were waiting on results. Just 2 minutes later, my phone rang and it was a hospital number so I answered it.
It was the scheduler from the Kidney Clinic and she was a completely different person. So friendly and I couldn't believe what came next. "I'm just calling to let you know we had a cancellation for a 1:00 appointment this afternoon and we would like to see your son in clinic if that works for you."
Unbelievable! She had sent orders for blood draws and a urine test which we had just done, with exception of the blood work. When the urgent care doc came in, she said they wouldn't have the results for a couple of hours so we could just leave and they would call with results. We hurried out of there and I sent Shelbie and Sam to the lab for blood draws and I ran back to Kidney Clinic to fill out the new patient packet, then raced back to the lab to grab the kids then ran up the hill to Huntsman and arrived just as Spencer walked out of the Radiology Department.
We had just an hour or so before Shelbie's PET scan and Sam's appointment 30 minutes after Shelbie's got started. We said goodbye to her and wished her luck, ran as fast as we could, back down to the University Hospital just in time for Sam's appointment with the Nephrologist.
I was expecting a long wait and ending up with the worst kidney doctor just because that's usually how things like this happen. NOPE. We had no waiting time and we got one of the top Nephrologists at the University! He is from Jordan, in the Middle East. He was at the hospital for a meeting and decided to stay in order to see Sam! He was absolutely the most amazing doctor! It took some time to get use to his heavy accent and he spoke sooooo fast!! Faster than I've ever heard anyone speak before. Of course, our local doc did send the records but they sent mine, not Sam's so nothing was making sense and I was so confused until he realized we weren't looking at Sam's chart.
He had never heard of Dyskeratosis Congenita before but he said, "Okay, please teach me something about this disease. I want to learn." It was an amazing hour of listening and learning and mutual respect. He pulled up research articles on how the disease can affect the kidneys and we read them together and he taught me so much! At one point, he even ran out to his car to get a portable ultrasound machine so he could look at Sam's kidneys himself.
He kept saying, "I know you are a smart mom and a good mom and I know you are scared. Don't be scared. I will take care of your family. I am your friend okay? Please don't be scared. We will fix this. I know the best surgeons, transplant doctors, whatever we need I will provide you the best care. You call me anytime you want. I want to get an email from you every day telling me how Sam is doing. Okay?"
I could go on and on about this miracle. It was truly an act of God to watch this unfold into the most amazing blessing.
So, Sam does have a problem with his kidneys though the details have yet to be determined. He said that doctors are quick to use the term 'kidney failure' when they see numbers such as 1.5 but he likes to reserve that phrase only for people already on dialysis. Incidentally, Sam's number is 2.7 so that is getting up there and serious. The ultrasound he did in the clinic showed some abnormalities in his ureters as well as fluid of some sort collecting around his kidneys. He ordered a formal ultrasound which we were able to do today. I am concerned that he is getting more venous malformations like he has around his heart and lungs. They spread and once they hit the kidney and liver, you are in trouble. It causes blood to shunt in those organs and creates all sorts of problems. He couldn't tell if the fluid was blood or something else.
Of greater concern than his kidneys themselves was his blood pressure. It is climbing scary high. He said there is a direct link between blood pressure and kidney health...I knew it! This is another piece of the puzzle that leans towards the venous malformation theory. I am suppose to take his blood pressure three times a day on both arms and email him the results. He asked how Sam's eyes were and I told him they were fine but then I remembered that he keeps losing his vision. We are so use to it now that I forget it's a problem. You could see light bulbs go off in his head. He said he often sees eye problems as a direct correlation to kidney disease. Again, it's a pressure and vascular issue.
Something has clearly attacked Sam's kidneys. They are swollen and struggling. We will need to wait a few days until all the labs are back and the ultrasound results before we determine the next step.
I feel so relieved with how things went today. Of course it's horrible news but the fact we have one of the top doctors is amazing. He even called Sam on his cell phone after the ultrasound to make sure he did okay through that and asked us to go back down to the clinic so he could check one more thing. I love this man!
Shelbie did okay for her PET scan although both kids are sick tonight with all the contrast and radioactive drinks they had to ingest. Sam is handling things okay as well. Sadly, he is suppose to leave for Disneyland on Saturday with all his cousins for Spring Break. He will not be able to go with them, neither will Shelbie or Spencer for that matter. It's sad to see them miss out on this but he's being a good sport which is another blessing.
It was such a crazy day and I am exhausted beyond exhaustion, mentally and physically and spiritually for that matter. I experienced Faith the way I think God has always intended for it to be. When we can do nothing more for ourselves, and when there are no earthly answers, all we can do is turn it over to the Lord and watch what he can do. Faith is work, such hard and constant work but so incredibly overwhelming when you see it unfold so effortlessly the way I saw it today.
An adventure with God.
A culmination of every effort of faith I have ever gathered.
We left our hotel in a rush early this morning, got stuck in massive traffic and not just morning traffic in Salt Lake but there was some crazy person driving the wrong way down the freeway so things were moving extra slow in an effort to keep everyone safe. It was pouring rain, as if we were in the middle of a car wash. It took a solid hour to get from our hotel to the hospital which normally would have been a 20 minute drive.
There was no sitting around once we arrived and they whisked Spencer off for his two hour PET scan. Shelbie, Sam and I went back to the car with our plan to show up in the ER at the University Hospital so that they would call a Nephrologist on call and Sam could get the help his kidneys need.
When we got to the car, I suggested we stop for a minute to pray. I prayed that I would know the steps I needed to take in order to get Sam the care that seemed important for him to receive. I prayed that if in fact Sam was in kidney failure like our local doctors thought, that things would fall into place and we would be led to the next best thing for Sam.
As we pulled into the parking garage, I had a feeling that I needed to go to the Kidney Clinic first and try to talk to the scheduling coordinator that I have been talking to every day since last Thursday. Surely a face to face meeting would be easier than all the messages and phone calls. I had taken all of Sam's test results from the past two weeks to show her how serious it was.
We did that and the secretaries were happy to get the scheduler for me. I reminded her about the situation and she literally had no clue who I was or what the story was. Nothing rang a bell to her. I have spoken to her every single day and some days more than once. She was not a friendly person. She was abrupt and sarcastic. I showed her the test results and she said, "This? This is what you are in a panic over and think he needs to be seen right away?"
I immediately felt shamed and crazy. Maybe the doctors back home were all wrong about the seriousness of this. "Well, all I know is what I've been told. I just thought maybe if you could show a PA here, or a Fellow, maybe a doctor if they have time and if they don't think it's a big deal, I'll stop bugging you."
"Everyone bugs me!" She said in return. "I haven't even received a referral or records and I've checked all the faxes this morning already. Our doctors are booked out months."
I felt sick in every way and all I wanted to do was cry...in a ball...in the corner. We left and took the elevator back to the hospital lobby. We were going to go back up to Huntsman Cancer Institute where Spencer was but instead, I said, "Guys. I need to sit down."
We found a row of seats and sat there. "We are not moving from here, until one of us has an inspiring thought of what to do next for Sam so start praying people."
We sat. And sat some more. I tried calling to our family doc again because they promised me they sent the records and referral two days ago yet it still wasn't where it should have been. I kept getting disconnected. A dozen times...the call wouldn't go through. Once it did and I left a discouraged, pleading message for the nurse to just give me a break and get the records sent like she had promised she would do. I wasn't mean and ugly, just so exhausted.
Shelbie said, "Why don't you take him to the urgent care instead of the ER. Maybe everything is better and he really won't need to see the Nephrologist."
That made so much sense to me and Sam agreed. The urgent care is part of the ER actually and I thought, at least, they could retest his urine and CBC and if it still looks bad, they can write me a referral that I could take down to the Kidney clinic and they would have a record that there is in fact a problem. We headed down there and they took us right back. Not one ounce of waiting around. I explained the situation and in less than 5 minutes, Sam was giving a urine sample and we were waiting on results. Just 2 minutes later, my phone rang and it was a hospital number so I answered it.
It was the scheduler from the Kidney Clinic and she was a completely different person. So friendly and I couldn't believe what came next. "I'm just calling to let you know we had a cancellation for a 1:00 appointment this afternoon and we would like to see your son in clinic if that works for you."
Unbelievable! She had sent orders for blood draws and a urine test which we had just done, with exception of the blood work. When the urgent care doc came in, she said they wouldn't have the results for a couple of hours so we could just leave and they would call with results. We hurried out of there and I sent Shelbie and Sam to the lab for blood draws and I ran back to Kidney Clinic to fill out the new patient packet, then raced back to the lab to grab the kids then ran up the hill to Huntsman and arrived just as Spencer walked out of the Radiology Department.
We had just an hour or so before Shelbie's PET scan and Sam's appointment 30 minutes after Shelbie's got started. We said goodbye to her and wished her luck, ran as fast as we could, back down to the University Hospital just in time for Sam's appointment with the Nephrologist.
I was expecting a long wait and ending up with the worst kidney doctor just because that's usually how things like this happen. NOPE. We had no waiting time and we got one of the top Nephrologists at the University! He is from Jordan, in the Middle East. He was at the hospital for a meeting and decided to stay in order to see Sam! He was absolutely the most amazing doctor! It took some time to get use to his heavy accent and he spoke sooooo fast!! Faster than I've ever heard anyone speak before. Of course, our local doc did send the records but they sent mine, not Sam's so nothing was making sense and I was so confused until he realized we weren't looking at Sam's chart.
He had never heard of Dyskeratosis Congenita before but he said, "Okay, please teach me something about this disease. I want to learn." It was an amazing hour of listening and learning and mutual respect. He pulled up research articles on how the disease can affect the kidneys and we read them together and he taught me so much! At one point, he even ran out to his car to get a portable ultrasound machine so he could look at Sam's kidneys himself.
He kept saying, "I know you are a smart mom and a good mom and I know you are scared. Don't be scared. I will take care of your family. I am your friend okay? Please don't be scared. We will fix this. I know the best surgeons, transplant doctors, whatever we need I will provide you the best care. You call me anytime you want. I want to get an email from you every day telling me how Sam is doing. Okay?"
I could go on and on about this miracle. It was truly an act of God to watch this unfold into the most amazing blessing.
So, Sam does have a problem with his kidneys though the details have yet to be determined. He said that doctors are quick to use the term 'kidney failure' when they see numbers such as 1.5 but he likes to reserve that phrase only for people already on dialysis. Incidentally, Sam's number is 2.7 so that is getting up there and serious. The ultrasound he did in the clinic showed some abnormalities in his ureters as well as fluid of some sort collecting around his kidneys. He ordered a formal ultrasound which we were able to do today. I am concerned that he is getting more venous malformations like he has around his heart and lungs. They spread and once they hit the kidney and liver, you are in trouble. It causes blood to shunt in those organs and creates all sorts of problems. He couldn't tell if the fluid was blood or something else.
Of greater concern than his kidneys themselves was his blood pressure. It is climbing scary high. He said there is a direct link between blood pressure and kidney health...I knew it! This is another piece of the puzzle that leans towards the venous malformation theory. I am suppose to take his blood pressure three times a day on both arms and email him the results. He asked how Sam's eyes were and I told him they were fine but then I remembered that he keeps losing his vision. We are so use to it now that I forget it's a problem. You could see light bulbs go off in his head. He said he often sees eye problems as a direct correlation to kidney disease. Again, it's a pressure and vascular issue.
Something has clearly attacked Sam's kidneys. They are swollen and struggling. We will need to wait a few days until all the labs are back and the ultrasound results before we determine the next step.
I feel so relieved with how things went today. Of course it's horrible news but the fact we have one of the top doctors is amazing. He even called Sam on his cell phone after the ultrasound to make sure he did okay through that and asked us to go back down to the clinic so he could check one more thing. I love this man!
Shelbie did okay for her PET scan although both kids are sick tonight with all the contrast and radioactive drinks they had to ingest. Sam is handling things okay as well. Sadly, he is suppose to leave for Disneyland on Saturday with all his cousins for Spring Break. He will not be able to go with them, neither will Shelbie or Spencer for that matter. It's sad to see them miss out on this but he's being a good sport which is another blessing.
It was such a crazy day and I am exhausted beyond exhaustion, mentally and physically and spiritually for that matter. I experienced Faith the way I think God has always intended for it to be. When we can do nothing more for ourselves, and when there are no earthly answers, all we can do is turn it over to the Lord and watch what he can do. Faith is work, such hard and constant work but so incredibly overwhelming when you see it unfold so effortlessly the way I saw it today.
Amazing. I am so grateful! <3
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