We've had an intesting week. For those of you who do not know, Lily has moderate-severe reflux from her bladder to her kidneys. This means, she is extremely prone to urinary tract infections (UTIs), that can quickly turn into kidney infections, which are bad. As a result of this reflux, Lily takes a prophalactic antibiotic every day. We are usually pretty vigilant about watching for any signs that she is getting sick (constant temperature checking, appetite monitoring, etc). So far, Lily has had two UTIs. This week she go her third.
Early in the week Lily's appetite had been a little decreased, but she didn't have a fever and wasn't acting fussy or unhappy. She had a GI bug the previous week, so we chalked it up to her still getting over that.
Tuesday night, we were giver Lily her last bottle of the evening, and right before she was about to finish it, she threw up all over Carrie, and our sheets. She never got upset, it was almost like she was pulling a "puke and rally". After Lily got a clean-up bath, Carrie got a shower, and our bed got new sheets, we put her down to sleep for the night. When I went to get her up Wednesday morning, she had clearly thrown up again in her sleep. It didn't wake her up, and so it didn't wake us up, which was a little unnerving. We pressed ahead, and gave her another bath and got her dressed for school. We had already decided make an appointment with her pediatrician.
I started feeding her breakfast, which she threw up again. This was very projectile, going straight up like a geyser, and landing straight back down on her face. It was in her eyes, her hair, everywhere. We gave her another bath, I took another shower, our bed got new sheets, and Carrie took her to the pediatricians.
Because of her past history with UTIs, there is a pretty low threshold for collecting urine samples, which mean catheters. At the pediatricians office, they catheterized her 3 times, with nothing coming out. You can imagine how happy this made Lily. A final decision was made to limit her feeding to an ounce/hour, and attempt to collect later, unless she got a fever or any other symptom.
That night around 11:00 (Wednesday) she started to get a fever. After paging the pediatrician (as instructed), we were advised to go ahead and take her straight to the ER at Cincinnati Children's Hospital.
We got processed and seen extremely quickly. In fact, within 45 minutes, we had been registered, seen by an MD, catheterized, and had a plan. Unfortunately, the next few hours went a little slower. Because she had a serious infection (one MD refered to it as a "raging" UTI), they had to use IV antibiotics. Unfortunately for Lily, this required four attempts at placing the IV, 1 elbow, 1 hand, 1 foot, and the hand #2.
Because she wasn't tolerating any foods, and needed quite a bit of medicine, they decided to admit her. And that is were we spent the next two days, while Lily got her fair share of medicine, tests, etc.
Throughout this whole experience, the level of care, professionalism, and family-centered care from CCHMC is notable. Carrie works at CCHMC in the human genetics department, and so we are familar with CCHMC from an employer point of view, but to be a patient was something completely different. It is clear why this hospital is one of the best in the country. From the nurses who go above and beyond caring for these tiny patients, to the child life specialists that ensure every child is as comfortable as possible (they brought a basket of toys for Lily to keep in her bed and play with). It was really a blessing.
Lily has come through things OK. Although her appetite and feeding aren't quite 100%, they did improve dramatically when we stopped using the bottles provided by the hospital, and started using her own bottles from home (I shouldn't be surprised that she might be a picky eater).
When you spend much time in a hospital, especially a children's hospital, it can be a very humbling experience. There is no denying that we had a very sick little girl. But she had something that was identifiable, and very treatable, which made us very lucky. There were a lot of children who were not nearly as fortunate. I hope we don't have to go back anytime soon.
Early in the week Lily's appetite had been a little decreased, but she didn't have a fever and wasn't acting fussy or unhappy. She had a GI bug the previous week, so we chalked it up to her still getting over that.
Tuesday night, we were giver Lily her last bottle of the evening, and right before she was about to finish it, she threw up all over Carrie, and our sheets. She never got upset, it was almost like she was pulling a "puke and rally". After Lily got a clean-up bath, Carrie got a shower, and our bed got new sheets, we put her down to sleep for the night. When I went to get her up Wednesday morning, she had clearly thrown up again in her sleep. It didn't wake her up, and so it didn't wake us up, which was a little unnerving. We pressed ahead, and gave her another bath and got her dressed for school. We had already decided make an appointment with her pediatrician.
I started feeding her breakfast, which she threw up again. This was very projectile, going straight up like a geyser, and landing straight back down on her face. It was in her eyes, her hair, everywhere. We gave her another bath, I took another shower, our bed got new sheets, and Carrie took her to the pediatricians.
Because of her past history with UTIs, there is a pretty low threshold for collecting urine samples, which mean catheters. At the pediatricians office, they catheterized her 3 times, with nothing coming out. You can imagine how happy this made Lily. A final decision was made to limit her feeding to an ounce/hour, and attempt to collect later, unless she got a fever or any other symptom.
That night around 11:00 (Wednesday) she started to get a fever. After paging the pediatrician (as instructed), we were advised to go ahead and take her straight to the ER at Cincinnati Children's Hospital.
We got processed and seen extremely quickly. In fact, within 45 minutes, we had been registered, seen by an MD, catheterized, and had a plan. Unfortunately, the next few hours went a little slower. Because she had a serious infection (one MD refered to it as a "raging" UTI), they had to use IV antibiotics. Unfortunately for Lily, this required four attempts at placing the IV, 1 elbow, 1 hand, 1 foot, and the hand #2.
Because she wasn't tolerating any foods, and needed quite a bit of medicine, they decided to admit her. And that is were we spent the next two days, while Lily got her fair share of medicine, tests, etc.
Throughout this whole experience, the level of care, professionalism, and family-centered care from CCHMC is notable. Carrie works at CCHMC in the human genetics department, and so we are familar with CCHMC from an employer point of view, but to be a patient was something completely different. It is clear why this hospital is one of the best in the country. From the nurses who go above and beyond caring for these tiny patients, to the child life specialists that ensure every child is as comfortable as possible (they brought a basket of toys for Lily to keep in her bed and play with). It was really a blessing.
Lily has come through things OK. Although her appetite and feeding aren't quite 100%, they did improve dramatically when we stopped using the bottles provided by the hospital, and started using her own bottles from home (I shouldn't be surprised that she might be a picky eater).
When you spend much time in a hospital, especially a children's hospital, it can be a very humbling experience. There is no denying that we had a very sick little girl. But she had something that was identifiable, and very treatable, which made us very lucky. There were a lot of children who were not nearly as fortunate. I hope we don't have to go back anytime soon.
For those of you keeping score, here are the numbers:
- Times thrown up (6)
- Baths in a 24 hr period=4
- Sheet changes in a 24 hr period=3
- IV sticks=4
- Doses of ampicillian=7
- Doses of Ceftriaxone=3
- Days in the hospital=2
- Hours slept by Me and Carrie during this period=8
- Number of sick babies made healthy and happy again=1 :)
I have posted some pics from Halloween as well as from CCHMC here.
1 comment:
Poor Lily! I'm glad she's feeling better. She looks like a kid and not a baby in her photo - so big. I can't wait to see her at the GC reunion :)
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