Disclaimer: I am not a medical expert. I am sharing my daughter’s kidney journey to document her story, share updates with family and friends and hopefully ease the mind of a parent going through a similar situation. Please read my full Disclosures and Disclaimers.
This is a continuation of our daughter’s multicystic dysplastic kidney journey. The beginning of her story is here and the first trip to the children’s hospital is here.
I wasn’t quite sure what to expect with the repeat labs and ultrasound but it was kind of the good, the bad, and the ugly. It started with the ugly.
The Ugly: Attempted Labs (Blood Draw #2)
We went in for another blood draw exactly 1 month after the Sweet Pea’s first set of labs (September 12, 2019), only this time in Bend. Knowing the experience of the first blood draw and not wanting our older daughter to see this, my husband stayed with our older daughter in the car while I took Sweet Pea in. There are several locations to do a blood draw in Bend and we chose this location based on where it was in Bend. That was probably our biggest mistake. The staff were unable to get a sufficient blood sample. There were 3 different people helping and poked her twice. The staff at this location told me I did everything right. She was hydrated and I had kept her warm. Her veins are just tiny. I wanted to scream, “Of course her veins are tiny! She’s 2-months-old!” We went home without the labs in hopes of trying the next day. The staff put in a request for the lab supervisor to give me a call the next day to find someone with more experience to do the blood draw. We will never go to this location for labs again.
The Good: Labs…Again (Blood Draw #3)
Now for a little good.
After waiting for a call from the lab supervisor and finally talking to her the following afternoon (September 13, 2019), she suggested we go to the Heart and Lung Center at the hospital in Bend to have blood drawn. That location had more experienced staff. What a completely different experience for us. My husband and older daughter stayed in the parking lot while Sweet Pea and I went in. They were expecting us, so we didn’t have to wait long. The blood draw was fast and efficient. Only 2 other people in the room besides Sweet Pea and I. They took a quick look to decide which arm to draw blood from, poked her once and got what they needed. I will absolutely be taking her back to the Heart and Lung Center lab for future blood draws.
Lab Results
A little more good news.
Four days later (including a weekend), I spoke with a nurse from the Pediatric Nephrology department at Doernbecher. Sweet Pea’s labs looked better. The nurse was going to have the doctor look at them and double check. If they’re good and the ultrasound is good, we don’t have to go to Portland and see the pediatric nephrologist until Sweet Pea is one.
Ultrasound #2
Another good experience.
We went in for Sweet Pea’s second ultrasound about 2 months after the first (October 9, 2019 when she was 3 months old). This time, we went to a location in Bend (but not the same place we went for my third trimester ultrasound). We had another good experience. Sweet Pea did great. She cooed and “talked” to me the whole time. The ultrasound technician had me roll her on one side while she took pictures of one kidney and then roll her on the other side so she could look at the other kidney. They also looked at her bladder. Then the tech left the room for a little bit so she could look at the prior ultrasound (I love the sharing between doctors and locations, technology is awesome) to make sure she got all of the right pictures. Not being comfortable nursing our baby in front of strangers, I took advantage of the tech being out of the room and fed Sweet Pea.
When the tech came back in, she got some more pictures just to make sure. I’m glad she double checked the first ultrasound. For me, it was better to spend the extra time while we were already there, rather than have to come back for a second ultrasound (or rather Sweet Pea’s third ultrasound). The ultrasound technician is not actually supposed to tell you anything. They are supposed to wait for the doctor to read the ultrasound photos and then get back to the patient. I very much appreciated the tech telling me a few things she found during the ultrasound. This gave me a chance to mentally prepare. As of this ultrasound, Sweet Pea still had at least 1 cyst on her right (good) kidney. The report from the previous (first) ultrasound said there were 2 cysts, but they only measured 1 of them. The tech (for the second ultrasound) could only find one this time.
Anxiously awaiting the Ultrasound Results
Two days after the ultrasound, I called Doernbecher Children’s Hospital in Portland. They confirmed that they received the ultrasound report and images the afternoon before (it took 24 hours for Bend to send them). The doctor had not looked at them yet. The lady I spoke with was going to have the nurses ask the doctor to look at them so I could hopefully get an answer before the weekend. Kind of sounds like a game of telephone to me. At this point, it was Friday (October 11, 2019). She said that if I did not get a call by Tuesday afternoon to call them back. It feels like lots of hurry up only to wait more.
The Bad: Going back to Portland
Later that same day, I heard from one of the pediatric nephrology nurses at Doernbecher Children’s Hospital. She had spoken with the pediatric nephrologist about our daughter’s ultrasound. (Yay! We don’t have to wait the weekend for an answer!) There were 2 cysts back in August (2019, at the first ultrasound). And there were still 2 cysts in October (2019). It did not appear that they had grown. They did not get measurements on both cysts back in August, the report just says 4 mm. In October, the report says 2 small cysts, 4 mm each. The pediatric nephrologist just wants to watch these cysts in the good kidney. They did not seem overly concerned.
However, her left kidney (the bad kidney) had grown because the cysts had grown. In August, they saw multiple cysts. Two months later, they saw just 1 really big cyst that measures 3 cm x 1.7 cm x 1.6 cm. Our baby was 3 months old. You can imagine a 3 cm long cyst inside her kidney. That is huge. They referred us to the pediatric urologist at Doernbecher. This made me panic a little and I hoped we could get an appointment with them quickly. At that point, it was a Friday, and we were supposed to wait for a call from the pediatric urology department. If we did not hear from the pediatric urology department by the following Thursday, I was asked to call them. So, we had to wait at least until Monday. What a worry filled weekend. It always seems like a hurry up and wait situation.
Surgery?
Talking to the pediatric nephrology nurse, they were going to see what urology said and at that time, they think Sweet Pea will most likely have surgery to have that huge cyst taken out of her bad left kidney. At this point, we did not know if the other cysts disappeared, and this one cyst just grew or what it was. It could have been much worse. The nurse implied that they would take out just the cyst and not the whole kidney. We would know more once we heard back from the pediatric urology department the following week. What a way to start the weekend.
Scheduling Appointments
So this all meant another trip to Doernbecher Children’s Hospital in Portland. Knowing that we were coming from Bend (a minimum 3-hour drive), they tried to schedule appointments with the pediatric urologist, the pediatric nephrologist (kidney specialist), all the labs and another ultrasound all on the same day. I told them it was okay to schedule the appointments on back-to-back days because we can make the trip 2 days long. We knew we would not be doing it all in one day anyway. I would rather not have to be at the children’s hospital 2 days in a row but it is what we can get.
We only had to wait until Monday to hear from the pediatric urology department. They got us scheduled for our appointments about the middle of November (no surgery yet). Another 10 days later, we got a little good news. We didn’t need to see the pediatric nephrologist in Portland on our November trip unless the pediatric urologist had concerns. Yay for one less appointment!
Stay tuned for my next post with how the trip to Portland and all of our appointments went.
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