How is 2015 treating you and your family? I’ve been sitting here for an hour trying to come up with a catchy line about how bad 2015 has been for us so far, but I think I’m just too tired. I’m coming up empty. I thought I had one, but as I started typing it, it sounded stupid, so I deleted it. Then I had another one, which also sounded stupid, so I deleted that one, too. I’m giving up on trying to come up with something that will grab people’s attention. I just want to get this post written so I can get to bed. My body needs sleep.
For those of you who follow James on Facebook, you know he spent the last two weeks in the hospital. This post is going to be a recap of this latest hospital stay.
2014 was a pretty good year for us. We had a very successful fundraiser and were able to buy a wheelchair accessible van. The Make-a-Wish Foundation built us a beautiful cover for our back patio so James can spend more time outside. James remained relatively healthy, and only spent one night in the hospital with pneumonia in March. He has a history of getting pneumonia around Thanksgiving and we were relieved when he got through November without a trip to the hospital. Then he had surgery right before Christmas to have new ear tubes put in and to have one of his testicles removed and things kinda went downhill from there.
Just a quick synopsis of that surgery for those of you who haven’t read that post. He needed new ear tubes because one of them was starting to come out. Since he needed to be put under anesthesia for the ear tubes, we decided to also have one of his testicles removed. It wasn’t fully descended when he was born and had surgery in 2011 to have it brought down into the scrotum and tacked into place. Unfortunately, it didn’t hold so the next option was to have it removed. On December 23rd he went in to have the tubes put in and the testicle removed. He spiked a fever during the surgery, but they were able to complete both procedures. It was supposed to be an outpatient surgery, but since he spiked the fever, they kept him overnight for observation and sent us home on Christmas Eve.
Now that we’re all caught up, let’s start talking about James’ latest hospital adventure.
After we got settled back at home on Christmas Eve, we decided that James could use some extra recovery time at home and not travel to see family on Christmas Eve and Christmas Day like we normally do. We got a call from the pediatrician on Christmas Day (he’s good like that) to check in on James and to let us know that the blood test he took when he was in the hospital revealed that he had coronavirus. We weren’t overly concerned because he had it before and didn’t cause a problem. We told the doc we would let him know if James had any issues.
During James’ last feed of the day, before bed, his stomach was distended…probably because of all of air he was taking in because of the double breathing. Stacy vented him to let out some of the air that had built up in his belly and remove some of the undigested food. I’ll apologize in advance if the below picture grosses anyone out, but part of this blog is to educate others why may find themselves in a similar situation.
Because James is tube fed, to vent his belly, we connect a large 60 ml syringe to his g-tube extension. We sometimes use a funnel as well. This will let air out, and as you can see in the picture above, also lets us get out some undigested food. Again, sorry if that grosses anyone out.
After we got out what we could, we put James to bed, hoping that he would be better in the morning. The following morning was more of the same…double breathing and feeding issues. We have learned that when James has surgery, his digestive system kinda shuts down. We just need to get better at remembering this and not go back to full feeds right after a surgery.
Our palliative nurse stopped by at around noon on Thursday (New Year’s Day) to take a look and listen. She said his lungs sounded clear. She actually said that they sounded the clearest she has ever heard them! This was good. At least we weren’t dealing with pneumonia again. She did think that he was a bit dehydrated so wanted us to try to keep up with fluids, which we did. That night his seizures started to come back. Although we hate his seizures, this was actually a good thing. When he is not feeling well his seizures stop, so by starting to have seizures again, we thought he was starting to feel better.
He spent most of the night with oxygen levels in the mid-90s, but his heart rate was in the 150 to 170 beats per minute range. This is another sign that he wasn’t feeling well. We tried to keep up with fluids to keep him hydrated, but eventually ran into a problem. All of the fluids we had been putting into his belly via his g-tube were just sitting there and eventually started leaking out around the g-tube site. Obviously not a good thing. Something was keeping the fluids from leaving his stomach like they normally would. It was at that point that we realized what we had to do, so we got everything packed up and headed over to the ER at around 8:00 pm.
Friday, January 2nd
While in the ER, they started him on IV fluids to get him hydrated, took an x-ray of his stomach, and took some blood for testing. His stomach was filled with fluid, which we pretty much already knew because of the fluid leaking out around his g-tube site. We removed around 700 ml of fluid via his g-tube. They put an NG-tube in his nose in case it would be needed in the future.
The blood panel didn’t reveal anything abnormal. One thing that was mentioned was the possibility that James had something called “ascites”, which they described as an accumulation of fluid in the GI tract.
They did all that they could do in the ER, so they admitted him and sent us up to the pediatric floor.
Saturday, January 3rd
It just so happened that James’ daytime nurse on Saturday is one of his followers on Facebook, so she already knew why he was in the hospital.
Because they were assuming there was some sort of blockage in the GI tract causing the build of a fluid in his stomach, they sent a surgeon up for a consultation. He reviewed the x-rays that were done in the ER the night before and it did not appear that there was any blockage so there wasn’t anything he could do.
They ran another blood test, and the only thing they noted was that his hemoglobin level dropped from 17.5 to 13.5, which is back in the normal range for someone his age.
We set up a gravity vent to try to drain the fluid out of his belly. There was quite a bit of green fluid coming out. Kind of gross! The plan was to continue to vent the fluid out until it is no longer green and then to try to run a slow feed to see what happens. They tried to give him some feeds because that is the only way he can take his normal meds, but we weren’t sure how much of those meds were actually absorbed by his body. It seemed like there was more fluid coming out through the vent than we were putting in.
Sunday, January 4th
The gravity vent was left in overnight and there was still dark green coming out on Sunday morning. The doctors wanted to do a small bowel test where they put some barium into his stomach and watch where it goes through a fluoroscope to see if it flows the way it should. The gut needed to be empty, so we had to wait until Monday.
Monday, January 5th
As is our normal protocol when James is in the hospital, Stacy stays at the hospital and sleeps in his room while I travel back and forth between home and the hospital. When I got there on Monday, I kissed Stacy and James like I normally do and then sat down in the chair. I happened to glance at the patient board on the wall that lists things like the patient’s, parent’s and nurse’s names; weight; etc. I really had a good, but painful laugh when I saw this:
I have lower back problems every so often and it just so happened that I threw my back out a few days before and was still in a fair amount of pain. I really thought that Stacy was trying to be funny by putting my name next to Fall Risk. She didn’t do it; the nurse did. She didn’t have enough room to write both our names on the Parents line, so she wrote my name below Stacy’s. We thought it was pretty funny.
Anyways, back to James. The small bowel follow-through was kind of a bust. The tech put the barium in James’ stomach via his g-tube and then we sat there watching it on the screen. We waited for a while to see if it went anywhere, but it didn’t seem like it was moving at all.
They decided to send us back to the room and have an x-ray done up there in a couple of hours to see if the barium had moved into the small intestine like it should. Unfortunately, it did not look like it moved.
Early afternoon he started to double breath again, but he recovered after a dual neb.
We tried a feed at 9:00 pm and ran it really slow at 10 ml an hour.
Tuesday, January 6th
At around 3:00 am, he started to double breath again after getting only 50ml of his feed. Stacy wasn’t sure if it was because he was eating on his belly or not. (He sleeps on his belly.) They gave him a dual neb breathing treatment, but he wasn’t doing much better. Stacy vented him several times and lots of air came out.
He had a fever that started at around 6:00 am, so Stacy called and asked me to bring over his cooling mat. After a couple of hours of laying on the mat, the fever was gone, and his double breathing had subsided.
There was growing concern that he had gone four days without nutrition, so they decide to put a PICC line in. The PICC line, or peripherally inserted central catheter, would allow them to give James liquid nutrition, and also a way to draw blood. His poor foot was looking pretty beat up from all of the previous blood draws. They started to use the PICC line to provide James with some nutrition on Tuesday evening.
He had another chest x-ray, and his lungs were still clear.
James got a special delivery. His name is Bandit.
Wednesday, January 7th
The GI doctor stopped in and didn’t really have any answers for us. The only thing that she came up with was that she wanted us to vent James for 1 hour, then stop venting him for 4 hours before we did another 1-hour round of venting. If less than 150 ml of liquid comes out of his stomach over a 16-hour period, then we can start fluids via his g-tube at a slow rate.
Thursday, January 8th
Not a damn thing happened on Thursday. Just a whole lot of sitting around and watching TV. I think we may have squeezed a few naps in here and there.
Friday, January 9th
We were still doing the cycle of venting that we started on Wednesday and there was still quite a bit of green stuff coming out of his stomach.
They did an upper GI series, which is similar to the small bowel follow-through (aka small bowel series) that they did on Monday. Whereas the small bowel follow-through focuses on specifically on the small intestine, the upper GI series covers everything above that…the upper small intestine, stomach, and esophagus.
The GI still wasn’t totally sure what was going on with James, but thought it might be SMA Syndrome. According to the website that I linked to, “Superior mesenteric artery (SMA) syndrome is a rare condition that involves compression of the third portion of the duodenum which is the upper part of the small intestines just past the stomach. Compression of the SMA against the AA can prevent duodenal contents from draining into the jejunum (upper small intestine) hence the inability to get proper nutrition leading to weight loss and malnutrition. Prompt diagnosis and early treatment are essential to avoid significant complications or death.”
The GI wanted to try to get a complete picture of what was going on with James’ digestive system so she scheduled a lower GI series for Tuesday which will look at lower part of the small intestine, and the large intestine.
Bear the therapy dog stopped in to say hi to James:
Saturday, January 10th
James made me a special card for my birthday. I think he had a little help from mommy.
We started slow feeds at a rate of 10 ml per hour to see how he would handle it. The feed started at 4 pm and went until 9 pm so he got 50 ml total before bed.
Sunday, January 11th
Sunday fun day? Nope. Our excitement for the day was James having blood cultures taken.
Monday, January 12th
James had been double breathing most of the day. I’ve tried my best in the past to describe what I mean by that…taking two inhales for every exhale. Stacy took a video in the hospital that may help you visualize this better:
We thought that the double breathing was caused either by him not tolerating his feeds, or that he caught some germs while in the hospital that are making him sick. We just don’t know.
Tuesday, January 13th
Had the lower GI series and they said his digestive system was slow moving, but surgery didn’t feel there was anything else to do besides slow feeds.
Wednesday, January 14th
James came home from the hospital with slower feeds and what appeared to be a cold. Our pediatrician was a bit upset and frustrated about the care that James received and the lack of answers we got. He said he was going to call the GI at the hospital and voice his frustrations, but we have not heard about that conversation yet.
We’re frustrated, too. James (and Stacy) spent two full weeks in the hospital, and we have no answers, other than feed him slowly. Really? After two weeks, that’s all you’ve got?!
You know what? We’re all home now, and that should be all that matters.
James seems to be doing okay with these slow feeds, although they are really messing up our schedule because they are so damn long. But I guess if having the feeds run this slow helps James digest them better then that’s what we’ll have to do.
A special thanks to everyone who left us messages, sent James gifts to the hospital, and sent Stacy food to the hospital. We are grateful to you all. And we hope that your 2015 is off to a better start than ours. How’s that saying go? “It can only get better from here.” Or something like that.
