Adjusting to Home

Brayden was discharged.  And I felt like it was more about discharging me.  Pages and pages of instructions for me, which I assured them we could handle at home so that Brayden could go home.

Part of the discharge plan was the changing of the ileostomy bag.  The entire contraption is changed twice a week.  Emptied several times a day.  The emptying part is interesting, at first we thought it did not smell much...then we realized that he was only on IV fluids.  Oh that smell changed after he started with the food.  A smell like poop but much more than that, like this where poop has come to die.  It is quite the smell.  Of course they give us anecdotal advice to minimize the smell.  The best/oddest advice?  Put some mint tic-tacs in the bag, it helps with the smell.  I will let you know if the tic-tac actually works.

Jeremy and I had full ostomy training.  And that was intense.  Not intense because of his ostomy, intense because of the wound care nurse that did the training.  She did not mess around and found no humor in our poop humor (I mean poop is shooting out of my child's side and that ileostomy farts, it actually makes a little fart noise, we have to find some humor in that).  I am glad she was intense because changing the contraption is a process.  My first go at it and it was about an hour...I may have done a part incorrectly and told to redo it. 

Finally I had it on.  Brayden handled it just fine.  As everyone kept reminding me, the intestines have no nerve-endings so it is not the problem for pain.  Protecting the skin around the stoma is where trouble can arise.

After two trainings, we given supplies for a couple of weeks until the monthly supplies start arriving.  And wow it is a list of things:  ostomy attachment, ostomy bags, tape remover, skin cleansers, gauze, more gauze, powder, paste, some smooshy stuff (don't know the name yet), glue, tape, etc.  And I learned from the training that all needs to be set up before you start changing.

I looked like to looted the supply closet when we left, bags and bags of supplies.  Our hospital swag bag, which I actually enjoy.  It is our life's version of a goodie bag.

Once home, Brayden settled in quite well.  Except the first night.  He was upset.  He did not seem to be in pain just wanted Jeremy or I with him at all times.  And not across the room, but right beside him.  After all of the exhaustion I finally crawled in bed with him till sometime after midnight. 

The next day, he just wanted to sleep and not be bothered.  He made it abundantly clear how he was feeling.

I am learning to adjust.  I had full intentions of calling a friend over and their child's nurse to help me with my first time changing the ostomy contraption at home.  Well, it did not work out that way.  After rolling Brayden over one evening, we noticed a bit of poop leakage.  The seal broke and we needed to change the entire thing.  A bit of panic and a shrill of shouting for Jeremy, might have happened.  I was not mentally prepared for it yet.  It honestly feels like an operation.  I frantically tried to get things all set up and working towards changing it.  I am not quite fast enough yet (time is not on your side because it leaks/shoots liquid poop), about 45 minutes this time.

Brayden has many follow up appointments.  I even have to take pictures and send them in for review.  One appointment we are looking forward to is the surgeon.  Brayden cannot have a bath or shower until the surgeons says a looks good.  A bed bath just doesn't do the job.  Poor guy, his hair is taken on a life of its own.

The Waiting Game

Apparently the Waiting Game is the game in which we must be participatory.

The last couple of days have just been filled with waiting.
Waiting for rounds
Waiting for labs
Waiting for ostomy output
Waiting for a wet diaper
Waiting for increase in feeds and water

Waiting and watching.  Brayden's electrolytes continue to be the problem.  He has been looking good and acting much more like himself.  No problem making himself comfortable in bed.

In the down time of waiting, physical therapy came by as well as the doctors from Physical Medicine and Rehab.  We talked about positioning and equipment.

I may have decided Brayden need a bit more than just a wipe down, so I gave him a good bed bath, soap filled shower cap and all.  He was thrilled.

Jeremy and I also got a little training in taking care of the ileostomy.  Emptying it, cleaning, removing, placing, etc.  Oh it is nothing but fun...to see part of your child's organ hanging out.

Jeremy and I have been swapping back and forth for hospital time and home time.

I was at the hospital last night and had a great visit with the fabulous Aunt Tammy, who happened to be in town for a brief business trip.

Out of the PICU

Brayden has been moved to the general floor.  He is doing pretty well.  It is nice to be out of the shared PICU room.  The private room might be the best hospital view we have ever had; a panoramic view that includes the Capitol, Washington Monument and more.

Any weekend at the hospital is rather quiet, not much going on which means it just feels like a big waiting game.  Even the busiest hallway in the hospital is vacant.

Of course Brayden still likes to keep everyone on their toes so he still struggled with seizures, almost 48 hours and still not breaking out of the seizures.  Pushing in to day 3 of seizures and he finally seemed done with the constant in and out of seizures and now we are only seeing his typical daily seizures.

To help with the seizures and test out his function of his GI system's ability to absorb, they gave some of his medications through his j-tube yesterday.

With the attempts to use his j-tube, it started up the activity for his ileostomy.  A bit too much "dumping" out yesterday and his electrolytes started to take a hit.  They ordered more blood work and an EKG.  They pumped him with some additional things to help with his electrolytes.  That helped him perk up and seem much more like himself.  Which was great since Jeremy brought Carter and Luke down for a visit.  And we had a family dinner with hospital cafeteria food (not the best choice on the weekend, slim pickins).

Brayden (and Jeremy) slept pretty well last night.  The doctors put orders in for Brayden to start his j-tube feedings.  Starting at 5mls/hour and slowly increasing.

Today, Brayden has handled the j-tube feedings relatively well.  There was some "dumping" in to his ileostomy so they needed to replace those fluids with a big bolus of IV fluids.  The concern with dumping is losing to much fluid and being dehydrated (which causes problems for electrolytes, high heart rate, etc.), much like having severe diarrhea.

His ileostomy bag came loose and they needed to put a new one on.  Jeremy was able to see the process of the change and making it work for Brayden.  It is tedious and specific but we will get the hang of it.

Overall, Brayden is doing pretty well,  Today he seemed much more comfortable and showing signs of his personality.  And snuggling with his new little friend, puppy.  Oh how I love those chubby hands.

Post Surgery

Brayden had surgery yesterday.  The morning did not start so well and we were told Brayden's surgery would be pushed to another day.  His electrolytes were not so great and they were not able to clean him out all the way.  He was still a bit of a mess.

Many, many bowel movements and stuff was still inside.  I cannot believe how backed up he has been, how his little body could hold that much poop.

A couple of hours after morning rounds and they decided it was time for surgery.

Braydens body is not completely ready for the surgery but he needed the surgery.  He was taken down to pre-op.  We talked with the surgeon.  He was confident he could get the ileostomy placed however he was not sure he could remove the colon for several reasons.

Brayden was wheeled off and we waited.  We were told it would be about 2-3 hours.

The surgeon came out just over two hours later.  He was able to place the ileostomy.  However, he was not able to remove his colon, that was more than Brayden could handle at this time.  After the surgeon briefed us, then we waited and waited more to see Brayden.

It was determined Brayden
needed to be in the PICU (they discussed this prior to the surgery but not sure if he needed it or if there was room).  Brayden was taken to the PICU shortly after the surgery.

The afternoon and evening were about his breathing, pain management and seizure control.  He was put on BiPAP with some additional oxygen pumped through it.  He was shaking in pain and was given doses of pain medication every few hours or so.  And his seizure threshold seems low from the surgery., way too many seizures.

Then they are of course watching his ileostomy and the incisions the surgeon used to place it.

Brayden slept relatively well last night (of course he was a bit snowed with medications but sleep is sleep).  Jeremy and I didn't sleep much.  Jeremy braved the parent room to catch some sleep.  I attempted to close my eyes on and off at Brayden's bedside.  I forgot to mention that Brayden has roomies, the PICU is quite full and he is in a room with three other kiddos (one incredibly heartbreaking situation for a child in here, it is near impossible for me to sit here and not try to comfort her).

This morning started early for Brayden.  It started with  continual seizures for about 3 hours.  Finally all the medications settled in and he found some rest.  Then he was able to come off the BiPAP with oxygen.

His ileostomy continues to look good, doing the right things so far.  The doctor team will watch it and decide when they will attempt feeding through his j-tube.  Once medications and food will be going through his j-tube (very tiny amounts at first) they will be watching closely to see how he absorbs things and how much comes out in to the ileostomy bag.  They may even attempt a little bit this weekend.

Brayden does not seem to be in much pain, until he move him around or mess with him but that is to be expected.  He continues to struggle with seizures and the doctors are actively working to control them.

If tonight goes well (and that is relative for Brayden), then Brayden could move out of the PICU to the general Med/Surg floor tomorrow afternoon/evening.  All things considered he is doing pretty well, actually better than I expected (my bar was set pretty low).

On a side note, I dropped my toothbrush on the communal bathroom floor here in the PICU...and I may have paused to actually consider recovering it...exhaustion is real, it clouds your judgment. I did snap back to reality and tossed it but was disturbed at how long I really considered keeping it.

On Hospital Time

Which might be the slowest time ever.

Brayden was admitted last night.  After quite the hellacious admitting process.  We were told to call first thing Tuesday morning to start the admission.  I called and was told to call back around lunch time.  So I did, then I was told to call around 3:00.  I did, they said a bed was still not open yet but if we started heading down then one should be ready by the time we arrived.  Jeremy and Brayden hit the road around 4:00, which means DC rush hour traffic in the rain, lovely.  They finally arrived, headed for the admissions office and were told that a bed was not available and it was not looking promising.  Jeremy pushed, just like I was pushing all day with every person I talked to.  An hour went by, still no room and no promise of a room.  The admission nurse even thought we were still at home...um no.

Brayden needed to be admitted early to start the clean out of his bowels.  It needs to be cleaned out for the surgery on Thursday.  Seven o'clock in the evening, on Tuesday, and still no room, is not how we want to start.  And we do not want the surgery to be delayed.

I called the GI doctor on call.  Oh-so-thankfully (for real) the doctor on call was a fantastic GI doctor that has overseen Brayden's care the past couple of times.  He is so kind and genuine about the care of his patients.  He knew why Brayden was coming in (because he discharged Brayden last time), I explained the surgery time, the clean out time and still no room.  I hung up with him, he made some phone calls, and about an hour later Brayden had a room.

Brayden has a room.  But the late admission pushed Brayden too much.  It was getting past the point of him needing his seizure meds.  And in hospital time, medications needs to be entered during his admission, wait on the pharmacy, deliver to the floor...Brayden could not wait and his seizures were becoming a problem.  Ativan was given while his regular medications were being set up.

IV time, lovely nurses every where but Brayden is a hard stick.  We have learned to politely declined the nurses trying and immediately request the IV team (which we now know well from infusions and hospital time). 

Brayden's blood work was done.  Unfortunately, his numbers, particularly his potassium, do not look good.  No surprise.  But he cannot start the clean out process until his numbers are closer to normal range.

Another IV was done.  One for medications (and to pump in the potassium) and one for fluids.

A long night for a start of some long days.

There is something about hospital time that is incredibly draining.

Pray that Brayden's body will be in the best possible condition for surgery on Thursday.  Pray that he is comfortable in the hospital.  Pray that the surgery will take place soon and that his body will be ready.  Pray for Jeremy and I as we are going in to this so incredibly exhausted (there needs to be a word that goes beyond exhausted).  Pray for Carter and Luke, Jeremy and I are trying to be present for them, while one of our bodies might be there, I am not sure our minds are quite there.