Sunday, November 6, 2016

I tend to internalize a lot of things, and today I thought that maybe I should try writing them down. Sharing my story is not something I do easy, but maybe it will inspire someone else. This one is LONG so it won't hurt my feelings if you don't read it all the way through. 

The last 19 days of my life have been a complete blur. What we thought started out as a virus became strep throat and constipation. A week later, we are in an ER and are told it's likely his appendix and we need to take an ambulance to Egleston. The doctors there calm our worries and say it's not his appendix, but it could be a virus, a bowel obstruction, Celiac disease, or Chron's disease. We took him home after two days with plans to follow up with his pediatrician on Wednesday.

From Monday night (Halloween) to Wednesday morning, Layton doesn't seem any better. He is weak, still  not eating and overall miserable. We go to the appointment Wednesday morning and after repeating the whole story, she says that there is a pediatric GI Dr across the hall that she wants to consult with. She comes back in 3 minutes and says that the doctor wants to see him.

We go across the hall and I begin the usual paperwork while she starts getting his history. She examines him and then goes out into the hall. I can hear her call someone and tell them that she is sending me to them. She goes back across the hall to the pediatrician and then comes to tell me to take him to Scottish Rite where someone in her practice will be waiting for me. She says to go to the ER so things can move more quickly. I pick up some clothes, snacks, my schoolwork and Lucas and we head there. My parents are on the way to meet us.

We only had to wait 20-30 minutes before they called us back. We heard that the wait at that time was 2 1/2 hours so we were so grateful to be expedited. They start his vitals and the GI doctor is in almost immediately. He asks a lot of questions and the ER doctor comes in to check him out too. They both remark on how sick he is. It is at this time that we are told that the blood work for Celiac was positive so there will be more tests necessary to confirm it. This white blood count and platelets are also too high and his protein is too low. He only weighs 38 pounds and his BP is hovering around 140/110. The nurse comes into the room to start an IV around the time my mom comes. Luke let her have his sticker so she could come see him. He HATED getting the IV and I felt just awful the whole time. His tears and screams were almost more than I could take.

We are in our room within an hour. I am so thankful that they are working hard to help my baby. He gets fluids all day and sometime that evening they let him eat from the gluten free menu. He picks spaghetti and corn and eats it up.

Thursday morning rolls around and Layton wakes up ready to eat. He is unable to have anything because of the plans for an endoscopy later that night. All through x-rays he begs for a snack. We take him downstairs to play and have to walk right by the cafeteria and he cries because he is hungry. The play area closes for lunch so we walk by it again, which only restarts the tears. As soon as the play area reopens, we run back down there because it is the only thing that keeps his mind off food. They call and ask us to bring him up around 2 because they got him a spot in the OR.

When we get to the OR, the nurse gives him versed to help him relax and they take him. The doctor comes back about an hour later and says he is still uncertain about Celiac disease based on sight so we have to wait for the labs. As soon as Layton is back with us and awake, he eats up some mac and cheese and carrots. His blood pressure is improving and he is starting to be more like himself. This is the night that Layton pulled his IV out in the middle of the night. It takes an hour, three nurses and two sticks before they get it back in and they have to do it in his elbow because his little veins are too small. He was so upset because the old tape pulled his hair and he hates IVs anyway.

On Friday, we are told that the blood work won't be back that day because his procedure was late. Layton does eat great all day and we spent several hours in the playroom. They even take him off fluids pretty early that day because he is improving. That evening, he doesn't eat too well because of a sore in his mouth, and they start him on Pediasure to help with weight gain and an appetite stimulant. Friday night was the best night's sleep Layton has had in three weeks.

We wake up Saturday to start Prilosec and are told we are being discharged. Layton eats breakfast and starts another Pediasure. We leave around 11. Layton just isn't seeming like he was the day before...

(We did get a call about 30 minutes after getting home confirming that he does have Celiac's disease and in addition to eating gluten free he needs to stay off milk and ice cream. The doctor knew we would appreciate getting the results before Monday and could tell that we were prepared to hear them. She sounded positive and encouraged us to go shopping.)

We come home and all he will do is lie around. We get him to finish the Pediasure and offer him some fruit. He throws up all of it. He doesn't sleep well and wakes up pretty weak.

That leads us to today. He did drink almost all of a Pediasure and when I get ready for Prilosec, he pukes on his breakfast of strawberries and stringed cheese. I only got him to take half the dose before he got sick and decided on not forcing the other half.

I get started on cleaning the kitchen really well and Luke convinces Layton to ride with him on some errands. Luke was going to fill scripts for nausea and cramp medicine, pick up Logan and get some brakes for my van. It takes him about 2 hours.

While he is gone, I just get this feeling of being worried and overwhelmed and just cry. I have held it in for 3 weeks and couldn't hold it in anymore.

When Layton gets home, I give him a Zofran and try another Pediasure. As soon as he finished it, he puked really bad.

After a while, I try the med for cramps and he says it helped. I fixed him some mac and cheese and he ate maybe 5-6 bites. Although not much, he did eat AND he kept it down all night. He also was able to take his appetite medicine before bed.

He is soundly sleeping and here I sit worried that he will wake up in pain or vomiting.

We decided to stop the Pediasure until we talk to the doctor in the morning. It seems to be the trigger for the vomiting.

Hopefully tomorrow, he will show some improvement. I will work on getting some food ready for the week and think about how to move forward.

I have missed so much work in the past two weeks and I couldn't ask for better co-workers. They have been such a blessing to me while I have had to be away. I miss my kids and look forward to seeing them later this week.

I am making it with my grad school work. I only had to be late on an assignment during the first hospital stay, and my professor was very understanding. I really don't want to have to withdraw from this program. It is my dream and I have waited a long time to start it.

Please pray for strength and healing for my baby boy. We have felt your prayers through all of this and we love you so very much!



  1. I love you and am here for yoh anytime you need me


  2. Oh Stephanie. I feel so for you. I was a pediatric GI patient as well and it is no fun....for the mom the dad the kids or the patient. Please know I am praying hard for all of you. Keep the information coming!
    Love ahna