During a routine visit with our regular urologist on Dec. 17, Susannah had some bloodwork done. Her sodium level was low, something that the urologist was not used to seeing. We were told to start her on a sodium supplement. When our pediatrician saw the numbers, he wanted the bloodwork repeated in his office on Friday, Dec. 19. He thought the numbers might be off. I took Susannah to the appointment and Aunt A-lo watched her while I went to an acupuncture appointment in hopes of de-stressing before the holidays. We were supposed to go to Boston the next day to hang out with the Collins. Instead the pediatrician's office called and told us to take Susannah to the emergency room at NYU Hospital immediately. (So much for my de-stress tactics. And did I mention it was 25 degrees and spitting freezing rain and the roads were covered in snow and ice and salt? New York City really socks it to you sometimes.) Heroic Aunt A-lo got Susannah in a car and Ben and I met them at emergency room.
After about six hours and eleventy-billion questions in the emergency room, we were moved up to the Pediatric Intensive Care Unit. Susannah was put on an IV for 24 hours and I couldn't nurse her during that time. We spent three nights in the PICU and got to go home Monday evening. My mom came over from Boston on Saturday morning. We were in the hospital for several days because you have to be careful when raising a baby's sodium level; it has to happen at the right pace over a certain period of time. Fortunately Susannah responded really well to the IV and was her usual trooper self as you can see from the photos we took. I was a wreck though, and Ben wasn't too far behind me.
What's more complicated is understanding why her sodium dropped. Was it related to her kidney issues or was it a separate adrenal issue? There were a lot of pediatric docs on the scene and a lot of blood taken from our tiny-veined little girl. It would take 5-7 days before we would have the results from the tests.
Meanwhile, once we got home it was uncertain rather or not we'd be able to make it to Chattanooga for Christmas. (Our plane tickets were for Christmas Day.) She was on a heavier dose of antibiotics for the urinary tract infection and a sodium supplement that we had to give three times a day. (guess what, babies do not like to swallow saltwater.) She looked good and seemed ok. Susannah had another sodium test Christmas Eve and the pediatrician said we could go if the results showed that her levels were normal as they were when we left the hospital. By 10 pm Christmas Eve we still did not have the results from the test! Luckily my dad had our pediatrician's cell phone number from a previous conversation and he gave us the go ahead. We found out two days later that the lab had closed without running the test; incidentally her number was 134, one point below normal, but well outside the danger zone.
Things were good our first week in Chattanooga. We continued to have her sodium level and urine tested every 5-7 days. Susannah got loved on by her family who never wanted to let her go. She started taking solid foods again. I started eating and sleeping again. And then she wasn't doing so well.
Around New Year's Day we started to notice that she was more irritable and eating less. Was she teething? Was it an earache? Was it the infection? It was hard to tell. A new urine test showed that she had developed a different bacteria in her urinary tract, one that was resistant to the antibiotics she was on. Sunday night, Jan. 4, she started a new antibiotic. It was touch and go for a few days, but on Thursday she was clearly better. Her weight was up; her appetite and energy level had improved. Then on Sunday we had to pack up and come back to NYC.
Tomorrow (Wednesday) we finally meet with the new urologist. He's the head of pediatric urology at Columbia. We are hoping that he has a more aggressive plan for the treatment of Susannah's kidney issues. The original plan was for Susannah to have her ureters reimplanted when she was about 1 1/2 years old. However, none of us can bear another 8 months of worrying about these persistent and dangerous infections. My dad is here to go to the appointment with us and help us ask the right questions.
One good thing is that the tests came back and show that Susannah does not have an enzyme defect that caused her sodium to drop. The endrochrinologist believes it was triggered by the chronic infection and will resolve itself once the infection is cleared. For now, little punkin still gets 3 cc's of saltwater 3 times a day. Ew.
If you saw our baby on the street you'd never know what she's been through. If you saw me on the street though you'd probably wonder what in the hell happened. As of now though, all the Aplins are doing well. Let's hope that we'll soon have a new plan to help our sweet baby thrive inside and out. More Chatt pics coming soon.
I think this was our second night in the hospital. The nurses gave us a big bed so I could sleep with Susannah. My mom and Ben took turns sleeping in that chair next to the bed.
Resting. Susannah had a lot of bruising on her wrists and elbows from all the needles they poked her with to get blood. They needed A LOT of blood to run the tests to understand why her sodium level dropped.
It was amazing how much plumper she looked after 24 hours on an IV. She gained over a pound while we were there! Having the IV on her foot made it a lot harder for her to get her toes in her mouth. But she made a valiant effort.
This photo was taken Dec. 18, the night before we went to the hospital. We knew she wasn't feeling 100 percent, but we had no idea how sick she was.
2 comments:
The update is good though it breaks my heart to read it and to remember how sick Susannah has been. Everyone at Baylor asks about you and Susannah every day, so I hope today brings some good news. All my love, Grandma M.P.
Talk about stress. We now have a long list of heroes though to celebrate...Susannah, her parents and all the wonderful family and friends cheering this darling girl on.
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