Sunday, September 23, 2012

Good days...harder nights...




It has been a week since we returned home from the hospital.  Lots of changes have been required for the three of us to adjust to additional feeding schedules.  John has been vigilant about asking if what we are doing to him is going to be an "ow" or not - including dressing him for bed, etc.  

During the day, he doesn't put up too much resistance to his bolus feeds - apart from holding our hands so that we can't place the tube into his "button" (whole in his stomach).  However, the night feedings that use a pump on an IV poll have been emotionally difficult for him.  He wakes up crying every night and it can take a long time to settle him down.   He was diagnosed through a biopsy of his stomach as having an H. pulori infection, which we are now treating with several medications through his stomach tube.  So, it is possible that he is having some pain/discomfort from the infection.  It is more likely, though, that he just doesn't want to been connected to something during the night.  

The poll itself has been an item - something he regularly said "night, night" or "good bye" to in the morning when he realizes he is free from it.  In order to create less anxiety for him, we covered the poll up with his favorite swimming towel (which happens to be Angry Birds).   

Apart from this, he is himself - finding new ways to play with our air pump and being goofy in this hat.





According to our scales John has gained more weight.  However, he is eating very little with his mouth.  This is big time discouraging as we have spent hundreds of dollars and man-hours helping him eat.  We are working with the doctor on finding a balance between tube and mouth feeding so that he will be hungry enough to really eat meals.  

Your continued prayers for his development and growth are much appreciated and for good nights of sleep!  

Sunday, September 16, 2012

Going HOME!!!


Hey, they say I can go home today! 


(for some reason my silly Mom can't get me loaded right...)





John is his real self today - acting like Rambo on his pink tricycle again!  Glory!  His Mom and Dad think they can run the feeding pump so we got the green light to go home. 

A dear friend who has been through this and MORE, warned us that her first days home with her son's new  feeding tube were the hardest adjustment.  So please continue to pray for us as we all adjust to new routines and as John continues to heal.

Your prayers and support have made a HUGE difference.  We have experienced God's peace and presence in the midst of being in a place we would rather not be required to repeat.

Gratefully yours,
Laurie, Ron, and Grandma M  

Saturday, September 15, 2012

a better day...

John...resting and still
John has had a much better day today: no fever, able to keep food down and pain controlled.  He even ventured out of his room with a LOT of prodding to ride his favorite pink tricycle.  This is remarkable since this morning he was afraid to even stand on his own two legs.  He is skiddish about everything possibly causing pain.

Good news from the MRI is that John's brain and pituitary gland are normal, which means that his Human Growth Hormone deficiency will be treated with shots for the next 15 years. 

John's Mom and Dad were trained several times today on how to use his "Infinity"  and "Joey" feeding tube pumps.  This includes being introduced to terms like "priming" and "extension tubing", plus using our math skills to determine rate and pulse time.  We received our own IV pole that will now decorate the room John sleeps in.  My friend, Robin suggested ivy and Christmas lights might be an appropriate camouflage depending on the season. Any other suggestions will be considered as well. 

We are hopeful John will be released either Sunday or Monday.   We have had excellent care from the Dr.'s and nurses, CNN's and Technicians yet getting used to  being available on their schedules hasn't been easy.   It is the constant feeling of being "on call".   Home will be a wonderful treat. 

Thanks for your prayers and support.  We have experienced much grace and peace. 

Sincerely,
Laure, Ron and Grandma M


Friday, September 14, 2012

Long, Busy Day Today

John, his parents and Grandma M have had a very busy day today.

Grandma M and Ron got up at 4 a.m. today so that they could be at the hospital before John went in for his Pituitary Gland scan MRI.  We arrived around 6 a.m. so we could spend about a half hour with John, Laurie, and also pray.

John left his room around 6:40 a.m. to go to Radiology.  He was entertained along the way by playing with a little green, inflatable dinosaur that his Grandma and Grandpa Besonen sent him.  He thoroughly loved making his Da Da blow up the toy...only to deflate it so Da Da could blow it up again.

John was wheeled into the MRI room around 7:10 a.m.  For various good reasons, Da Da was nominated to go in with John and stay with him until he was sedated.  John cried out of fear and anger, but he quickly fell asleep.  The MRI took about an hour to conduct.

After the MRI, John was wheeled directly into the operating room so that could remain sedated.  The GI doctor checked out his "innards" with a scope and made sure everything was OK.  She then guided the surgeon, from inside the stomach, to where the incision was to be made and the feeding "button" was to be placed.  All went well and it took less than an hour to complete.

John woke up angry and a little confused in the Recovery Room.  He has done this in all three previous surgeries.  He is a little disoriented when he wakes up, and is angry when we are not already there to comfort him.  He eventually settled down.

The nurse that took care of John in the Recovery Room has had a lot of similar experiences to us.  She has adopted two Chinese children from Hunan Province (she is Chinese herself).  She used to be a missionary in East Asia.  She also attends the same church as we do, New Life Church.  We had a very good conversation about common experiences in raising medical special needs Chinese children.

John was wheeled back into his room around 10:30 a.m.  He immediately complained (cried) of pain and began shaking.  We tried to feed him some water and light food.  Within a half hour, he had thrown up everything he ate and drank all over his mommy.  He did this three times this afternoon and evening.  He also came into fits of severe pain.  The medical personnel think it is at least partially due to the air used to inflate his stomach during the operation, as well as disrupting the stomach lining.

John has had about three doses of pain medication.  Each time it settles him down and lets him sleep.

His IV stopped working so they had to re-insert it in another location.  It took two tries, which caused a lot of crying and pain for John.  We felt so bad for him as we held and comforted him during this time.

He has become de-hydrated so they have started him on an IV this evening.

This evening he is running about a 101.5 degree fever.  They are monitoring this and are trying to determine if he needs antibiotics.

Everybody hopes that he will be much better tomorrow.  We surely hope so because it's been a long day for everyone.

Please pray for John's complete healing and that he has no complications.

Thursday, September 13, 2012

Big day ahead...

John's nurse Donna with doing his bolus feed  (think of it as an after meal meal).


John would like to proudly announce that since he received his nasal feeding tube, he has gained 1 lb! WOW! This is huge progress and means that the green light is on for the placement of his G tube (the one put into his stomach) tomorrow, Friday, Sept. 14th.  

It promises to be a long day as he will get an MRI of his brain @ 6:30 am and then get his tube placed.  We found out a few days before we came to the hospital that John has a Human Growth Hormone Deficiency (HGH).  This means he will need a shot 6 days/ week for the next 15 years (until his body has stopped growing).  We were advised that the medications for this deficiency are time tested.  SO when we get home from this hospital stay, we will be trained to mix and administer Humatrope on an almost daily basis. 

Although this news felt overwhelming for a number of days, God's timing of John's feeding tube has been confirmed as essential through this discovery.  The Humatrope will cause his bones to grow, which means he will need even MORE calories than he does currently.  And since he was getting only 50-60% of his daily calories through eating now, he would have an even greater need for help in feeding with taking the shots. 

The reason that the MRI is scheduled is that (HGH) can be caused by a couple of reasons.  One is a tumor on his Pituitary Gland and the other is that the formation of his entire mid-line of his body was defective (i.e. his cleft lip and palate are a part of this also).  So the MRI is required to rule out the possibility of a tumor. 

We are grateful we were able to have the MRI and the g-tube surgery at the same time so that it reduces the amount of anesthesia and the "trauma" that comes with these procedures of a child.

Your prayers are making a HUGE difference!  Thank you for your support. 

Please pray
  • That the placement of John's feeding tube goes perfectly
  • That his pain will be controlled well
  • That since John will not be able to eat tomorrow and will also not receive feedings through his tube yet that he makes it through the day with minimal discomfort.
  • That he will not be too upset that they are not taking out his nasal feeding tube for several days to insure the one in the stomach works.  (He has asked a number of times to have it taken out and also to go home).  
Thanks from the pit crew,
Laurie, Ron, and Grandma M (Menefee)




Wednesday, September 12, 2012

First day...John likes the CNN because checking his vitals involves "no ows".

John with nasal feeding tube...he LOVES this small pink tricycle with his balloons attached.  What a trooper!
John was able to tolerate the placement of the nasal feeding tube last night.  He didn't like it one bit and fought it hard and cried his eyes out.  But he settled down by late evening and had an overall good day today.

So far the nasal tube is still in its correct place.  So no contest winners yet!

Whenever the medical personnel come in to do blood pressure checks, he says, "No ow" to indicate it won't hurt.  When they bring him to the procedure room to do blood work, he yells, "NO OW!!!" so he has no needle pricks...he hates needles.

Our GI doc came in today.  She said the good news is that John has already started to gain weight under the nasal feeding tube.  The bad news is that she said John is getting only half his needed calories from eating food, so the stomach tube will definitely be needed.  She also said with John's upcoming Human Growth Hormone Therapy, the stomach tube nutrients will be even more needed in order to provide him all the nutrients he needs for growth.

The GI doc said the stomach tube surgery will be Friday morning and if everything goes as planned, he will be released from the hospital on Sunday.  Praise God!

She said John may even be up to returning to school by Monday, but we are going to see how he is doing before making that commitment.  He may appreciate one day of additional recovery given his long educational career ahead of him.

(Ron post)

Monday, September 10, 2012

I (Ron) am writing tonight in place of Laurie.  She is doing an incredible job of serving John and I by sleeping with John in his hospital room tonight.

We checked into the hospital around 10 a.m. this morning.  Registration took about an hour to complete.  John and I played in the lobby, along with Grandma "M" while Laurie filled out the mountain of paperwork.  John was checked into his room around 11:30 a.m. 

For the next hour or two he was greeted by a myriad of hospital personnel asking medical questions, and giving us information on how to navigate our next 7 - 10 days in the hospital.  John was finally able to eat around 1:30 p.m. and was ravenously hungry.  He ate very well.

The GI doctor wants to monitor John's calorie count over the next 24 hours to determine how much he can be helped by a feeding tube.  So there will be no nasal feeding tube the first night of his stay.

We were told that John couldn't go outside to play for at least a week, which made us very disappointed.  We have no idea how walking the floor, playing in his room, and playing in the play room is going to satisfy John for the duration of his hospital stay...needless to say, we may all be climbing the walls after a few days.

After a long first day, all of us are already exhausted.

Tonight, the night nurse came in and told us her routine for John.  She will be coming in at 11 a.m., midnight, and 4 a.m. to monitor John's vital signs.  She will come in at 5 a.m. to apply a numbing agent to John's elbow and wrist areas to get him prepared for bloodwork.  Needless to say, both Laurie and John will probably get very little sleep tonight.

At 6 a.m. tomorrow (Tuesday morning), the nurses will come in to take John to a medical procedure room and do a large blood draw.  This will help them determine organ function, etc. to help them in John's upcoming surgery.  John becomes very angry when someone pokes him with a needle for bloodwork.  This makes the procedure that much more difficult since when he's angry, very little blood comes out of his arm, prolonging the procedure. 

The GI doctor wants to have the nurses insert John's nasal feeding tube Tuesday afternoon/evening.  This is one of the events we are dreading since it can be a painful and very uncomfortable process. 

The idea is that the GI doctor wants to monitor how much weight John can gain by having his diet supplemented by nutrients fed by the nasal feeding tube.  If he gains weight under this scenario, then there is a good possibility that he will gain weight by using a stomach feeding tube.


Laurie and I have our doubts that John will let the feeding tube stay in his nose.  We believe he will get upset and just pull it out. 

As a part of this, we want to hold a contest.  The goal of the contest is for you to guess how long John allows the nasal feeding tube to stay in.  Please provide us with your estimate by 4 p.m. Mountain time on Tuesday.

The person guessing the closest day and time, wins several fabulous prizes.  First prize is an all-expense paid trip to Darwin, a veritable metropolis in Central Minnesota (approximately 60 miles west of the Twin Cities on Hwy 12).  It is only seven miles east of Litchfield, the true Lake Wobegon of fictional lore....but that's another story for another time.

While in Darwin, the lucky winner will receive a personalized tour of the largest twine ball in the world at the Twine Ball Museum.

He/she will also receive an all-you-can-eat lutefisk dinner at one of Litchfield's Norwegian Lutheran churches during the Christmas season.  You may even be a guest of honor at the head table, if the Lutheran's feel like calling attention to themselves...which historically has never been the case.

So please make your predictions as early as possible.  And by the way, there is no second or third prize.

Offer Terms and Conditions:
You must be present to win.  No animals will be harmed in the making of the contest offer.  All lutefisk ingredients are guaranteed fresh.  There are no hormones or antibiotics in any of the food ingredients.  Offer not valid to friends and relatives of the founder of the Twin Ball Museum.  Check with the state in which you reside for any additional terms and conditions.  No disrespect is intended toward the Twine Ball Museum, Lutherans or Norwegians, and toward the (few) lovers of lutefisk.


Prayer Requests:
Please pray that the insertion of the nasal feeding tube goes smoothly and that John tolerates the feeding tube well.  Please also pray that John does not get angry at the nurses, and at us.
Please pray that John doesn't pull out either feeding tube, the nasal tube and the stomach tube.







Sunday, September 9, 2012

Preparing for John's Hospital Stay...

Sunday, Sept. 9, 2012

Despite a number of interventions, our son John (who turns four in November) continues to be significantly underweight.   Supplementing his eating with a stomach feeding tube is our recommended next step.  We check John into the hospital at 10 am, Monday, Sept. 10th.  His first day will likely be calorie counting and consults with nutritionists, etc.  His second day, they will insert a feeding tube in his nose.  Besides torture, the purpose of this is to insure that placing a feeding tube in his body will help him gain weight.  Stay tuned for details on the contest to guess how long it will take before John pulls out his nasal feeding tube (valuable prizes will be awarded).



If all goes as expected, John will have his stomach tube placed on Friday morning, Sept. 14th.  

My (Laurie's) Mom has come from NM to help and after her assistance for a 1/2 day I already felt like her trip was worth it. 

We plan to daily update this blog with information and prayer requests.   You can sign up for automatic updates on this site. 

 Please pray:
  • that John accepts the hospital environment - he is in a "lock down situation" and is not able to leave the wing of the floor he is on (despite our assurances that he is not a flight risk). 
  • Pray that Ron, Helen (Laurie's Mom) and Laurie all work well together to support John. 

 

 The "little Emperor" has commandeered a "Radio Flyer" wagon during our hospital trial run today. 

 

 Labor Day - 2012 Colorado Springs Balloon Festival.   John has LOVED hot air balloons for some time so he was like a kid in a candy store.  He has been asking if he can ride one for months.  We currently use this goal of his to motivate him to eat saying that in order to be able to ride in a hot air balloon, he has to grow big, strong and tall. 



                           John's Aunt Net and Uncle Jaime came for Labor Day.  He had great fun!

And a long time passes...John's bio


                                                John's First Day of Preschool - Aug. 27,  2012

 Things that I love:
  • playing in the water
  • balloons of any kind
  • pumpkins
  • reindeer
  • Thomas the Train (especially the T-shirt that I insist on wearing several days in a row)
  • exploring new  places
  • climbing and swinging on play equipment outside
  •  my Mom and Dad's full attention 
New Experiences that I have had this year: 
  • took a ride in a boat at the Besonen Lake cabin
  •  rode a live pony at the zoo
  • touched a hot air balloon
  • learned to ride a tricycle 
  • swimming lessons at the Y - (I like everything but going under water)