Thanks for sticking with my long winded story about Eldest spending four days in the PICU and Children’s hospital. Ironically he is the only one that has been hospitalized now TWICE!
So we are waiting around on day three of our hospital stay to get transferred out of the PICU and onto the 3rd floor regular wing. Eldest did not have quite the appetite that they wanted him to have so we were waiting and biding our time until he was well enough to be transferred. His blood glucose numbers were not quite regulating the way they had wanted. We had been giving him some insulin at this point and checked his fingers a few times as well.
His first official meal was ordered BEFORE I arrived at the hospital. I looked at it in surprise: personal pizza, grapes, and carrots! Okay for a kid that had not eaten in over 3 days I was not a happy camper! He was throwing up the last day he remembered at home. Why on earth would they let him order a pizza? I looked at the dried out carrots and inspect the slightly shriveled grapes. I then inspect them further and find one with mold on it! I WAS LIVID!!
I tell my husband I will be back. I walk down the hall to a quiet lounge and call a total stranger who gave me her cell number via Facebook stating she was an ER Physician and to call if I had any questions or problems. Boy howdy did this mom need someone to turn to. She answered right away and asks how things are going and I lose it! I cannot hold the tears back- mostly from frustration. She tells me to ask for the Nurse Manager and share my complaints with her. She agrees with me that that meal wasn’t a very good choice and that the quality should have been better.
I calmly walk back to the Nurse Station and ask for the Nurse Manager. She is in the room within minutes. I voice my concerns about the food and a few other issues. She listens and takes action. I feel better about ordering soup, crackers, and pudding for him to try instead of harsh pizza. Once the food hurdle was overcome that was a really big relief.
We had scheduled everyone to come early in the day so we would be sure to have the afternoon free. I had decided that since all the education had been completed that Riley would go home for a few hours, get a shower, and see the other kids. Of course shortly after Dad leaves the doctors decide he is ready to be moved to the 3rd floor. The nurse brings me a cart which I fill with all of the items we brought or had gotten since we had been there.
Eldest finally is able to use the toilet, which we loving referred to the James Bond Toilet (since it was hidden under the sink!) and stands for the first time in 3 days! What an accomplishment. We realize celebrating the small victories along the way is what life is all about.
We heard from a few different hospital staff that being in the hospital the week before Christmas was really the best time of year to be there. A few of our friend’s stopped by between the nurse and doctor visits. We were assigned to the same Endocrinologist as one of the visitor’s who assured us the Endo was very nice.
Santa Claus brought teddy bear’s to the patients and we even got an instant picture from his helper. A group of people came around with a basket of socks for Fun Socks Monday. A nurse I went to college with brought a small goodie bag with coloring book and glow bracelets. A group of teen from a local high school stopped by and gave Eldest a Lego set. A local Fire Department stopped by right before discharge and he got a gift bag of goodies.
The Endocrinologist on duty was very shocked that his Ketone’s were still present later in the afternoon. The 3rd floor nursing staff were not in constantly like PICU which was a relief at first and then became a problem. After 3pm in the afternoon we seemed to be forgotten. His dinner wasn’t ordered on time. The nurse mentioned changing his urinal in case the Ketone’s were left from earlier. We both looked at each other and were a little peeved that it wasn’t mentioned earlier in the day since this was what was holding up his discharge. They had gone down and went negative and then shown back up as trace. We were asked if we felt comfortable monitoring his Ketone’s at home and we said, YES!
I went ahead and gathered as much stuff as I could and headed home once we had the word he was being discharged. I assumed Riley and Eldest would be right behind me by about 15 minutes or so. OH, not true! The nurse brought my husband the cart to fill with the stuff I couldn’t carry and then disappeared for 30 minutes. She came back and was surprised to see they were still in the room. My husband was very puzzled and asked if he could have a wheelchair! My son hadn’t really walked over the last 4 days but the hospital was going to discharge him directly from the room and have him WALK OUT OF THE HOSPITAL! Boy are they lucky this tired mama was already home. (I am still waiting on the hospital evaluation to share my opinions!) A nurse’s aid came and helped them get to the hospital exit.
He has been home for 2 weeks now and doing quite well all things considered. Keep an eye out for future posts about diabetes resources, carb counting, A Day in the Life of a Type 1 Diabetic, and Foods that have Hidden Carbs.
Here’s my best advice for all you moms and dads- TAKE CHARGE OF YOUR CHILD’S CARE. Seek answers to your questions right away. Don’t ever take things for face value AND if something doesn’t seem okay seek assistance or medical treatment right away!
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 3)
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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Just wanted to let you know that we’ve been praying for him since your text before Christmas. God bless you all, so happy he’s doing well.
Thanks. We appreciate all the prayers we can get.
Glenda Cates says
I would also have gone ballistic over the food and some other things that seemed to have happened. And I am sorry they didn’t get home sooner as I am sure you was worried and couldn’t settle down till they was in the house.
Nancy Johnson Horn says
Thanks for sharing your story. Sherryl Wilson had suggested I check out your son’s story. My 11 year old son was in DKA this week and in the PICU and was diagnosed with Type 1. We’re still very upset but we have to do whatever we can to manage our son’s Type 1 Diabetes.