Tuesday December 13th, 2005

Afton could not keep any fluids in his body on Monday so we made a trip to the emergency room.  He was soon admitted to the hospital early Tuesday morning and we are now waiting for a diagnosis. 

Friday December 9^th, 2005

Afton had successful surgery yesterday and today he is recovering in his hospital room with pain meds and formula.  Two surgeons preformed separate procedures.  The ENT Surgeon probed Afton's nasal cavities and trach region.  He found that Afton's nasal passages are growing and would like us to schedule another scope in the spring.  The General Surgeon performed a short and successful gastrosomy, which is an incision in the stomach for a permanent solution to feeding and medicine delivery, and had Afton in recovery by late morning.  We expect to have Afton home on Saturday.  (Update:  Afton made it home on Saturday Dec 10th)

Wednesday December 7^th, 2005

We met with the anesthesiologist today and Afton is scheduled for surgery first thing in the morning.  The procedure will last about an hour and a half.  We will be rooming with Afton overnight tomorrow at the hospital.  We will try to update the website from the hospital.

Sunday December 4, 2005

Afton had a cold all last week but he woke up feeling better today.  We had to switch seizure medications last week because the first perscription seemed to cause more harm than good.  He is having about half as many seizures as he was before although, we do not expect to see his them go away entirely.  We are thankful that he is having them less often but it is very difficult to watch him go through it.  We loose him for a while. 

We will be meeting the anesthesiologist on Wednesday to see if Afton is up for surgery on Thursday.  An ear nose and throat surgeon is going to take a look at Afton's nasal passages at some point during the surgery to let us know if they have grown.  His findings may give us an idea of when we can expect Afton to breathe through his nose instead of through his trach.    

Tuesday November 22^nd, 2005

The EEG confirmed that Afton is having infantile spasms and the Neurologist prescribed a daily dose of Zonegram, a capsule, instead of ACTH, an injection, because of a conflict with another medicine that Afton is currently taking.  This also meant that Afton did not need to be observed for 48 hours because the ACTH had more cause for possible side effects.  We had Afton home and dosed around 9PM.  After 24 hours there has been no improvement in seizure activity and we do not expect it for a while.  The orders are to increase the dose weekly for three weeks.

Aftons seizures look like the startle reflex in slow motion.  His eyes glaze over and start to roll and his neck arches back and both of his arms slowly extend from his waist to over his head.  He goes back to a normal state and then it starts over about every eight seconds.  This lasts for about 5 minutes.  He goes through this every hour and a half to two hours whether he is awake or asleep.

The doctor expects that the infantile spasms will go away but they will most likely be replaced by more severe seizures.

Afton is going to concentrate on turkey and stuffing for the next few days - gobble gobble.

Sunday November 20^th, 2005

Afton started having seizures a few days ago.  His Neurologist is scheduling an EEG for tomorrow and claims that ACTH, Adrenocorticotropic Hormone, injections are effective for "infantile spasms".  Afton will be admitted to Children's Mercy where he will be monitored for 48 hours if this turns out to be correct.  We will post updates daily.  Afton is also scheduled for Gastrostomy Surgery on December 8^th.  This will allow us to discard the NG-tube that is currently located on his face and through his nose to his stomach.  The new tube, a G-tube, will go through his abdomen and directly into his stomach.

We have many pictures of Afton enjoying Halloween, friends, care workers, and family to post as well as a whole month of updates.  He is growing nicely. 

Friday October 21, 2005

Afton is handling his formula much better this week and is sleeping a little more sound.  He seems to be fascinated with his surroundings such as the colors from the television and the familiar sound of voices from the kitchen.  His face lights up when he trades from the arms of one of his parents to the other.  He smiles when he is kissed. 

Tuesday October 3, 2005

Afton had his pediatrician visit yesterday for his six-month checkup and immunizations.  He weighs 11 pounds 4 ounces and measures 22.5 inches tall!  That is real progress!  The Doctor was happy to hear that we have not had many emergencies but was very insistent that we keep Afton away from situations that could lead to catching a flu virus.  We agreed to have the entire family (all three of us) sign up for the flu shot as to avoid any plastic bubble scenarios.

     Afton has recently learned to laugh.  When he feels well, we can always get a smile out of him. 

Update: Afton's concert pictures are posted - click on the link above.

Tuesday September 27, 2005

Thank you, thank you, and thank you!  Afton's Concert on Saturday night turned out to be a great success!  The event was incredibly well organized and executed.  The music was fantastic and the attendance was high.  There are so many people to thank starting with the organizers: James Hershberger, Rod Galpin, Tara Matthews, and Chris Bowers.  The bands: Beth Vernon and Andy Oxman, Milkman Daddy, and Six Months In.  The volunteers: Angela Harris, Jim and Leslie Bowers, Tina Dermatt, and Tracy Huffman.  The Sponsers: Clancy's Cafe & Pub, Tims Pizza, Will Patterson Photography, Independence Audio, Hy-Vee, Jin Wang from the Kansas City Royals, Centerline Volleyball, Sandy Gravilles Nails and Tails, State Beauty Supply, Hollywood Tan, Bolero, Soundworks Teaching and Recording Studio, Bella Gente Hair Studio, and a few other individuals that donated items.  Promotion: Jean Gard & Blue Springs School District and 90.1 FM's "Spotlight Sessions".  Thanks to Mendi Winslow for helping James create the flyer.  All the attendees that decided to share their Saturday night with us. 

We feel blessed to be surrounded by a community of such caring and amazing people.  Afton is in good hands and excellent company.  We thank all of you! 

This is the last week for Afton's night nursing visits.  Please check back for the latest pictures from the concert.  

September 8th, 2005 

More on our sneaky friends... we found out that the "Afton's Army" T-shirts were originally going to be the name of a volleyball team and the idea just grew from there.  Instead of having a few shirts printed up for the team they had 100 shirts made and are selling them on Afton's behalf.  There are still some shirts available if you are interested you may contact Rachel Galpin by e-mail at rachgalpin@hotmail.com . 

These T-shirts will come in real handy because Afton's same sneaky friends have organized a silent auction and benefit concert.  Afton's concert, named Afton Aid, will feature local bands including:  Beth Vernon and Andy Oxman (Duo),   Six Months In,  and Milkman Daddy (bands are listed in order starting at 7:00PM).  

The concert will be held at:

     THE JACKSON COUNTY CONFERENCE CENTER

     2111 Television Place

     Kansas City, MO 64126   

     Come out on SEPTEMBER 24^th  doors open at 6:00 PM  and festivities start at 7:00 PM. 

      http://maps.google.com/maps?q=2111+Television+Place,+64126&spn=0.018133,0.034450&hl=en 

Organizers: Chris Bowers 816-517-1125, Rod Galpin 816-699-1228, and James Hershberger 816-213-5503

We are absolutely amazed at how thoughtful, generous and supportive our friends, family, and even those we don't know have been over the last few months.  Before we even learned about the T-shirt and concert surprise, the Kindberg family, of Blue Springs and owners of "Hollywood Tan", raised and matched some money for Afton's piggy bank.  We don't even know how to begin to thank you all for your unconditional kindness and thoughtfulness - from the bottom of our hearts a HUGE Thank You and we love each of you very much!!!   

How is Afton?

We could not get Afton to sleep for a few days after the party.  It was not due to all the fun and excitement, but rather, the gas, constipation and horrible cough he had developed.  He was so uncomfortable that we decided to make a trip to the emergency room on Saturday night of August 27^th.  After six and a half hours, two sets of chest x-rays, lab work, blood cultures, careful observation and lots of prayers all of the tests came back negative.  We left with a clean bill of health and were able to breathe a sigh of relief.  A week later the pain started to flare up again and we decided that we would try yet another formula.  Our thinking was that his symptoms could not get any worse than what he was already experiencing so we switched to nutramigen, or "predigested" formula.  We are not sure as to who digested this stuff in the first place, but since Afton's Pediatrician recommends it, we thought we would give it a chance.  This threw his system completely off and we ended up with the same pain and liquid stools.  Mom decided to go with a fifty-fifty blend of goats milk and nutramigen formula.  This has cured the pain but we have not yet reached a happy medium.

We hope to see you at the concert on September 24^th! 

August 25^th, 2005

Afton's friends are sneaky.  Clever people with huge hearts... and very sneaky.

We invited some families over for BBQ tonight to celebrate the birthday of our friend Rod.  Our first guests entered our house wearing matching t-shirts that read "AFTON'S ARMY".  We knew that some of our friends had used this name for their volleyball team earlier in the summer and they had some t-shirts printed up, but we did not realize there were so many t-shirts left over.  We both asked, "Where can we get one of those?"  The standard answer was, "we might have a few left for you."  Something sneaky was brewing.

I'll have to get back with you on this one a little later.

August 2^nd, 2005

Good News!  Today, Afton's insurance company has decided to overturn their decision regarding his private/skilled duty nursing.  This means he will have a night nurse with him at the home every night for the near future! 

Afton is guzzling down goats milk this past week.  Yep, real goat's milk from a real goat.  He seems to be enjoying this much better than any type of formula, including soy.  His Pediatrician did not seem to mind so his mother jumped right on the goat milk craze that is sweeping Jackson County.  Here is exactly how it works:  Rod, the Farmers Father picks up the goats milk from a farm in Sibley, MO, and takes it to work with him in Oak Grove, MO and drops it off with Todd, a friend of ours.  Todd keeps the milk cool until he drops it off to Afton in Blue Springs, MO, which is on his route home to Lees Summit, MO.

Pooping is hard work though.  All that milk eventually has to find a way out and that is when the fireworks really begin!  Mom has been adding a little dark Karo syrup to a few bottles a day and that sometimes helps, but for the most part Afton is uncomfortable very often because of constipation.  She is now giving him aloe vera juice in place of the Karo syrup to see if it will be more effective and productive...we will keep you updated. 

Happy Birthday to Afton's deceased grandpa John R. Jacks of Sedalia and Moberly, MO.

Monday July 11^th, 2005

How is Afton?

I like answering this question.  Lately I respond to it something like this.  "You would never know that anything is wrong with him."  He fuses sometimes when he tries to make a dirty diaper or when we handle him with our cold hands.  We have to burp him often during his feedings or he becomes restless and will sometimes spit up.  I am sure these are everyday issues with most babies.  Next, I imagine we will be dealing with teething pain.  His sodium levels are normal and the medications seem to be working as prescribed.  He still need help keeping up with his meals.  By day, he eats by bottle and at night, he feeds by tube.

How are Mom and Dad? 

We are grateful.  We are enjoying our sleep when a night nurse or a grandmother looks after Afton.  Shauna is officially a stay at home mother and I have become an unassuming workaholic.  Baby time is bittersweet and this is a very happy time for us.  His insurance company only approves Aftons home nursing, called "In Stay" until the end of July.  His growth hormone coverage is still in appeal as well.

Tuesday June 21, 2005

Afton has had a stomach virus since Thursday night and just now seems to be getting over it.  He has been acting very restless and irritable.  His Pediatrician had us give Afton "pedialite" to help him cope with the stomach pains.  We have had a rough few days and nights helping him try to fight this off.

The Night Nurses are meeting with us today to give Afton an assessment.  They could be spending the night as early as tonight!   zzzzzzzzzz

Thursday June 16th, 2005

First Steps, Reach for Kids and Childrens TLC all met with Afton and us on Monday to develop an in-home plan for therapy for the next six months.  They have agreed that Afton would receive weekly occupational therapy visits and a monthly physical therapy visit.  These are one-hour sessions administered by therapists employed by Childrens TLC.  The OT (Amanda) started on Wednesday Afternoon and worked with Afton on positioning and feedings.  This is all free somehow for special needs children and greatly appreciated.  You can find out more at: www.childrenstlc.org

The fine people that produce Afton's growth hormone sent us two free vials of Nutropin to get us by while we are in appeal with the insurance company.

There is a lot to smile about!

Goodnight Afton.

Wednesday June 8^th, 2005...SORRY THAT IT HAS BEEN SO LONG!

Afton had his wellness exam on Monday with his Pediatrician.  He weighed in at 7 pounds 5 ounces and measured 19.5 inches long.  Like other babies at two months, he received all of his immunizations at this visit.  I was under the impression that these needles would be small, you know for babies and all, but no these were big needles attached to huge syringes that went directly into his tiny thighs.  His face turned tomato red but he finally calmed down just long enough to have blood drawn from his arm for the weekly sodium level check, which checked out just fine.  This means the DDAVP dosage is correct!

The Pediatrician told us there is an eighty percent chance that Afton will soon require a g-tube.  This means surgery and possibly an overnight stay in the hospital.  Afton is not making any substantial progress with bottle feedings.  The Pediatrician wrote a referral for an Occupational Nurse from Childrens Mercy to work with Afton.  This Nurse works with baby feedings full time.  If this does not work out, we are expecting the G-Tube.  What is a G-tube you ask?  Below is some info I copied from a government site:  (See below)

Shauna and I are still taking shifts to watch over Afton at night.  I stay up with him, in our living room, until four A.M. then Shauna takes over until late at night.  Grandma Jean has been staying up with him on Friday Nights and Grandma Sue oversees him on Saturday Nights.  Aunt Jennifer spent two Tuesday nights and would like to make it a regular thing.  We love the nights when we can both go to bed!  We especially appreciate this!  We love you!

Afton is beautiful.

Gastrostomy Tube Feeding

Gastrostomy tubes are well suited for long-term enteral feeding. Patient comfort with gastrostomies is an advantage over NG tubes. Gastrostomies do not irritate nasal passage, esophagus, or trachea, cause facial skin irritation, nor interfere with breathing. Gastrostomies are stable and more physiologic, allowing continued oral eating. There are button gastrostomies and other skin level feeding tubes that are easily hidden under a child's clothing. These require less daily care and interfere less with a child's movement. Gastrostomies use a large-bore tube, which allows a more viscous feedings and decreased risk of tube occlusion.

Afton currently has an ng-tube: Nasogastric Tube Feeding

The nasogastric (NG) tube usually is used when tube feeding will be required for a short time (i.e., less than three months) although in some cases it can be used for several years. The major advantage of nasogastric, nasoduodenal, and nasojejunal feedings over gastrostomy or jejunostomy feeding is they do not require surgery. Therefore, they can be started quickly and they can be used either for short periods or intermittently with relatively low risk.

The disadvantages of NG feeding include nasal or esophageal irritation and discomfort (especially if used long-term); increased mucus secretion; and partial blockage of the nasal airways. Nasogastric feeding may contribute to recurrent otitis media and sinusitis. With infants, NG feeding can decrease the suck/swallow mechanism. Two additional disadvantages are the possibility that the tube will perforate the esophagus or the stomach and the possibility that the tube will enter the trachea, delivering formula into the lungs. If formula enters the lungs, severe or fatal pneumonitis can result; therefore, it is essential to confirm that the NG tube is in the stomach before feeding begins.

Monday May 23^rd, 2005

Afton had a photo shoot with Johnny Dare today!  Bikers for Babies have their annual event at the Kansas Speedway every year in September.  Corin Gilbert, Community Director for the March of Dimes, invited us to have Afton involved.  The proceeds go to the March of Dimes and Johnny Dare has been involved with the event for sometime.  Johnny Dare is a Kansas City morning radio personality for "98.9 The Rock" and his show has ruled the ratings for years.  Studio 1, a professional photography studio, donates their location and services to produce photographs with Johnny and a few babies.  We had a great time and Afton was able to stay awake for about half of the "shoot".  Johnny Dare was very friendly and funny and made us feel relaxed with the whole thing.  There was another baby named Cadence, a preemie from Tonganoxie Kansas, who followed Afton's session.  Her parents were big fans of Johnny and you could tell that they were super excited.  We will post these pictures to the web the minute we receive them! 

Wednesday May 18^th, 2005

Afton's Home Health Nurse made her last visit to the house today.  I think she has been to see him three or four times now.  She said she probably would not need to see him again because he is getting all the care he needs at home.  Tomorrow he will start his physical therapy at home and Friday he has an appointment at Childrens Mercy with the Endocrine Doctor.  We hope that the Doctor will cut back on drawing Afton's blood from every other day to maybe once a week.  We will see.

The pharmaceutical company that manufactures "Nutropin", growth hormone, called today and informed us that our insurance company, United Health Care, has denied our claim for their drug.  Nutropin costs $557.81 per vial and Afton needs two vials per month.  Afton needs a growth hormone supplement because his body cannot produce it.  We are sure that the insurance company knows this.  The Nutropin rep said that United Health Care usually denies Nutropin the first time for all claims that come across his desk.  They are going to appeal the denied claim.  This is scary since Aftons dosage will certainly increase as he grows which means it will be much costlier than it is now.

Sunday May 15^th, 2005

Afton is tugging right along.  He has finished four bottles of milk on his own this week!  His temperature is always normal, he loves to sleep and he is just now starting to smile.  He has a lot to smile about!  Afton has a standing order to have his blood drawn every two days to check his sodium levels.  We go about this in three ways: a home health nurse comes to the house, we drive to the lab in Blue Springs or we drive to Childrens Mercy downtown.

We are getting accustomed to the care and feeding of Afton.  The hardest part for us is coordinating sleep and trying to stay awake.  We are still taking shifts so at least one of us awake and with him at all times.  We were able to get a break on Friday night when Grandma Gard came to the house to do an "overnight".  

I started a new page on this website labeled "Latest Pictures".  I will try to post them as I take them.

Wednesday May 11, 2005

Afton is doing well.  We are still at home and VERY BUSY!  Afton needs care 24/7 so we take shifts sleeping in the night. 

It was great to have Mothers Day at home and it turned out to be a very special day.

This is probably a good time for Dad to say "Thanks".  Thanks for the emails, the visits, the phone calls and the cards.  Thanks for the food for us and the gifts for Afton.  I am amazed with how truly great and caring people can be in a time of need and crises.  I can assure you that Shauna and I do not feel alone in all of this.  We don't know exactly how to thank everyone individually.  So for now, Thank you!

We have many new pictures to post.  I will try to get to them soon.

Saturday May 7^th, 2005

Afton is home!  We pulled in the driveway at 3:46PM Yesterday.  Sorry I have not updated the website in the last few days but we had to stay overnight at Childrens Mercy both Wednesday and Thursday.

Afton is doing well.  We went back to the hospital today for a scheduled appointment and to pick up Shauna's twenty pounds of frozen milk.

We are exhausted.  Since Wednesday, I have had a few sessions of 4 hours of sleep but, Shauna has only had one session and she is fading fast.  We may need some help.

Tuesday, May 3^rd 2005 please note that this is a non-technical diary

I am tired of writing this acronym - DDAVP.  One more time for the people in the back -DDAVP!  This is the drug that helps Afton retain fluids.  In other words, Afton might urinate too much and not gain the weight, which most babies would gain naturally, without this drug.  For the last 29 days this topic has been lurking in the background and has paraded in the forefront.  Some days they seem to have it all figured out and other days you can see them scratching their heads from a distance.  But the fact remains.  This is a very complex drug to administer on a six pound baby and they need to nail it on the head before Afton can be released to our care.  We are just fine with this.  We will go home when they tell us that it is o.k. to go home but not until they are sure they have everything figured out.  This drug had first been given to Afton by nose drops and then by a shot and now by a crushed tablet.  They have tried different dosages starting with every 72 hours with nasal drops, 36 hours with shots as well as 24, 18 and 12 hours with the crushed pill.  Now they are back to every 24 hours.

     This is a description of DDAVP from a US Government Website:  Desmopressin is a chemical that is similar to a hormone found naturally in your body. It increases urine concentration and decreases urine production. Desmopressin is used to prevent and control excessive thirst, urination, and dehydration caused by injury, surgery, and certain medical conditions, allowing you to sleep through the night without awakening to urinate. It is also used to treat specific types of diabetes insipidus and conditions after head injury or pituitary surgery.

     On a good note!  We have had many positive experiences at Childrens Mercy.  We were able to meet with Afton's new Pediatrician today who has an office on site.  This is a big deal because his group was not accepting new patients and he was highly recommended.  I will not mention his name just yet.  However, there is one name I would like to mention.  Irma, Afton's nurse on Sunday, Monday and Tuesday nights.  We cherish the time we get to spend with her and miss every second that she is away.  Luckily she has offered her email address and phone number should we need anything regarding Afton's home care.  The truth is that we are going to call and write her - just to call and write her!  Irma has worked at Childrens Mercy for 37 years and is definitely the smartest, funniest and most loving person on the planet next to Afton's mom. 

Monday May 2^nd, 2005

Afton's biggest problem today is that he is too small for his big car seat.  "The car seat specialist" at Children's Mercy brought us a car seat that accommodates smaller infants like Afton.  This is the kind of problem we can handle.  We were very impressed with Afton's demeanor today.  We changed his trach, gave him a warm bath and Mom administered her first shot to his leg.  He seemed to enjoy everything but the shot.  This does not appear to be the same baby that was in so much turmoil just a few short weeks ago.

Once the Hospital allows us to stay with Afton overnight we will then get to take him home.  We may get to stay overnight tomorrow or Wednesday but we are packing for tomorrow!  Now we are trying to organize our thoughts, medical equipment, medications, prayers and our house to make room for baby.  This is getting very exciting!

Sunday May 1^st, 2005

Afton is coming home this week!  He is doing great and the Doctors are tweaking his meds. We will stay overnight with him before we depart.  We will meet with the discharge nurse in the next day or two.

Friday April 29^th, 2005

Afton has had a good day.  We received word today that Mom and Dad's chromosomes check out normal!  We thought this would be the case but, you never know.   

This link will take you to an award winning microscopic picture of Mitosis 

http://www.microscopyu.com/smallworld/gallery/contests/1999/1stlarge1999.html

All of us carry 46 chromosomes (23 x 2) you should be able to tell by the blue in the picture where they meet.  Interesting stuff.

Afton was wide awake and had a great time playing with his parents, Grandma and Aunt today.  Unfortunately, he could not give his full attention to his Occupational Therapist with the bottle of milk.  Afton received two bottle feedings and was able to chug down about half of each.  We like to look at the bottles as half-empty not half-full.  Mom gets to try and feed him by bottle tomorrow night.  We are rooting for a successful feed!

Tuesday April 26^th, 2005

Afton's bottle feeding went well today.  He consumed 37cc's of his 57cc lunch.  Tomorrow he will attempt this same feat at 9:00AM and 3:00PM.  Our meeting with the PACCT Team went well; here are the highlights:

Afton will be going home in two weeks or less...because (1) his DDAVP levels are hard to regulate and the Doctors still need to track it (2) Doctors need to see how he takes to bottle feeding for a longer period of time (3) parents need a whole bunch of training for in home care.

Afton still has diaper rash but not much else seems to bother him lately.  He is weighing in at 6 pounds.  His color is good and he is taking to his trach pretty well.  Oh yeah, he had an eye exam today and "everything looks normal".  Last week his eyes were blue and now they appear to be greenish-brown. 

Monday April 25^th, 2005

The first trach replacement went smoothly.  Quick and uneventful just as we hoped.  This is something we can certainly handle on our own from here.  A Physical Therapist came to feed a very sleepy Afton.  She might have had better luck with her syringe and pacifier had she been at Afton's crib side a little earlier or later.  She seemed to be on a tight schedule and will try again tomorrow.

Sunday April 24^th, 2005

Afton has some chapped cheeks.  Yes, I mean diaper rash and he hates having his diaper changed.  But other than that there really is no news.  We are planning on a big week coming up.  The Endocrine Doctors will be replacing Afton's trach tomorrow and then we will try to bottle feed.  Afton seems to be taking to his pacifier real well and we hope that carries over to the bottle.  If he starts eating well on his own then we figure we can take him home by the weeks end.  Tuesday we meet with a group called the "PACCT Team", Pediatric Advanced Comfort Care Team, which includes Afton's Neonatalogist and some staff people to "coordinate a comprehensive plan of care" (straight from their brochure). 

Friday April 22, 2005

Shauna spent the better part of the day holding Afton and suctioning out his trach tube.  Afton is off pain medication and is prescribed Ativan (antipsychotic) when needed.  So far he has not been given a dose but his parents could sure use a few bottles of the stuff.

The Endocrine Surgeon says that "everything looks good with the trach" and one of his partners and a resident will be by on Monday to change out the trach tube.  They would like us there to see what they are doing so we can perform this at home. 

Thursday April 21, 2005

Afton got to sleep in his first crib today.  No more heat lamps or oxygen.  Mom finally got to hold him again during the bed switch. 

The trach comes with a device that we were not aware of until after his surgery.  A heated neck humidifier.  Apparently this bulky gadget has to come home with us.  Do not get me wrong we are not complaining we just want him home.  The moisture form the humidifier keeps his mucus from drying and plugging the tube. 

Shauna and I met with an endocrine Nurse who educated us on the medications we will need to administer once we get Afton home.  Afton (or anyone without a functioning pituitary) will need four meds a day to keep him going: 

• Cortisol - a stress hormone.  Given by mouth.
• Nutropin a growth hormone.  Injection once a day COST is $20,000 - $50,000 per year!
• DDAVP anti diuretic hormone (or ADH).  Injection twice a day.
• Levothyroxine - thyroid stimulating hormone.  Given by mouth.

Moday April 18th, 2005

Afton is scheduled for a tracheostomy surgery at 7:30 AM Tuesday April 19th.  He is receiving a blood transfusion today to get ready for his surgery in the morning.

Sunday April 17^th, 2005

DDAVP levels are an issue.  DDAVP is a drug that helps Afton retain water.  A week ago, Afton was receiving this drug through nose drops at 72 hour intervals.  Today he is getting shots (sub q or "in the fat") every twelve hours.  The goal is for the Doctors to find the correct dosage.  They are still trying. 

Tuesday April 12^th, 2005

Afton gets very congested and it is hard for him to catch his breath.  Afrin nose drops do wonders for him.  Sunday was his last scheduled dose until we talked the Doctor into dousing him this evening.  Luckily, the Doctor on call hates when he himself has a cold and always reaches for the Afrin to relieve his congestion.  We got the Afrin and Afton quit fussing immediately and went to sleep.

I am not sure if today was a good day or bad day even though we had some breakthroughs. 

Good news:

• Sodium levels finally hit their target (he urinated out enough fluid to require another dose of DDAVP)
• The double dose of milk is being digested and excreted.

Not-so-good news:

• Nasal stints require surgery.
• Jaundice (Billy levels are up) is back and the lights will probably be back on soon.

Until now we have put our son's life in the hands of skilled practitioners.  Today, they turned the tables on us to advise them on how much care we should allow them to perform on Afton should he need to be resuscitated and if we agree with a surgical procedure.  We did not see this coming.  While the last few days have been encouraging; three Doctors today spoke with us at length about what has happened so far and what is in store for the future.

The Resident - I spoke with him unofficially before our meeting with the Geneticist.  He has a son with Cerebral palsy which is what has led him to this career path.  He took his newborn Son off life support after three months in intensive care and today his son is 25 and was never supposed to live to age one. 

Also, he believes that it is a tough job to get the correct mixture of hormones Afton needs to survive at the hospital.  As he grows (or has a cold etc.) these amounts will need to vary.  Getting them wrong one time could be fatal.

The Geneticist - We did not learn anything new from him today.  Last week he told us that a damaged brain might forget to tell the body to breathe and a growing damaged brain sometimes comes with seizures.

The Attending Neonatal Physician - We have four options regarding his very small nasal passages

1)  Surgically insert stints.  He will breathe through a ventilator until he can recover.  Bone will be removed to make way for plastic tubes that will allow for better breathing.  These stints must be surgically removed as well.  The Doctor estimates that Afton's survival rate during this procedure is 99%.

2)  Tracheotomy procedure.  Again surgical.

3)  Put Afton on a ventilator until his nasal passages grow.

4)  Do nothing.

We want the stints.

Next, we were told that Afton could possibly live a long time but he will most likely have these problems:

• Mental Retardation -  since he has the less severe "lobar" HPE he will probably be able to speak some words and put small sentences together.
• Slow development - he may someday be able to walk.
• 50% risk for seizures - seizures are potentially fatal. 
• Risk for Apnea - potentially fatal.

Sunday April 10^th, 2005

More Good News!

Afton's Jaundice is down to a normal level and that means "no more bright lights and foamy sun goggles".  Those goggles really irritated him (and us).  Also, his CPAP (oxygen and moisture mix that goes deep into the nasal cavities) is off for good.  This means less junk on/in him and Mommy gets to hold Baby!  What else?  Oh, yeah.  Afton is digesting Mom's milk like a real champ! 

How is Afton? Afton had Twenty One visitors today and got a good look at them, one by one, from the comfort of Mommys arms.  note: Afton had the best looking group of visitors that Chidren's Mercy has ever seen!

How are Mom and Dad? Shauna is thrilled to finally hold Afton again.  Dad is exhausted.

I am clumsy at best when it comes to medical terminology.  Shauna, on the other hand, has a big Nursing Degree's vocabulary when it comes to this sort of thing.  On our way home from the Hospital tonight she answered a call from an old nursing school mate that was inquiring on Afton's progress.  I did not understand any of the medical jargon that was spilling out of her mouth and into her phone.  With that said: I will now dictate Afton's day today as my wife gets technical.

• His urine output is down which means his DDAVP hormone replacement is working and keeping fluids in his body which keeps his sodium level lowered.
• His blood gases are down to a normal level.
• CMP levels, which were all over the chart, are now within the normal range.
• He is tolerating feedings through an NG tube.
• Produced his first stool (his first real gift to his parents).

How is Afton?  The kid has lungs!  He was cranky again today but I could not blame him.  There are tubes in his nose (3 to be exact), people waking him up from deep sleeps, bright lights, loud people and machines, smelly smells, tubes in his arm and head, sticky things on his chest and belly, shots in the leg..."but", Afton seems to say, "when they let my mommy pick me up; I stop crying right away". 

How are Mom and Dad?  Real well considering the circumstances.  We are finding encouragement from the thoughtful cards, letters and phone calls that have been coming in.  There have now been a few good days in a row.  We will pray that this trend lasts.

Afton got a clean bill of health on the Echo-cardiogram AND the upper G.I.!

He gets to try the bottle again tomorrow.

He was holding more fluids in AND his Jaundice numbers are going down.

Afton is still doing just fine without an oxygen hood.

There is no more Bile being spit up.

He had a good temperature this evening.

But...he was a little cranky.

The parents met with the Geneticist late this afternoon.  This was not a happy visit by any means.  The Doctor told us that before Afton ended up with HPE his chromosomes were out of whack because there is a missing piece from the short arm of chromosome 18.
There are 2 arms p & q.  Part of the upper arm (or p) was missing.  So there is a name for this:

Chromosome 18 Syndrome or 18 p - (18 p minus).  Extremely Rare (of course)

18 p - looks pretty nasty all on its own.  In fact, it looks much like HPE.  Note: Doctor gave us a pamphlet that gave stats which read that the average birth weight is 5 lb 11 0z.  Guess how much Afton weighed at birth? Yes, you are very smart: 5 lb 11 oz.  here is the pamphlet: http://www.chromosome18.org/syndrome_pminus.htm

Shauna and I are scheduled to have our blood drawn on Monday to see if this chromosome came from one of us.  It will take a few weeks to get the results back.  The Doctor says if we get a good report then we will have the same risk of Shauna getting pregnant as all the other Jane's and John's out there in Regularville.  This seems encouraging and scary.  We are not jumping at the chance to find out right now because we have much bigger fish to fry.