For those seeking more information about Grant...

   Although Grant's fight is over, we desperately hope our experience may help other families going through similar situations.  If anyone happens to stumble across this blog while looking for more information regarding DiGeorge Syndrome, 22Q11.2 deletion, congential heart defects, Tetralogy of Fallot and pulmonary atresia, or even Lebonheur Hospital, Cathy and I would be glad to answer any and all questions you may have and share more details of our journey with Grant.  We hope that through our loss others with similar issues may find information and encouragement to help them.
    If you would like to reach out to us, please feel free to email us at cdawson1@centurylink.net or you can find Cathy Coats Dawson on Facebook (see link below).

http://www.facebook.com/#!/LUVmygirls

Kind Regards,
Mason & Cathy Dawson
Olive Branch, MS

Day 68 - The fight is over

   It is with great sadness and heartbreak that I must report after 68 days of fighting in the NICU, Grant finally lost the battle and died at 10:04pm in the loving arms of his mother.  As a final effort to improve blood flow to his lungs, Dr Knott-Craig tried to insert a shunt (man made tube) to buy him more time until the final repair surgery.  Unfortunately his vessels were just to scarce and way too small.  The surgeon indicated that Grant's condition was 10 times worse that he ever expected to find and that he has never had a case where there was nothing to connect to.  Cathy and I have comfort in knowing the we did all we could do to help Grant fight, but ultimately his heart could not take it anymore.
   I could not be more proud of my son.  He has more fight in his tiny 8 lb body than most have in their adult size bodies (myself included).  We call him Superman due to his enormous strength and courage.

Here are the funeral arrangements for Grant Mason Dawson
Forest Hill Cemetery (East)
2440 Whitten Road
Memphis, TN 38133
901-382-1000

Visitation is 5pm-7pm Thurs (9/29)
Funeral 10am Frida (9/30)

In lieu of flowers the family requests you make a donation to LeBonheur Children's Hospital.  See link below:

https://secure.lebonheur.org/apps-lebonheur/donation/

Thanks for your continued prayers through this difficult time.

Day 67 - Left Side Shunt Surgery tomorrow...

    Today Grants Oxygen Saturation levels were back up into the 70's (and occasionally the 80's).  Cathy and I spent the entire day talking to Doctors and Surgeons about Grant's outlook.  We finally spoke to Dr Knott-Craig this afternoon and told us that he could try to put in a shunt as a last resort.  He was only about 80% certain that the shunt could be inserted successfully.  If the shunt is unsuccessful, Grant will likely die soon.  Currently, he has quickly outgrown his small vessels and his condition is very unstable.  At this point, Cathy and I are at peace with whatever happens tomorrow.  We have done all we can do at this point and Grant is completely in God's hands.
  The surgery is tomorrow around noon and will take about 3 hours.  If they are unsuccessful with the shunt, Grant will have only a small amount of time to live.  Needless to say, tomorrow will be the single most pivotal day in Grant's life.  The Shunt procedure is not open heart surgery.  In fact, the shunt is inserted through Grant's side.  If the sugery is a success, he could be off the drugs and ventilator in less than a week (I think that may be a bit optimistic).  We are all trying to get some good sleep tonight and prepare for a wonderful day tomorrow.

Day 66 at LeBonheur NICU

  The past 3 days have been the most difficult to-date.  On Thursday afternoon we met with the Cardiologists (Dr. Stamps) and he painted a very grim picture for us.  Grant's oxygen sats had been trending down and options for surgery at this point were not looking good.  The final word for surgery would be made by the head cardio surgeon (Dr. Knott-Craig).  Unfortunately Dr. Knott-Craig would not be available until early next week.  Cathy and I began preparing ourselves for the worse.  Immediately after the meeting on Thursday, Grant's oxygen sats began to drop quickly.  We got a call at 1am on Friday saying we should come to the hospital quickly because they have done all they can do.  Once we arrived, they were putting in a larger breathing tube and that seemed to help some.  They gave him morphene, dopamine, a paralytic drug, and adavant, and a blood transfusion, to keep him sedated and still.  They were able to stabalize him all day Friday and due to his declining condition they were able to contact Dr. Knott-Craig on Friday afternoon to review the latest scans.  Dr. Knott-Craig decided that he could put in a shunt (either Tue or Thur) of this week that may help his condition.  This would not be the final repair, however, it would hopefully buy a little more time to explore more options for the long-term surgery.  If the 1st shunt works, they will likely put in a 2nd shunt a few weeks later.  Again, the shunts will only buy us time for Grant to get bigger and for the surgeons to determine what can be done long term.  His condition is one of the most complex congenital heart defects to repair.
    We are encouraged that they are moving forward with the shunts, however, sadly we are not 100% convinced that he will be able to have the final surgery that will ultimately repair his heart.  We know that the shunts MUST be done at this time to keep him alive.  Currently he is on a ventilator and lots of drugs to keep him alive until the shunt is put in this week.
   A shunt in a man-made tube that will direct blood from Grant's aortic arch to his collateral.  In the meantime, they have sent Grant's scans off to Stanford for a 2nd opinion.  There is a Surgeon in Stanford that had performed more of these surgeries than anyone.  The best case scenario is the shunts will provide extra time (weeks/months) for Grant to grow and hopefully his vessels too, and give the surgeons time to explore what, if anything, is possible long term.  We continue to pray for a miracle for our tough little boy.  He is a true fighter and I could not be more proud of him.  We find comfort in knowing that we are doing all we can do for him.  Thanks to everyone for your continued support, prayers, and encouragement.

Quick update - Prayers needed!!

We are needing your prayers.  Grants oxygen sats have been dropping more and more lately.  He is on more oxygen, more medication and more sedation to help this from happening.  Over the last few days he has been dropping into the 40's and turning a pretty blue smurf color.  Please pray he hasn't suffered any brain damage from lack of oxygen.  My poor boy can't catch a break. 

Day 55 at LeBonheur 9-15-2011

    It's hard to believe that Grant will be 8 weeks old tomorrow.  He is still in the NICU at LeBonheur and we are not sure when he may be able to come home.  Last Friday afternoon, Grant had another TET spell and his oxygen level dropped very low.  He was able to recover without going on the ventilator, but they had to give him Morphene to "relax" his constricted vessels.  This spell was the 2nd worse one he has experienced so far.  He currently gets some oxygen through his nose cannula.  He still has his nasal feeding tube and he is up to 1oz of milk every 3 hours.  His weight continues to climb slowly and he weighs over 7 lbs now. 
   They are not having him feed from a bottle right now because they feel he will tire himself out which could lead to more TET spells.  His due date was yesterday, so he should not have many preemie related issues.
   We dream of the day Grant will come home.  We can hardly wait...
  

Day 46 (Labor Day)

   Today was a really great day.  Grant had a great weekend off the ventilator.  He  has not experienced any more of the "spells" where his oxygen saturation levels drop.  He is breathing much better on room oxygen with a nose cannula.  He was having a bit of trouble digesting the small amount of milk that he is getting, but tonight the nurse said everything looked good.  We are optimistic that everything will continue to improve as his actual due date approaches (9/14).

Grant 44 Days Old - Gestational Age (38 Wks - 3 Days)

   Grant is now off the breathing tube after 10 days...  Cathy was finally able to hold him again and they both could not be happier.  The past couple of days have been tough to watch Grant struggle with being uncomfortable and restrained because of the tube.  It seems like he was stuck in cycle of which he could not get out.  They would not remove the tube because his oxygen saturation level would drop, but his sats would drop when he gags, vomits, or gets upset.  Of course, the tube was the cause of the gags, vomit, and anger.  He would even hold his breath also causing his sats to drop.  Finally the cycle was broken Friday at 2pm and that pesky tube is out now.
   More converations with Dr. Joshi (head pedi-cardiologist) and the plan remains the same.  Surgery when Grant is 3-4 months old (should be a min of 10 lbs).  He will likely come home for a period of time before the sugery.  We will have and oxygen satuartion monitor at home to allow us to check his levels.  That part is very scary for me and Cathy.  We won't have the luxury of all those monitors and equipment, not to mention the highly trained medial staff available instantly.
   As Grant rapidly appraches his true "due date" (9/14) we are hoping that his breathing and other pree-mie related issues will begin to subside.  He has been feeding on milk (very small amounts) through his nose tube for  a while, but now that his breating tube is out, he should resume bottle feeding soon (not sure when yet).  They did indicate that he was having some trouble with digestion, but they will continue to monitor it closely.

Sketch of Grants Arteries

There should be a "Y" shaped pulmonary artery under the big arch...  but he doesn't have one.  The smaller vessels in the diagram are doing the work of a pulmonary artery for now.

Grant wakes up after Heart Cath

He looks at you with those shifty eyes as if to say...  "Get this tube out of my mouth!"

6 Weeks Old - Heart Cath Results

   This week Grant finally got his heart cath and we finally have some good news to share...  The cardiologists and cadio surgeons met on Wed afternoon to review the results of the heart cath and they claim that he has enough vessels (called collateral) to have the necessary surgery at 3-4 months old (around 10 lbs).  Keep in mind the surgery will be "complicated and risky" however, we were delighted to know that he has enough material with which to work.  We also know that he will require multiple complicated and risky surgerys throughout his young life.  They still believe that Grant will come home for a period of time before the surgery.  Cathy and I look forward to his homecoming.  For now, he still has that pesky breathing tube in, but we are hoping and praying that it will be taken out tomorrow (Fri).  He is very close, but they wanted to wait a little longer.  He has been on the ventilator for 9 days.  They originally inserted it when he was having trouble with his oxygen saturation and then he stayed on it for the heart cath.  Today Cathy reported that it was very obvious that  the tube was bothering him.
We believe if he can get his breathing consistent, get him back to feeding from the bottle, and gain some weight, he may get to come home soon.  We dream of that day.  More updates over the weekend.

  

One Step Forward... Two Steps Back 8/26/2011

   Another tough week for little Grant.  Last Tuesday night his oxygen saturation dropped and stayed down for several minutes.  They had to put him on a ventilator to get it back up.  He has experienced occasional small "spells" like this before, however, the nurses were always able to get the numbers back up quickly.  This has caused some concern that his heart surgery may have to come sooner rather than later.  They are planning to do a heart cath next Tuesday to determine what is possible surgically to improve blood flow to his lungs.  Xrays of Grant's lungs have been very cloudy which typically means infection, pneumonia, or partially collapsed lung(s).  They do not think its infection or pneumonia since he has been on an antibiotic for several days (for his stomache infection).  We have to wait for his lungs to clear before they will do the heart cath.  They have started to turn/reposition him on more frequent intervals and a respiratory therapist comes by every 4 hours for PT (they smack him on the back and sides several times to loosen things up in his lungs.
   No way to know what the next steps are other than continued focus on his breathing, ween him off the ventilator, resuming his bottle feeding (after the breathing tube is out), and the heart cath on Tuesday.  They have a big Cardio team meeting on Wednesday to discuss each patient and Grant's results will be on the agenda.  Hopefully we will know something by the end of next week regarding when his surgery might take place.  Everyone believes it will ultimately take several surgeries to fix his condition and they would like to wait as long as possible.  If he continues to have problems with his oxygen saturation level, they will have to do something surgically now.
   There is some good news...  He is up to 6.3 lbs and at his last feeding, he was up to 35 ml which is just about the amount he should eat for his age.  We hope the breathing tube comes out tomorrow and he resumes bottle feeding.

More to come...

Big sisters get to hold Grant for the 1st time...

Day 27 at Lebonheur

   In the past week Grant had a 2nd blood transfusion which has greatly improved his coloring and his ability to maintain his body heat.  He has been on IV nutrition (no Milk) and antibiotics for the past week due to a bowel infection.  He will start back feeding tomorrow (8/17) and they will gradually increase his consumption over the next several days.  Overall he is doing pretty well.  They are giving him some oxygen to help with his stats (they occasionally drop).  He is still gaining weight (5.1 lbs today).  We are hoping he will feed well and continue to grow.
   Sarah and Lily got to hold their little brother for the first time Sunday.  They were both very excited and nervous to hold him.  Sarah was very quiet and still while holding him, while Lily kept kissing him on the head.  I think Lily is going to really love being a big sister for a change.
   Cathy and I now have a fairly regular routine.  In the morning after the kids get on the bus for school, I go to work and Cathy goes to the hospital until after lunch.  She then returns home to get the kids off the bus, begin homework, dinner, and the night routine.  Although it is tough to constantly juggle schedules, it is still managable at this time.
   Thanks to everyone that is following us on this crazy journey.  We very much want Grant home soon, but he is just not ready yet.

Grant - I love his hairdo

Grant - 19 days old

   It seems like it has been much longer than 19 days since Grant was born, but it's true.  A week ago they were beginning to talk about when Grant may come home, but that conversation was short lived.  Unfortunately, Grant is not feeding very well from the bottle so he has a feeding tube to make sure he eats the volume they want him to.  In additiona, he has trouble maintaining his body temp, so he stays under the heat lamps (I think he kinda likes it).  He was gaining a little weight each day, but he has lost over the past couple of days.  He weighs about 4 1/2 lbs. (slightly more than his birth weight) He also had a blood transfusion yesterday (which is not uncommon for premies) because he was pale and his stats had dropped over the past few days.  So far the transfusion seems to have helped.  It's easy to get discouraged, but we have to remind ourselves that he is still a premie and was not due until 9/14.  It's easy to get caught up in the "set backs" and overlook the successes.  Overall, he's doing well.  At this point nothing is life threatening and we expect that he will come home one day soon..
   What's next...  Grant will continue to try to bottle feed at every other feeding and then tube feed the balance when he tires out.  A speach therapist will examine his mouth to see if there is something physically hindering or complicating his feeding.  No new updates from the Cardiac team.  I predict we will not hear much for several weeks from them until he gets bigger.  For now, we continue to be patient and grateful for the small wins.  Grant will not be able to leave Le Bonheur until he is feeding well, gaining weight, and his stats are stable.  More to come...

Grant snoozing & our first family photo... The 5 of us.

Grant - 10 days old.

The past 10 days have been pretty tough for our little guy.  Lots of tests, blood work, UV therapy, etc...  Currently, he is still in the NICU and is doing pretty well.  He is now feeding on a bottle (a whopping 10ml) every 3 hours.  Today they removed his nasal feeding tube and we are hoping that he will continue to eat and grow.  He now weighs 4lbs 2oz and his weight increases a little each day.  His belly button feeding tube has been removed and he is breathing 100% room air.
Today was a good day...  His sodium was back to normal and his acetosis was also improving.  They originally thought he may have Diabetes Insipitus (excessive thirst and pee-pee), but now they do not believe he has it, because his urine output is down to normal.  They put in a central line for meds, IV, and to draw blood.  Unfortunately, the line was placed in his neck which looks very uncomfortable.  I don't think he likes it much.  Cathy is able to hold him for a little while each day.
No updates from the cardioligists yet.  The last time we spoke, they were going to meet as a team and review the results of his tests so far and better define the treatment plan.  It still seems that surgery could be 2-3 months away.  We try desperately to know when he may come home, but no one seems to know for sure.  We want him to stay as long as he needs to, but it will be nice to have him home for a couple months prior to surgery.
We hope to know more next week.  For now, he is doing well.  The heart defect is still the major life threatening hurdle (long term) and the treatment plan is not clearly defined yet.  More to come...

Pictures of Grant... He's quite handsome if I do say so myself.

I almost forgot to post some pictures of the G Man...

Report from the Cardiologist - 7/22/2011

Cathy is recovering nicely and the plan is for her to be discharged from the hospital today ending her 15 day stay.  Yesterday was a day of "exploration" to try to unravel the mystery of Grants heart defects.  He had a breathing tube put in yesterday only for the purposes of testing.  They needed to regulate his breathing as part of the CT angiogram.  We now finally have an official answer for Grant heart condition.  Grant has Tetralogy of Fallot with Pulmonary Atresia. In an nutshell, Grant does not have a typical pulmonary artery to take de-oxygenated blood to the lungs.  He has many small vessels called "collateral" doing this function for now. 
What does this mean?.?.?...  Grant will ultimately need surgery to correct this condition.  The plan for now let him grow for 2-3 months and then do another heart cath to determin IF surgery is possible.  That's right, IF.  This news was a devastating blow yesterday.  We have always known the risk of having any heart repair surgery, but yesterday we were told there is a possibility the defect can't be repaired surgically.  If surgery is indeed  possible, they will take all the collateral (small vessels) and use them to form a pulmonary artery.  Sounds simple enough, but the main factor is not the difficulty of the procedure, but rather how much material with which they have to work.  For now we will hope and pray he has enough material "collateral" to have the necessary surgery in 2-3 months.  Unfortunately, a transplant is not an option since he does not have a a pulmonary artery (he would have the same problem with a new heart).
Please don't take this new as all gloom and doom.  I can tell you he has a strong will to thrive and we will never give up on him.  The good news is no surgery for now he may come home in 2-3 weeks if he continues to do well in the NICU.  It will be nice to have my family (all 5 of us) under the same roof.
Thanks to all my family and freinds for your love and support.  You will never know how much it means to have such a strong support system.
Grant is at Le Bonheur in NICU room 402 for those that want to visit.  Sorry, no one under 18 allowed in the room (except siblings) and Grant!