We have plans to leave the PICU!
Sarah's doctors feel that the best next step for her is to transfer to a sub-acute facility. There are some definite pluses and minuses with this plan. I feeling my way toward comfort with the decision. It is my decision at least in part, after all.
The day before yesterday we were very excited. We felt very encouraged by Sarah's strides toward health. Then entered a parade of doctors. First plastics came. They are wonderful. They don't really have much to do with her stay, at this point. She is well healed from the surgeries. Good news. Then neurosurgery came. They were mostly just visiting one of "their" patients. They ordered a CT, because it has been awhile, and there is some redness on her head, close to the top of her shunt. The CT was just ambiguous enough to warrant further testing- so they "tapped" the shunt. (They used a needle to collect some fluid and also to make sure that the pressure was OK, and the shunt is working. The fluid is sent to the lab to check for infection.) Then the PICU team came in.
Yes. Sarah is doing well. Yes. She has weaned quickly and well from both sedation and the vent. But, they think that her path home is going to take weeks, not days. Gut punch. We have tried to stay optimistic for weeks, and in the past week it has been easy because Sarah has been doing so well. She plays and smiles and tries to bounce out of bed. She expresses herself well, and has favorite doctors, nurses and therapists. (Last night a favorite respiratory therapist was doing chest PT, which means he was thumping her chest with a small, soft, rubber, "percusser" to loosen stuff in her lungs and help her to cough it out. She reached out her hand and started patting his chest in just the same way.) She is acting like herself.
She is acting like a particularly happy version of herself. It is not that she was never happy, but for the past couple of days, it seemed like she was happy as often as she was awake. I don't know if she was just pleased to be able to do more because she has fingers now, or if she had been struggling to breathe more than we thought and so the trache makes her happy, but either way she has been happy.
Sarah is on very low vent settings, but she also has lung damage. To go home, we do not just have to decide whether or not she needs a vent, we have to figure out what the settings will be. That will take some time. And then Sarah started withdrawing from her narcotics yesterday. Getting that under control will take some time. She does not need acute care anymore, but neither are we in a stable and ready to go home.
We want to go home.
HSC is right up the road from Children's hospital in DC. It is supposed to be a very beautiful facility where Sarah will get much more therapy. Unlike the ICU focus on acute medical needs, which we do not need, their focus is on rehabilitative therapies. They are very good at training families for equipment needs. They will ultimately be the ones who will get us the adaptive equipment she needs, like a stroller, a bath chair and a stander. This is are good relationships to have. We expected to begin these relationships outpatient.
On Monday we will move. The bad news is that the nurse to patient ratio is much higher- of course since it is not acute care. We will probably not have out own room anymore. We will still be living in DC, not home. The good news is Sarah will get more physical, occupational and speech therapy. She will be working with a team that can begin the long process to get her the equipment she needs. She might not have to stay in her hospital room! They have other therapy rooms available to their patients. There is a playground which Lily can use, when she comes to visit. Let's all pray it is wonderful, but also that we don't have to stay very long.
Oh. And the fluid from the shunt has not come back from the lab. We certainly do not expect it to show an infection, (no one does or we would be staying here in the PICU) but we can give that concern to our Lord as well.