A new ballgame...nursing at home

Dear friends and family,      

     We have seen lots of answers to your prayers!  Thank you for being a part of this journey.  

     John had a terrible night on Wed. night at the hospital.  He couldn't keep anything down, including his medication until the proper nausea medication was ordered in the wee hours of the morning.  This enable him (all of us) to sleep for several hours in a row.  YEA!!!  

      Thursday was a better day. He actually asked to go to the play room.  He and his Grandma Menefee spent a happy hour playing with puzzels, etc.   Early afternoon, John kept his formula down given through his feeding tube.    And since he has a feeding tube, we did not have to wait in the hospital until he was able to drink enough liquid with his sore mouth.  This is a good thing since he is over-protective of his mouth currently and is hardly even taking sips of water.  So, we were home on Thursday evening by 9:00 pm.  Not only were we grateful to sleep in our own beds, but we are happy to be released from the expense of another night's hospital stay. 

      At home, his pain has been reasonably controlled by the regiment of medication they prescribed for him.   Yet he is generally miserable.  His lips are still swollen and he is drooling constantly as he is afraid that if he swallows, he will feel pain.  He is low energy and will hardly talk due to the tape on his  upper lip.  

     Today, Saturday, his friend Sophie came over to cheer him up.  He is still not himself - almost no smiles throughout the day.    So playing outside in the water with Sophie was a treat for all of us.   

     A huge answer to prayer and a surprise to us has been his self-control to leave his fingers out of his mouth.  We told him honestly that if he did put his fingers in his mouth that he would hurt what the surgeon had done and have to go through it all again.  The nickel dropped for him.  In the big picture this means that the arm constraints that keep him from being able to bend his arm are only needed during his nap and at night.  John has been super cooperative when we need to put these on, for which we are grateful.  

     Thank you for your prayers.  We have a follow-up Dr. appointment in Denver on Monday, June 3rd.  We will know more about the overall result of the surgery then.  In the meantime, please pray that there will be no injuries to the mouth and lips; that they will heal perfectly and that we can make the time for John as comfortable as possible.  

Recovering in hospital on May 24th.  

Home with tape mustache, which serve as sutures on May 25th. 

Surgery completed...recovery's a bummer so far...

Dear all,

Thank you for your prayers for John and his medical team today.  And thank you for praying for John's Mom and Dad also!  Dr. Allen reported that he closed the hole in the back of John's palate, overlapping the muscles in the back  of his mouth.  He hopes this will strengthening the closure and put the muscles back into alignment.  He also elongated his palate, which will help John with pronunciation.  In addition, he did some major repair on John's lip.  He reconnected the two muscles on the top lip, cleaned out the scar tissue in John's nose and brought the lip itself into alignment.

We knew were in good hands when a Dr. in his fourth year of ENT residency and the anesthesiologist both praised Dr. Allen as an excellent surgeon.

John has had a hard time since the surgery.  Although his pain is fairly controlled, he has been stripped from his primary self-soothing method - that of sucking his fingers.  He hates the tape on his lip, the name arm band on his wrist, the port in his arm and even the oxygen blood monitor (the red light) on his toe.  Any time a nurse comes into the room he starts crying.    Poor boy.  It might be a hard night...we are praying for a better day for him tomorrow.

Please pray that he will submit to the medical protocols and also the need to keep his fingers out of his mouth.  

We are grateful for your prayers and support.

Sincerely,
Laurie and Ron

John's surgery May 22nd.

Dear family and friends,

Thank you for your prayers and encouragements regarding John's upcoming surgery.  John's  surgery is May 22nd @ 1:00pm.  It is scheduled for four hours since Dr. Allen will be closing the hole in his mouth and revising his cleft lip repair to include the muscle of the upper lip (his original repair was done in China and they only repaired his lip cosmetically rather than functionally).  At four and 1/2 years old, this will be John's seventh time under general anesthesia.  And from what we were told by the surgeon, there is an 80% chance that the hole in the back of his throat will close correctly this time.  

Your continued prayers are appreciated.  We will be using this blog to communicate updates and specifics. 

Our main prayer needs currently are: 

1. For the hole in the back of the throat to stay closed and his lip to be successful.  
2. No complications during and after surgery
3. For wisdom and creativity in meeting his emotional needs - John is VERY fearful of any medical intervention due to prior experiences.  
4. That he would not regress emotionally or in his attachment to us (this has happend after his previous major surgeries). 

Thank you to your prayers and support. 

Sincerely,

Laurie and Ron

PS.  Since we haven't updated is so long, I thought I would post some recent photos taken during our ministry trip to Budapest, Hungary.  

John took advantage of his Mom and Dad's attention being directed to shopping for T-shirts rather then keeping an eye on him in the store.  This is his favorite photo from our trip!   

Avoiding bedtime...

Making Mommy laugh, which he does often! 

So proud to have matching shirts with Daddy.  Instead of using the word "matching",  he refers to it as "same, same"!  

John - expressing his usual happy disposition.  

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!  

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  

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

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.