A mother’s intuition is very rarely wrong.
When you have little ones you tend to know your kids better than they even know themselves. Payton has always been a high energy, reason why this momma needs coffee, kind of kid. She is always full of life and energy and since the day she turned 2 has never willingly taken another nap. Little did we know that Payton’s journey to type one diabetes had already begun and we didn’t even realize something was wrong.
Friday July 7th, 2017
On Friday we had been starting our days off pretty early, a lot earlier than usual. We had some unforeseen car problems are were limited to just one car. Life with one car is not easy when you have a husband who works 24 hours shifts as a fireman and has a second job on his off days. So when Payton randomly took a nap that day around 11am I didn’t think to much of it. Later that day we left to go pick up daddy and she slept almost the whole car ride. This is not an everyday thing for her so we just figured she must be getting a summer cold or a little bug of some sort. Later that night after she had been put to bed she came back out five or six more times letting us know that she had to go to the bathroom. We figured after the first two times she was probably just bored and wanted to see what we were up to. After three or four times we started getting upset and told her she couldn’t keep water next to her bed anymore because no one has to use the bathroom as much as she was. Little did we know this was just the beginning.
Saturday July 8th
It was a very relaxed Saturday. We watched quite a few movies on the couch together because it had been raining and daddy was at work so, why not? Later that evening Payton began to start acting very strange, almost grim reaper spooky. She began following me around the house while I put laundry away and washed dishes and just standing there with her eyes half open. Finally she admitted to being tired and I put her to bed. Little did I know it would be the last night I’d get a good peaceful nights sleep for a long time.
Sunday July 9th
A day that will forever be carved into my brain. The day that no matter how much time passes will always bring tears to my eyes and break my heart. A day that has played over and over in my head. The day that our whole world was turned upside-down and our lives would be changed forever. Sunday morning I woke up and started my morning the way that I have for as long as I can remember. I started getting ready for church while listening to worship music and once I was finished getting ready I started waking the kids up. Payton, for a lack of better words was a 16 year old trapped in a 5 year olds body. Waking her up in the mornings is no easy task. Once she is out of the bed she’s all sunshine and rainbows but you must first get her out of her slumbering coma. This particular Sunday morning she got right out of bed, brushed her teeth, put her clothes on, and then came to my room so that I could fix her hair. When she walked into my room it was like I was looking at someone else child. My beautiful little girl looked like a skeleton and was white as a ghost. I can not explain the feeling that I got from seeing her but can only express that I knew in my gut that something was very wrong. She looked malnourished and her knees almost looked like she had some kind of joint problem. There was no light in her eyes and she had no energy at all. She could barely hold her eyes open. She was just walking around with them slightly cracked open and if you would ask her if she was ok she would just reply with “I’m fine”. By the time we were at the church I was completely consumed with thoughts that I would rather not repeat about what could possibly be wrong with my sweet baby. Talking with friends they also could see that something was very off about Payton. Everyone began to watch her very closely and was equally worried about her. I am not the type of person to just run to the doctors office for every little sniffle or slight fever but at this point I wasn’t even willing to wait for Monday I wanted to bring her to the ER right away. Cole thought that she just looked tired and was more than likely just dehydrated. I mean it was July in south Louisiana. So we went on with the morning and it was pretty difficult for me. I had to lead worship without crying as my mommy worries began to flood my mind as I watched my 5 year old little girl just lay on the front row as we moved forward in our worship service. She just laid there, quiet throughout worship and for the rest of the service. After church was over we had our quarterly church lunch in the back building. Now this is something she always looks forward to. Payton is a social butterfly! She sat there looking a little bit better. She was even talking to a few people while eating some chicken nuggets. But shortly after that she started to look sick again and we decided it was time to pack up and head home. As we were about to leave my father picked her up to tell her good by and looks at us and says, “She has sweet breath, there’s something going on with her body and you need to get it checked out.” Well what he was smelling was her body in ketoacidosis, dumping sugar however the body could. Right then Cole become concerned and we headed up to the firehouse to meet with one of our paramedic friends. He said I’m sure it’s nothing and checked her glucose level. The meter just read HIGH and at that point I still had no idea what any of it meant (HIGH on these meters mean a glucose level over 500). Our friend very calmly told us to bring her to the ER because her level was way off. We walked into the ER and they called us in before Cole could even start filing any of the paperwork out. As they started checking her vitals we quickly realized things weren’t really all that great. There was a lot of concern in everyone’s eyes and Payton had dropped about 3lbs in the last week (She was only about 35 lbs to start so she had dropped almost 10% of her weight in a week!). They got us into a room and started asking all the questions. Everyone seemed very uneasy about the sound of our story and by this point Payton was drinking a ton of water and urinating every 45 minutes. All the signs were pointing to Type 1 diabetes. At this point in my life, I had no idea that children could even get diabetes. I didn’t know there was more than one type of diabetes much less that there was any difference in the two. There was more talk about what this could be and then it was time… they had to run an IV. That was THE WORSE THING EVERY! My poor baby did not understand what was going on and was completely beside herself. As a mom you just want to help. You just want to make it all better. You want to take all the pain away. I have never felt so helpless, confused, or this heart broken in my life. Soon the doctor would came in and almost with a sound a panic in his voice ask everyone to be very quiet. The bloodwork results came back and with a different, serious tone informed us that Payton’s glucose level was 1017! This is such a dangerously high number for anyone much less a 5 year old girl weighing in at 32lb. 1017! She should have been unconscious. She shouldn’t even be here with us today! The doctor thanked us for bringing her in when we did. He told us that we just may have very well saved her life. Had my dad not smelled her breath, if we had waited until the next morning to call the doctors office, we probably would have have found her little dead body laying in her bed that morning. The doctor then went on to explain to us that we needed to be transferred to the hospital in New Orleans where we would then stay for the next 3 days. We had to take a ride in an ambulance because Payton had to be on a drip. You see when glucose levels are that high you can’t just bring them down quickly or the brain can swell. So, to the hospital Payton and I went. She was a little worried but mostly just upset that she needed to go potty again. She was still doing great for someone whose sugar was so high. After we got there it was question after question and then they even asked me to leave the room to ask Payton some questions about her home environment. I get it, not all homes are same but this was clearly not abuse. Anyways…. It was finally over and I was able to come back into her room. While all of this was going on poor Cole and my parents were working together to get clothes packed for everyone and get William situated to stay with one of my sisters. The amount of tests that were needed to be run required her to fast so that meant that she was unable to eat or drink anything after already not really eating anything all day. She would randomly start crying because of how hungry she was. Every time someone would come in to check on her they’d ask if she wanted or needed anything and her answer was always waffles. Her arm was hurting from her IVs and she was in pain from all the finger sticks. By that night it was hard to tell if she was getting use to being stuck over and over or if she was finally giving up due to being exhausted. We did not get much sleep.
Monday July 10th
Finally, the next morning she was able to have pancakes even though she wanted waffles. We told her that pancakes are basically just fat waffles without abs. The down side to this excitement was that she was no longer on the insulin drip and would start to require injections very soon. Payton told quite a few people that she didn’t have a brother or sister at home. For some reason she was in total denial about having William in our family. My guess is she liked the spotlight and didn’t need to talk about her brother. I guess it was around lunch time that we finally got to meet one of the diabetes educators. We were given a book and told to read it, read it again, and then read it again. We were given some instructions but not a lot at this point. As luck would have it, the insulin pens that Payton would need (because it could dose in half units of insulin instead of whole units of insulin) had been recalled the day we got there. So since the regular pens were only full units she needed a diluted solution that could only be administered by a good old fashion shot. Once this sunk in she began to cry and become very scared of everything. She would only let them give her the shots in her arms so naturally they started to become tender and uncomfortable as the day went on. We waited around all morning wondering when we would be moved out of the PICU and over to a regular room without a large looking glass. Then it was lunch time… Turns out Payton hated their turkey sandwich and refused to eat it. Sometime after lunch her Nonni and Poppi came to see us again and this time they came bearing gifts! Payton was very excited about her games and art supplies. She even drew us some pictures but unfortunately had to use her left hand to draw them because they had put a second IV in the top of her right hand. A few of our close friends also came by to see our girl and they too came bearing gifts in the form of a GIANT pink teddy bear and the softest pink blanket they could find. Payton named the bear Penelope. After a while we ordered Payton some dinner. She was so excited about spaghetti and meatballs. All she could talk about was getting it again for dinner the next day. Finally we went from most likely staying in the PICU another night to a room opening up for us, yay! Turns out the PICU was a good bit bigger then the little tiny room we were moved to but thats ok. A few hours later we talked the nurse into letting Payton have a bowl of cereal for a snack since she was still starving. Not completely understanding everything that was going on it was so hard to have people tell me that I could and couldn’t feed my child. I needed a break so I decided to take a shower and once I was alone I just fell apart. I began to sob uncontrollably. My heart was in so much pain. It was so hard to breathe and be strong for the past two days that I just crumbled. Every finger prick, injection, the IV, or even everytime she cried just kept playing in my mind. I finally pulled myself together and it was time to sleep. Sleep, something we had not had very much of in the past two days. Payton and I snuggled up in the bed and passed out within minutes. I would like to say it was a peaceful night but there were still people coming in and out all night long to check her vitals or prick her fingers and give her shots. But at least it was more sleep than we had in a few nights.
Tuesday July 11th,
That morning she woke up in a great mood. I helped her to the bathroom and we brushed her teeth and with a big beautiful smile she looked up at me and said… she’s going to skip breakfast so that she wont have to get another shot. This, as you can imagine, broke my poor mommy heart. Not only was she willing to starve just to avoid a shot but she hadn’t fulling understood the gravity of what was going on and that she needed the shot regardless of her food intake. As the morning went on we waited for rounds to start but they were running behind or something. Payton was begging us to let her go play in the play room the nurses kept telling her about. So we headed down there and to our surprise, there was a lady from the insectarium setting up to teach kids about bugs! This is right up Payton’s alley!!! By the time all of this was over it was lunch time, which Payton was 100% looking forward to since she had come to terms with the inevitable shot. I left her and Cole in the play room so that I could go order her chicken wrap that she was absolutely dying to have since she really didn’t like that turkey sandwich the day before. Meals take about an hour to get to your room once your order is placed with the kitchen. So I just hung out in the room and started reading up on all the thing we needed to know to keep her alive. Finally it was time for lunch and they were back in the room. The diabetes educator came by and she was bearing gifts of glucose meters and test strips… you know all that good stuff. She told us she was still working on the special pen situation and was really trying to get us home by Wednesday. She made me give Payton her shot for lunch because we needed to learn how to do it sooner rather than later. Poppi called to see if we wanted him to bring William by, and wouldn’t you know it, Payton told us no. I told her I missed him, so she told me that he could come for a few minutes. Shortly after lunch one of my sisters came to see our girl and also brought gifts. Payton lit up in excitement when she saw that she had a new Shopkins toy! The kids played and finally Nonni and Poppi arrived with William. Neither of the kids were happy to see each other. Apparently they both got spoiled being away from each other and getting all of the attention to themselves! Finally it was dinner time again and all Payton wanted was that spaghetti. Boy did she clean that plate up fast. It was finally bed time again! Blood sugar was checked, shots were given, still no sign of a pen but we were still hopeful it would happen and we would get to go home in the morning. We all passed out right away. I was sleeping so hard that the nurse actually had to wake me up and tell me she was checking Payton’s sugar.
Wednesday July 12th.
I woke up and started to get ready for the day because I had no idea when rounds would be. Shortly after that, I woke Payton up to ask her about breakfast, and of course she wanted pancakes again and then went right back to sleep. Shortly after, a doctor came in to ask more questions and everyone was so worried about her because she was still sleeping at 8 am. Ya’ll, this child has always been a late riser and not a morning person! Breakfast got there and the nurse came in around the same time the RN came to check on us. She let us know that she was still working on the pen situation. We were asked how we felt about everything and when I told them I had no idea what to do, they realized no one had actually showed us how to do anything. So I was informed that we would be doing everything for her that day under the supervision of the nurse of course. While talking to the RN, we explained that the IV in Payton’s hand didn’t work anymore and was really bothering her but for some reason they wouldn’t take it out. She pushed to get them to take it out and Payton was so very grateful. She was so happy when that thing was finally taken out. Later that morning they did rounds and then Payton’s breakfast finally got there. After that she wanted to go play again. She played doctor on us and had us all taped up. She was smiling and having fun and honestly thats all a mother could ask for at this point. Lunch time came again and Payton wanted another wrap! So Payton and Cole stayed down in the play room again while I went and ordered lunch and did more research. Just when we thought that we would be there yet another night the RN came in to let us know she found some sample pens for us! Finally they were letting us go home! I’m not going to lie that was both exciting and terrifying to hear. Sleeping in my own bed, YES! Taking care of my child that needed us to remember everything to survive… that thought was really scary. Finally the car was loaded and we were off. All I could think about was “what if this,” “what if that” and “how am I going to feed this child when we get home?”. Finally after horrible traffic we made it home just in time for dinner! First meal and shots on our own and we made it! A little while later my mom came and dropped off William. We hung out for a little while but discovered that our kids no longer liked each other. Little did we know that was going to be a problem for almost a week! Finally it was bedtime! Everyone was ready for bed and we all got together and prayed like we always do. Hugs and kisses were passed out and then it was time for sleep. I was so excited to sleep in my own bed but also terrified something would happen. I set my alarm for 2 am so I could go do a finger stick on her and got some much needed rest. It wasn’t the best sleep of my life but it was my own bed.
The next few days were an adjustment but we had a care team that we stayed in contact with helping us change her numbers and doses according to what was going on. Her levels were far from normal range for a long time but we slowly got the hang of it. Every kid is different so what works for one might not work for the other.
Type 1 diabetes is not an exact science… it’s actually more like the science lab is on fire and everyone is throwing water balloons at it!
