It's 3:30 am and as usual, I am having difficulty sleeping in this hotel (I am in LA). There have been some recent developments with Erin that merit recording.
Over the previous week, we had noticed increased difficulty in getting Erin to eat. She ultimately would, but often would cry after taking the bottle for a moment or two, and getting her to resume required great patience and time.
On Friday, she threw up in a big way, and repeated it on Saturday. Sunday, after she skipped a morning feeding and only took half of what she would normally eat the other two feedings, we called the pediatrician, who immediately advised us to get her to the ER at Children's. There are two worries when she doesn't eat. The first is dehydration, which can be devastating to any baby, but even more so to Erin because of her condition. The second issue is that she needs to eat quite a lot to grow and gain strength. Her heart has to work so much harder than a normal heart that it results in her burning more calories than a normal baby would, thus requiring her to eat more.
The ER was typical. Hurry up and wait. In our room, they had Toy Story playing on the TV. The movie played in its entirety twice, along with half of another movie before we were finished. They examined Erin, took x-rays of her mid-section to examine her heart, stomach, and intestines, and checked her from head to toe. While we were there, she began to exhibit some very frightening behavior, where she would suddenly open her eyes wide as in terror, fling out her arms and legs, and act very scared. It would pass quickly, but it happened a number of times that we could observe. It could just be the typical baby habit of starting over almost anything, or it could be a sign that she is having neurological issues related to the stroke.
Ultimately, they decided that she needed to be admitted so that she could be put on fluids, and to monitor her eating. This required the insertion of an IV, which was painful and traumatic to watch her go through. She was admitted to the fifth floor as opposed to the NICU. The good thing is that we shared a room with only one other baby, and there was a TV. In addition, one of us could spend the night. The downside was that the other baby cried the entire night, poor thing.
I spent the night with Erin, and she started eating better almost immediately. One possible diagnosis for her eating disorder was thrush (sp?), which is a white coating of the tongue. If it extends down into the esophygus, it can be very painful for the baby. The treatment is to swab a drug who's name I can't remember right now around her mouth a few times a day. Unfortunately, the combination of that drug, along with her other medications and a whole lot of milk caused her to throw up everything in her. She was sitting in my lap at the time, which meant I was soaked from top to bottom. It only took the hospital 3 hours to bring me a set of scrubs to change into, as my clothes were a disaster.
Erin slept all night, until I finally woke her at 4, upon which she ate like a champ and went right back to sleep. She woke at 6:30 and ate again, and then ate again at 8:30. We were finally released at 1 pm, just in time for our appointment at the hemotology clinic. We had made this appointment weeks before, after being informed that Erin had tested positive for a gene mutation that greatly increases the risk of her forming blood clots. There is a family history of blood clots, and they are a serious threat to her in that it could cause another stroke.
Upon arriving at the hematology clinic, we were met by one of the cardiologist who had the unpleasant task of informing us that the x-ray from the day before showed that Erin has a potential bowel obstruction, and that we needed to return to the ER as soon as our appointment was over. Perfect.
After examining her, we spent time discussing her situation with the attending. Basically, it's more of the same. Is she at risk for developing clots - yes. Can they do something about it - maybe. Do they know what to do - no. What's the course of action - wait and see. Maddening. We did learn that the ASD hole in her heart can allow a clot to reach her brain and cause a stroke, and perhaps this is how her first stroke occured.
We returned to the ER, went through the entire admitting process (again), and waited for the doctor after Erin was once again examined. The doctor came in to tell us that the hospital had miscommunicated their message to us. They had said that if she wasn't eating, and she wasn't stooling, then have her come in. If she was doing all of those things, then what they saw on the x-ray was a shadow and not a blockage, and send us home. Too bad they didn't communicate that correctly, as it was stressful and wasted an additional two hours.
Allow me one small rant. As much as we love Children's and the people there, and this time was no different, their policies and procedures are enough to drive you stark raving mad. When we arrived at the ER, I had to show our insurance card, which I do for each and every single visit. I had to fill out the same forms I do each time. Erin then had to be weighed, had her temp taken, and had her blood pressure taken, each of which she hates and finds very invasive. Every single person who came in to see her had to listen to her with their stethoscope, again something she dislikes. When she was being sent to the fifth floor, they even listened to her just as she was leaving. For what? When we arrived at the fifth floor, she had to be weighed, temp taken, blood pressure taken. Why...was the ER incompetent, or wouldn't they release the results? Every single person who approached her listened to her. The next day, after thoroughly examining her (you guessed it...including weight, blood pressure, and temp), she was released and we proceeded to Hematology. Upon arriving at the clinic we had to present our insurance card, sign the same forms, and then...yes...weight, blood pressure, temp. And lots of stethoscopes. When we returned to the ER (remember...we had left less than 24 hours ago), it was the same. Insurance card, forms, weight, temp, blood pressure, scopes. Even though she didn't need to be there. The doctor who came in to tell us this still listened to her before she left.
The scopes I can understand. They want to make sure she is doing ok. But tell me why they each need to take the same readings, upsetting her over and over? Can't they share the information? Can't Hematology trust the ward to get it right when they did it one hour previously? Or for that matter, can't the ward trust the ER who had done it shortly before admitting her? I guess the ER wouldn't trust Hematology because they were angry that the ward wouldn't trust ER. Ok, point made, rant over.
Since returning home, Erin has been doing better eating, and is very happy and well adjusted. I had a number of conference calls to take, and upon finishing, I walked into the family room to see how Erin was. Sheila had left her asleep in her swing while she went to pump. In the meantime, Erin had woken and was just playing by herself in the swing, looking entirely content and happy. When she looked over and saw me, her face lit up in a huge smile, and she immediately started her cooing and noise making. It was absolutely the best moment ever.
Other good moments come when she wakes up. After her elaborate stretching routine, she starts opening her eyes and then going back to sleep. If I lean down to kiss her, she will get a quick smile on her face without opening her eyes. When she finally does wake, her usual first reaction to you is a huge smile. We put her on the changing table to change her diaper and brush her hair. As soon as the brush touches her hair, she starts smiling and doesn't stop. She loves having her hair brushed. Funny how you spend your entire life chasing goals and dreams, and one day you discover that the ultimate happiness and satisfaction isn't found in any of those things. It is found in your child's simple smile.
The pictures taken above were taken by Sheila on her birthday, which was yesterday.
