D-day/week was an incredibly sad and stressful time full of horribleness, but at the same time one of the most wonderful things in the last 8 months happened - we met our D-team.
The doctor who delivered the news to us in those early morning hours became Jonathan's paediatrician. Admittedly not an endocrinologist but works directly with a few, she is one of the most well respected diabetes-focused paediatricians in the area, very knowledgeable and experienced in paediatric Type 1 Diabetes cases. Jonathan absolutely loves her and despite a hefty case-load, she always takes the time to review anything we need to and help mentor us in our care of Jonathan. During our stay at the hospital, she was in to see us every day, sometimes several times a day. I walked the halls at all hours and more often than not she was there, to the point that I was starting to wonder if she lived there. He was discharged just before a holiday weekend when the clinic would be closed for 3 days, so she gave us a number where she could be paged.
There are three RNs in the clinic that are all immeasurably valuable. M is a Certified Diabetes Educator and was the one who started us on our in-hospital crash-course and the one that I ultimately look to, to vet any changes or advice that I'm not 100% sure of. D1 and D2 (no pun or joke indented, but both their initials are D, so… I'm goin' with it in the order that I met them) are my other two go-to gals.
My weekly calls are usually with D2 who is also a CDE. We review Jonathan's numbers from the last week or so, discuss my analysis and what I plan to do, and she helps by looking for causes of out-of-range numbers, offering suggestions for improved management, and finally we agree on dose changes if any. D1 was also involved in our initial classes at the hospital with M, in fact she was the first person I ever put a needle into (BRAVE WOMAN!). Now, I don't know if she was just trying to be nice or not, but after I removed the needle on a silent 10 count she told me to go for it as if I hadn't even inserted it yet. Yes, she let me stick a needle in her... Now that's going the extra mile!
I'm on the phone with D2, D1 or M at usually once a week, even if it's just for a quick chat about the status quo, or if need be we've talked for upwards of 45 minutes going over any number of D related topics (I monopolize way to much of their time, but they are so great about it. They always make me feel like I'm the most important call of the day).
We now visit quarterly for an A1c check, weight, height and blood-pressure checks, and a review with Doctor. This is regular maintenance. If the need were to arise, we would still follow normal protocol in response to situational urgency: appointment with doctor at her office, visit to clinic, or trip to ER, whatever the circumstances dictate.
Jonathan had barely finished his first post-diagnosis meal when we were first visited by a dietician. She spent a lot of time with us reviewing how to read nutritional labels, gauge fresh food's size to estimate carbs, how to use the national food guide, assembling healthy well-balanced meals (that all kids should have), and how to add up all those carbs and subtract the fibre so that we can have the food side of the insulin ratio figured out. She was also the one that turned us on to the Salter scale that we love so much. From time to time, as we have questions about food and how what we put in his mouth is metabolized, we call her to get help figuring out why some of the "wonky" things that happen come up. Guess what - she a CDE on top of being a Registered Dietician.
In addition to the medical team, we also have access to other support areas. A social worker visited us during our first week to discuss financial support opportunities (we have insurance so this didn't really apply), government grants/tax credits, etc. and I touched base with her a few times while I was getting some of those set up. For Jonathan, a Children's Life Services team member came in to talk with him, have some play time, and also do some children's level Diabetes education. When we visit the clinic, Jonathan still has access to the supervised play area (if our appointment is within the hours of operation). He enjoys visiting the clinic and looks forward to everything from the magic stairs (escalator), visiting with the clinic team, having Doctor check him out, and chillin' in the play area. The team even initiated contact with other organizations outside of the hospital for us.
From my point of view, diabetes management is a team effort. The team may change over the years and the level of interaction between the home team* and others may fluctuate, but it's not, and never will be, a one person show. I could not imagine life without this team. I'd probably be back at the hospital, in the mental ward. Although we've learned a lot, and are now fairly self sufficient with managing the D ourselves, there is so much reassurance and comfort that comes with having this awesome team of professionals by our side through all of this. I am eternally grateful to them and I could never thank them enough for all they do to help keep Jonathan a healthy, safe and happy 4 year old kid - because first and foremost, that's what he is; he just happens to have Diabetes.
*Home team: There are a few other key individuals on the team who I did not write about today. Mom and sister also have important roles in this. I have pretty much assumed the lead on this and manage most of the planning, communication and dosing, but my wife also takes an active role, in fact she administers more injections than I do, she flies solo when I have to travel and she does more of the meal planning. Our daughter is one of Jonathan's big supporters too. She tries to comfort him when he's weary of the pokes and shots, and she does her best to understand the impact that this has on all of us and be a team player. You can also read about two other key team members in my April 25th post.
We are incredibly lucky and truly blessed to have such a great team!
The doctor who delivered the news to us in those early morning hours became Jonathan's paediatrician. Admittedly not an endocrinologist but works directly with a few, she is one of the most well respected diabetes-focused paediatricians in the area, very knowledgeable and experienced in paediatric Type 1 Diabetes cases. Jonathan absolutely loves her and despite a hefty case-load, she always takes the time to review anything we need to and help mentor us in our care of Jonathan. During our stay at the hospital, she was in to see us every day, sometimes several times a day. I walked the halls at all hours and more often than not she was there, to the point that I was starting to wonder if she lived there. He was discharged just before a holiday weekend when the clinic would be closed for 3 days, so she gave us a number where she could be paged.
There are three RNs in the clinic that are all immeasurably valuable. M is a Certified Diabetes Educator and was the one who started us on our in-hospital crash-course and the one that I ultimately look to, to vet any changes or advice that I'm not 100% sure of. D1 and D2 (no pun or joke indented, but both their initials are D, so… I'm goin' with it in the order that I met them) are my other two go-to gals.
My weekly calls are usually with D2 who is also a CDE. We review Jonathan's numbers from the last week or so, discuss my analysis and what I plan to do, and she helps by looking for causes of out-of-range numbers, offering suggestions for improved management, and finally we agree on dose changes if any. D1 was also involved in our initial classes at the hospital with M, in fact she was the first person I ever put a needle into (BRAVE WOMAN!). Now, I don't know if she was just trying to be nice or not, but after I removed the needle on a silent 10 count she told me to go for it as if I hadn't even inserted it yet. Yes, she let me stick a needle in her... Now that's going the extra mile!
I'm on the phone with D2, D1 or M at usually once a week, even if it's just for a quick chat about the status quo, or if need be we've talked for upwards of 45 minutes going over any number of D related topics (I monopolize way to much of their time, but they are so great about it. They always make me feel like I'm the most important call of the day).
We now visit quarterly for an A1c check, weight, height and blood-pressure checks, and a review with Doctor. This is regular maintenance. If the need were to arise, we would still follow normal protocol in response to situational urgency: appointment with doctor at her office, visit to clinic, or trip to ER, whatever the circumstances dictate.
Jonathan had barely finished his first post-diagnosis meal when we were first visited by a dietician. She spent a lot of time with us reviewing how to read nutritional labels, gauge fresh food's size to estimate carbs, how to use the national food guide, assembling healthy well-balanced meals (that all kids should have), and how to add up all those carbs and subtract the fibre so that we can have the food side of the insulin ratio figured out. She was also the one that turned us on to the Salter scale that we love so much. From time to time, as we have questions about food and how what we put in his mouth is metabolized, we call her to get help figuring out why some of the "wonky" things that happen come up. Guess what - she a CDE on top of being a Registered Dietician.
In addition to the medical team, we also have access to other support areas. A social worker visited us during our first week to discuss financial support opportunities (we have insurance so this didn't really apply), government grants/tax credits, etc. and I touched base with her a few times while I was getting some of those set up. For Jonathan, a Children's Life Services team member came in to talk with him, have some play time, and also do some children's level Diabetes education. When we visit the clinic, Jonathan still has access to the supervised play area (if our appointment is within the hours of operation). He enjoys visiting the clinic and looks forward to everything from the magic stairs (escalator), visiting with the clinic team, having Doctor check him out, and chillin' in the play area. The team even initiated contact with other organizations outside of the hospital for us.
From my point of view, diabetes management is a team effort. The team may change over the years and the level of interaction between the home team* and others may fluctuate, but it's not, and never will be, a one person show. I could not imagine life without this team. I'd probably be back at the hospital, in the mental ward. Although we've learned a lot, and are now fairly self sufficient with managing the D ourselves, there is so much reassurance and comfort that comes with having this awesome team of professionals by our side through all of this. I am eternally grateful to them and I could never thank them enough for all they do to help keep Jonathan a healthy, safe and happy 4 year old kid - because first and foremost, that's what he is; he just happens to have Diabetes.
*Home team: There are a few other key individuals on the team who I did not write about today. Mom and sister also have important roles in this. I have pretty much assumed the lead on this and manage most of the planning, communication and dosing, but my wife also takes an active role, in fact she administers more injections than I do, she flies solo when I have to travel and she does more of the meal planning. Our daughter is one of Jonathan's big supporters too. She tries to comfort him when he's weary of the pokes and shots, and she does her best to understand the impact that this has on all of us and be a team player. You can also read about two other key team members in my April 25th post.
We are incredibly lucky and truly blessed to have such a great team!
A great D Team is such a blessing to families who are faced with type 1 diabetes. I feel like my daughters are so lucky because our team is incredible :) I don't know what I would do if I didn't have such amazing and caring people guiding us through this journey.
ReplyDeleteI am so happy for you and your son that he has such great support!
I feel the same about our D-Team...they have gotten us through some rough times over the years. I especially remember those first few months when the nurses were our life-line.
ReplyDeleteHey, BTW, I like the "title" over the blogs you follow "More From The Club That No One Wanted To Join"...so true and kinda funny.
Have a great day friend!
Gotta love a good team! I'm thankful to be working with the same pedi endo for the last 12 years. She learned from the best and she KNOWS us.
ReplyDelete