square one

We’ve been doing more watching and waiting. And worrying…

Diego is not yet improving. In fact, he is getting worse. He has been experiencing a lot of pain, and still has no poops. Tomorrow they will do a contrast x-ray to see if they can visualize an obstruction. The doctors do not seem to be rushing to surgery, but Diego’s pain has me very concerned. He is not willing to get out of bed. I am doing everything within my power to try to turn this around- bargaining with him to walk or even get out of bed. Last night I held him upright in bed the whole night because he seemed to have less pain. Today we brought in the kiddie tub from home and I made him take a bath amidst much protest. I wish he could understand that I am just trying to help, and could perhaps be more cooperative. I think on a certain level he does, but I can’t really explain to him the urgency of the situation. It’s really hard.

So far, I have held off on the morphine because of it’s tendency to slow down the gut, but if Diego’s pain gets worse, we may need to pull out the big guns.

Gastroenterology will consult with us tomorrow if Diego does not need surgery. Hope, hope, hope…

square two

We’re back at the hospital.

After a day at home, the issue hasn’t yet been resolved. He was fine when we got back, but his health seemed to decline while home, and he didn’t poop at all. We had hoped to get him out of his funk by a field trip to the Science Museum, but it didn’t help. When he complained of pain in his side, we called the oncologist and told him we were headed to the ER.

Three more x-rays later, and it appears that Diego’s bowel issue has not fully been resolved. The attending pediatrician said the x-ray looked about the same as the last one, and that they would bring in a GI consult in to figure out the constipation issue, because “surgery is not going to help us.” (That was a relief.) It took a few hours to get him out of the ER and back upstairs.

Anyway, while we were waiting in the playroom for his room to be readied, Diego vomited up a bunch of bile– not good. We got him to a holding room and they started suctioning his stomach again. It gave him a lot of relief, I started to feel hopeful that we can still make it through this without more surgery.

Diego asked for his old room back, and the hospital and family in the space so very kindly obliged. Even I would have never imposed so much, but I’m so glad Diego got his way because getting him comfortable is such a big part of getting him healed.

home again

Thankfully, Diego finally came back home this morning.

The hospital had cleared him to leave last night, but I wanted one more night of observation- just in case. While Diego had a lot of energy at the hospital the past couple of days, once home Diego was feeling down, mostly napping. Hard to interpret that. I think we’re all feeling a bit shell shocked once again. Diego woke up this morning at the hospital with another nightmare about storms, and it was cold and raining today. When the the rain stopped we ran out and found a rainbow. He said he wanted it to stay in the sky forever.

In the hospital he requested cupcakes and celebrate his “three and three quarter birthday”, so we picked up some mix on the way home and got right to baking.

And tonight we’re eating Thanksgiving dinner.

rainbows

On our last stay at Kaiser hospital, I found this book in the playroom and read it to Diego.

Tonight, from his hospital bed, and quite out of the blue, he said:

“Mommy, I want to go on a trip.”

Where do you want to go Diego?

“I want to go on a trip to Hawaii.”

Why do you want to go to Hawaii Diego?

“Because after storms, there are rainbows there. And the rain is soft.”

thanksgiving

We are thankful, very thankful that Diego appears to be making it through this bowel obstruction without surgery (at least so far).

They were able to stop suctioning his stomach, and he has been making enough progress so they let him have clear liquids today. He has been really hungry for the past few days, last night his stomach was rumbling loudly and this morning he called out in his sleep for cake. So, this is a good start.

the waiting game

We’ve been here before- the wait.

The morning x-rays turned into late afternoon, and the surgeons speaking with us in the morning became the senior resident speaking to me at 9 at night.

Before the x-ray I was on edge, but after the longer I waited, the calmer I became. During the day with some work Diego was up and about walking and playing with rubber stamps. This sort of surgery were really emergent, I thought, they wouldn’t they have notified us early on? Who is going to haul a kid off to surgery who is hanging out in the playroom for hours on end?

When the resident finally spoke with me, he said the radiologist concluded that Diego continues to have a small bowel obstruction. On the other hand, a kid who was walking and playing was not presenting like a bowel obstruction patient. So, as I thought, the medical team wants to watch and wait.

Diego is seeming to show both steps forward and back. He is not 100% but he is miles away from writhing in pain as he was with the previous bowel obstruction. Overall, he has had little pain today and has poops, which is an indication that his bowels are functioning, at least partially. They are now pumping his gastric secretions in a clear tube to relieve pressure. Dark green laced bilious fluid is what we don’t want to see. It seems to come and go. I will become hopeful when I see clear fluid, but then it will go back to green. Right now it is clear, but it may go back to green again.

If the secretions continue to be clear, the next step is to stop the suction and see if he can keep them down. After about 12 hours they will probably introduce fluids and go from there. In the meantime, I’m keeping him up and active as much as possible. It seems to help tremendously.

obstructed

11:25 pm Things took another turn, and now x-rays reveal Diego has another bowel obstruction. We are awaiting to hear from surgeons for next steps. I’m really hoping and praying for a miracle that Diego will reverse himself and make it through this without surgical intervention.

Morning update: I am so conerned about surgery because if he does need a 4th abdominal surgery this year, he will likely have to deal with long term health issues as a result. If his chance of obstruction was 30% before, I can only imagine that it will go up from there.

But looking online, there seems to be a possibility that this could resolve without surgery, so I  am holiding out hope. He is doing well now and had a night without pain. He will have another abdominal x-ray this morning after which the surgeons will talk to us about options.

 

taking it slow

After another night of vomiting, Diego finally started to turn around this morning with a little poop seemed to relieve his back and belly pain. He has been able to hold down a few sips of water. This is really encouraging news, and the doctor feels he can go home if he is able to take it slow and hold down his meds. Most encouraging, the doctors do feel confident that this has nothing to do with a bowel obstruction.

It’s not fast enough for me, but I feel we’re finally moving in the right direction.

i wish

…someone would have warned me this would happen. How was i supposed to know?

cupcakes

Diego is back in the hospital, and it’s probably my fault.

Despite his undiagnosed milk allergy, when I let him eat some cream cheese frosting off of half a cupcake, I figured it was a calculated risk. My sister bought us a dinner which included carrot cupcakes and I felt horrible about denying him one. A few weeks ago we went to a birthday party where mini carrot cupcakes were served and I let him eat one, he had some tummy issues that night but otherwise it was fine. It was just a once in a while thing– I mean, who can deny a kid a cupcake?

Well, next time, *I* will be that person.

Last night, I thought all was well. I got dressed for bed and was looking forward to going to bed early with the boys and most of all getting a full night’s sleep. I had pulled an all-nighter the previous night for one of my design clients. It’s not something I usually do, but the project deadline necessitated it. But I am way out of my twenties, so it’s not like my body can handle it anymore. I really needed the sleep especially after working until 3 in the morning for weeks on end to move both of my businesses forward.

I drifted off to sleep in bed with Diego at about 8 o’clock, only to awake at 10:30 to him crying and writhing with abdominal pain. Those cupcakes were a mistake, I thought. After about 20 minutes I decided to call the doctor, and was told to keep an eye on him after explaining that I thought he was having a reaction to dairy. Then he started vomiting. Things calmed down intermittently but by 12:30 I was still concerned so called the doctor again. He said he was concerned about the vomiting and to take him to the ER.

Diego was vomiting every 5-10 minutes in the ER. Then the vomit started coming out green. I knew what that meant- bile, yet another sign of a bowel obstruction. The attending physician agreed there was cause for concern of an obstruction and ordered an x-ray. I was told I would get the results in two minutes. Then two hours later, I finally got the results from the doctor. No bowel obstruction. He compared the x-rays from the period leading up to the previous obstruction in July/August and saw some similarities but felt confident that Diego was okay. The radiologist agreed, but Diego was sent up to the Pediatrics floor for admission and observation.

Diego had intermittent pain throughout the night and continued to vomit, but by 6am had tapered off from vomiting every few minutes to vomiting every few hours. By mid morning he was no longer vomiting up bile, which made me relax a bit about the possibility of a bowel obstruction. Still, he has had intermittent pain, and it’s been quite severe.

The oncologist on call stopped by to discuss in early afternoon. He also felt quite confident that Diego’s issues are not a bowel obstruction. He tried to make me feel better about the cupcake, didn’t feel that it necessarily explained everything that was going on. Yes, a cupcake cannot cause a bowel obstruction, but my in my own opinion wreaking havoc on a compromised gut with a higher than average chance of reoccurrence is not exactly a benign act. Either way, Diego is going to be here until he starts eating and pooping again.

I am like a sponge, talking with all the doctors and nurses about what is going on, getting their ideas. I want to hear everyone’s opinion so as to gain some control. Perhaps there is something I can do,or suggest that will keep Diego safe? I actually wouldn’t mind being the cause of this problem, because in knowing the cause we have some control.