Wednesday, September 28, 2011

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.

Monday, September 26, 2011

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.

Sunday, September 25, 2011

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.

Wednesday, September 21, 2011

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. 

Thursday, September 15, 2011

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...
  

Monday, September 5, 2011

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).

Saturday, September 3, 2011

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.

Thursday, September 1, 2011

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

video
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.