I’ve been pretty quite about the process of sending Caleigh to school so far. I’m trying to soak everything in and not jump to conclusions. Going with the flow has worked and I’m really not all to stressed about it. Like every step in Caleigh’s life, we plan, and then she changes those plans for us. So in being more knowledgeable about the patterns up until now, we are prepared for our plans to change.
Right now we are in a waiting stage. Public school in our district begins on Monday, only 5 days away. Caleigh will not be starting on this date. We are awaiting a solid health care plan and the ARD meeting that will go with it. Our neurologist is out of the office this week. So having Caleigh’s seizure medication on campus with her and having a seizure plan hasn’t been decided as of yet. Caleigh’s fluid and GI needs, while at school, have been taken care of, but again the ARD needs to be set so that we can approve the plan. Basically we are waiting on the doctor. The option for us to start Caleigh on Monday was given, but we have decided to have the full plan in place before she starts.
Our first ARD meeting was this past Friday. It lasted two and a half hours, and quite honestly that was due to the diagnostician’s inability to not repeat herself five times on every single point. The other time issue was our request for a private nurse. The IEP goals are fine. I asked for a draft of those goals well before the ARD. This gave us time to think through them and make any changes that we thought needed to happen. We signed the necessary paperwork to get a PT, OT, ST, AT, Vision and O&M evaluation started. This has to be completed within 30 school days. At that point we will go back to an ARD. Caleigh’s team will be great. Her teacher seems wonderful with 12 years experience. There will be two classroom aides that are very experienced as well. The class size is small. In general we left the meeting in a good mood.
Above I mentioned our request for private nursing. Initially when we asked Caleigh’s GI about going to school he said yes, but only if she has a one on one nurse. Eric and I talked him down to a one on one assistant. After talking with the school’s diagnostician and teacher we realized that although extremely experienced and well trained, they have no experience with a child like Caleigh. Having to explain to everyone we met that children with short bowel syndrome generally don’t go to school publicly. Talking about the many symptoms and death rates can really put a damper on your day. So we started moving forward with a private nurse at school. During the ARD we came to agree to disagree and wait on the doctors to decide the bypass.
The problem at hand is this:
1) We do not have a private nurse to send to school with Caleigh. Eric and I have done everything we possibly can to keep Caleigh in a typical environment without nursing. We have our helper that has been with us for over a year now and that is enough for us right now. It’s just enough respite to achieve what is on our to do list while raising our child at the same time. We care for Caleigh’s needs. Limiting those that have access to her cares is what has kept her as healthy as she’s been.
2) On paper, Caleigh has a g-button and needs 20ml of Pedialyte delivered over 2 minutes every hour. We voluntarily have adjusted feedings and medications to accommodate the 3 hours of school. Asking for a private nurse just for this isn’t justifiable mainly because the school nurse can handle these tasks.
3) Getting a private nurse to work with Caleigh for 4 hours tops, per day, just at school is almost impossible. The agencies that we work with have told me the same. This is the experience that we had when we tried to have a nurse in our home early last year. A trained RN wants to work 40 hours a week just like anyone that needs a full time job. This is completely understandable. I get it. There is also a lot that goes into funding for these nurses. Private insurance, Medicaid or SHARS funding ends up getting a little murky.
When we came home we started talking to other parents about the details of nursing at school. We got some good information. Probably the most important person we talked with is Caleigh. Yes, she is four, but she is a very self-aware four year old. We talked to Caleigh about our worries. Believe it or not she had been listening to all of our conversations and knew exactly where we were at. We asked Caleigh if she wanted someone to be just her helper. She told us “no.” Being miss independent that she is, we talked about the situation in depth with her.
So after the long weekend, Eric and I have decided to send Caleigh to school for the 3 hours without a nurse. We changed our minds. We’ve put a lot of thought into our decision. This has a lot to do with Caleigh’s team. The nurse and her experience and the fact that there will be three adults in the classroom are a huge part of this. After a lot of thought we have to think about Caleigh’s independence and what is best for her. We could worst case scenario this to death. The fact is that Caleigh needs fluids, may have a g-button malfunction or maybe a seizure. It is hard to treat her like she has a central line when she does not. Once Caleigh goes to a full day of school we will have to re-evaluate her needs while at school. Also, if there is an issue that comes up we will re-evaluate. This isn't an end all. It's just the decision for now. Until then, we will go with the flow.
This leads me to another point, getting sick. Everyone has agreed that Caleigh will get sick. All children that start daycare, school or anything in a group setting end up getting sick. The first year is rough, the second year is a little better and the third year is the golden year. The immunity gets better with exposure. This sounds all good and great for a child without intestinal issues. The gut is the first stop for immunity. Something about the bacteria you keep in your gut helps you stay healthy and yadda yadda blah. So our concern is that Caleigh’s immunity will never get built up due to the repeated exposure. Basically if she continues to get sick her guts are at risk for shutting down. If it shuts down she goes to the hospital and a central line would be placed. Again worst case scenario, but something that is in our minds. This is something that we will not know about until she is exposed and put in that situation. Live in a bubble or test the waters for normalcy? Right now everyone is on board for trying.
So as of now, we are waiting on doctor’s orders, the health care plan ARD and then Caleigh will start school.
Of course, all of this could change. Best laid plans and all….