Posts Tagged ‘Memorial’

Type 1 Diabetes–Our Lives have Changed Forever!

I chose today November  14th to relaunch this blog with this post. Today is World Diabetes Awareness Day and  November is Diabetes Awareness Month! Not being affected in the past we never really paid attention to things like that. Well everything has changed! Many people know that our son, Jaxin was diagnosed with Type 1 Diabetes after going DKA (Diabetic ketoacidosis) one night while we were on a Hawaiian family holiday and now we as a family and more importantly Jaxin, have to live with this fact for the rest of our lives! Something we were told at the Alberta Children’s Hospital Diabetes Clinic during our first couple of visits that has stuck with me since. We were told that we were now ambassadors for diabetes! As my wife Cindra put it in a Facebook post earlier today, “Jaxin didn’t choose to be an ambassador for T1D, it chose him!”

Over the last 5 months we have been learning about the disease that has affected out son. We have found that a lot of people don’t know a lot about Diabetes or are have the wrong information. We have been keeping notes since Jaxin’s diagnosis and asked him if he was ok with us writing about and sharing both the ups and downs of what he and we have been going through! He has agreed to let us do that.

I have written about the original diagnosis on one of my other blog sites but here is what happened to us in May 2013.

The Diagnosis

We had arrived in Kauai on Thursday, May 16th and had planned on being there until the Friday the 25th. We were there as a family group, my parents, my 3 sisters and their kids and our kids Breanna and Jaxin, to celebrate my parents 50th Anniversary!

After we got there Jaxin just didn’t seem to be himself. He had lost a lot of weight recently which we figured was due to a 3 inch growth spurt since Christmas and he seemed a little tired. Again the tiredness could be explained as he is not a fan of school and in particular last year had issues with one teacher and often was stressed and unable to sleep the night before.  The first Saturday he wasn’t feeling very well but wasn’t too far from his normal self except he seemed a little lethargic. Sunday we had a surf lesson booked for the kids but  Jaxin wasn’t feeling well and we assumed he had just gotten something at school prior to leaving. He stayed back at the condo with my wife and I went out with the kids. When we returned he felt a little better but not a lot. He complained of nausea and a headache. I had ended up falling asleep at around 8:30 PM after getting up for a sunrise photo shoot that morning and being active all day. I guess the kids went to the hot tub at around 9PM and coming back Jaxin felt very light headed and disoriented. He complained of stomach pains that were getting more severe. As the night progressed he started having more pain and then around midnight started having difficulties breathing. Cindra was sitting with him the whole time. At about 1 AM he started to throw up and it didn’t stop. At 3 AM Cin woke me up saying she was really worried so we decided to take him from Princeville to Lihue (about a 40 minute drive) to the hospital.

We left a note for my parents and woke up Breanna and told her we were going and were on our way by 3:15 AM. Jaxin was starting to really moan in pain and was struggling to breath he continued to throw up in the car. I was sticking fairly close to the speed limit at first but as we drove as he moaned more in more with the pain and my foot got a little heavier on the accelerator! I was actually hoping to be pulled over thinking I might be able to get an escort to the hospital! All the way there I was thinking appendicitis! About 3/4 of the way there Jaxin piped up with “how could we not be there yet!” which gave us a little chuckle but also had me driving a little faster.

We arrived at the Wilcox Memorial Hospital Emergency room in Lihue at about 3:45 and I dropped Cindra and Jaxin off at the door. I parked the car and came into the ER. By then Jaxin was already in a bed and being hooked up to a variety of monitors. The ER doctor came in asked a few questions looked at him and shrugged his shoulders. That really instilled some confidence in us! We were then told us they were sending him for a CT scan of his abdomen.  I went out and called my travel insurance company and came back to the ER. While I was sitting in the room waiting for Jax and Cin to come back from the scan, I heard the Dr. and the nurse saying that this now made sense. I went to the nurse’s station where I was asked if there was a history of Diabetes in our families. I said no and was told that Jaxin was in DKA with extremely high blood sugar levels. He could be treated and the disease could be managed but he had to be medevac’d to the paediatric intensive care unit at the children’s hospital on Oahu! By 4:45 AM we were advised that they were getting the transfer team and aircraft together on Oahu and the doctor in the Lihue ER was on the phone with the on call endocrinologist in Oahu. An insulin drip was started and they kept testing his blood sugars which slowly started coming down but still remained high!

My parents brought Breanna down from Princeville at around 6:30AM and we all sat with Jax for a bit. The transfer team arrived around 6:45 – 7:00 AM and started prepping Jaxin for the flight to Oahu. By 8 AM he and Cindra were in an ambulance on the way to the Lihue Airport. By 9:00 AM he was in the Pediatric ICU at the Kapiolani Medical Center in Oahu!

Needless to say from Monday until they flew back to Kauai I spent most of my vacation on my cell phone or on my laptop at the condo texting Cindra to get status updates and to find out more. Once the diagnosis was made, Cindra and I decided that Bre and I would stay in Kauai with the rest of the family and go ahead with the renewal ceremony for my parents (yes it was that day) and the planned family dinners to try and have a normal vacation. Yeah right!

I have to say I was relieved with the final diagnosis. During the ordeal I was trying not to think about what it could be. When it was confirmed that it was Type 1 Diabetes I was kind of relieved because I was afraid it was something much worse. Although I knew a little about diabetes prior to this, I did know that it could be managed and that most of people go on to have normal lives after diagnosis with proper control and management!

Jaxin and Cindra spent 2 days in the PICU unit in Oahu where Jaxin stabilized fairly quickly and was diagnosed with Type 1 or Juvenile Diabetes. Cindra was finally able to head out on late Tuesday afternoon (after a lot of persuading) and grab some clothes and basic supplies for both Jaxin and herself. I told her that the best time to go was while he was in the PICU and under constant monitoring. I understand that she didn’t want to leave her baby’s side! They had been airlifted with just what we went to the hospital with and Jaxin only had the hospital gown from the ER as clothes. As she came back from her shopping trip Jaxin was being moved from PICU to a regular ward. They then spent another day and night in a regular room and we had them flown back to Kauai on Thursday morning.

While in the hospital Cindra was taught most of what she had to know to deal with Jaxin’s diabetes, from counting carbs in food and adjusting insulin doses, to how to give the shots and deal with highs and lows. She also had to make arrangements and get the prescriptions filled to get us all home. We needed rapid acting insulin, long acting insulin. a meter, test strips, glucagon kit, test solutions, an ice pack to keep everything cold, needle tips and the list went on! They wouldn’t be released from hospital until Thursday because being island visitors, Jaxin didn’t have a family doctor he could see right after being released. While Jaxin was in the hospital he got to meet Tucker the hospital dog who sat on his bed for a while. He was even lucky enough to get a Tucker stuffed animal which apparently is not all that common!

One thing that has been stressed to us as parents both to Cindra in the hospital in Honolulu and also back in Calgary at the Diabetes Clinic is the fact that there is nothing we could have done to prevent this! It had nothing to do with diet or lifestyle or anything else. This was going to happen at some point regardless! We cannot blame ourselves or shouldn’t feel guilty about it at all!

A big thank you to all the Doctors and Nurses we dealt with at both Wilcox Memorial Hospital in Lihue and Kapiolani Health Center for Women and Children on Oahu including the transfer team! The care was excellent from start to finish!

Bre and I, as well as a couple of Jaxin’s cousins met them at the Lihue Airport when they arrived back in Kauai on Thursday morning (First Class were the only seats available). Jaxin looked a lot better than when he had left and we all had a good family hug!

Also a lesson to be learned, do not travel without some sort of travel health insurance! I have been paying a small monthly fee for New Horizon’s Travel insurance for about 20 years now and have never needed it until now! I really have to thank the staff at Global Excel Insurance! We had very little that we had to worry about financially, we had signed some forms at the hospitals that were faxed back to the insurance company and the only thing we had to pay there was for the insulin and supplies we needed to get back home with, the return flight to Kauai so that they could catch our flight back to Calgary and a few clothes and toiletries to come back from Honolulu with.

Cin and I talked a little on the return and I asked about how Jaxin was feeling and his reactions after being diagnosed. He was truly devastated! For a 12 year old boy this one of the worst things that could have happened to him! No longer could he eat anything he wanted any time! He now had to test himself every time he wanted to eat virtually anything and then calculate the carbs and get an inulin injection. He thought about Halloween and other holidays as well. We tried to assure him that yes things had changed but at least we had control over it.

While this has changed all of our lives, today Jaxin is doing well and is coping with it like a hero and we are managing his diabetes and trying to help him have as close to normal of a lifestyle as possible. There are a couple of things we are doing and will be posting about that later! While from time to time he still gets really upset about it, to me he seems very strong about it. I think he is doing an outstanding job after what has happened to him.

I am including a gallery of a few images that Cindra took with her phone during the ordeal. I didn’t happen to have a camera with me other than my phone and I wasn’t really thinking about taking pictures.  Very few people have seen these photos and I am posting with Jaxin’s consent!

I will continue to update this blog with other posts from the notes we have been keeping since this all started! Maybe something we learned can help others maybe not. We still have a lot to learn ourselves about T1D and are far from being experts.

Keep watching for additional notes and posts here!