Words cannot describe what it’s like to have your child experience tremendous pain. Your heart breaks more with every scream and plea for relief. You are supposed to be their protector and make everything better. And when their fate is in the hands of another, it can be terrifying. When they have to experience something horrific to help them get better, it’s almost unbearable. You would give anything to take their place and bare their burdens. Your child is your most amazing blessing and the guilt of watching them suffer is excruciating.
Cylus, 3, was in the hospital for 19 days. He had bruises on his arms from all of the IV’s and blood drawing, he was vomiting stomach bile, he had a nasogastric tube (NG Tube), he had two surgeries and a PICC line procedure, and looked absolutely miserable for over two weeks. It was incredibly painful to watch my littlest baby endure this. This is my diary of events that occurred during our time at the hospital.
- Cylus had a fever of 104 for five hours. It came down in a cool bath, but went right back up in a matter of minutes
- I took him to the local hospital at 3:30PM because of his fever and achy pain all over.
- He started saying that his stomach was hurting and it was extremely sensitive to touch.
- An x-ray showed he had some compacted stool, but this would not be causing the severe pain he was experiencing.
- Around 9PM, the Dr.’s were saying it seems like appendicitis and they transferred us to Children’s Hospital by ambulance (daddy went with Cylus and mommy drove).
- A surgeon came in to talk to us, and he said Cylus was showing all signs for appendicitis and wanted to do surgery immediately.
- Around midnight he was having a laparoscopic surgery for a possible appendectomy. The surgeon was also going to check all around his abdomen to see if there was anything else going on. It was supposed to last 30 minutes to an hour.
- At 1:30AM (an hour and a half later) the surgeon told us his appendix was fine, but they removed it anyway. He said that an infected omental cyst, the size of a grapefruit, attached to his stomach and colon, was the cause of his excruciating pain. It had partially ruptured, so some infection had leaked into his abdomen. This was likely the cause of his 2 1/2 years of tummy problems as well. The cause of the cyst and how long it had been there was unknown (possibly since he was born). We were in complete shock and very hopeful that this would end his constant stomach problems.
- He slept and rested the remainder of the day. He was in pain and very sore, but otherwise doing well.
- We forced Cylus to walk this evening which was painful for both him and us (mom & dad).
- After the walk, his IV quick working and they had to run a new line. The first attempt resulted in a blown vein, but they got the next one in and working good.
- The rest of the evening was uneventful.
- This morning, Cylus drank a lot of apple juice and ended up throwing up, so they started him on IV fluids.
- Early this afternoon the child life specialist, Tia, was able to get Cylus to sit up and go for a walk without crying. He complained his tummy hurt the whole time, but he was standing up straight and walking pretty swiftly.
- In the morning, Cylus was feeling great! He went to the hospital play room and played for a solid hour. When they closed for lunch, he threw a huge fit because he didn’t want to leave.
- Then, he ate his first meal – PB&J, french fries, and jello.
- That evening Cylus threw up stomach bile six times within two hours.
- We gave him a bath to rinse him off and when they were reconnecting his IV, it quit working again. It took three tries of digging needles into his arms and hand to finally get a working IV.
- The surgeon ordered x-rays and an ultrasound which showed that Cylus had an obstruction or kink in his intestines.
- The nurse put a NG tube in through his nose and into his stomach to drain his stomach fluids and deflate his intestines which should clear out the obstruction. He screamed, coughed, and gagged for two hours during and after it was inserted. He accidentally pulled the tube out a little and they had to push it back in about an inch which led to more screaming.
- He was upset, uncomfortable, and in pain all night. This was probably the worst night for everyone!
- I held Cylus for a while this morning (the first time since his surgery he wanted to be held) and when rubbing his nose on my shoulder, the tube started coming out again. It must have itched, so he instinctively grabbed the tube and pulled it out several inches. The nurse had to run in and put it back which led to more screaming and discomfort. They finally decided to tape it so that it couldn’t move.
- He started feeling a little better that evening and we colored together.
- That night I went outside to regain my composure and it rained on me for 20 minutes. [Since moving to California I keep saying how much I miss real rain and that I’d love to sit in the rain!] It gave me peace, joy, and comfort and really showed me that despite the pain and suffering, God is still with us!
- Our nurse took the NG tube out this morning. We were happy, but a little frustrated and worried they didn’t do any tests to see if it cleared the blockage.
- Around 10AM, after being NPO (nothing by mouth) for so long and crying for food the last couple days, Cylus was finally allowed to eat. He ate 4 crackers (then found out he was NPO again) and had a great morning.
- The surgeon informed us that the obstruction was most likely caused by starting foods too quickly before his intestines had time to “wake up” after the surgery. He ruled out serious causes of the obstruction and believes everything should clear up and start functioning properly.
- After 12 hours NPO at 10PM, he threw up bile again.
- Then, guess what? His IV quit again and he had to have yet another put in.
- He had another ultrasound today which didn’t show an obstruction, but severe distention (bloating). It said, “Relatively severe diffuse but otherwise nonspecific bowel distention” (whatever that means…).
- At 9PM, he threw up more bile, but felt a lot better after (still NPO).
- Cylus got an enema today, since the last two days of Dulcolax suppositories did nothing. It worked (twice) and increased our hopes that his intestines were working normally again.
- Since he has been NPO for so long and has had a new IV every two days, they finally decided to give Cylus a PICC line (an IV, with two ports, that runs from his arm all the way up above his heart). The benefits of a PICC line are to give him IV nutrients (not just fluids and electrolytes), it won’t clot or stop working (or they could easily fix it if it did), they can draw blood from it (and not have to stick him again), he can get the nutrients and medicine since it has two ports, and they can put contrast in the larger port in case he needed a CT scan with contrast. This was such a huge relief, but basically another surgery.
- It was placed within an hour and he rested for a while after.
- The rest of the night he cried in repeat-mode (saying the same word or phrase over and over again and any response makes it worse) “I want pancakes!”
- The surgeon told us he is scheduling a CT scan for tomorrow (the 12th) to see what’s really going on in Cylus’ tummy (because he had no idea…). He tried to avoid a CT to save him from unnecessary radiation, but it ended up being unavoidable.
- Cylus threw up a lot of bile after three days of absolutely nothing to eat or drink!
- Cylus had his CT scan. He did really well and stayed very still.
- Not long after we returned to our room (1:30PM), a nurse told us that someone was about to come get Cylus ready for surgery. We were alarmed, nervous, and confused until the surgeon told us what was going on.
- They didn’t see a specific blockage in the CT, but they saw a lot of gas and fluids moving very slowly and there was a portion of his intestines that was not moving and very little was able to pass through it. The surgeon said there may be an obstruction and depending on how bad and how long it’s been there, part of his intestines may be damaged and have to be removed.
- He went into surgery at 2:30PM and it was expected to last 1-2 hours.
- A little over an hour later, the surgeon informed us that Cylus had two loops of intestines (one on the left and one on the right) that attached to the location where they removed his appendix. Therefore, he had a double obstruction, but luckily it wasn’t a complete obstruction and there were no damaged intestines that had to be removed. He returned Cylus’ intestines to their correct origin and hopes it won’t happen again…
- Cylus was in a ton of pain the rest of the day and he constantly needed someone to put pressure on his incision, but he did sleep a lot.
- Cylus slept most of the day today. He was still hurting pretty bad, but it wasn’t an awful day.
- Cylus threw up at 2AM (which terrified us that the surgery didn’t fix the problem).
- Shortly after, he got up and walked (screaming) for the first time since his last surgery.
- The surgeon informed us that this surgery will take longer to recover from and get his intestines moving again.
- They switched him to a non-narcotic pain medicine (Toradol) which is also used as an anti-inflammatory medication. It worked so much better than the narcotic pain medicine he was on previously.
- We had more scream walking and feet dragging. He was still in pain, but it was much more manageable.
- Cylus started eating and drinking a little today.
- Around 7:30PM he had a bm (thanks to Dulcolax) that looked and smelled like stomach bile, because he doesn’t have much (if any) stool in his intestines.
- He began having horrible gas pain and I have to hold and bounce him until he falls asleep, but we are relieved to see progress in his intestinal movement.
- Cylus had his first meal since his last surgery – PB&J.
- He’s still experiencing a lot of gas pain, but he’s passing gas now and starting to feel better.
- He screams when he walks, but he’s walking more and it helps the gas move.
- Cylus walked about an hour tonight without screaming. He was hopping, running, and jumping! He stopped near the end of the walk and I was afraid he was going to throw up. Then I was relieved when I heard him fill his diaper (with no help from a suppository).
- The surgeon said that if things continue to go well, we will be able to leave in two days.
- Cylus was having gas pain and told me he needed to walk. He’s such a smart boy!
- Cylus keeps eating more, walking more, and feeling better!
- He was switched over to Tylenol today and it’s managing his pain pretty well.
- He went to the playroom two times today and played a lot.
- We found out we get to go home tomorrow! We are so excited!
- Cylus had another bm on his own today! His tummy is working!!!
- They removed his PICC line, which was a little hard to watch. It has two metal prongs facing opposite directions under the skin. It looked a little painful at times, but he screamed the most when they were pulling off the tape.
- We signed discharge papers and got the heck out of dodge!!! I was elated to take my sweet angel home!
The most incredible part of all this was how polite, funny, and sweet Cylus was to everyone. They would check his vitals every 4-5 hours and he would tell them how and where to do it. He eventually started helping them do their job and would always thank them when they left. He was so gracious and kind, even when one of them had to give him a new IV. He is such a mature and loving toddler, which is partially why it was so hard to watch him suffer.
Although I would not wish this experience on my worst enemy, I am thankful that we were at a great hospital, with wonderful nurses, and a good surgeon. As I watched my sweet little boy finally feeling good, saying his tummy didn’t hurt, laughing, and playing peek-a-boo, I was overwhelmed by God’s glory. If it wasn’t for God’s favor over us and all of the wonderful people praying for Cylus and our family every day, I don’t know how we would have made it through this heartbreaking trial. Even though I would rather not have gone through the pain and struggles of those 19 days, I cherish my baby more than ever! Also, being away from my other two boys that long was extremely difficult, and I was ecstatic to finally be with them again. Through this traumatic incident, I gained a lot of insight on appreciating the time I have with my family and I never want to take one second of these amazing boys of mine for granted.
The Lord gives strength to his people;
the Lord blesses his people with peace.
Psalm 29: 11 (NIV)