Welcome back to Day 3 of our grueling adventure of discovering our oldest son has Type 1 Diabetes. He was settled into the PICU for 3 days for the critical care and round the clock monitoring to get his levels regulated. His blood sugar levels were off the charts, meaning a regular blood glucose meter could not take an accurate reading. This resulted in hourly blood work done by the lab tech until his BG was under 350. He had various IV fluids due to severe dehydration and his potassium, sodium, etc were not right. We got very little sleep with the nurse in his room almost constantly for the first 3-4 hours checking vitals, measuring urine output, checking on the alarms that seemed to go off quite frequently, etc. This was quite nerve-racking to be within five feet of your child and NOT really be able to do anything for him. Just hold his hand during labs and be sure he knew we were there although he was sedated to help keep all the tubes and lines in place.
He made a very quick recovery for his breathing and was able to get off the dopa-mine drip and be extubated within 12 hours of being intubated. This was a very good thing and took one less worry off our minds. Chest x-ray and CT scans all came back normal which was another praise. The nurse let labs do his BG levels instead of finger pricks and labs for some of the time the first day which helped him have less pricks but he still began to look like a pincushion. We were barely awake on the first full day of being in the hospital when we started to get bombarded with docs and specialists. We were told the dietitian would talk to us, a Diabetes Team nurse would train us and that the Endocrinologist would speak with us the next day. Remember he had not been previously diagnosed with Diabetes and we were totally new to the whole Type 1 Diabetes thing. No one had specifically said officially at this point that his diagnosis was Diabetes but that they were proceeding like it was. Hubby and I weren’t convinced it was Diabetes and were not going to go on assumptions until we were officially told which we pressed on 12/15/14.
I had decided that I should go home early evening to be with the younger three while Riley stayed the night. My parents brought Lil’ Red to the hospital to nurse and bring us some drinks and snacks. I keep a manual Medela breastpump in the van at all times which came in handy. I nursed at the 1st ER, pumped a little at 2nd ER and had to pump some more once in PICU. Once Lil’ Red arrived, he was ready to nurse and I was so full he puked up all the breastmilk all over me and the couch I was sitting in. That made the decision to go home for me. My parents drove me home which was good since I had not had enough sleep to drive by myself at this point. I got a shower and ate. I tried to get some sleep before my mother-in-law came over with the other kids. Once she came over I went back to the hospital for 2-3 hours before driving home for the night.
Behind the Scenes: I had to line up care for the younger 3 children each day so I could go back to the hospital. I also called another homeschool mama friend to request that meals be delivered for dinner so I didn’t have to worry about my family being feed throughout the week. Both were a great blessing, but stressful at the same time.
I went back to the hospital later that afternoon driving my hubby’s car. This way no parent was left at the hospital without transportation just in case. I stayed a few hours longer then planned but was able to return home before bedtime. I snuggled three kids in my bed that night being thankful that hubby had sick days he could use and stay with Eldest without losing pay.
Monday and Tuesday blur together with visits from Dietitian, Diabetes Team Nurse educator, Endocrinologist, PICU Doc, Residents, Social Worker, Billing, and Diabetes Team Psychologist. Some we only met with once others was numerous times throughout that 48 hour period.
The Dietitian shared with us all about carbohydrate counting and how to measure out food. She grilled us on what had carbs and what did not. She explained what could be 15g and 30g snacks that would be needed to have on hand for low blood sugars or for between meals. She showed us a chart of “free” snacks that contain little to no carbs and could be eaten more frequently without blood sugar elevations.
The Diabetes Team Nurse really invested in our 3-day education because she had to be sure we knew how to check blood glucose levels, how to figure out carbs to insulin ratio, how to use a syringe to draw up insulin, how to correct highs or lows, how to use an insulin pen,etc. The list goes on and on but rest assured we passed all tests with flying colors. We got to practice some of these skills on the “fake skin” before giving ourselves a saline injection! Yes, that’s right, we had to give ourselves a shot. Boy are the needles so much smaller then they used to be. We were given instructions on how to use the Accu Chek Nano meter, Humalog insulin pen, and Fast Clix lancing device.
Trust me at times our heads were spinning. Sometimes from information overload and other times from sleep deprivation and lack of consistent meal times. Luckily I was not going through this whole ordeal alone. Riley was along for the ride right next to me. We learned these new care techniques together which will keep our son alive and healthy. Now that’s some empowering marriage training!
We listened in to the rounds that the care team made most mornings and started to understand some of the lingo like ketones, potassium and sodium levels.
Tune in to tomorrow to hear about visitor’s, presents, and getting released from the 3rd floor. Thank you for sticking with me as I write a 4 part post! I think being able to tell our story has been therapeutic for me and had to be done. Sorry for some of the rambling but I got distracted and have sat down over a dozen times to get these posts written!
Did you miss the other posts in this series? Check them out below:
12/13/14 The ER, DKA, and Diabetes Diagnosis (Part 1)
12/13/14 The ER, DKA, and Diabetes Diagnosis (Part 2)
12/13/14 The ER, DKA, and Diabetes Diagnosis (Part 4) FINALE
Other Type 1 Diabetes Posts:
How a Juice Box Saved my Type 1 Diabetic Son’s Life
6 to 1 Insulin Ratio, Puberty and Type 1 Diabetes
Type 1 Diabetes Rescue Boxes for Back to School
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Hi. I just discovered your blog through A Wise Woman Builds Her Home link up. What a harrowing week you had with your son’s Type I diagnosis. My 18 year old has been diabetic for nearly 7 years now, and we understand. It is quite a lifestyle adjustment. Jack diagnosed himself from a poster at my Endo’s office (I have a thyroid problem). We were blessed with only a 2 night stay on the third floor; no trips to PICU until he had a stomach virus and DKA over 18 months later. I am sorry to hear about your horrible experience in the hospital. The dietician screwed up Jack’s diet the first full day; fortunately the diabetic educator got it corrected. (They were using the old carb exchange method for the actual hospital stay; we were trained to count carbs for after. He was only allowed 1.5 carb exchanges for lunch… which didn’t even allow him a full sandwich at lunch. An 11 year old! )
I will keep your son and family in my prayers. Diabetes is a hard adjustment for a family, but it can become just a part of life after a while. Jack is doing very well now and though he is disappointed about career limitations from Diabetes, he has learned to live with it. We were blessed to be able to homeschool him through this time and monitor his diet and health closely. He attends a local career center (SC CTC) studying CADD now and is blessed by a fantastic school nurse.
Feel free to email me with any questions.
PS. I believe I recognize the Children’s Hospital from the pics. I work there in the NICU on the weekends as a nurse.
Diane,
Thanks for sharing your story. What a small world! We are just trying to get settled and still trying to figure out what a healthy meal should look like:(
Meal planning was the most stressful part at first. Unfortunately on the day Jack came home from the hospital, he developed a full blown nasty stomach virus (that later ravaged the rest of our house). He had picked it up in the ER. I was so focused on what to feed him, and he couldn’t even keep a mouthful of water down. The Endo we called was an absolute jerk; I asked him for a prescription for something to help Jack’s nausea and vomiting. His response was “what do you keep calling me for? why don’t you call your other doctor?” (I called him twice; once an hour into the vomiting; he encouraged us to keep doing what we were doing and a second time at 730 pm…. I remember the time because I knew the pharmacy in our neighborhood closed at 8pm.) Yeah, I was stressed.
Just feed him as you would normally feed your family a healthy meal. Protein source, vegetable, maybe a starchy side (like a potato, pasta, etc) and maybe a glass of milk. Plain meat doesn’t have carbs. The vegetables have very few carbs. The starchy sides are where the carbs are. We measure most everything. Jack often drinks a measured 2 cups of milk at dinner. We cook from scratch mostly as Jack also developed Celiac disease about 1 1/2 years into the Type I diagnosis.
Do you have an I Phone or smart phone? Maybe set timers for his meals/snacks. I actually made Jack’s meals and snacks and insulin a part of our “schedule”. It doesn’t have to be rigid, just a “he has to have his lunch insulin taken by 1pm” or check his sugar at 3 pm and have a snack. Put ordering supplies or checking on supplies on your calendar, too. One time Jack used his last vial of insulin but left the empty box in the refrigerator. He had enough insulin for breakfast, but not for lunch! Yikes. (The pharmacy at the hospital was helpful and had the refill ready before noon; I had to drag the kids to Dayton, though.)
We also discovered that when going out, we would pack a cooler with simple snacks. (fruit, popcorn, a sandwich, crackers and cheese sticks, nuts, etc.) All of the kids have their own reusable water bottle, too. Sure makes going out cheaper and it is comforting to have a snack available. Jack keeps a gf snack bar in his “diabetes bag” for when he has an urgent need for a snack.
Just a few ideas. I used the calorie/carb counting book a lot at first. There has to be an “app” available on smart phones for that now. It really will be easier as time passes, I promise. Teen years were a bit rough for Jack due to growing, hormones, and Celiac diagnosis, but he is definitely better now. Hang in there; lean on your spouse and the Lord.
Feel free to email me or send me a message on facebook.
Diane B.
Found your website through Oak+Oats linkup and read the whole story of your son’s diagnosis. I can’t imagine how scary that all must have been, and I pray that you are able to adjust quickly and easily. I’m a nurse at our local Children’s Hospital and it’s always eye opening and humbling to read the experience from the view of a parent so thank you for sharing your story.
Glad that I was able to share something useful even though you are a nurse. Still hard to comprehend at times but it’s just our new normal.
You both did wonderful and are so brave giving yourselves shots. But if it is what it takes to keep our children safe I would do the same thing.
I grew up having to get allergy shots and had such a fear of needle till my 4th pregnancy when I actually got a blood draw done once without holding hubby’s hand,lol. The needles are the tiniest they have which makes it a little easier.