We are still in the PICU and will most likely be here for a little while longer. Samantha still has her breathing tube in place. Sam's been extra sedated today as we have noticed that she has trouble sleeping with the breathing tube. Her heart rate is a bit higher than we like, although we aren't sure why that is. When she is awake, she has a look of either disgust or fear on her face. My feeling is that she is sick and tired of being in the bed, and in the hospital. I can't say I blame her.
Tomorrow afternoon, barring any complications between now and then, she will be getting her g-tube surgery. For friends and family who do not know what that is, I like to think of it as a life line for Sam. It will be a small little button in her stomach that we will hook up liquid foods to for Sam. She isn't always able to eat or drink enough and therefore she has fallen off of the weight charts for her age/height. In addition, we have noticed her choking more often (especially when sick). Finally, kids with metabolic disorders need more fluids/calories than a typical child would. All of these things combined equal a recipe for disaster without extra supplementation now and then. Our hope is that Sam will still be able to eat by mouth (perhaps only certain textures) and we will use the tube for supplementation and her medicines. I admit that getting her meds/supplements into her has not alway been easy. So, at the very least I hope she is happy about not having over a dozen meds forced into her mouth each day.
The current plan is for the breathing tube to stay in for at least several days after her g-tube surgery. At some point we will try to remove the breathing tube and see how she does without it. If Samantha is unable to do well without the breathing tube (or with something like bipap) we would then move toward something more permanent--a trach. However, that is a few days, and many decisions away. For now I'll just focus on her surgery tomorrow and hope it all goes well.
Until next time,