A week after we brought Josie home from the hospital, she wasn't doing well. She was becoming very lethargic and was hard to wake. Therefore, she wasn't eating well....because every time she tried to eat....she fell asleep. Literally. I would strip her down and it made no difference. Also, when she was discharged from the hospital she had "slight jaundice". I had been putting her in front of the window with her shirt open to expose her skin to the sunlight as much as possible (sunlight breaks down the bilirubin that causes jaundice). She was literally turning into a tangerine before our eyes.
I called the pediatrician's office and they agreed to see her that evening. I took her down and the pediatrician guessed her levels were around a 12 by looking at her. 20 is dangerous in regards to potential brain damage. I needed to take her to the lab to have her levels drawn.
Josie and I hopped back into the car, and off we went to search out a lab that was still open at night. We found one across the street from one of the hospitals. I went in, only to be told that there wasn't anybody there that was able to draw from an infant that young. I kindly explained that it was urgent. A few phone calls were made and an hour later a very nice phlebotomist came from the hospital to help out. Blood drawn....SUCCESS. We headed home.
I got a call from the pediatrician's office.....her bilirubin levels were dangerously high and she needed to go to the emergency room immediately to be admitted. Off we went. The Pediatric ER Doctors are WONDERFUL. After using a fun infrared light under her hand....three attempts (my poor pin cushion), and an IV line was started. She was admitted to the pediatric ward of the hospital for light therapy in a "Bilibed". I was not allowed to take her out, unless I wrapped her in the "biliblanket". The first night was not bad. I slept on the pediatric bed next to her little bassinet. There was NO way my baby was going to be alone. Throughout the night, nurses came in and out to take vitals. Just a note....the night staff is pretty cranky in comparison to the day staff. There was one really nice woman who we liked though! Kevin was kind enough to bring me a change of clothes and a toothbrush to help me through. I also lived on Turkey sandwiches from the cafeteria.
Here is where I get a bit annoyed. So the staff that draw her blood come in and tell me that they need to check her levels. I totally get that and they work away and off they go. Now....a reminder is that she has a blood disorder (polycythemia) which makes drawing her blood particularly difficult. They return in a bit and tell me that they need to do it again, because the Dr. said that the lab made a mistake. Again....they prick and prick and squeeeeeze my angel's foot until it looks mangled. Off they go.
In the meantime, the Dr. comes in (picture a woman who doesn't take care of herself, hasn't showered, or combed her hair, and is wearing a pair of crocs....not because they are puke proof, but because I think she is too lazy to wear anything else that requires ties or buckles). She starts going on and on about how Josie is lethargic and isn't eating and how they need to determine if it is due to her having Down Syndrome and "Low Tone", or because of the Jaundice. I kindly explain that I know that many children with Down Syndrome have "Low Tone" but her's was actually in the normal range (low average....but still average). Also, she was nursing fine in the other hospital where she was born, and I didn't think it was all of a sudden a skill she had lost. The lactation consultant came in to check her out and also agreed that it was NOT the Down Syndrome, but was in fact the Jaundice that was causing the problems.
BEWARE- if you have a medical condition and a medical provider looks at you for the first time, you may have to remind them to take off the "tinted lens" they are looking through. Not everything is going to be associated with "Down Syndrome".
Back come the lab staff....again they claim they need to re-draw her blood because of another lab error. This time, I am getting a bit Mama Bearish. I ask specifically why the Dr. believes there is an error. They tell me that the tests are showing that Josie has too many red blood cells and platelets. UMMMMMM.....YES....I KNOW.....SHE HAS POLYCYTHEMIA WHICH IS RIGHT IN HER CHART. DID THE PEDIATRICIAN READ HER CHART.....EVER?!?! Now I am LIVID. I have been cooped up for 4 days and I am about to lunge at this woman's throat the next time I see her. The lab technician and staff are also very frustrated (not with me....but their eye rolls at one another clearly state that this isn't the first time they have had to deal with this woman's ineptness). The staff refuse to carry out the order until the pediatrician comes and speaks directly to me. In comes Dr. Disheveled. "Ohhhhhh....I was wondering if you Kneeeewwwww she had polycytheeeemiiiiiaaaaa". UM YES.....I HAD IT ADDED TO HER CHART WHEN SHE WAS ADMITTED. Thirteen holes in my baby girls feet because this woman couldn't read a chart. SO WRONG.
In walks the nurse from the NICU. The NICU staff were caring for her even though she was in the Ped ward because she had already been home for a week, and there was no room in the NICU. The nurse starts rambling on about "Failure to Thrive" etc. and hands me some paperwork about Down Syndrome that explains all of the things that "COULD" be wrong with her and goes on to explain how we will need to teach her to control her "Sexual impulses" and that she will have "Anger Issues". Ummmmm.....I have worked with children with Down Syndrome for a while....and from what I understood, children with Down Syndrome have a range of emotions just like every other child. They are not "Always Happy", nor are they "Raging" 100% of the time. Also, you teach ALL children socially appropriate behavior. AND.....OMG....she is a WEEK old....is this even appropriate? I checked out the copywrite date and it was nearly 20 years old. Do you have any idea how much has changed in research and outcomes in 20 years!?! I couldn't believe the garbage I was handed. Not to mention the lack of understanding the staff even had. She did not have "Failure to Thrive"....she had "JAUNDICE". Our medical community needs to do a much better job at keeping their staff up to date on these things. When I get the chance, I plan on having a nice conversation with the head of the Pediatric Ward of that Hospital. I have a few suggestions and resources for them.
Bottom line....when a medical professional walks in....ask first, "Did you look at her chart?"
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| My Little Tangerine! |
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| Josie Posie! |
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