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Lauren by designNovember 15 We are being watched...I guess I knew this since my son was hosptialized but the reality sort of hit me square on the other day... the diabetes care team is actually watching closely how we care for our child. Well duh. What was It thinking (or not in this case). Of course, their highest priority is the welfare of our child. That is good. So what brought on this realization...
Caring for a diabetic child (or caring for yourself if you are a diabetic) is not easy (it isn't really hard but...). It requires a reasonable understanding of math, general problem solving and some understanding of the biology of the human body, as well as the capacity to pick up some basic nursing skills. The sad part is that I could compeltely see how a family could not be able to get a handle on things and perhaps run the risk of losing their child because they could not care for him. November 04 Kids are amazing...Friday was one month since Jean-Paul was diagnosed. I can't believe how much things have changed but on the other hand, it feels so normal. I have to give all of the credit for how well things have been going to my son. He has been amazing. Marc and I were concerend because he was almost too good about it. Funny, huh?
It is hard to believe that a six year old can get his head around so many concepts so quickly; understanding carbohydrates, making trade-offs regarding foods, testing his own blood sugar, sensing and reacting to drops in his blood sugar. He never complains about testing his blood or getting an insulin shot. I don't know of many adults who could take something like this in stride.
The thing is, the diabetes has not taken over his life. In some odd way, it has enhanced it. Maybe that isn't quite the word but his teachers have commented on how he has grown through the experience. He is taking on more responsibility. He has shared more at show and tell with his classmates like his experience at the hospital, his medic alert bracelet, and the daibetes bear that the JDRF sent him.
His classmates are even getting involved... they take turns taking him to the nurses office to get his blood sugar tested at lunchtime. They see him test his blood and ask questions. They have treated him as they always did.
I hope that he continues to adjust so well.
October 30 Paper, paper everywhere...So...Jean-Paul has been home from the hospital for a while now... we are finding that the diabetes is much more managable than we originally thought. Fortunately, our son is still the great kid he always was. He has hardly shed a tear over all of this... other than a small incident regarding some pie that his science teacher brought in for his class. Pie is important to Jean-Paul... :-) Tomorrow is Halloween. It will be a big test for him.
Marc and I have become proficient in giving injections... not as difficult as I thought provided that no squirming is involved.
The thing that I really struggle with is the organizing, administration and the papers.... My son who was always an amazingly healthy child now needs a lot more appointmenets to maintain his health... eye exams, visits to the care team at CHOP, a nutrtionist, Diabetes education, flu shots... thank god for Outlook and e-mail.
We have to plan a lot more when we leave the house - juice - check; glucose gel - check; blood sugar monitor - check; snack - check; etc. I think I need to keep a small bag packed with his stuff and teach him to take it everythime he leaves the house.
Then there's the paper...I am buried in paper related to managing his diabetes. There are all of the carbohydrates counting sheets...one for breakfast foods, one for halloween candy, one for birthday parties (cake with icing has a lot of carbs!!!!); the ever changing instructions from his care team; the spreadsheet that we track his bloodsugar with (we have this on-line of course as well); the manuals and instructions for the blood sugar monitors; the reference info that the hospital sent as well as the info from the JDRF; all of the prescription refill info....I could go on, and on and on...
I spent an hour today organizing my son's blood sugar information to send to his nurse. We have almost all of his info on one of his blood sugar monitors (the Onetouch) but he gets tested at school as well. The school nurse e-mails us the info on most days. it needs to be included in his tracking chart. Fortunately, she uses e-mail and can open an excel file. We tried the software that came with the monitor... it crashed a few times when Marc tried to install it... I guess he'll be sending J&J a little note :-)
I want this all to be on-line. It should be. Marc is playing around with a sharepoint site for the family just so we have a place that we can share the blood sugar spreadsheet that we are using... I want to be able to give our care team and the school nurse access so that they can see his blood sugars. I hope we can make this work.
Weight Watchers with Needles...Jean-Paul's stay at the hospital was fairly undramatic. He hung out in his room or the playroom. Nurses popped in and out as well as the mass of attending physicians, fellows, senior residents, residents and medical students that are part of the day to day of teaching hospital.
The drill with diabetes type 1 patients is that you need to stay in the hospital for 4 days give or take so that the care team can establish that the patient (if they are old enough) and the parent/care giver understand the principles of nutrition for diabetics, can give an insulin shot, test the blood and know what to do in case of an emergency. CHOP has a training program in place... a handful of training modules that are taught by nurses as well as a meeting with a nutritionist and some support by a social worker. It is a lot to learn in short period of time.
The simplest way to describe the whole diabetes management concept is well 'Weight Watchers with Needles'. It isn't that the diet is restrictive... it just requires that you measure/understand how many carbohydrates are consumed and keep that within a range. The insulin is dosed based on the carbs. Jean-Paul immediately started calling the carb grams 'points'. The focus is on counting carbs as they are most readily turned to sugars and require the insulin to be absorbed by the body. It is easiest to create a routine for eating... fixed times and fixed amounts of carbs. As we get more proficient in managing the diabetes, it is possible to make more adhoc adjustments to the insulin dosages. That's why lots of diabetics end up with insulin pumps... it makes it easier to eat what you want when you want and not have to give yourself a shot everytime you eat. For now though, we follow a routine.
Jean-Paul did well with the routine...he always likes routines and schedules. :-) Lucky for us. Right off the bat he understood no food without a blood sugar test. He also understood that he got a certain number of 'points' for his meal or snack and only certain foods got points. Since he is a big carb eater...he was motivated to understand how the system worked.
October 11 Are you prepared?Are you prepared?
Marc and I found that one of the key reasons why we had a bad experience with our au-pair was that we were not prepared. But was does being prepared mean.
1- The basics: The au-pair is not an overnight houseguest. They are staying at your home for a year. They are taking care of your children. They will need their own space. Also, if they are happy where they live and are comfortable, they will be happier and in theory take better care of your kids. a. Do you have a nice room for the au-pair with a comfortable bed, possibly a TV with cable or a DVD player. Space to store their clothes. b. How about a private bathroom? Is the entire family sharing one bathroom? c. Reasonable transportation – if you live in an area where it isn’t possible to walk from place to place or take public transportation, are you prepared to let the au-pair use your car on a regular basis? d. Reasonable access to education? Where can the au-pair take classes?
2- Realistic expectations… a. The au-pair is not a maid or housekeeper. They’re duties are limited to the children. b. Their hours are capped at 45 hours per week. c. They are not responsible for running your household.
3- Realistic house rules: Au-pairs are young adults. They are not your children and they will want a level of freedom and flexibility. If you expect everyone to be at home in bed by 9:00 every night or expect your house to be kept impeccably neat at all times, you might find it tough to have another person in the house. On the flip side, a house without any rules can pose challenges as well. We found that we were too laid back about rules in the beginning of our relationship with our au-pair. We started to feel that au-pair was taking things fro granted such as access to our cars and not taking care of our house in reasonable manner. When this happened, since we hadn’t established rules in the beginning, we found it difficult to make changes. Some of the things we felt we needed to think about were: a. Disciplining of the children b. Use of the car c. Use of the phone and internet d. Housekeeping e. House guests f. Curfews g. Confidentiality
4- Some sense of order and routine: as a host family, you will need to articulate (most likely in writing) how your household functions. Marc and I found that since we had a very established routine with the kids in regards to their weekdays (getting them ready for school, playtime, TV time and bedtime) that it was easy enough for us to get the au-pair to follow along.
IntroductionI originally started this blog to capture some of the information I had about collected about 2 completely unrelated topics.... some of the interior design projects I had going on in my home and also experiences we had with the au pair program. The design bit is just a personal interest of mine...ok, that is an understatement. I studied industrial design in college and It is also how I make my living... I am a software user experience architect and general manager for Resolute Solutions Corporation. A software user experience architect is kind of a complex job title for something so focused on simplicity. In short, I make software and technology easy to use. Enough said. Before Resolute, I also worked for Microsoft for over a decade and a number of other places along the way. My current project is in health care, specifically consumer facing personal health records. I would say it is one of the most fascinating design problems I have ever encountered. Right now I don't know if I will blog about user experience too much, but if you have a question, fire away. I am always happy to answer. We bought a cool house in Philadelphia built in 1928 or there abouts and it has needed work. It has been interesting making the design decisions and trying to make the house reflect my love of modern furnishings and still work with great bones of this Normandy style stone house. I wanted to spend some time sharing my experiences and resources as fin ding good modern furnishings and resources can sometimes be a hassle. I also wanted to share my experiences with the au pair program. My husband and I both work and we need to travel occasionally for our jobs. We needed some additional childcare and pursued the option of an au pair. our first experience with the au pair program taught us a lot... enough that I thought I should share at least some of what we learned with other working parents. You will see a few postings from early this year about Things have changed so much in just a few months... My son was diagnosed with type 1 diabetes last week. What a shock. I started blogging to organize some of my thoughts around the whole experience. My husband and I are learning so much so quickly about the disease, the treatments, the hope for a cure. If you find yourself where we are or have been where we are, I am looking forward to hearing from you. I'm glad you're here but I never want to see you...When we moved to Philadelphia from our 2 year stint in the UK, I was really impressed by the number of universities and large medical facilities in the area. I was glad to know that we had a major children's hospital in the city. Of course, I never wanted to have to need it. Well, need it we did.
Jean-Paul was checked in to the emergency room at CHOP and they began running tests. He got an IV line so that they could give him some fluids as he was a little dehydrated. They were pretty quick to confirm the diagnosis and give him his first dose of insulin. Diabetes is one of those things that is pretty straight forward ot diagnose. Not a lot of guessing involved. more on this later...
The rest of the emergency room stay was focused on determining if the ketones in his blood had reached a dangrous level...something called ketoacidosis. An involved explanation can be found here : http://www.isletsofhope.com/diabetes/complications/diabetic_ketoacidosis_dka_1.html. In short, when the body can't produce enough insulin to utilize sugars/carbohydrates from foods, it begins to digest body fat and muscles. The output of this is ketones. When they build up they can cause a life threatening condition called diabetic ketoacidosis (DKA). (makes you think twice about ever going on the atkins diet??) If this had happened Jean-Paul would have needed an Insulin drip. Fortunately, it wasn't the case.
As far as the Jean-Paul was concerned, he was doing fine. No hysterics, lots of questions. He heard they had TVs with Playstations and was mostly focused on getting the nurses to find one for him while he was waiting for a room upstairs (also with TVs and playstations...he was told). Since Marc and I have always been pretty restrictive about TV watching and Jean_Paul doens't have any video games at home, he could put up with a few needles and some orange jello that wasn't too tasty for a few days of unlimited TV and games.
We had a great LPN who answered our questions. She had 2 daughters with type 1 diabetes and made us feel like everything would be ok... different but OK. |
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