Playing Catch-up!

WOW!  The last two weeks have been crazy around here. Things have been really up and down. 

We are trying to go through things, throw out what we don't need, pack what we don't need right now, and finish up small little things to put our house up for sale.  While we are getting rid of a TON of stuff, everything is torn out right now.  Our house almost looks worse than when we started!

The last 5 days have been particularly rough - especially in the Down syndrom and Heart kid community.  In the last 5 days, we have lost two friends:

First, there is Carly.  She was 8 years old and died last Friday.  This was totally unexpected and it has sent shock waves through the DS community.  So many of us have never met IRL (in real life), but are still close through our blogging and facebook communities.  If you would, please say a little prayer for Carly's Mom, Dad (who had to do CPR until the ambulance arrived), and her older brother and sister.  If you are so inclined, please stop by Michelle's blog.  She has put up a button to donate.  On behalf of the DS community, a fund has been established to pay for a wonderful artist named  Michael Johnson, who also has DS, to commission a painting of Carly for her family.  Any money over and above will be donated to Mott's Children's Heart Center per Carly's family's wishes in her obituary.

Our next friend is a local heart buddy.  I have asked for prayers for Ashton before.  Sometime on Sunday night or Monday morning, Ashton had a major stroke.  He was still on a bypass machine, but was being weaned.  He was going to be listed for transplant.  Sadly, his family had to take him off of life support on Monday afternoon.  He had such a following!  I was never able to personally meet Ashton, but I have talked with his Grandmother and Dad.  They are both wonderful people.  Ashton was a first degree black belt in TaeKwonDo, and attended the same studio as my nephew.  He will surely be missed, but we are happy that he is now able to run, and spar, and do all of the things little boys should.  A memorial is set for this Saturday, May 1 at Bismark school.

The next person is my friend, Phred from Alaska.  We have known each other for years via the internet, but never got to meet.  Phred was crazy as a bedbug!  If you look up Mountain Man or Hillbilly in the dictionary , it is a sure bet the picture would be Phred.  We may not have always seen eye to eye on things, but he was one of those rare birds who knew who he was.  He had no trouble expressing his oppinions - wanted or conventional, or not - but he had no trouble with others doing the same, whether you agreed with him or not.  Many of those ideas where greatly challenged this past fall when he became a Grandfather.  His Grandson was born with both Trisomy 18 and Trisomy 14, plus a translocation.  This was a defect that the doctors never thought the baby would survive - even through the pregnancy.  So far, he is doing amazingly well!  It looks like he is the only recorded person in the U.S. with this particular genetic disorder.  On March 25, Phred went to sleep and never fully woke up.  He had a massive stroke.  His family took him home from the hospital to make him comfortable and he passed away on March 29, 2010.  We noticed that he had been missing from our forum and somebody contacted his wife.  She forgot to notify his on-line friends.  We will miss you Phred!

So now that we are all thouroughly depressed, the results from all of our recent appointments....

Monday, the 19th, we went to the Cardiologist in Peoria.  Christopher* had an ECHO.  The results were GREAT!  Tricuspid regurgitation (or leakage) was minimal. Mitral valve regurge was downgraded from moderate/severe to mild/moderate.  No sign of pulmonary hypertension returning, and mild thickening of the septum that was repaired. (His septum is competely patch material - now is growing scar tissue and thickening making it less flexible. For obvious reasons, this is watched VERY carefully).  We don't have to return for a year!

Tuesday, the 20th, we went to Wheelchair Clinic at LaRabida in Chicago.  We are required to go every 6 months, or it voids the warrenty on the wheelchair.  Unfortunately, we don't use his wheelchair that often.  He does not sit in it all day, he is not transported in it to school or anywhere else, and it is HEAVY!  It takes two of us to lift it into the back of our van.  Since my Dad has had colon cancer surgery and hernia surgeries, he can't  isn't supposed to lift over 10 lbs. So, Christopher will have this chair for a L-O-N-G time. They had to order a new back for the chair (I think everything is custom made) since he just keeps getting longer instead of gaining weight.  We drove to Chicago, went to clinic, and was back home by 12:30 that day! Remember, this hospital is a good 3 hours away, depending on traffic.  We didn't mess around that day.  Something fired us up because we ended up going to get curtains for 4 rooms in the new house, paint for 5 rooms, rugs for 2 rooms, completely changing the plan for one room in the process, and stopping by a couple furniture stores to look for a few things we need!  While at Menards, (after Mommy used Cavi-Wipes to sanitize them) we put Chistopher in a swing that is set up there.  We have the same one for him at home, but aren't putting up the set this year because as sure as we do, the house will sell!  He really seemed to like it.  Here are a few pics.

Friday, the 23rd, we went BACK to Peoria to see the GI doc and the Endocrinologist.  Even though the scales indicated that Christopher had lost a pound since his visit to the Cardiologist that Monday, the GI doctor was happy with his overall weight gain of 1 1/2 lbs since October.  He added some calorie booster to the formula cocktail and a return visit for 6 months.  The Endo doc was underwhelming.  I am not sure I am too comfortable with her.  I had some questions that I asked her several times and she ended up never answering one of them.  Christopher's TSH levels supposedly went up 3 points in 3 weeks, and she sisn't wasnt to repeat the test to make sure what was going on.  We have such trouble with Peds. Endo. docs.  They just don't seem to want to do much unless your child has diabetes - not something we want to visit thank you.

Well this post in long enough.  I will update our trip BACK to Chicago yesterday for tag team therapy services and a trip to the zoo - complete with picutes!

Hugs!

Steph

*OK. So I originally was only going to use "Lil' Man" on the blog as a pseudo security measure.  It is too much work and most of you who come here already know who Christopher is anyway!  LOL! So, I am going back to using his real name.  :)

Busy Week!

Well, we have a busy, busy week this week.  Monday to Peoria for Cardiology appointment, Tuesday to Chicago for Wheelchair Clinic, Wednesday to the dentist for me, and Friday back to Peoria for GI and Endocrinology appointments!  Whew!

I will update when I can.  Have a great week!

Hugs!

Steph

UPDATES

We have a couple of updates on some of our friends:

First, Our local guy, Ashton.  They just transferred him from Peoria, IL to Milwaukee, WI BY AMBULANCE tonight.  I can't believe they went that far in an ambulance.  I am sure it was an exciting ride.  It took two ambulances and an entire team of doctors, nurses, & EMT's went with.  He and his entourage arrived safely at Children's Hospital of Wisconsin (Yes - this is our stomping grounds).  Docs there are evaluating him tonight and may be doing another surgery on him tomorrow. 

A couple of weeks ago, his heart stopped while he was in the gym at school.  Luckily the nurse was there, did CPR, and the school had an automatic defibrilator available.  It took 3 shocks and 14 mintues to get his heart going again.  They flew him to Peoria where he has had 4 open heart surgeries in the last few weeks.  He was on ECHMO, and they have been able to discontinue that.  However, his left ventricle is not responding as it should.  Our wonderful docs in Peoria knew they were at their limits and arranged to transfer him to Herma Heart Center, CHW, Milwaukee.  Please keep Ashton, his family, and the docs/nurses in Milwaukee in your prayers.

Next up, our little guy, Malachi.  He was officially diagnosed with Moyamoya syndrome.  He will need brain surgery.  Unfortunately, he also has that nasty metapneumo virus - a cousin to RSV.  None of the Neurosurgeons will sedate him to do the Angios and other tests needed before surgery until that virus is gone.  Please keep Malachi, Erin, Josh, & Elijah in your prayers too.

As for us, pretty quiet here.  Trying to clean up still and get rid of stuff.  We have been able to do a lot of "school" this week.  I realized I am going to have to re-do all of my lesson plans.  Lil Man has blown everything out of the water. Yeah!  I think we are going to try for a more structured school day.  Right now, we just have fun.  He doesn't realize that stacking blocks, or using a pegboard, reading books, or watching a video is all "school".

I am going to adapt Sue Patrick's Workbox System into our homeschool.  There are lots of versions out there - almost as many as there are people using it.  If I can take away a toy from Lil Man and put it up one day, and he remembers where I put it and points it out the next, he is ready to move up to "real" school.  :)  I have noticed that he is starting to anticipate his favorite parts of shows that he watches often - like Sesame Street skits, & Kipper the Dog. 

Thanks for stopping by.  We wil keep you all updated on how things go. :)

Hugs!

Steph

Prayers & Purging

First, I would like our blog friends to say a prayer for one of our special buddies.  You can go Here to follow them.  We have been trying to make time to meet IRL, as they live a few hours north of us.  Erin posted that Malachi was admitted to the hospital last night with RSV and a major stroke that is affecting one side of his little body.  Please pray that they can figure out what is going on and get him on the road to recovery quickly.  His brother, Elijah JUST came home from the hospital from his open heart surgery.  If you are reading this Erin, we are keeping you Josh, Malachi, and Elijah in our prayers!  Hugs!

Outside of that, we have not had much going on around here worth bloggin about!  :)  Big Chris & I are busy attacking our house - purging, packing, & getting ready to move.  We have WAY too much stuff!!!!  What isn't good enough to go in to the rummage box is going out on the curb.  You would be AMAZED at the crap people will pick up.  Even so, I am sure the garbage men hate me right now. 

This week we go to the ortho doc on Thursday.  We will see what he has to say about those kneecaps.  I do hope we can get away with NOT doing surgery to put them back in place.  :(

Next week is VERY busy.  We go to the Cardiologist in Peoria for our, now yearly, appointment.  Going to push for some blood work, as Lil Man has just been "off" lately.  I hope it is just allergies.  Then Friday, we go back to Peoria again for appointments with both G.I and Endocrinology.

Hope everybody out there is doing well!

Hugs!

Steph~

Happy Heart Day Lil Man!!!!

UPDATE: Asking for urgent prayers for a local heart buddy.  He had some trouble the other day and had open heart surgery tonight.  He is currently on ECHMO and will be for at least 5 days.  Lil Man's surgeon worked on him.  Keeping  Ashton and the Norwell family in our prayers; also all of our cardiac friends at St. Francis.  Get well soon Bud!

It is unbelievable that six years ago today, Lil Man had his first open heart surgery!  Little did we know the roller coaster ride yet to come. 

It was origianlly scheduled to happen about a week earlier.  We went to the hospital for the Pre-admissions stuff (tour of the ICU, etc) and our surgeon came in and said that they were going to have to put off the surgery for about 3 weeks.  My Mom and Dad were with us.  Mom had scheduled her classes around this surgery, along with Big Chris' vacation and FMLA leave.  While that was a pain, it wasn't the biggest issue.  Before I knew it, I blurted out, "He will be dead in 3 weeks.  We don't have time to wait."

Our surgeon looked at me like I just grew two heads. He left the little conference room we were in, and was gone for awhile.  Meanwhile, Mom and Dad were trying to figure out vacation schedules and school schedules - I remember Mom chastising me for being so blunt with the doc.  I really wasn't that interested.  :)  If you know us, you know that is a weekly conversation.  LOL!  He FINALLY came back in and said they could get us in in 4 days.  That was better than nothing....

At this point, Lil Man was just barely 3 months old.  He had already aspirated several times (although we didn't know that yet), had been diagnosed with seizures and pediatric stroke, and his O2 sats would drop to the 30's and 40's several times a day.  Due to the nature of his heart defect, we couldn't put O2 on him.  If we did, all of his blood would rush to his lungs, bursting the capillaries and drowning him.  We had to get his sats up everytime he dropped them WITHOUT O2.  Plus, his seizures were not controlled.  He was not having the thousands that we started with, but he was still having hundreds a day.  The absolute worst time during surgery was going in to and coming out of anesthesia because it could mask severe seizures, and by the time they realized what was going on it would be too late.

His heart defect was classified as a complete AV Canal Defect and a huge PDA.  What we didn't realize was the extent of the defect.  Originally, we were told that his heart formed perfectly on the outside and failed to form at all on the inside - no chambers, valves, etc.  This is still how I describe things to those who have no cardiac experience.  The reality was that his heart was lopsided - 1 cm from being considered Hypoplastic Left Heart Syndrome.  It was a miracle he lived that long.  They had to build a septum in the heart, making the chambers and valves.  He had one flap of his tricuspid valve, the mitral valve was non-existant, both his pulmonary and aortic valves only have two flaps instead of three. 

Most AV Canal repairs are made a little easier by the fact that there is either already a partial septum (holes in the heart) , or a ridge down the middle of the heart where the septum should have formed.  He had neither.  The important thing to remember is that the electrical "lines" run down the heart close to where the septum is, or should be.  They are invisible to the docs, you know if you have damage because the heart fails to beat or beats irratically.  That ridge is a guide that the heart surgeons use to build or repair without  hitting the electrical system.  They went in blind on Lil Man. We were prepared that he would be dependent on a pacemaker for the rest of his life.  We were also prepared that they would end up having to use artificial valves, requiring a lifetime on blood thinners and replacement surgeries to keep up with his growth. That was also the first time we spoke with a transplant coordinator and found out that they don't do transplants on people with Down syndrome - "because they don't like to waste the organs."....ahem.

The last part of the defect was the PDA.  All babies have a PDA.  This is a small connection between the pulmonary artery and the aorta.  The reason this exists is because before a baby is born, there is no need for the blood to circulate through the lungs to pick up oxygen.  This is done through the mother's lungs and passed to the baby through the umbilical cord.  Nobody is sure what triggers it, but either during the birth or shortly after, the PDA closes on its own.  For some babies it doesn't close.  It can be closed with meds, by a cath procedure, or an open heart procedure.  Most of the time, it is just a matter of snipping the connection.  For Lil Man, the pulmonary artery and the aorta were basically fused, instead of just having a little bridge.  So both had to be reconstructed as well.

We went home for a few days and returned to Peoria the day before surgery to do the Pre-op stuff.  On our tour through the PICU, we met Barb, Jeff, and little Joshua.  Josh was a few days old and had his surgery the day before.  He was too swollen to close his chest, so we were able to see what things would look like if that happened with Lil Man.  It was amazing to see this little baby laying there, on a vent, with his chest wide open covered in basically Saran Wrap.  You could see his lungs expanding and his little heart beating away!    We had no idea how close we would become to this family...

The next morning - too freaking early - we headed back to the hospital.  While in the surgery waiting room, there was a beautiful little girl running around.  She was everywhere at once.  Her parents noticed us and came over to make over Lil Man.  It was then I noticed that the little girl, Princess Tiffany, had Down syndrome.  She was there for ear tubes.  She had AV Canal repair at 4 months.  Her Mom and Dad kept reassuring us that although it would be hard, things would be OK. 

Big Chris and I were the only ones allowed back into Pre-Op.  Gamma and Papa had to say their goodbyes at the door.  After doing the talks with anesthesia, the surgeon, and about 5 different nurses it was time to hand him over.  They don't let parents go to the operating room.  He was soooo aware of things that morning, which was unusual.  We would not see him that aware of anything for at least the next 6 months, or more.  We were told there were three outcomes: 1) he would not survive the surgery, 2) he would survive with either brain damage, artificial heart valves, a pacemaker, or all three, or 3) he would come through with flying colors.  We prepared for the worst, but prayed for the best.

Then we waited, and waited, and waited.  We waited for 11 1/2 hours of actual surgery. It was 14 hours before we could get a brief glimps of him as he and his entourage flew down the hall with more medical equipment than it seemed could physically fit down the hall - they were moving too.  It takes a special group of people to coordinate THAT dance without ripping out something or getting tangled or running into a wall or something.

The surgeon came to talk to us about this time.  They ushered us to a conference room and it was actually several docs that came in.  The first thing out of the surgeon's mouth, with a sheepish look was, "You were right.  He had maybe one or two days left."  They proceded to tell us how they repaired everything and what to expect.  Another doc came in and asked us to sign consent for what, at the time, was an experimental treatment.  They were having trouble keeping his O2 levels up.  There was already one other kiddo in the PICU on ECHMO (heart lung bypass), so they treated him with Nitric.  (not nitrous) It is lighter than oxygen, but it attaches itself to the oxygen molecules and "floats" the oxygen into the lungs.  This allows it to go in to parts of the lungs where O2 couldn't squeeze through.  What nobody realized was that Lil Man had Pulmonary Hypertension - fixing the PDA likely made it worse. 

We FINALLY got to see him 14 hours after we handed him over.  The entire room was filled with I.V's an the vent, etc.  It was all very scary at first, but you got used to the equipment pretty quick.  As I said, there were three other kiddos up there who were pretty sick - one on ECHMO, the other with an open chest., the third a 4 lb baby with gastroscheisis who was born at 1 1/2 pounds.  We would get to know ALL of these folks well.

This started our 6 month hospital stay.  We learned many lessons, met wonderful people, and made lifelong friends along the way.  We are so proud of how far you have come Lil Man!  We can't wait to see what comes next.

BTW - I will try to add pictures later - our scanner is acting up.  :(

Hugs!

Steph