T Rex Family

T Rex Family

Friday, September 26, 2014

More on where I've been...Part I - Baby's Illness

First, she is fine and will be fine. It's just been a rough road getting it all figured out. The ironic thing about it is I promised a posting years ago based on a school project to post about pediatric urinary tract infections and I never wrote it. I think I was suffering school burn out at that point. However, I watched it all unfold exactly like a classic text book version right before my eyes despite my denial.

Fair warning - this is long so if you chose to skim or skip, I won't be offended. This blog is for my reference and family history so I like to keep it detailed. Plus, I type freakishly fast.

As I wrote previously about Baby (we will refer to her as BB - the acronym is perfect for so many reasons and it's what T dubbed her not to be confused with Bebe Sister which was what he called his other sister) she had several days of high fevers and after some time and testing it was finally determined that her primary illness was a urinary tract infection but she developed pneumonia in the interim while we were waiting on a diagnosis. I think from frequent visits to the hospital or pediatric clinic she acquired the pneumonia. I am always amazed when patients want me to have them admitted to the "sterile environment of the hospital". I do everything possible to keep them away from there. It is full of germs and all sorts of bad stuff. Most kids first antibiotics are amoxicillin. Our daughter started a bang with Azithromycin followed by Augmentin. Yes, she had a great case of diarrhea. That was no fun but she was feeling so much better and after the two weeks of antibiotics she was great and the bowel issues resolves.

Then at her 9 month well check which I postponed until 10 months (no vaccines were going to be given so I was not worried about being a little behind), she had dropped on her growth curves by about 50% for both weight and height. I asked for a re-measurement of her head and that actually got bigger so I was not as worried. With this, we decided further studies should be done for her after an febrile urinary tract infection. With her temperature being 104 degrees, it was probably a kidney infection and we needed to make sure no ongoing damage was happening.

I took BB to get a kidney ultrasound. It was about as easy an imaging experience as one could have. We had no wait and BB was in a great mood and sat perfectly still. It took less than 15 minutes to perform. By that afternoon we had results. There were some structural abnormalities on the scan - her pelvis was separated. Our pediatrician who is also a NP (and a mentor to me) called a urologist to discuss the case. The recommendation was prophylactic antibiotics, consult, and a VCUG (voiding cystourogram - fancy terms for putting a catheter into the bladder, filling it with contrast, then imaging it as the patient voids or urinates). 

Images are a groggy baby following her kidney scan. No photos were taken during the VCUG - I was too nervous and BB was not a happy camper that day.

Pause for a moment. 

So, from a clinical stand point I totally understood all this and could accept it. This is where it gets tough to be a health care professional and a parent at the same time. My head was saying, "Yes, yes, yes - this is what is needed" but my heart was saying, "No, no, no, I don't want to do this to my baby." It was a rough week. I scheduled the VCUG but when the scheduler reviewed how it was going to happen I started to freak out a bit based on the description she gave me. Now in her defense, she is a lay person with no medical training. So, really, she did not know what she was talking about. After I got off the phone I started inquiring about getting sedation so my baby would not be traumatized by all the events. Then I call our NP who called radiology. She suggested I do the same which I did. The description the scheduler gave was not accurate. So, I opted to go without sedation and made all the final arrangements. My awesome pediatrician still send an order for sedation if needed.

The morning of the test I was a wreck. I am an anxious person by nature but I now know what my patients say about having a full on anxiety attack where they feel like they have to leave and leave immediately due to anxiety. Wow! I hate medical procedures on me but I was actually wishing there was some way I could trade places with my baby. I was terrified for her. Lots of prayers and deep breathing and amazing hospital staff and I was ready to take my sweet little baby back for her test. I think all the prayers people were offering on her behalf really kicked in at that point, too. Only one parent was allowed to accompany her so I had Hubby stay home with our other children while I took the baby. Plus, with medical stuff, he does defer to me with my background. Next time, I will ask for the Xanax for me rather than her!

I had also contacted T's pediatric surgeon to see if she would be around and able to visit us at the hospital. We've become friends and I was thinking another friendly face would help ease my anxiety. However, she was out of town taking her boards but she gave lots of good advice and it helped knowing another person was sending good thoughts our way. Plus, she thought the plan in place was a good one as well as approved of our urologist.

The other person that was a blessing to speak with was T's kindergarten teacher. Over the summer we developed a great relationship outside of school with her. We always adored her but our time outside the classroom has been wonderful. As it turns out, her daughter went through the same thing. It was so nice to hear from her what she went through and how it made her feel. Plus, she's the classic kindergarten teacher so she makes you feel great about everything.

The test itself was not a fun experience. The kidney ultrasound, that was cool and kind of fun - like re-living when she was in the womb except seeing her insides with her outside. This was not like that. The room was kind of scary with all the big machines, wires, and a giant stainless steel toilet. BB was put in a cute little gown. At this point she was starting to get horrible diaper rash from the daily antibiotics. It was starting to get bad but it would get far worse before it got better. At this point, I had to switch her away from cloth diapers because of it. We were concerned that swelling from the rash would interfere with placement of the catheter so the nurse brought down a super tiny one. BB did not even flinch when they put it in. That was the part I was most worried about. When her bladder would get really full with the contrast she did not like that either but it did not seem particularly painful. What was hard was making her lay still and awake for about 45 minutes with her legs stretched so she would not pull out the catheter. I was draped in a lead-lined suit and at the head of the bed. Two techs and the radiologist were also present. The techs and the radiologist (who is a medical doctor) were awesome. The RN who placed the catheter was also wonderful.

I actually really enjoyed that the pediatric radiologist was a person my size. I'm pretty small and quite sensitize to the fact that my 6 year old is almost as big as me but she was the same way. It just felt good to talk with someone and not feel like I was literally being looked down upon. (It's why I often sit while my pediatric patients sit up on the exam table - so the can look down on me. Much less intimidating, I think.) I was especially intrigued by her lead-line glasses.

BB cried a lot. At one point she almost fell asleep but they needed her to roll from side to side so it woke her up. They would push lightly on her abdomen to get her to urinate and then if that did not work they would pour warm water on her to get her to do it. She was not happy with that but the whole point is to see what happens when she urinates. Several times she would look sadly at me and sign for milk. One tech said I was welcome to feed her but did not realize that would involve me stripping out of my lead suit. I explained that I did not think it was about needing milk as much as it was about comfort. They were young and did not have children so it was okay. I sure felt helpless so I sang her special song and stroked her head. I don't think it helped her feel better but it did help me feel better.

Sure enough, I saw it on the screen - reflux. As soon as she peed on the table I watched the contrast media back up into the left kidney. I saw it before the radiologist even said anything. Later that day the official reading said stage II. There are 5 stages so this is pretty good. There is about an 85% chance she will outgrow it. The bad news is that it could mean years of daily antibiotics to prevent infection. Recurrent infection is damaging to the kidneys which is why it is essential to prevent it and infection does not always manifest outwardly which is another reason it is important she stay on the medication.

Well, as I said the diaper rash worsened mostly because the diarrhea worsened. She was going about 7-8 times per day. At this point, my morale was also suffering. I was tired in so many aspects. Oh, and we had a vacation coming up, too. More on that later.

I tried a variety of things to treat the diaper rash, including switching away from cloth diapers. The problem did not seem to be the diapers as much as it was the constant diarrhea. Plus, the rash was taking on a blistering appearance and I was concerned for a yeast infection. I spoke with one of my favorite pharmacy groups in town (they do a lot of our stuff for my work) and had a special diaper rash cream compounded and also treated with a topical antifungal. At the suggestion of our pediatric surgeon friend BB and I both started probiotics. This seemed fine but again, I had to get the diarrhea slowed. I tried a day of just breastmilk. I tried eliminating all stone fruits. Then eliminating all fruits and veggies. Then a sweet friend brought over zucchini banana muffins and BB loved them. That's when the idea came to me to go on a banana only diet to see if that slowed her bowels. It took a full week. Plus, at one point while we were on vacation (yes, we managed to make it), Hubby accidentally switched the priobiotics and BB got mine which I think are a bit more concentrated. Since then, things have slowed significantly. Maybe the bananas, maybe the priobiotics, maybe getting used to the meds, or maybe maturity. It's better. Her bottom has scarring from the rash but I think with time that will resolve. I like to treat yeast for a week past symptom resolution so we're getting close there. I will do the same with the non-cloth diapers before switching back (it was viscerally upsetting to spend money on diapers when I have so many re-usable but I am learning to get over such things).

Now, we see the urologist this coming week. I don't expect new information. The plan for now is to continue the antibiotics for the next year. Repeat kidney imaging 3 months from the initial, and repeat VCUG in a year.

The past month has been a bit of a fog with everything. As I said, BB is fine and will be fine. If the urethral reflux does not resolve on it's own then she has surgery and she will be fine. The antibiotics have been horrible and the testing is really not fun, but it's not cancer and it is something we can and will handle.

The true blessing in all of this is the amazing people who have been so supportive and kind to us -  offering a shoulder to cry or to vent to, offering words of wisdom and hope through His words, friends who bring over cakes and muffins as comfort foods, and friends just being friends. It makes me realize that tough times are essential so that we can see how truly blessed we are.

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