Done with Hospital and Headed Home

Brayden and his Papa Warren has a slumber party in hospital room 711 last night.  And Papa brought him a new turtle friend.  I dashed home (for about 10 hours to crash) and came back to wait on rounds and hopefully plans to discharge.

The last three labs (done every 12 hours) for his electrolytes looked good and that means discharge.

Brayden will need to see a doctor next week and then in a couple weeks and probably more regularly after that to check his labs.  But for now, we are headed home and this kid needs a shower.

Test Results and Labs

Many tests were done.  Not a lot of results, meaning most things did not give some great direction on the best treatment for Brayden.

The troubles:

• Electrolytes
• Retching followed with severe apnea when he is awake (turning blue all over for a couple of minutes)
• Very low body temperature (technically hypothermic)
• Heart which is troubled by the potassium problems (and thankfully no heart problems)
• Running out of places to draw blood (his arms look like an 80s PSA for "say no to drugs")
• Ins and outs - what do we put in him? what needs to come out of him? and what happens in between?

As Brayden's electrolytes have normalized most of the trouble listed above and have faded away.  All a result of the electrolytes?  Quite possibly, but all seem find that things look better.

Magic in a packet?  Brayden has been completely off IV fluids and put completely on his same formula and fluids that we have been doing for a few months...only one small change that may be big results.  Adding this ORS packet to his food.  High hopes that adding this will help his electrolytes.

Again, he will have labs and we wait to see if all looks good.  And he is now curling up his arms in defense of drawing more labs.

Hospital Down Time

Many tests have been done.  Many doctors have discussed, reviewed and discussed more.  Many labs have been done.  But that still leaves us with a lot of down time.

In between the down time:

• Brayden finished his 24 hr EEG.  Nothing remarkable on the EEG.  But lets be honest, Brayden's brain is so abnormal, we are never really convinced an EEG will tell us much.  The neurology team is fine with Brayden's current seizure control and medications.
• A new doctor to the mix - Complex Care doctor has been just that...looking at the complexity of Brayden's medical history.  This doctor seems like the puzzle master, looking way back in Brayden's file all the way to things currently happening.  Looking for clues, trends, abnormalities.  Jeremy spoke with him for quite some time and then they conferenced me in the discussion.  The discussion with this doctor deserve a blog post all to its own but I don't have the mental capacity for that right now.
• Abdominal x-rays done.  Brayden had some odd abdominal x-rays his past few stays...we thought it was just a tooth gone rogue but it seems to have been some other type of inconsequential calcification.
• EKG done, since potassium troubles can have direct troubles for the heart.  Thankfully Brayden's heart seems chugging along just fine.
• Labs, labs and labs.  Still checking those electrolytes and now the liver.  The electrolytes are all trending in the right direction.  Brayden's liver numbers were a bit off but we are not sure what that means yet.
• GI and nutrition are always part of the plan.  Brayden's ileostomy output has increased, in a good way because of the IV fluids and extra electrolytes.  As of this evening Brayden has been taken off IV fluids and electrolytes.  They have put him completely on j-tube feedings of his regular formula but added something called Oral Replacement Solution (basically a supped up version of Pedialyte).  Give this to him over night and check his labs in the morning.  The teams of doctors want to give him time on a home regiment to see how he would respond.

Speaking of responding.  Brayden has been responding better than we have seen him in many months.  He has spent the past couple of days with more awake time than he has had in months.  He has been alert and very responsive.  Below is video of him happy with a movie, then when he is not happy with a song in the movie.  Oh how I love to hear his voice.  Brayden has "talked" more in two days than we have heard in a very long time.  He is feeling good when the right stuff is going in and coming out of him.

Talk about it from Carrie Jenkins on Vimeo.

In the actual down time, we went on a search for one of his beloved animals.  I brought one with us to the hospital.  But when I arrived this morning, it was gone.  I questioned Jeremy and he had no clue. I may have gone through the trash and dirty linens buckets to look for it.  I needed to find this stuffed animal, it is by far Brayden's favorite. I asked just about anyone who came in the room, giving a description like it was a lost person report.  A nursing student realized she had seen one similar in description...in a basket with the EEG machine.  The EEG machine that was removed for the room yesterday morning.  Sweet puppy went for an adventure in the hospital, taken to many places in the basket of the EEG equipment.  That EEG machine was tracked down and he has been returned. These cubby hands are quite happy to hold on to him.

Jeremy headed home to be with Carter and Luke.  Brayden and I are hanging out.  What are we doing?  Brayden has enjoyed the movies Aladdin, Happy Feet, Cars and Lion King.  He is not quite a fan of Tangled.  I have enjoyed watching Comedians in Cars Getting Coffee and Carpool Karaoke (I cannot handle anything deep so we keep it light at the hospital).

As for when Brayden could come home?  Maybe tomorrow night...at least that is what they said a couple of days ago and haven't really said that since, but it still counts because they said it.  A lot will depend on the labs in the morning.

Lots of Questions in the Hospital

We have seen and talked to so many people in the past 24 hours.  Brayden's electrolytes were going down and getting in to the danger zone (some numbers were already there, thus being put in the hospital).  His electrolyte numbers are working their way in to the correct place.

I thought, naively, that a lot of Brayden's problems over the past year with his electrolytes, motility, weight, etc. would be resolved as a result of the ileostomy surgery.  Yes, Brayden's stool is coming out the ileostomy so we do have poop.  But what is going on with everything else?

The busy hospital waiting game:

Hospitalist - the guy leading the team and oh so many doctors.  Going over and over Brayden's past medical history, specifically Brayden's last few hospital stays and Brayden's current troubles.  The hospitalist and the team are trying to put together the seemingly random pieces of Brayden's puzzle.

GI Team - This electrolyte game seems to be all about Brayden's ins and outs.  The food, supplements, water, etc. going in to him.  And the ileostomy output, as well as his gastric drain output.  Every bit of it counted.  Brayden's food and water amounts do not seem to be working.  Does he need more calories? Higher concentration of food?  Not tolerating water?  Does he need supplements?  Brayden's ileostomy does not have much output but does more need to come out?  What amount should be coming out? 

Neurology Team - related to Brayden's electrolyte problems or not, we have noticed for about 2 weeks (at home and at the hospital), Brayden has these retching episodes.  Yes he retches all the time, which are always quite dramatic.  But the past two weeks his retching is followed with apnea episodes.  He finishes retching and then shortly after he turns blue, he turn blues all over, not just his lips.  His oxygen dips way down.  It lasts about 60 seconds.  And it happens 2-6 times a day.  The neurology team wants to see if it may be seizure related so Brayden is now hooked up to an EEG for 24 hours.  Videoed and we have to click and document the retching/apnea episodes.  Are these episodes a result of electrolyte problems? Or something else?


Lab Tech - come a couple of times a day to draw labs.  Which might be the worst part of the hospital, Brayden is such a hard stick and running out of places to get a good blood draw.  Everyone is constantly watching his electrolyte numbers.  His potassium, sodium, chloride and bicarb are the problems.  Numbers sort of heading the right direction.

Respiratory - Brayden's BiPAP and his apnea troubles.  Trying to get any sort of breathing mask on him with the EEG set up is proving to be quite a challenge.

Med Students - Yes Children's is a teaching hospital.  We found out that, currently, Brayden is the most involved child on the floor.  Which provides lots of discussion, teaching, learning during rounds and room visits, especially since Brayden does not have a diagnosis and so many things going on.  I do say, and will continue to say, that I like being in a teaching hospital.  I appreciate the thorough discussions.  Being a part of the rounds and discussions help me learn so much and understand the doctors' thought process.

The plan thus far, Brayden has been on IV fluids (that include sodium and potassium supplements) and his normal food via j-tube, trying to normalize his electrolytes.  Then Brayden should start his food via j-tube with some supplements in the food(that we are not quite sure what is in the mixture yet) and taken off the IV fluids.  He will be monitored while on this food mixture to see how his body responds.  Clearly his electrolyte troubles are not an acute problem.  Even if his numbers get to the correct place, will they stay there?  How can we keep them in the correct range?

Brayden will be in the hospital at least till Friday night or the weekend.  He is being monitored in every way.  Brayden does seem like he is feeling better.  As of yesterday afternoon, he has had more time being awake.  He is vocalizing more, expressing his dislikes and some happy noises.

Jeremy brought Carter and Luke down for a visit.  Then I headed home so Jeremy stayed with Brayden at the hospital.

Those Electrolytes

Brayden has been admitted for his electrolyte problems.  Friday he had labs and they did not look good.  Monday (yesterday), the labs looked a worse.  It was decided Brayden needed to head to Children's hospital.

We finally got to the hospital around 7:30 p.m. last night.  The ER needed to assess him to determine if he needed to be admitted or just receive fluids...well, it didn't take long because the labs the ER did and with Brayden's medical history, they determined he needed to be admitted.  So we waited in the ER and finally got a room around 2:30 a.m.

Several different doctors have come by since being admitted, not sure what specialty should take the lead.

Morning rounds and morning labs have been done.  Brayden's labs this morning did not show much improvement and some looked worse, despite the IV fluids given.  The biggest problems seem to be his Sodium, Potassium and BiCarb.  From what I could assess during the team rounds, they are assuming that (in layman's terms) Brayden's body has not recalibrated since the ileostomy surgery, so he ins (food, water, etc.) are not matching up with his outs (stool in his ostomy and his stomach drain).  As to why this is happening and how to correct it remains the big question.  The Hospitalist and team is consulting GI and Neuro as well.

He is being given IV fluids and supplements via IV, more labs done this evening.  Given his food via his j-tube.  And it is all just a waiting game.  This is not an acute problem, seemingly ongoing for Brayden so they do not want to discharge him without some longer term plan to keep his electrolytes in the right place.

You know You are a Tubie Mom

Feeding Tube Awareness Week

Yes feeding tubes seem so serious, scary and can sound like the beginning of the end.  However, I like to take the approach that we can find humor in just about anything, even feeding tubes.

Thus, you know you are a tubie mom when:

• You no longer panic that there is an actual hole right in to your child's body.
• Hearing the sound of any beeping, you immediately look at the feeding pump for an error message (for me it is trucks backing up and our dishwasher beep). 
• Hear a beep and you still look for the pump even when the feeding pump is not with you.
• You have loose syringes in purses, pockets, cars compartments, etc. the way most people find loose change or gum.  You cannot find a pen but you sure can find a syringe.
• A perfectly sized syringe makes you happy.
• Delivery of medical supplies is a little exciting.
• Your child's closet is less about clothes and more about medical supplies.
• Medical supply companies can make or break your day.
• Any measurement you now think in terms of mls or ccs, even when cooking.
• You no longer notice tubie breath.
• You are grateful for the feeding pump until it malfunctions in a way you cannot fix.  Then you want to toss it out the window, run it over, smash it with a hammer and more.  And it always malfunctions in the middle of the night.
• You know what 16 French, 1 cm means.
• You consider the Gastroenterologist a close family friend.
• Mickey - no longer means Mickey Mouse but the Mic-Key button.
• Extensions, Balloons and Buttons have a completely different meaning to you than the rest of the population.
• Your other children have participated in the tube changes...perhaps in the parking lots during their basketball tournament?
• Your other children know how to operate the feeding tube better than they do the washing machine.
• You know that smell.  The smell of formula.  Formula that has gone rogue...a leak, a spill, the tube came apart. 
• You can change a your child's button just a smoothly as you would change your earrings.
• Still wondering how poop can change every day when you child gets the same food, same amount, same time, every day.
• Your blizzard supplies do not just include milk and eggs but: Charged Feeding Pump, Bags, Formula, Water, Medications, Syringes, Extensions, Extra Buttons, etc.  Remember to charge the feeding pump (and back up pump) in case of power outage.
• Packing for any trip, day trip or week trip, is a process.
• You have replacement kits every where, just in case your child requires a change.
• You immediately identify with other tubie parents.

All to say that you are actually grateful your child has a feeding tube because it does improve their quality of life.  It gives them nutrition, ease of giving medications and it gives this mom some peace of mind.