Heres my out-of-order homecoming post: Our official discharge time was 2pm, but, as with any baby, staying on schedule is difficult. I am sure Lauren could sense that something was changing because she was clearly unsettled. They also altered her med schedule to be more condusive to home care, which seriously messed with the fine balance of everything and she was in some pain. They seemed to really want us out, as nobody really seemed concerned about the fact that she was basically inconsolable for two hours before we left. The docs wanted to give her time at home with her cocktail of reflux meds, hoping that themless stressful environment would help her heal and her gut issues would subiside to a manageable level. We ended up leaving around 4:30, which is a traffic death trap in Atlanta. It took us twice as long to get home which seemed like torture for Lauren. She would have reflux spells, which would cause her to try to arch her back, which in turn would cause her to press her tender sternum against the carseat buckle. :( poor kid. When we got home, Mikes ranger buddy met us there. Thank goodness he was there because coming home with a heart baby is unbelievably challenging. Unfortunately, as soon as we got home, Lauren threw up...a lot. In a normal kid, this would be a minor inconvenience and only moderate concern. For a shunt-dependent baby, this is a very big concern. Dehydration can be fatal. We called the on call cardiologist who gave us some guidance, and fortunately, Lauren was okay after that. Trying to carry a baby around who is attached to a pump and food bag that needs to stay elevated above the pump is hard. We have a pole to keep it on, but that doesnt help when on carpet, going in/out of the car, through doorways, during baths, etc. Then there is the issue of keeping milk in the bag. We have to constantly watch it, and fill it every couple of hours around the clock. Since hydration is critical, we have to avoid pausing the feeds too long or too often. On top of that, keeping track of nine different medications given at various times of the day is no fun either. We even have meds for which we must set an alarm to get up at 2am to administer. During our entire two days at home, we both felt like we were spending our entire time just trying to maintain the feeding and meds. We had to tag team everything, including the diaper change. Laurens reflux was so bad at home that just laying her down for a diaper change would spiral into a huge reflux fit and she would once again be very difficult to console. So, one of us would hold her upright while the other one did the change. Keeping a constantly upset baby in an upright position no matter what is hard as well. Before we discharged, we learned that we qualified for in-home nurse care. Unfortunately, there was only an order put in for a one-time weekly visit to check vitals and overall condition. I also worked with a case manager over the phone, trying to get a nurse for a set amount of hours per week. He told me that there are many families with kids of much, much lesser care needs who qualify for a lot of hours. Lord knows I could use the help when Mike goes back to work. But...then came day two...ugh. If you read the post Back Again, you will see that we only got to enjoy two days at home before Lauren had yet another flight up to CHOA.
Posted on: Sun, 14 Sep 2014 01:48:21 +0000
Trending Topics
Recently Viewed Topics
© 2015