Wednesday, November 20
Hazel goes to see Dr Bowman every other week for regular checkups on the cornea transplant and the health of her eye. The cornea looks great and was very clear, so no worries at the moment about her cornea transplant. We have been concerned about her eye pressure since it is closely associated with glaucoma. A safe and normal range for Hazel's eye pressure should be from 10 to 20...at her appointment the pressure was 34. Pretty deflating news for us. At the appointment Hazel received an eye drop to help alleviate the pressure.
By the time Hazel got home at 10:30 am she was screaming and crying without ceasing. By now we are familiar with her tired cry, angry cry, scared cry, hungry cry...this was different. Hazel was crying loud and long enough that we started to worry about her breathing. She was taking in small breaths and sometimes struggling to take air in. Things got scary at this point. Aubree and her Mom took Hazel to our pediatrician to get her chest listened to and to get help. They did not find any breathing issues by listening to her breathe and checking her airways. Her temperature was 96, which seemed low...so Dr. Le sent us to the Children's ER.
The ER was a new and frightening experience for us. It was full on Emergency Room triage...just imagine someone kicking over an ant bed while screaming. Hazel was surrounded by up to 10 doctors, nurses and EMTs who were all performing their designated job. Aubree and I stood next to the warming bed and tried to hold it together while they worked on our baby girl. Her temperature was down to 93....then 91. Her heart rate was slow, breathing was weak and an oxygen tube was placed in her nose. They put a warm IV in her head, took a blood sample, urine sample, nose swab, chest x-ray and even attempted a spinal tap (which ended up not happening). This is another scene which is hard to describe from our perspective. If you ask Aubree she will probably describe this as the worst day of her life. It's hard to think about what would of happened if we didn't take her to the ER when we did. We could have lost her. It's hard to think about it but it's true...we could have lost her.
After an exhaustive process of questions and retracing her medical history, we were able to identify the source of the problem. Despite multiple experts saying it couldn't be her new drop...it was. The new drop has a beta blocker component which is harmless for adults and has been used on kids, but in rare cases can be harmful to infants. At this point we don't gloss over the small print for medicines or procedures. So when they say, "In rare cases _______ can occur", we soak it in and remember that our baby is a living rare occurrence. The beta blocker slowed Hazel's heart rate and respiratory system which in turn lowered her temperature.
One bit of good news from our visit is that we were able to see the pediatric ophthalmologist at the hospital. They were able to measure her eye pressure again and it's down to 18!!! EIGHTEEN!!!!!! Hopefully this means her eye pressure will stay in the safe range for the foreseeable future. Hazel has a follow-up appointment next week with our glaucoma doctor.
Thursday and Friday
We have been in the hospital since Wednesday while Hazel is under observation. They are holding us until the blood cultures come back from the lab. A "contaminant" was found in her initial blood draw that most likely came from something on her skin in the ER. They took blood yesterday to have a second sample analyzed...which took four attempts with an angry Hazel. Right now the second blood sample has not grown any contaminants and looks good. We feel confident that the first blood sample was lab error and that we can go home today. If it was up to us we would have gone home last night...kind of feel like hostages at this point.
We're thankful for our family and visitors who have brought snacks and come to check on us. We would still appreciate anyone who can keep Hazel on their prayer list. She is definitely a fighter and keeps working hard against all these hospital visits.
Through this experience Aubree and I learned that having the best doctors is great and medicines are amazing...but we can't take anything as a certainty. We will do everything we can to give Hazel expert medical attention, but still lean on prayer and God's grace to keep her healthy.
UPDATE (4:00 pm, Friday)
We will be in the hospital for another two days or so. The short explanation is that we need to wait for the contaminant in the blood sample to grow until the medical staff can determine what it is. Pretty frustrating news, this is the second time we thought we were going home...
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