World Wish Day

Today is World Wish Day with Make-a-Wish Foundation. a celebration day of wish granting. Find out the many ways you can help provide a wish for a child.

Our Make-a-Wish trip was more than we could have ever imagined.  So many children and families spend their days dealing with major medical issues, life altering issues, life-threatening issues...to have a wish is much more than just a trip or special surprise, it is making happy, priceless family memories.

Do you recognize this place?

Yes, Brayden was at the hospital today, a trip to the ER.  

Luke and I were out for breakfast with some friends, when we left the restaurant my phone went crazy, 10 or so missed calls.  Realizing that I seemed to not have reception in the restaurant, I scrolled through the missed calls...some from Brayden's school and from Jeremy. 

There was a frantic phone call from school.  Brayden's new j-tube was pulled out at school.  He was hooked up to his food, they were transferring him from his wheelchair, the tube's extension got caught in the hardware of his wheelchair and came out with a full balloon.  The school nurse covered the open hole and called for an ambulance.

The j-tube is much more delicate than the g-tube because it is going into the intestine and a much smaller area.  The Brayden's j-tube site still has not fully healed from the surgery.

Brayden's teacher rode with him to the hospital where I joined them and Jeremy came a bit later.  The new hole started to close quickly, at first attempt the doctor could not get something in so they got something smaller to put in and slowly stretch it a bit...while we waited to hear from the surgeon (would had done Brayden's surgery).  The hospital did not have a replacement tube but they were able to use the one that came out of Brayden.

A little maneuvering and the j-tube was back in.  A trip to radiology to check it and all looked good.  A few hours later and we are home.  We have an already scheduled appointment with the surgeon tomorrow to check the sites.

Brayden was not bothered by it at all.  Apparently making his happy noises at school, in the ambulance and in the ER.  Thank the Lord it went the tube went back in, did not seem to cause problems and Brayden was happy!

Oh there is never a dull moment around here.

One year ago today

was the day, Brayden's fabulous nurse came to our home for the first time.  She has been the best addition to our household.  Brayden (and everyone else) adores her.  She has been with us on vacations, adventures, doctors, hospitals and so on.  An honest to goodness answered prayer...someone who loves Brayden and takes such good care of him.

Having a nurse and/or respite help is such a crucial part in helping us keep balance in the family.  Brayden's needs can be overwhelming and all consuming to each and every moment of the day.  I feel like a new person having someone to help with Brayden.  I actually attend Carter and Luke's events, go out with friends, even go to the grocery store!

Since it was one year ago today that she entered Brayden's life, we surprised her with a cake and a few small fun gifts.

Back to Normal...whatever normal is

The past several days have been about recovering and quality family time (I was trying to ignore the rest of the world for as long as possible).  The events of the past couple of weeks left us frazzled and weary.  I am still processing everything and will certainly blog about it later.  But this week everyone started back to our normal schedule with school and activities, including Brayden.

Brayden is doing well, almost like you would never know what his body went through.  We are all adjusting to the two new tubes, new gear and adjusting medications.  Getting him ready in the morning and in the evening seems to take longer as we get comfortable with the new things.

We just keep adding to his list of things to do/have.

Just some of the things he needs at night time.

Brayden seems to be adjusting to the new medications without any side effects or drowsiness.  I tend to push back a little with the seizures medications because I do not like for him to be too drugged up.  Thankfully, Brayden's neurologist is on the same page.  For his seizure meds, he is on Keppra, we increased the dose of Lamictal, added Phenobarbital and Diamox (Acetazolemide).

Amazingly Brayden is handling it all very well.  He has been smiling and chatting (like little lion roars and his happy noises).

Easter we spent the day, just the five of us.  Brayden could not have been happier.  Oh how this makes my heart jump for joy to see him smile.

Home again, Home again jiggty-jig

Brayden returned home.  The neurology team, along with Brayden's neurologist, agreed to add two new medications.

I will discuss more later...going to catch up on some sleep...in our own beds.

A night of EEG

Brayden was monitored last night, through the night, by an EEG.  A couple dozen probes are pasted on all around Brayden's head...hooked up to a computer and monitor to watch the seizure activity.

Early reports are that he showed LOTS of seizure activity...whether some are his "norm" or he is having more is yet to be seen.  Then this morning he had 8+ major seizures; that I saw and pushed the call button too many times.

The neurology team gave him a dose of phenobarbital and may continue to give him more over the next several hours to help temporarily with the amount of seizures.

The neurology team is talking with Brayden's regular neurologist to discuss adding Depakote, however Depakote's side effects list the pancreas...and Braydens pancreas is already a problem.  So it is looking like phenobarbital could be added to his daily seizure medications.  Medications are still up for discussion between the keto clinic, Brayden's neuro and the neuro team.

I believe the plan is try medications today/tomorrow and watch for the effect (although Brayden's neuro seems ok sending him home sooner than later on a low dose and slowly work up to the proper dose).  Trying new medications in a dosage that Brayden may need, can cause respiratory distress and trip to the ICU.  The neurologists warned me that this is a possibility, thus why we are at the hospital trying the new medications.

The EEG has been removed, Brayden had a sponge bath and is resting peacefully (probably because of the meds).

Seizing the moment - at Children's Hospital

Sorry for the title of this post.  I could not come up with anything jazzier to talk about seizures.  Yes, last week was probably the hardest week we have had to date but more on that later.

This week, we are back at the hospital.  Yes, you read this correctly, Brayden is back in the hospital.  This time downtown to Children's National Medical Center.

Brayden has been experiencing a long series of seizures since Sunday (outside of his normal daily seizures).  Despite our best efforts at home, with a few doses of Diastat and then at the local hospital, his seizures proved to be stubborn this time.  He was transported from our local hospital to Children's in DC.

I spoke directly to Brayden's neurologist at Children's.  She shared that she was not surprised he was having trouble because Brayden did so well on the ketogenic diet, weaning him off was certainly going to cause problems.  Brayden is being admitted to the hospital for the prolonged seizures over the past few days.  The neurologist wants him in the hospital for observation and, as she said, aggressive medication changes that cannot be done at home.

Brayden and I are camped out in the neurology wing, hopefully for not too long.

Funny thing is, I was typing a blog post last night about his seizures, it is below.
The week preceding the past week at the hospital was hectic.  We decreased the ratio on the ketogenic diet.  This adjustment was the first time we saw significant change in seizures.  Brayden was having several, disturbing seizures that week, in addition to his "normal" daily seizures.  Two back-to-back seizures happened at school.  The school nurse wanted to call 911 but I was close by and came to pick up Brayden (and his home care nurse who was at school with him).


In fact, the morning we rushed Brayden to the hospital because of his feeding tube, Jeremy thought I called to say we were heading to the hospital for seizures.


Brayden then had a couple of those disturbing seizures at the hospital.  These new seizures are difficult to see at first.  We have a hard time convincing those around, that do not know him, that Brayden is seizing.  His body looks to be moving normally but watch him closely it is not voluntary movement.  His eyes are open but seem unresponsive.  Pinch his cheeks, move his head (which annoys him) and not much response.  We move him and he remains stuck.

Please pray for us.  We have not recovered much from last week.  Carter and Luke are already upset about not going to Myrtle Beach and now other activities that we planned for the week are not going to happen.  We are feeling weary.  Brayden seems to be feeling good...perhaps all of the heavy medication!?

Insurance

I spend many quality hours a week handling Brayden's insurance.  Every week we receive several papers about his insurance claims.  This one today was "nice".  To be honest, I was annoyed before I even opened the letter because of what the envelope says.

The letter inside said,

"To the Parents of Brayden Jenkins,

...we want you to enjoy all the benefits that come with better health...offering you a program...
This program is design to help you manage, maintain or improve your health..."

I think they are really saying that we are high maintenance, they do not like us and our health better improve.  And they have not even received all the paperwork from Brayden's hospital stay last week (the procedures, surgeries, doctors, specialists, PICU, equipment)!

Trust me if we could choose Health or Wellness or Prevention for Brayden we would.

The Birthday Boy

Barely 24 hours home from the hospital, just in time for his birthday. 

He is happy to be home, in his bed, with his family, a day of rest...all the presents he needed (although he did get real presents).

Carter and Luke made cards with sparkles.  They laid out all of Brayden's gifts for him to see.  Presents from the family and wonderful friends that dropped off/sent gifts.  Brayden was still pretty tired and sore, so playing with his new things will happen another day.

Phone calls from family wishing him a happy birthday.  His eyes get big and his eyebrows raise, not sure what to make of the phone.

Four years old today.  Not a baby but a little boy.

Home

Brayden is home.

Now we have to recalibrate...tomorrrow is  Brayden's birthday.

Tomorrow we were supposed to leave for Myrtle Beach to visit my grandfather.

For now, we rest on this rainy day.  Happy to have everyone home.

Making progress

Brayden is looking good.  He was started on his tube feed yesterday with just Pedialyte, then this morning was started on his formula.  Everything is flowing.

The GI doctor came by and said Brayden is on course to head home tomorrow.  The surgeon came by and gave the thumbs up.  The case manager help set us up with the new gear that is needed for the new tubes.  We are ready to bring him home!

This afternoon Brayden has gone for a walk around the floor and out to the courtyard.  And played with a fancy lighting system.

Night and Day difference

Brayden is out of the PICU and back to his room in pediatric wing.  He is looking good!

The PICU weaned him completely off the oxygen through the night, by morning he was breathing normally...meaning his airways have healed.

It is a night and day difference...struggling to breathe and back to himself.

 

I am guessing the GI doctor will let Brayden try out his new j-tube today with some fluids and work up to his formula mixture...may be out of here by Saturday?

Doing better

This afternoon the respiratory team removed the bipap machine and replaced it with the nasal cannula so that he would continue to get oxygen but not be so forced.  At first he was struggling with the change but after about two hours, he perked up, became a bit more alert and began breathing a bit better.  He is not near his baseline yet but making progress with his breathing.  If he continues to do well on the nasal cannula, they will not put him back on the bipap and he could leave the PICU for the regular wing tomorrow.  He is continuing to receive morphine and only needed one dose so far this afternoon

Brayden got a sponge bath and clean linens today, which he enjoyed.  He and everything around him showed the evidence of a rough night.  After he was all clean, we got a better look at his central line and tubes...everything is looking good.

Thank you everyone for your kind thoughts and prayers.  We appreciate all the love and support.

Please continue to pray for Brayden.  He is so tough and so frail, all at the same time.  Pray for peace and rest...for the entire family.

The morning at the PICU

Brayden landed in the PICU around 9:30 p.m. last night.  I was home with Carter and Luke, when I received a somewhat frantic call from Jeremy to drive back to the hospital.

His heart rate has been high, 160-190.  His breathing has been very difficult.  After his surgeries yesterday, he seemed to be in a lot of pain.  After several doses of morphine and one Ativan, he still was not doing well.  His heart was working hard to keep up with his labored breathing.

By the evening, he looked worse.  A team of people came in to assess him and decided to move him to the PICU.  Several things were tried...medication, breathing treatments, positioning.  He finally ended up on bipap, to help him breath.

The bipap seems to be helping a bit.  His little chest is violently thrusting up and down as it works.  The chest x-rays show that his lungs look good.  The breathing airways seem to be the trouble...due to being intubated twice and his already low tone.

Brayden was started on TPN last night so he is receiving some nutrition through his central line.  The g-tube and the j-tube are being vented since pushing air into his body could cause some problems for his tube sites.

So far this morning, his surgeon, GI doctor, respiratory team and PICU team have come through.  It is our understanding that they will work to get him off the bipap today, giving him periods of time without it on.  Once Brayden is successfully off the bipap, then we can start using his feeding tubes, hopefully tomorrow.

Brayden's body is tired.  He looks confused and with eyes of desperation looking to Jeremy and I for comfort.  Crying is too difficult for him.  They will continue to give him morphine and hopefully his will rest. 

Jeremy and I are taking turns snoozing on the fold out chair to the rocking chair to Brayden's bed.

to the PICU

Brayden's heartrate is still high.  He is still having breathing troubles.  He is being transferred to the Pediatric ICU.

Brayden came out of surgery

with lots of new hardware.

The early hours at the hospital were quiet this morning.  Brayden slept pretty well last night.  Yet, we were still not sure when Brayden's surgeries were going to take place.

After morning rounds and the posting of the surgery schedule, we found out that Brayden was scheduled for 3:00 p.m. in the OR to get his PICC line.

About twenty minutes later, he had been moved up to 10:00 for the PICC line.  A few minutes later we found out he could be wheeled from the PICC line procedure, with one team, right into another room to get his j-tube placement, with another team.  Then a few minutes after that, the surgeon and doctors decided to do a central line (instead of the PICC) and the j-tube placement during the same procedure.

All of a sudden things were moving and Brayden was wheeled into the OR.

Brayden's surgery was about 2 hours long.  The surgeon was the same doctor that had done his original g-tube/mic-key button almost exactly three years ago.

Today, the central line was done.  Brayden has a mic-key button for his g-tube (stomach) and a mic-key button for his j-tube (jejunum/intestine).  About a 2 inch incision was made so that the surgeon could cut and maneuver the jejunum for the feeding tube.

The surgery went well.  However Brayden has been in A LOT of pain.  The most pitiful gut-wrenching cry, like it hurts too much to cry.  His heart rate has been really high and very labored breathing.  It could have been because of a seizure at first so they gave him a dose of Ativan, in between the doses of morphine and they are keeping him on oxygen.  Yet his heart rate is remaining high and his lungs seem to be working way to hard.

His precious little body has been through so much the past several days.  His soft porcelain skin showing the effects of malnutrition, IVs, blood work, surgeries,...  His chest violently going in and out as he works hard to breath.  And all we can do is sit by him and try our best to comfort.

Brayden will be started on TPN through the central line tonight.  In a couple of days we hope to start fluids through his j-tube and work our way up to his proper formula mixture.  The g-tube was his original "hole" and we use that to drain and/or suction his stomach.  If all goes well Brayden could be home this weekend.

Please pray that his little body can handle all of this.  He seems so miserable.  Pray that his heart and breathing will level out without any more intervention.  Pray that Brayden's body can rest.

Hospital Plans

As many of you know the hospital is all about the waiting.  I have talked with Brayden's GI doctor, who is at the hospital this week.  Having this doctor at the hospital is a HUGE blessing.  He knows all of Brayden's history, we see him on a regular basis and he is constantly involved in Brayden's overall care. 

After talking with the GI doctor for an extended period of time, here is the plan:

• Labs and add some fat to his IVs
• Brayden will be getting a picc line.  The picc line will allow Brayden to get better nutrition while we wait for the j-tube surgery and tube feedings.  We are hoping for the picc line sometime today or tomorrow morning.  This is a procedure that will require sedation.
• Waiting to speak with surgeon tomorrow morning about j-tube.
• J-tube surgery.  Brayden will be getting a j-tube. The surgery will take place in a couple of days.  Then have a couple of day of post-op, then a couple of days to start back with the tube feeds.

Looks like Brayden will be here for a week.

Never Mind - B is back in the Hospital

After a restful 5 1/2 hours at home, Brayden returned to the hospital.  The tube was no longer in his jejunum and curled into his stomach causing severe vomiting.

Let me go back to the beginning of misadventures of getting a g-j tube placement.

Friday.

On Friday morning about 6:00 a.m.  I woke to Brayden screaming (which he does some days without explanation).  I changed his diaper quickly, trying not to aggravate him anymore, then scooped him up in his blanket and held him until his nurse arrived at 7:00 a.m.  When she arrived, I handed him over so I could get the other boys ready for school.  The nurse started to get his suction and meds going and when she lifted his shirt, she found that his g-j tube has come out several inches.  We did not know if the tube was properly placed or could potentially cause more problems, so we did not give him any meds or fluids.  I called the dr and we headed to Fairfax hospital.

We headed right into radiology (where Brayden has had many g-j tubes changes in the past).  A tube change is done on a radiology table with barium and a wire to help watch and guide the tube into the stomach and on into the intestine.

A radiologist came in and tried to get the tube properly placed...tried for too long without any success.  The radiologist called for another radiologist (who had done a tube for Brayden in the past).  The second radiologist tried...nope, nothing.  That radiologist left to call another doctor to find out what needed to be done.  The first radiologist came back and tried again...still did not get it in.

Did I mention Brayden is awake while they force a long tube in and out of a whole on his stomach?  At some point we could see that Brayden was exhausted and just gave up.

The tube was not going in.  They placed a temporary catheter in his stomach and sent us to a little waiting room to wait for a bed in the ER or on the pediatric floor.  We eventually made it to the ER, where Brayden was given an IV and finally his meds.  There we waited to be admitted.

The GI doctor came to the ER to discuss options.  It seemed decided that Brayden should have a surgery to get a j-tube.  This would mean new hole is made from the outside in to directly put a tube into the intestine.  He would also keep his g-tube.  Meaning he would have two separate tubes.

After getting settled into the room, I headed home with Carter and Luke (and B's nurse) on a Friday night during rush hour in the rain.  Over two hours to get home was occupied with phone calls from Jeremy at the hospital.

The GI doctor was planning to schedule the j-tube surgery for the following morning.  However, the surgeon refused, absolutely refused, to do the surgery...he believes j-tubes bring too many complications.  The GI doctor agreed to try and place the g-j tube endoscopically, which she originally refused to do because it is very rarely successful.

Saturday.

I drove back to the hospital in the morning with Carter and Luke to meet Jeremy.  Brayden was already in the OR with the GI doctor for the endoscopy.  Jeremy and I waited while Carter and Luke played.  About an hour later the Gi doctor emerged and said that she was unable to place the g-j tube.  However, another radiologist (who has changed B's tube a few times in the past too) was available to try.

It was decided to keep Brayden sedated while the radiologist worked to get in the tube.  I sat with Brayden in the PACU watching machines pump air in and out of him, medications slowly dripping into his IV to keep him sedated, until radiology was ready.

He was wheeled to radiology and the procedure started (I am allowed to be the room for this).  The radiologist had a poker face.  I could not tell if he was making progress or if he was having difficulty.  Finally the radiologist said, "Alright."  I am thinking...all right good, all right bad?  The radiologist placed the tube in the proper place.  Brayden now had a shinny new g-j tube.

He was wheeled back to the PACU and then up to his room.  We met with the GI doctor and she was comfortable discharging him, as were we...confident that the tube placement was working.

Brayden arrived home about 6:30 p.m. on Saturday.

Saturday night/Sunday morning.

Brayden was in bed at 7:00 p.m., meds given through the new g-j tube and he feeding was hooked up for the night.  Jeremy and I crashed in bed at 7:45 p.m.  I awoke about 11:00 p.m. to Brayden coughing.  I just assumed that he was coughing from being intubated that day.  I dosed off for a bit and realized that Brayden was still coughing.  I jumped out of bed and could smell his formula before entering his room.  I flicked on the lights and found Brayden laying in a pool of vomit.  He was vomiting his formula, which should be impossible since the tube should be in the intestine...which means the tube probably crept up into his stomach.  By this time is was 12:15 a.m., we called the GI doctor at the hospital, she told us to start heading in.  Jeremy gave Brayden a bath while I got ready and we were on the road by 12:30 a.m.

Arrived at the hospital and admitted back into the same room.  Brayden started vomiting again, this time blood.  An IV attempt that failed and then an IV that stayed.  A chest x-ray to check if he aspirated from vomiting.  An abdominal x-ray to see the g-j tube placement.  By about 4:00 a.m. we turned off the lights in the room for a couple of hours of sleep.

Sunday morning.

Brayden vomited more blood, yet another linen change.  Then the GI doctor came to the discuss the evening events.  The abdominal x-ray showed that the tube was not properly placed.  She removed the g-j tube and put in a temporary g-tube and is venting his stomach through the g-tube (stomach).

The plan is yet to be determined.

Today we watch to make sure he does not continue to vomit blood.  Tomorrow we will speak with the GI doctor and another surgeon about surgery for a j-tube.

Please pray that we find a good, long-term solution that will benefit Brayden's health and feeding.

Home from Hospital

Brayden just arrived home...with a functioning g-j tube.  After a series of failed attempts and unfortunate circumstances, we are home and Brayden has a tube.

Lots more details to come, we are just too tired right now.

Feeding to Hospital

Brayden's G-J tube came out yesterday.  The doctors could not get it back in.  He has been admitted to Fairfax Hospital.  I will be back with the details.  Pray that something will be figured out.

Losing, testing, no gain

I am writing this post with a heavy heart, a large sigh of prayer and an attempt to control my crazy mom inner voice that wants to freak out.

Brayden is still not gaining weight.

A few weeks ago, we collected yet another set of stool samples...another bag of containers filled with poo.

Those results came back and Brayden is still not absorbing enough.

We did not change the ketogenic diet immediately because Brayden hwas sick with strep and then we went out of town.

Now we are back, Brayden still has not gained any weight.  We changed the recipe for the ketogenic diet, still planning to wean him off; increasing the carbs and decreasing the fat (the fat is harder to absorb). 

Brayden is struggling with malnutrition and I am getting concerned that it is getting serious.  A little over a week ago, Brayden started losing lots of hair...hair all over his bed covers, the car seat, his chairs.  Then his skin is peeling.  His is so thin (despite the look of his cheeks), bones protruding and causing discomfort.  All tell tale signs of malnutrition.  The past year of his troubling sleeping and misery all could have been because of starving. 

I am not convinced that weaning him off the ketogenic diet is the complete answer...we are half way through the weaning and no change in his weight.  The ketogenic diet has been instrumental in his seizure control.  Since starting the wean, Brayden has started with new seizures, more disturbing seizures, a couple of times that required additional medication.  Thankfully these new seizures happen only a few times a week (still having his "normal" seizures every day).

So I started to panic about the hair loss, skin peeling and seizures.  I put calls into the doctors.
1.  Ketogenic team - Neurologist and Nutritionist who consult with Brayden's primary Neurologist.  They said to continue the course and wean off the diet, paying close attention to changes in seizure activity
2.  GI doctor - increasing the pancreatic enzymes and ordered bloodwork to check the pancreatic levels
3.  Pediatrician - who helps me consolidated and interpret all of the information coming from the different doctors and test.  Order bloodwork to test his thyroid, a possible cause for the weight loss.

Brayden was a champ getting his blood taken (I call and request certain people, so we minimize the sticking).

The majority of the bloodwork came back .  Brayden's pancreatic levels are the best they have been in a really long time.  The thyroid is looking good.  The results are good...which is good and bad for Brayden, if something was coming up wrong then it could be helpful in deciding what to do in order to help Brayden gain weight (i.e. if the thyroid was a problem there are medications that can help).  The discussion for TPN (nutrition via IV) is starting to come up but we are not there yet.

Brayden will continue weaning off the diet, praying that will help...

Oh, it makes me terribly sad to see his hair all over the place.  Is he really starving and he cannot tell us?  How is this compromising his health, comfort, etc.?  Brayden has always had such thick hair.  I joke that God gave him such thick hair to cover up his tiny head (from microcephaly) and balance out his super chubby cheeks.  I constantly run my fingers through his hair, it is just as comforting for me as it is for him...

Brayden's April Fools

Brayden (with help from his nurse) played a little April Fool's joke on his brothers.

Brayden's nurse told Carter and Luke that she needed them to sit with Brayden while she gathered wipes and a diaper because Brayden needed to be changed.  Then she told them that it was a big blowout and she needed their help.  When she pulled off the "dirty" diaper, Carter and Luke realized that Brayden pooped Skittles!  Skittles filled Brayden's diaper...they thought it was hilarious!

April Fools!

(Pretty sure Brayden was wondering...what in the world was going on...)