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.

Brayden's surgery is set

On Monday, we sat down with the surgeon to discuss the plans.

Brayden will be admitted to Children's hospital on Nov 10 with a surgery scheduled for the Nov 12.

It has been decided that Brayden will get the surgery for an ileostomy and to have his colon removed.  The ileostomy is much needed since we have not been able to get the stool out of him with out a lot of difficulty for many months.  He will also have his colon removed to deter from any future complications that could happen since he also has a redundant colon (an extra curve/loop in his colon).

Brayden will be admitted a couple of days before the surgery so he can be cleaned out (get out all of the poop).  This is not something they are comfortable us doing at home since he does not respond well to any clean out and he needs to be closely monitored.

• A couple of days for clean out.
• Surgery 2ish hours.
• A few days for the ileostomy to heal.
• Then food, through his j-tube, will start.
• Watch the output from the ileostomy, which is a concern since there will not be much space from the j-tube to the ileostomy for things to be absorbed that there will be "dumping" to much out and they will have to closely watch it and make adjustments to his feeding.

As the surgeon kept talking he was pushing the days in the hospital to more and more.  Jeremy and I are guessing 10-12 days so anything less than that would be great.

Pray that Brayden is stable enough until then.  He has some really rough days.  Last night was bad, unbelievable amount of retching and seizures, poor breathing, high heart rate.  It was a long night.

We are trying to get our house back together since the house fire.  There is just so much stuff to do and so many things missing.  We did get Brayden's room set up and he is so comfortable back in his room.

So many things at once.

Grieving

We want to thank you for your support during this difficult time as we grieve the loss of Ellie and celebrate her being in heaven. Ellie is Jeremy, Jon and Heather's mom and Warren's wife of 43 years. Loved by so many.
Many have asked regarding arrangements:
Viewing this Sunday Nov 1 at 6:30 - 8:30pm, Blue Ridge Bible Church, Purcellville, VA

Memorial Service, Monday Nov 2 at 10 am (Pastor Minter) Blue Ridge Bible Church

Graveside burial at Ebenezer Cemetery (Pastor Kesinger) following the Memorial service

Reception immediately following the graveside service back at Blue Ridge Bible Church

If you have any questions or would like more information please send a private message or an email to any of us. Know everyone is trying to keep up with all the messages etc and appreciate so many reaching out. Please listen to the sermon from Ellie's church on Sunday, it says so much about her and the eternal hope/promises that we have in our Savior.

Two Clinics in One day - One Big Decision

Brayden started the day in Bone Clinic at Children's.  First a dexascan to check his bone density, then talk with a team of doctors.  The scan did show his bone density is improving but still not on the chart.  It is improving, which shows he is benefitting from the bone infusions.  The ortho wants him to get his AFO braces very soon (which he has been wearing for years but his last pair was tossed from the fire and we have not had time to replace them yet).  She also wants Brayden to see a Physiatrist at Children's to help with Brayden's equipment, braces and positioning since Brayden's hips roll out, he has significant curvature in his spine and his ankles roll up; all things the otho and physiatrist watch and address.  Brayden also needs to get back on schedule for the bone infusions every three months (he is off schedule because this summer's mess).

The afternoon was spent in the GI Motility clinic.  The appointment we have been waiting for, the appointment that determines the next major step for Brayden.  The doctor walked us through all of the test results (barium enema, biopsy, sitz marker, colonic manometry, anorectal manometry).  Brayden lower GI system is not working, colonic inertia.  And when he does have a bowel movement it immediately wipes him out/depletes him in some way that he is very lethargic and sickly.  As the doctor said, "teetering on the edge" and that "we have become accustomed to being on the edge we do not realize how close we are with him" (translation: he could spend more time being critically ill or in the ICU similar to this summer, if we do not address things properly).  There are many specifics that show his system not working properly, too many to list right now, but the doctor has the test results that show it all.
It has been recommended that Brayden has a surgery for ileostomy (any other options were ruled out because of Brayden's many other medical concerns).

Ileostomy can refer to a stoma (surgical opening) constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin and to the surgical procedure which creates this opening. Intestinal waste passes out of the ileostomy and is collected in an artificial external pouching system which is adhered to the skin.

 
We left the GI Motility clinic, walked down the hall and made an appointment with the surgeon.  On Monday we will meet with the surgeon to discuss options within the ileostomy surgery and when it will actually happen.  We assume the surgery will be sooner than later and Brayden will be in the hospital for about one week.

I dread even the idea of Brayden having an ileostomy.  But Jeremy and I both know it is what he needs.  It has been decided, Brayden will have an ileostomy. 


And our house is slowly but surely becoming our home again.  The boys are absolutely thrilled to be home.  It will take some time to get things back in some sort of order (which, as you know, Jeremy and I are oh-so patient people, serious sarcasm).  There is still so much to do.  We are absolutely exhausted, an exhaustion I did not even know existed.  We are thrilled to at least be exhausted in our actual house.

 

Please pray for Brayden, he has just not been himself for several weeks now.  Pray that we are clear about the path to take for him.  Pray that Jeremy and I find some rest (and not the sleeping kind, our exhaustion is mentally and emotionally).  Pray that Carter and Luke handle every thing as well...praying we are not scarring them for life but shaping their character for the better.

 

It was a long day, long week, long month...long, long, long...

Where are the Jenkins?

That question can be asked in so many contexts.  Jeremy and I seemingly have gone off the grid.  No, we are not intentionally ignoring anyone, just so many things happening all at once.

For starters, we are still in the temporary house on the other side of Waterford.  However, starting next week, they will be moving our contents back into our house.  I have been informed that the boys will be sleeping there, even if their beds are not ready yet; they are just that ready to get out of this temporary house.  Brayden and I will be back in our house when Brayden's stuff is set up and ready to use.  It seems that in just over a week we could be back in our house!

Brayden has been able to stay away for the hospital and doctors for the most part.  Although I did get calls from the bone clinic that he needs to be seen, soon than later.  We had to cancel a bone infusion and an appointment for a dexascan because of hospital stays.  They want him back on track.

The big day for Brayden will be October 20.  The morning will start in the bone clinic for the dexascan, x-rays and meeting with the bone clinic team.  A couple of hours later is the big GI appointment with the Motility Team.  They will review all of the test results with us and discuss the next step, which seems to be surgery for some sort of ostomy.  October 20 will be a long day, but hopefully will be a productive one.

We need some resolution to his motility problems, he is currently having a rough couple of days.  Gagging, retching (which can last for many consecutive, seemingly long, minutes), tired, just not himself.  We are going to have his blood work done, just to check.  I am really praying he can be stable enough till we get through the move back in to our house.

Everything is keeping us busy and stressed.  Stressed to levels I did not know we could handle.

If you cannot find Jeremy working on our house, then he may be at football with Carter and Luke.  Their seasons have been a welcomed distraction to all things chaotic, football season is always something we enjoy.

If you cannot find me, then I am probably driving Brayden back and forth to school...which means I am probably sitting on Route 9 or Route 7 in all of the construction traffic.  I will be thrilled once we are back in our house (away from Route 9 and 7) and have Brayden's bus.  If not driving Brayden, then I am frantically hitting up every home store in the metro area to find replacements for our furniture, electronics, linens, etc.  I have dragged my poor parents around to many stores to help.

If you need to reach us, you can always email us efcarrie at aol dot com.  We may not answer right away but we will try.

Back to School, a couple of weeks late

But he finally made it.

Much like Carter and Luke, I think he was ready to go to school...get away from all our chaos, mom dragging him around for all kinds of house stuff, doctors, hospital and tests.  School sounds like a better choice.

Of course I attempted to take pictures but the little stinker would not acknowledge me or even bother to open his eyes.

Since our actual home is not ready yet, we are still in the temporary house where a bus cannot pick up Brayden (being on a busy road and driveway is a long gravel path).  I am taking him to and from school.  Brayden's school days/times are adjusted until we can get back home.  Basically I will get him to school when I can get him to school, attempting to make that happen three times week.  We also adjusted his hours to be shorter for a while since his school is not in our direct community and I need to get Carter and Luke to/from their schools/buses. 

Oh and Brayden's motility problems seem to interfere with school (and all other activities) so we are trying to factor that in as well...

What to do, for now

Brayden was discharged from the hospital (and hopefully no need to go back any time soon).
He completed the necessary GI motility testing (Barium Enema, Sitz-Marker Transit Study, Colonic Manometry, Anorectal Manometry).  All of this information should provide the doctors with more than enough data to decide the best long term plan for Brayden.

Brayden's motility is not so good, his final abdominal x-ray still showed those little sitz-marker rings still in his system (many days after they were placed).

We were sent home with prescription for potassium.  The hope is that giving him a daily dose of potassium will prevent him from having any significant troubles...after all we still need to get the poop out.  Brayden will continue to get Miralax daily and giving him the potassium should allow us do an enema a couple of times a week without putting him in danger (messing up his electrolytes too much).  And Brayden will have blood work done just to check everything.

We talked with the GI team on the floor, who was in communication with the GI motility doctor, as part of the discharge.  We know Brayden is in a holding pattern (literally holding his poop) till the best long term plan is decided.  So we posed the question to the doctors, "What would be the long term plan for Brayden?"

Then they said it.  I knew it was coming, it has been mentioned and we have danced around the subject for several months.

Brayden will need some sort of ostomy surgery.  There are three options:  Ileostomy or a Colostomy or Cecostomy (which doesn't really look like an option because his colon is not working much anyway).  After reviewing all of the tests, they will be able to assess which is best.

We will meet with the motility team in the coming weeks find out/decide which would fit Brayden's needs.  Then schedule whatever the procedure may be.

Again, I say, poop is important.  It has to come out one way or another.  But wow, I really do not want him to have any sort of ostomy.  I cannot let myself go in to the emotions of what this means for his life, but for now I can just say, it makes me sad.

On a lighter note, we learned that Brayden enjoys the movie Aladdin and Lion King at the hospital, perhaps from all of the music.  At least a little something he can enjoy for a bit and we may need to add those to his collection at home.

Heading Home

Not much left for the hospital to do for Brayden so he was discharged.

I will be back with the details.  But for now, no hospital!

Colonic Manometry

Sounds great.

Before all of this, the only thing I knew about colonics, was a "special" cleansing that some people actually pay for at a med-spa/"special" spa.  Well Brayden and I know more about colonics than ever (and we will never voluntarily do it).

The doctors have attempted to clean Brayden out from every direction.  Last night and into the early hours of this morning, they attempted to push LARGE amounts of GoLytely through his j-tube.  That did not go well for many reasons but mostly because the amounts were causing him to gag and retch for getting too much.  Then the fluids were more than his body could handle.  His potassium had yet another hit.  The cleaning out fluid was stopped, yet again, due to the drop in his potassium.  He was given more potassium through his IV.  More labs done.  This poor kid cannot do a clean out.


The clean out needed to happen for two reasons:
First to just get out all the stool that has been stuck.
And most importantly to clean him out so he could have the colonic manometry test done.

The colonic manometry:
For this test, a flexible tube is inserted through your child’s rectum into the colon. The tube is inserted while your child is sedated, but the test is completed when your child is awake.  Colonic manometry is a test performed to evaluate children with issues including colonic dysmotility, constipation and stool soiling. This test measures the strength of the muscle contractions inside the colon (also called the large intestine).

The tube is attached to a monitor for 24 hours, while inserted in Brayden.

Brayden is was cleaned out enough to do the procedure for the colonic manometry.  By late morning he was taken to the OR, sedated and the procedure was about an hour, while he was under they also did an anorectal manometry and took pictures with a tiny camera with/while the tubing was inserted.  Then he spent time in post-op for monitoring.  Back up to his room and the monitor does its thing.

While hooked up they will try different medications, a little bits of food, etc. to see how his lower GI reacts.  And hopefully all will be recorded on the monitor and we have to fill out a chart as well.

Brayden has handle most of it pretty well.  Definitely some moments of discomfort and he is really giving off this don't-mess-with-me vibe to anyone that comes near him.

He Does NOT Like to be Cleaned Out

At least his body does not like it.


An abdominal x-ray was done right away last night, we could still see all of the things from the sitz marker testing.  An IV was placed (I demanded/politely asked for the IV team since he is still pretty poked and bruised up from the last stay).  Labs were done.  He is on gut rest, meaning no food.

Shortly after being admitted, the plan to clean him out was put in place.  Start with an enema and then colonic washes several times throughout the night/day, till all things came out clear.

Brayden made it as far as one enema and one colonic wash.  They were able to get some stool out.  Then labs were done.  He did not handle the enema and colonic wash very well.  His electrolytes were starting to take a hit.  His potassium was not looking good.

Everything was stopped.  They added potassium to his IV fluids and stopped any sort of cleaning out.  And he was put on more monitors.

Things settled down at some point in the wee hours of the morning.  I have no idea because I crashed out on the couch.

Morning came and time for the doctors.  In walks my not-so-fav GI doctor (really, this guy?) who was with us during the PICU stay.  He was the one who prescribed a daily dose of Miralax when he discharged us from the PICU a few weeks ago.  Well, clearly that did not work and we are back (which I tried to explain/reason with him during the PICU stay).

Thankfully this visit seems to be led by the GI motility team.  They do not work on the floor but they are working with this GI doctor to make sure we are all on the same page, in theory.

By the afternoon more potassium was given.  More labs done.  His potassium lab came back looking better.  So things have started back up but not as aggressively.  They are trying to clean him out with an hourly dose of GoLytley.  The GoLytley was started several hours ago (and will continue through midnight) but there has not been a bowel movement, ugh.

The goal is for Brayden to be ready for a colonic manomety test on Thursday.  This test should be able to tell us more specifics about the strength of the muscle contractions inside Brayden's colon.

Brayden has been sleeping a lot but he did not get much sleep last night.  He has been moderately comfortable, lots of gagging/retching.  His sleeping at least gave me the chance to head to the cafeteria and a quick walk outside.

Pray Brayden is ready for the colonic manometry testing done soon.  We need to get a full assessment of Brayden's GI system sooner than later so the doctors can start making a real plan to deal with his severe lack of motility.  Pooping is a very important part of life.

Follow the Rings to the Hospital

Brayden is back in the hospital (thankfully not in the PICU).  Brayden GI system, is just not sending enough poop.

It started last week.  Time for more testing.  Sitz marker testing.  We came to Children's in DC to start.  Little round rings go through his GI system.  The little rings are in a capsule, that would be swallowed.  But since Brayden cannot swallow, the GI doctor removed Brayden's j-tube and one by one, shoved all 24 rings through the j-tube hole, into Brayden's intestine.  The rings are inserted to watch their movement through the GI system.

• Day 0, Tuesday Sept 1 - sitz markers inserted.  Abdominal x-ray taken immediately after the rings were inserted to provide a baseline.
• Day 1, Wednesday Sept 2 - X-ray needed.  I convinced them to not make us drive to Children's in DC for just one abdominal x-ray.  The GI team gave me order to use at any local Inova Hospital...well that did not work out so well, our local Inova was freaked/overwhelmed at the registration desk and it took hours for them to approve Brayden, get the correct orders to their liking and finally go back to wait for the x-ray.  X-ray done, all 24 rings were visible and very little movement in his GI tract.
• Day 2, Thursday Sept 3 - X-ray needed.  Back to Inova and we have to register again, ugh (apparently their system only holds it active for 24 hours then we have to register again).  X-ray done, all 24 rings still visible and still very little movement.  At this point we could/should see less and less rings.
• Day 4, Saturday Sept 5 - X-ray needed.  Thankfully the weekday staff let the weekend staff know we were coming and things went a little smoother.  But x-ray done and still we could see all 24 rings.
• Day 7, Tuesday 8 - X-ray needed.  Had to start the registration all over yet again and it confused the daylights out of the office staff, again.  X-ray done and we could see 22-24 of the rings.  All of the rings should be out of his system by day seven.

I emailed the GI team basically describing all the details above (minus the pain-in-the-butt registration).  I was instructed to give Brayden an enema at home, to see if any rings would make their way out.

Enema given this afternoon and no rings made an appearance (oh that is fun sloshing around in an enema/poop filled diaper, jealous, I know.  Meanwhile the GI motility team was working on Brayden being admitted to the hospital.

We called the GI motility team, they told us to head downtown to Children's for Brayden to admitted.  They want him inpatient to clean him out and do more testing.  Since the last time Brayden's was cleaned out, he did not handle it well...we ended up in the PICU.  The doctors will be closely watching his blood work, specifically his electrolytes.  He will not be fed through his j-tube, only given IV fluids.  They will be working on cleaning him out (not sure on the method of that yet, oh I could not be a nurse for this, handling all the poop).  Then he will be set up for more testing later this week.  And of course, more abdominal x-rays.

How does Brayden feel about it all?  Well, he had a temper tantrum so big that his flailing in defiance almost sent him out of his chair.  I tried to load him for another day to the hospital for x-rays and he was not having it.

But thankfully he is now, relaxing in the hospital bed watching Aladdin.

A bonus in it all, the parking attendants here at Children's start to recognize you after a while, since we have been here too much lately.  And apparently that comes with perks.

Quite the Poopy Summer

As Carter declared (in frustration as he huffed his way up the stairs), "This better be my worst summer ever."

I could not agree more.  At some point the level of which our stress and chaos has reached is utterly ridiculous and at times laughable.

Case in point, our temporary housing was without air conditioning up until a couple of weeks ago.  It has been one hot house.  We have had a parade of mice, ants and spiders, so now the house is like one big trap for any small thing.  Then on Monday we discovered the refrigerator/freezer was not working.  And we did not notice until very late in the day, probably stopped working on Sunday.  Thus we lost all the food (that we finally started to replace/stock from losing it all in our fire) in the refrigerator and freezer.  Borrow coolers and bought some dry ice, we at least needed something for Brayden's stuff.

Seriously, that just has to be ridiculous.  We keep telling ourselves that at least this house has plenty of room for our crew and it is still in Waterford.

On Monday, Jeremy and I trekked to Children's in DC for Brayden's Barium Enema.  Fun, I know.  Thankfully the techs and radiologist were amazing.  Even let us play music from our phone to help relax Brayden.  Brayden's was given the barium enema; I can't even begin to explain how big that bag of barium was going in to him, yowsa.  The tech was worried that putting the tube into his rectum was going to upset him, we assured her that for better or worse Brayden is quite used to the enema action. 

The radiologist was quick and efficient, taking many x-rays as the barium enema made its way through Brayden lower system. He even took the time to fully explain his findings. As he said, "I have good news and bad news.  The good news, his anatomy looks perfect.  The bad news, this gives you no answers to his motility problem."  The tube was lowered from Brayden's rectum and it flushed him out...in a way that I imagine colonics to be (and a confirmation as to why I will never have colonics).  The tube was completely removed and we were ready to head out.

One test down and a few more to go.  The other tests are more complicated and we are still working out all of the details.  But the plan is to move ahead with the testing over the next few weeks.

Meanwhile we are still struggling with Brayden having regular bowel movements.  He just has absolutely no control over it anymore.  Just moving him and little tiny squirts (yes I typed squirts) of watery poop roll out.  That can happen when he sneezes or coughs as well.  However it is just not enough to consider a real, productive bowel movement.  This morning, I was changing Brayden, moved out his diaper and here comes the squirt on to his bed.  Time to change the linens.  I clean him up and move him to a spare bed in the adjacent room.  I feel something drip on my foot.  A little squirt was running down my pants and dripped on my foot.  Then I look around.  His squirts of watery poop happened as I was moving him.  Literally sprayed his bed, the floor, some equipment, his wheelchair, a rug and me.  It covered over 30 feet.

Quite the poopy summer.

One summer I cannot wait to be over.  I cannot even begin to explain all that is going on so for now, we talk poop.

And the refrigerator was fixed.  And Brayden's room is very clean now.

Pool to relax, Panic from Puke

A few days out of the hospital and Brayden is still keeping us guessing.  Coming home from the hospital DOES NOT mean that Brayden is healthy and problems are solved. 

His little body went through so much at the hospital.  I am still in shock from how far things went and how he ended up in the PICU. 

Once we were back to the rental house, Brayden needed a bath.  We started to remove all of the bandages and band aids.  His arms and legs look like someone took a baseball bat to them.  I realized that he had about 12 places where he had an IV or an IV was attempted.

Remember he had an arterial line, that took 2 hours to place (when we were told it would not be very long)?  Once we removed the bandages, we discovered why it took so long.  I was told the arterial line was going to be placed on top of his foot and it ended up being around his ankle.  The top of his foot and ankle area has over 15 spots where they tried to place the arterial line.  15 places.  Now I know why they closed the curtain on us and why Brayden was given anesthesia.

To decompress from it all, this weekend we headed back to our actual home for a swim in the pool.  Thankfully the pool is still working since it is on different electric.  The water was a bit cold for Brayden but he quickly settled in once he found his place on the raft.

Things seemed to be going well.

Then last night happened.

Brayden screamed from 9:00-11:30 p.m.  Then started up again around 1:30 a.m.  I waited in bed, hoping he would calm down but he did not so I was up with him from 2:00 a.m. to who knows when.  I eventually had to leave him alone and he cried himself to sleep.

This morning I walked in to start his morning routine and found him COVERED IN BLOOD.  He vomited blood.  It was like a scene from a horror movie.  Rolling out the sides of his mouth.  His chest and arms covered.  And the biggest casualty in all of it was his beloved tiger (you see in many pictures), who seemed to be the landing spot for most of it.  I shouted for Jeremy in a panic.  We have not seen this bloody emesis in years.  I have absolutely no clue as to what would cause it.  We have pictures of it but it is just too graphic to post, we hold on to the pictures to show the doctors.

Jeremy and I cleaned him up and his bed (tossed tiger in the trash).  He slept most of the day, praying he sleeps tonight.

Since he has been up to his regular feeds for a few days, we haven't seen enough stool.  And now I don't what to do for him.  We see the pediatrician tomorrow.  Children's Hospital contacted us the day after he was discharged to set up more appointments and tests (barium enema, sitz marker, anorectal manometry, colonic manometry).  Brayden will be busy the next several weeks.  Pray we find the best way to help him.

Back Home (well, rental home)

Brayden made it out of the hospital.

Before we headed out, it was a very busy morning with rounds and rounds of doctors.  I forgot that it is only August...in July everyone moves up in the doctor world; new med students, med students move to residents, etc.  The first rounds this morning included 12 people.  Then rounds with GI.  And finally rounds with the fellow and attending doctors.

All said Brayden was ready to be discharged.  All of that happened before lunch time.  But we did not receive the discharge papers until 7 hours later...crazy frustration.  We finally headed out of the hospital, much later than I anticipated.

Thankfully Brayden was feeling much better.  How do we know?  He scoots around the bed.

And his new trick this summer is to hold on to cords, whether it be his drain tubes, feeding tubes, monitors.  He wraps his fat little fingers around them and holds it like a lovey.  He drove the nurse nuts on the general floor because he was tugging and would set the monitors off.

Brayden has a long list of appointments and tests that will need to be done over the next month.

As I went over his discharge papers, I finally saw in black and white the reasons Brayden was sent to the PICU.  His electrolytes were a mess (possibly from being dehydrated and/or the results of over using enemas), which caused problem for his heart and kidneys.  Scary to see the list of problems.  Thank goodness we drove him to Children's that night.