Saturday, August 8, 2015

From Poo to the PICU

Last night, I drove Brayden to the ER at Children's National in DC. Shortly after he was admitted to the ICU.

As many already know, bowel movements are a big deal on our house. It is something Brayden struggles with on a daily basis. It is a problem that we have been working to resolve. He has very, very poor motility in his GI system, no matter how soft or loose his stool is, he cannot get it out so we have to help him with enemas.

Brayden had his regular enema a couple of days ago, nothing significant happened. So he had another the following day, nothing happened so he had another and again nothing happened. He needed more assistance to get out the stool and now the enemas. Without going through too many details, we struggled with getting a bowel movement and the enemas out. He started gagging and vomiting as well. Then yesterday he was worse, lots of gagging, still no bowel movement. His drain from his g-tube now smelled like poo as did his vomit. I called the doctor.

After some discussion, we decided to take him to the ER at Children's (since that is where the motility GI doctor is located). Brayden's bag was already packed because we was supposed to be heading to the respite place, Jill's House. Throughout the afternoon Brayden became more "sick" looking; very lethargic, gagging, vomiting, miserable. Jeremy stayed at the rental house (oh yes, this happens while we are dealing with our house fire) with the boys and I headed out with Brayden.

On the drive to DC, Brayden really scared me a few times (which has not happened in a very long time). He became unresponsive, very unresponsive. Jeremy and I were discussing if I should pull over and just call 911. However it was 5:00 p.m. in the DC metro area on a Friday night, traffic was a mess and it did not feel safe to stop on the side of the road. I could still see Brayden was breathing, so I could breath and keep driving.

We arrived to the ER and they quickly took him back. There was a huge problem trying to find a place on him for an IV line and to get blood work (no surprise he is a horrible stick). He was so out of it, that the many sticks trying to find a IV line, did not bother him one bit. Meanwhile his oxygen was all over the place dipping into the 70s and 80s (you should be in the upper 90s if not 100). His heart rate was almost double of what it should be. He was put on oxygen then BiPap, also because too much CO2 in his blood. They gave him an EKG. Ordered x-rays of his abdomen.

The bloodwork came back a mess, he was still struggling with all his stats. The x-ray showed a lot of stool, no surprise. And a possible kidney stone...or a tooth he swallowed, that is yet to be determined, and the least of worries. Next stop was the Pediatric Intensive Care Unit.

He was admitted to the PICU. Put on IV fluids (more trouble finding a line to handle it all), potassium, general antibiotic, Bipap, seizure medications, etc. Hooked up to a lot, his room glowed in the night. Brayden was still very unresponsive...not bothered or upset in any way shape or form with all these people poking at him.
During the night Brayden did have a few bowel movements, but his tummy is still hard and swollen.  His bloodwork was still abnormal, electrolytes mostly the problem. And a bonus to find that he also has MRSA and now on contact restrictions.

Morning rounds. Respiratory stopped by. Then neurology, we all decided this was more of a GI problem than his seizures/neuro problems. The plan with the fellow, attending and resident doctors were to stabilize Brayden, bowel movements were not the focus.

Brayden started to look a bit better and the best sign was when the neurologist was poking at him and he tried to kick her. It was only one attempt but at least he showed signs of being annoyed.
Brayden still needed more fluids, potassium, calcium, medications and more labs. All trying to go through 2 very poor IV lines. The team decided Brayden needed an arterial line. It was time for them to place the arterial line. They could do it right in the PICU but I could not be in the room, since it was a sterile procedure. Jeremy just arrived at the hospital so we grabbed a bite in the cafeteria while they placed it. We headed back to Brayden's room and they still could not get the arterial line placed. I could not see Brayden behind a closed door and pulled curtain. The team in the room called for more help. Jeremy and I wandered the hospital a bit hour and a half later and they still could not get it. Finally two hours later, he had the arterial line (and still 2 IVs).
More labs done. More potassium and calcium still needed, as well as other fluids.  He is also on gut rest, no food through his j-tube (we turned it off at home before heading to the hospital).  He was able to come off the Bipap, they did a little nasal cannula and he will probably go back on BiPap at night, which he sleeps with at home.

Now we wait to see how his body reacts.  Then more labs.  Once he is stabilized then they will start discussing the bowel movement problems.

Honestly, we are still left with a lot of questions.  I thought I was taking him to get the poo out and some how he ended up on the quick path to the PICU.  Really no idea what the plan is other than to get all of his stats looking good.

Thankfully by the afternoon we actually saw Brayden's eyes, he perked up a tiny bit to realize daddy was there and mommy had turned on Mickey Mouse for him.
Pray for his little, big, chubby body.  I forget that while he seems healthy on a daily basis, his health is always a delicate balance that can tip easily in the wrong direction.  Pray that we can figure out what is going on with his body and also start addressing his bowel movement problems.

Jeremy and I are running on fumes.  Honestly the most stressful week we have ever had, ever.  Pray we can keep it together for our boys.


Unknown said...

Praying for Brayden's body, for the doctors to have wisdom and you and Jeremy to have peace and rest. xo

Full of Joy said...

Praying from PA!

Cami said...

Keeping your sweet boy & whole family close in our thoughts & prayers.
- Cami & A.J. Frickman

Unknown said...

You are all in my heart and prayers. Let us know if we can do anything. God is with you every minute, every step.

Jen Rueckert said...

Please, please let Catoctin know how we can support you and the family. We love Brayden! All of you are in our prayers.

Unknown said...

Praying for Brayden, the doctors and strength for you and Jeremy.

ordinaryhappenings said...

Carrie the strength love and courage you continue to show is so amazing. Love and prayers for you and your family.

ordinaryhappenings said...

Carrie the strength love and courage you continue to show is so amazing. Love and prayers for you and your family.

ordinaryhappenings said...

Carrie the strength love and courage you continue to show is so amazing. Love and prayers for you and your family.

Courtney Cassada said...

oh, carrie. i don't know how you can take this on top of everything else! you are loved and being prayed for.

Scott said...

God bless your family and Brayden. I came across this blog when I was looking at Give Kids the World on Google. My family is anticipating a trip there in February with our boy Daniel, 9 years old. My family is familiar with some of your issues as Danny was born with GI issues (among other things). He has had a G tube, and at one time a GJ tube, and a colostomy until he was 4 or 5.