Friday, September 19, 2008

I'm back

I know, I know. Long time, no post. But I've got an excellent excuse. A couple of weeks or so after the last post, I learned a brand new word...Intussusception.

What is this strange and exotic new word? you ask. It's a somewhat rare medical condition where a portion of the intestines rolls up inside of another part of the intestines. The medical websites give the metaphor of a telescope being collasped but I think a more accurate description would be to compare it to those kids' toy-water worms or water snakes. You know-the ones that are like a continuous donut-shaped tube filled with water that rolls out of your hand if you squeeze it. Ya didn't know that the intestines could act like a water snake, did ya? Well, neither did I.

How did I learn this fun new word? One night our little guy woke up crying. It started as a little cry but quickly progressed to scream-crying that nothing would pacify that would cycle-2 mins. crying, 30 sec. quiet, 3 mins. crying, 40 sec. quiet-you get the idea. After about half an hour of this, he threw up and seemed to calm down a little but he looked so drained we called the dr. Dr. says take him to the er just in case. Mind you this is 2 a.m. So we wake all the other kids and get everyone loaded in the car and head not to the nearest er but to one further away but better. By the time we get there (3 a.m.), little guy is calm and only throws up a tiny bit as we are checking in. Fortunately, the er is quiet so we see the dr. quickly. She takes a quick peek and orders an x-ray. X-ray doesn't show anything and the dr.s not sure what's going on so she orders ultrasound but they want to wait until the change of shift so a pediatric radiologist will be on hand to look at it. During this time, he's sleeping while nurses are trying to find a vein so that they can get a blood sample and an iv started just in case. Three tries and no luck when the night shift radiology tech comes in to takes us down before he leaves. (At this point I'm thinking that this might just be a waste of time because little guy is sound asleep and seems to be much better now. {It took three more tries before they finally got the blood and IV started.}) It was a change of plans but I'm glad he is the one that did it. Within minutes of starting the ultrasound, I could tell from his actions he had spotted something wrong. And this guy was good, checking and rechecking, asking a senior tech for advice and then grabbing the first available radiologist. Without saying what it was he redid the ultrasound of the radiologist with me following along trying to keep up. This is when I learned this great new word. My little 9 month had a portion of this small intestines rolled up about 6-8 in. into his large intestines (up and about half way across his belly).

At this point, we became the teaching case of the er. The cause is unknown but may be trigger by the lymph nodes swelling up after any kind of illness. (He'd had a little cold for a couple of days. Later findings make me think it was caused by something else.) It mostly happens in boys around 3 mo. to 6 years old. There are two methods for trying to correct this anomaly-1)an enema administered by a radiologist using continuous x-ray to monitor the progress and 2) surgery. Because the enema is deemed less invasive they always try this first. Either way we were told he would be kept at the hospital at least over night to make sure it wouldn't recur. (We called some friends who came and pick up the kids for us.) They performed an air enema and let me tell you, I would not call that the best option. It may be less invasive but I think it's far more tramatic. There were three of us trying to hold him down and as still as possible while he screamed in pain each of the three times they tried. He would collapse back down exhausted each time they relieved the pressure. The x-rays should that the enema couldn't complete push the intestines back in place so he ended up having to have surgery anyway. He had laproscopic surgery around 2 p.m. The surgeon told us that the intussusception corrected itself by the time he went in but half of the appendix was swollen and purple so he removed it just in case. (It wasn't the cause but likely got caught between the two layers of intestine.) We get settled into a room and dh goes to pick up the kids and get some rest. I bounce around between trying to rest, keeping an eye in the little guy (whose snoozing soundly from the trama of the day), trying to deal with being very uncomfortably engorged (He hasn't nursed since 1 a.m. and won't be allowed to nurse again until after the surgeon checks on him in the morning) and finally being incredibly bored since the only thing I brought with me is the diaper bag. It was a shared room with only 1 t.v. so I couldn't even turn that on to pass the time. By 8 a.m., I finally break down and ask the nurse if they've got any kind of reading material I could borrow. She was so great. She knew exactly what I was going through and managed to find me a couple of magazines. Amazingly enough, we left the hospital before noon with a happy baby and a passing post-op warning to come back in if he should any sign of a recurrence but with the assurance that this was very rare.

How rare is it? It only happens in 1 to 4 out of 1,000 kids.
How rare is a recurrence? When an enema works, there's a 10% chance of recurrence within 72 hours. After surgery, there's only about a 3% chance. (Do you see where I'm going here?)

Given these odds, I decided to hope for the best but prepare just in case. I got some little travel-size toiletries and stuck them in the diaper bag. 9 days later, at almost the exact same time of night, he had a recurrence. This time I grabbed a book, magazine and a quilting project along with an extra shirt and the diaper bag. (I forgot to mention that my little angel peed on my sleeve during the ultrasound the first time around and I had nothing else to wear.) We didn't bother calling the pediatrician this time. No point waking her up at 2 in the morning when we already knew what we'd have to do. Woke up the kids and headed back to the hospital. Ultrasound confirmed what we pretty much knew only this time it wasn't quite so bad. (Once again, our friends where kind enough to come and take our kids to their house.) The decision was made to wait for the day time shift change and the pediatric radiologist to try the enema again. (This doc was a much older man, who thankfully was very gentle as well as cautious. It was still tramatic but not nearly as bad as the first time.) No good but the surgeon decided he'd rather take a wait and see approach this time. Around 2 p.m. he showed symptoms again so the surgeon ordered another enema. Back to radiology we went, only this time with the surgeon watching from the other room. No luck again but this time the radiologist pointed out a mass/dark spot that he had seen the first time around and felt is was somewhat larger. So back to surgery, this time with a larger incision so that the surgeon can feel what this mass is and decide whether or not to remove it, but first more waiting for antibiotics and an open operating room. We finally head down to surgery around 8 p.m. Around 10:30, the surgeon comes out to give us the update. He couldn't identify the mass so he decided to remove it but to do that he had to remove part of both the large and small intestines and then form a new connection. We'd have to wait for the pathology report to find out exactly what was removed. We finally got settled back in the room around 1:30; nearly 24 hours after we arrived. Dh finally went home to sleep around 2. (It was a very cramped shared room.)

I didn't sleep much since the nursing staff in this department wasn't exactly attentive. They didn't hook him up to a single monitor despite him being on morphine and post-op. In the morning his i.v. alarm sounded for 40 min. (starting before shift change), we were right across the hall from the nurses station even and no one came. Fortunately, because of being short-handed, a nurse from a different department took over his day time care and immediately hooked him up to the monitors and checked up on us frequently during the day. When dh came later that afternoon, I told him about my annoyance with the night time staff. He encouraged me to ask if we could move to a different ward. I'm so glad he did. Our wonderful nurse stepped right up and got us moved to a big private room on her normal ward. It made the rest of our stay much more relaxed. Our little guy needed alot of holding during his recovery in the hospital so I didn't work on the quilting I'd brought but it came in handy at night as an extra blanket. :)

We had to stay at the hospital for 2 1/2 days after the surgery and wait another week after that to find out that the mass was a diverticula. A diverticula is just an extra little pouch that can form on the intestinal wall. Usually they happen on the lower end of the large intestines in older adults who haven't had the best of diets. His was a rare occurance on the beginning portion of the large intestines that he was probably born with. I believe this is was triggered the intussusception. I also think it was the cause of other things he was experiencing that were different from our other kids. He always had very loose, frequent poops. He was, also, awful about eating solid foods. It could take 45 min. just to feed him about 1 oz. of food. Now he's a much better eater and his bowel movements are much more normal.

So, between helping him recover and taking care of all of the normal everyday stuff, I just haven't had to time to blog.

1 comment:

Patty said...

Oh Shellie, I am so sorry....I know first hand what sort of pain a mother goes through when something like this happens. Now I know about it as a grandma too.
Saying prayers for this wee one of yours. Glad he is on the mend and when it comes to hospital stays, it is the squeeky wheel that gets the greasing. Glad you got moved to a better ward