I know we're all just names and text here, but I'd appreciate thoughts/prayers for my 12yo son...

[benEzra]

and for me and his mom also, in the next couple of weeks. He's scheduled for heart surgery next week at Children's Hospital Boston---angioplasty Wednesday, heart surgery Friday, if nothing changes. The goal is to upgrade his RV-PA conduit, which he's outgrown, patch a residual ASD, and stretch his pulmonary branch arteries (former aortopulmonary collaterals, very small and knotty) to handle the increased flow.

If I have wi-fi and presence of mind while in the hospital, I'll post periodic updates here.

The man himself, from this past July 4th:



I'm hoping he'll be a little less blue than that in a few weeks...please keep your fingers crossed for him. This is not routine by any means, but Boston Children's is arguably the best in the world at this. It's still damn scary though.

[Kennah]

1. I cannot even fathom what you must be going through right now. He's in my thoughts.

[csziggy]

2. Best wishes and good vibes!

I hope everything goes perfectly.

[Mnemosyne]

3. Best of wishes for that sweet young man, and much comfort and strength for you and his mom.

:hug:

[X_Digger]

4. Fingers crossed for ya., n/t

[fizzgig]

5. my best to your family

and big :hug: to your little man

[elleng]

6. Fingers crossed now and next week.

:grouphug:

[benEzra]

7. Thanks everybody!! (n/t)

[JackC]

103. Best wishes for you son for the New Year

May he have health and happiness.

[FloridaJudy]

8. You've got 'em

Good vibes going out to your son.. You really are in the best place for that. Boston Children's has a great reputation.

:hug:

[The Wielding Truth]

9. Here's a blessing for a very successful surgery and recovery.

[Lucinda]

10. You are all in my prayers.

♥

[MiddleFingerMom]

11. Strength and healing vibes for him -- and for you and his mom, too. n/t

[texanwitch]

12. What a cute little boy.

Lots of vibes for him.

[krispos42]

13. Jeez, Ben, that's pretty rough

A second heart surgery on a 12-year-old? Shit. :-(

Well, if you're in southwestern CT, lemme know. We'll get a beer or something.

[benEzra]

27. Third one, actually. :-(

But he is one incredibly brave and tough kid, and it's all he's ever known so he thinks it's more or less normal. I'm a lot more stressed about it than he is. :-(

He was born with one of the more serious heart conditions that is survivable. These days, it's often called PA-VSD Type C (missing pulmonary artery and pulmonary valve, large hole between the ventricles, lungs fed via multiple small branches from the aorta), but when he was born they were calling it Tetralogy of Fallot with pulmonary atresia. It was caused by a genetic deletion (22q11.2) that caused some of his circulatory parts to get lost during development, among other things.

His first heart surgery was in Boston at age 10 days, in April 1999, to save his life; basically, they took the biggest two of the anomalous arteries running between his aorta and lungs, disconnected them from the aorta, and attached them to an artificial pulmonary artery (RV-PA conduit) that they plugged into the bottom of his right ventricle. That gave him more flow to his lungs and allowed him to survive. In February 2003, also in Boston, they did a second surgery to upgrade the conduit to a bigger size and patch the hole between his ventricles. This time, they'll hopefully be able to fit an adult-sized conduit in there and patch the remaining hole between his atria, which may mean no more heart surgeries for many years. One can hope.

I'll be passing through CT (the plan is to take 95 and 84, so I'll probably see New Haven and Hartford) but I don't know that I'll have time to stop on the way, unfortunately...might have a chance on the way back, but we'll see. We're leaving at the crack of dawn tomorrow so we can check into the family house Monday afternoon and be ready for preops on Tuesday.

[krispos42]

38. "lost during development"

Yikes. That is absolutely horrifying.

Rummaging around in his chest like a soda-fountain guy routing syrup and CO₂ hoses at a Burger King... *shudder*



Well, I live along I-95... I can be on the interstate in about 7 minutes. If you're in the mood there are a couple of places around that are decent.

[benEzra]

41. Cool! I'll shoot you a PM if it looks do-able coming back. (n/t)

[Caliman73]

14. I hope everything turns out well

I wish the best for your son and your family.

[bigwillq]

15. What a cutie.

All the best to him. :hug:

[CaliforniaPeggy]

16. Major vibes for your beautiful son, and you and your wife too...

:hug:

[auntAgonist]

17. sending positive thoughts for all of you and for the Drs who will

provide the much needed care for your precious son.


:grouphug:

He's a handsome lad.

Please do update if and when you can.


aA
kesha

[flvegan]

18. Done.

Good luck to your son. And yes, Boston Children's bills with the gods on this.

[Rhiannon12866]

19. What a handsome boy and I'm sending both of you all I've got...

He also must be very brave. But you're right, that this is the best hospital for this, though it has to be scary stuff. I also went to Boston for my surgery, the best medical care in the NE. Take care of yourself and each other and please let us know how he is... :hug:

[JohnnyLib2]

20. Very best wishes for all of you.

Will be watching for updates.

[LibDemAlways]

21. Sending best wishes to your handsome son for a speedy

recovery. You and your family are in my thoughts and I am sending good vibes your way.

[Euromutt]

22. Sincere wishes for an uncomplicated procedure and a speedy recovery

As the father of a perfectly healthy 5 year-old, I can at most begin to imagine how stressful this must be, and I can only sincerely wish you that everything goes as smoothly as it possibly can.

[6000eliot]

23. Best wishes for your little guy and your family.

[sarge43]

24. Vibes and good thoughts

:hug: too.

When you can, keep us posted.

[Mopar151]

25. Our best to the Big Guy = and his folks. n/t

[JCMach1]

26. Our thoughts are with you... good luck

[Odin2005]

28. (((GOOD VIBES))) for your son!

:hug:

[CherokeeDem]

29. Best wishes....

May his procedures be successful and wishing him a speedy recovery.

As you said, we may be 'names' but we are all here because we care about our fellow living beings. The thoughts of all DU'ers will be with you, your son, and family.

What a beautiful shy smile he has!

[mvccd1000]

30. Thoughts are with you and your family.

And best of luck to your son. I'm glad you're able to have him treated at one of the premier facilities in the nation - if anyone can do great things, I'd say that's the place!

[siligut]

31. Strength and energy for successful surgery and recovery

He looks like a happy kid. Just want to add, that in my experience, children who are hospitalized with severe medical conditions often grow-up to be strong, confident, life-loving adults.

[Paladin]

32. Prayers And Best Wishes. (n/t)

[seabeyond]

33. wanting the very best for you all. a tough road. nt

[rurallib]

34. {{{{{{{{{{{ best of luck young man }}}}}}}}}}}}}}}}}}}}}}}

[TuxedoKat]

35. Many

hugs and prayers indeed for a great outcome for your son. :)

[tblue]

36. You can count on me.

Wishing him a wonderful result and recovery. I'm sorry you and he have to go through this. . I have a son too. I will send all my good vibes your way. :hug:

[WildEyedLiberal]

37. Good luck and godspeed little guy!

I was born with a congenital heart defect as well, though your son's condition sounds far more serious than mine was. At any rate, I have lived through four open heart surgeries, and I am a healthy and active 26 year old now, so if you need any encouragement or support please feel free to PM me at any time. Your son is an extremely strong kid - he has to be to deal with all this - and I am sure he'll come through with flying colors. :)

[benEzra]

42. It is awesome to hear from someone who has been through it and come out the other side OK,

not just physically but psychologically. Thank you. That is a big encouragement.

:yourock:

[Tom_Foolery]

39. Best wishes to that fine young man...

:grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug:

[wovenpaint]

40. Sending some famous DU good vibes

to you and your family! :hi:
Best wishes for your whole family. You're all on my reiki prayer list this week.
And-I'm not far from Boston so healing vibes will come thru loud and clear, lol! :grouphug:

[dana_b]

43. thinking good thoughts for your son and

you and his mom. :hug:

[one_voice]

44. What a sweet face!...

Sending healing vibes to your son and peace and strength vibes to you, your wife and your family! I will keep all of you in my prayers!

Good luck!

[LiberalEsto]

45. Goddess, watch over him

and keep him safe

[mdmc]

46. +1

[redwitch]

47. Poor little guy!

I am sure this must be terrifying but he is in good hands. I will keep him in my heart and pray for the best for you all. :hug:

[GreenPartyVoter]

48. How scary for all of you! *hugs* May everything go as well as possible!

[Patiod]

49. We're all with you, BE

Glad you're at a good Children's Hospital.

[bluesbassman]

50. Thoughts and prayers for your boy.

You and your wife too. :hug:

[pacalo]

51. He's such a beautiful little guy.

He and his medical staff will be in my prayers, as well as you & little ben's mother.

:hug:

[A-Long-Little-Doggie]

52. Hi BE... I work at Childrens'

and I know people. PM me if you need ANYTHING, okay?

[benEzra]

180. I will, thanks! They are taking really good care of us here, though.

We're on 8 South now, will transition to 8 East soon.

[friendly_iconoclast]

53. Best wishes for your little guy, and my prayers go out to you + your family n/t

[applegrove]

54. vibes to you and your sweet little guy. I'm sure it will go fine.

[emilyg]

55. Best wishes and a prayer.

[progressoid]

56. ...

:hug:

[madrchsod]

57. hope your son comes out of his surgery ok......

bad hearts are for old people like me not young kids.

[OhioBlue]

58. Hugs, thoughts and positive vibes to you and the little guy

I can't imagine what you're going through.. all my best. :hug:

[ashling]

59. Best wishes

Hang in there dad.

[oneshooter]

60. Our prayers are with you and your Family. n/t

[blueamy66]

61. You're in my thoughts and prayers.

:-)

[TorchTheWitch]

62. sending good vibes to you and your son

Hang in there and try to think good thoughts. That goes for both of you.

Let us know how everything turns out.

:hug:

[alphafemale]

63. He's beautiful.

My wish for him is that the only reason he can hardly catch his breath is that he just raced around the block.

[Xela]

64. Positive vibes, good thoughts...

All the best to the family.

Xela

[PRETZEL]

65. Nice looking young man,

wishing and hoping everything goes as planned.

[theNotoriousP.I.G.]

66. I wish you all strength

and health for your son.

[GCP]

67. I'll be sending you all good thoughts this week.

Children's is a great hospital, he's in good hands.

[msanthrope]

68. I wish your son better health, and you, peace. nt

[Skittles]

69. that is one handsome litttle guy!

wishing the best for you both :D

[GoCubsGo]

70. Finger and toes crossed.

He's a cutie. Hope it all goes flawlessly. Big hug.

[petronius]

71. Best wishes, I'll be thinking of him this week

:grouphug:

That's a wonderful picture, he looks like such a strong and determined young fellow...

[Tsiyu]

72. Bless that little guy

with good health and long life and happiness


:thumbsup:

[benEzra]

73. UPDATE Tuesday 10/4.

Made it to Boston yesterday and started pre-op at 7:10 this morning.  Sitting in the inpatient cardiology preop waiting room right now, between tests. So far: paperwork, front/side chest X-rays, EKG, cardiac echo, blood draw, nuclear lung scan.  Still to go today:  consults with cardiology, anesthesia, and allergy, maybe another blood draw, and probably a shot of prednisone to head off his normal (bad) reaction to IV contrast dye.  Everything appears "go" for the cath tomorrow. I'll try to post some pics whenever I can get to a computer; I'm surfing on my phone at the moment.

[auntAgonist]

74. Continued good thoughts and best wishes!! What a LOT for

a young child to go through. So tough on the parents too.

:grouphug:

aA
kesha

[vard28]

75. Glad things are going as scheduled

We'll be thinkin' about y'all! Our family had a nephew in and out of hospitals away from home for many years in Baltimore, so I know what it's like to do the prep and sitting around waiting routine.

[Lucinda]

77. Continued prayers benEzra

♥

[Arugula Latte]

78. Best of luck to you all.

Sending good thoughts your way.

[WildEyedLiberal]

80. More prayers for your son benEzra

:grouphug:

[CottonBear]

83. Best wishes for your son and your family. n/t

[snacker]

76. Sending best wishes, thoughts, prayers,

and some of those famous DU vibes your way.

[ceile]

79. oh goodness

will keep you and yours in my thoughts.

[WinkyDink]

81. {{{BenBenEzra}}}

[Tikki]

82. Strong vibes coming to the 'man himself' and family....

The Tikkis

[graywarrior]

84. Sending out the biggest vibes from the north of Boston

Let me know if I can be of any help.

[pacalo]

85. I'm keeping little ben in my thoughts & prayers for tomorrow's big day.

:hug:

[Maccagirl]

86. I will add my thoughts and healing light to your son and family.

God bless.

[GoneOffShore]

87. good luck to you and your family

[KC]

88. My thoughts

and prayers are with your little one and you and mom too . When you are able, please let us know how he is doing !

[rbnyc]

89. Your son and your family...

...are in my thoughts and prayers.

Much love your way.

[applegrove]

90. Extra, extra vibes.

[JohnnyLib2]

91. Many good thought and best wishes for all of you.

the update is appreciated... :hug:

[KT2000]

92. What a cutie!

Hoping all goes smoothly. Sending best wishes and good thoughts your way. :hi:

[fortyfeetunder]

93. wishing the best for your son

successful surgery, speedy recovery :hug:

[auntAgonist]

94. a nudge for the "man himself" as he faces more procedures today

good luck and best wishes.


aA

[Submariner]

95. Children's Hospital Boston kept me out of an iron lung

back in the 50s during the polio epidemic, and brought my then paralyzed legs back to life with no after effects. I'm cured. They are the best of the best. Good luck to you and your son.

[benEzra]

96. UPDATE - Wednesday 10/5

Cath is done. They went in and took pressure measurements and images, and decided that the parts he has definitely need to be replaced. So they didn't try to fix anything in the cath lab; heart surgery is now firmly scheduled for Friday.

[CottonBear]

97. All best wishes for your son and you and your family.

I am the mother of a very little boy. I can not imagine what you must be going through. Take care. Peace. CB.

[CottonBear]

98. All best wishes for your son and you and your family.

I am the mother of a very little boy. I can not imagine what you must be going through. Take care. Peace. CB.

[pacalo]

99. Thanks for the update.

I hope little ben isn't scared. I'm so sorry he has to go through all this.

:grouphug:

[krispos42]

101. Ah, jeez.

Good luck to you and BabyBen. :hug:

[auntAgonist]

102. Thanks for the update. Continued good thoughts for

the kiddo and his family.

I'll even swing a rubber chicken if you think it'll help :)


:hug:

aA
kesha

[appal_jack]

100. Best to ya Ben, Son, & family

Glad to know you a bit here at DU, and wishing your son a speedy recovery!

:hi: :hug:

-app

[pacalo]

104. Thinking of you all, sending positive vibes for tomorrow...

as well as prayers.

[Sabriel]

105. Positive thoughts from me and my 12 y.o.

Keep us updated, please!

[pokerfan]

106. In my thoughts

[Riley18]

107. Best wishes for your beautiful boy's speedy recovery.

[Dystopian]

108. Your family is in my prayers..

This has to be so difficult...
Please keep faith...he is in good hands.
He's a beautiful child...
Staying strong, together.

Thank you for the updates...
Please give him a hug from all of us here who are awaiting positive news..
I will keep him in my prayers...




Much peace and love to you and your family...

[benEzra]

109. UPDATE - Friday, 10/7

Aargh. No surgery today. He had a bad allergic? reaction to the IV contrast dye (or something) used in the cath, and spiked a 102-ish degree fever and an awful rash. So we made an unscheduled visit back to Children's yesterday to meet with Allergy, Cardiac Surgery, the cardiology attending, and the preop team, and all agreed that our little boy is way too sick to undergo a surgery this invasive. :-(

SOOOO, the heart surgery has been postponed for 1 month, till early November. We are staying in the family house for a couple days until he is well enough to travel, and then will be heading back to NC to wait, and will probably do some allergy testing at Duke Children's (not too far from where we live) in the interim. Sigh. I so wanted this to be not hanging over our heads anymore, but it's the right thing to do; he needs to be in as good shape as possible going in to surgery and he is definitely compromised right now.

:-(

Since we're stuck here, maybe I'll have a chance to get some pics uploaded, at least.

[MiddleFingerMom]

110. My heart is with him and you all. I know... I KNOW the feeling of "Let's get this OVER with."

.
.
.
They and you are doing the best you can for him. Nothing to be done about
the (I know, interminable wait EXCEPT as to how you deal with it, perceive
it, use it.
.
.
Is he normally well enough for day trips? If so, a trip to a zoo or museum or
nearby waterfall might be tremendous for him.
.
.
Healing and strength vibes still going out to him and all of you.
.
.

[auntAgonist]

111. How disappointing and I'm sure scary for all of you . I hope

your young man feels better really soon and you can be on your way home again.

**healing vibes**

aA
kesha

[Arugula Latte]

112. Oh, I'm sorry. Being in limbo like that is awful.

I don't know what to say but, hang in there. Time passes, and then he will have the operation and on the road to recovery.

[Gormy Cuss]

113. What a disappointment.

I hope that the surgery goes off without a hitch next month.

[pacalo]

114. ...

:grouphug:

[RFKHumphreyObama]

115. My thoughts, prayers, positive vibes and whatever else good I can extend are with your son, you

and your family:hug::hug: It sounds like you all are going through some quite difficult times. We're all here for you:hug:

[JohnnyLib2]

116. That's tough news, I'm sorry.

Good wishes and high hopes for all of you. I hope he can look forward to Halloween in between all the appointments.

[benEzra]

117. UPDATE Saturday 10/8

Looks like his fever finally broke last night, so I think we'll be setting out for NC today if he doesn't relapse. The plan is to do some allergy testing at Duke in the next few weeks and then return here in early November for the heart surgery.

I finally got some pics put up. Monday afternoon, 10/3:




The Yawkey Family Inn in Brookline (affiliated with the hospital), where we're staying. It's right next door to the Ronald McDonald House.




Tuesday, 10/4, pre-op day:




Getting set up for the cardiac echo:




Wednesday, 10/5, cath day. Heading to the hospital:




Wednesday evening, recovering from the cath:





I'll try to post some more when I get a chance.

[WildEyedLiberal]

118. I'm sorry you still have to wait on pins and needles

When you're that close, you just want it over with. How sucky :(

I will continue to send good thoughts and prayers his way, and definitely keep us updated!

[JohnnyLib2]

135. The surgery date is closer, hope your son is feeling good.

Good wishes from here.

[benEzra]

119. UPDATE 10/11 - Surgery date now Nov. 18th.

We had a sick little boy for a while, but we're now back in NC, his fever is now gone, and he's now just dealing with the aftermath of the rash (mostly itching like crazy). He is now scheduled to have the surgery November 18th, so we'll be heading back up to Boston on the 15th. Looks like we'll be spending Thanksgiving up there.

[GreenPartyVoter]

121. *hugs* I hope things run smoothly from here on out, and that he is better soon!

[benEzra]

120. UPDATE 10/11 - Surgery date now Nov. 18th.

We had a sick little boy for a while, but we're now back in NC, his fever is now gone, and he's now just dealing with the aftermath of the rash (mostly itching like crazy). He is now scheduled to have the surgery November 18th, so we'll be heading back up to Boston on the 15th. Looks like we'll be spending Thanksgiving up there.

[ScreamingMeemie]

122. Kicking this...and letting you know he remains in our thoughts.

Hugs to all of you. What a little fighter. :hug:

[handmade34]

123. still in our thoughts!

:hug:

[demmiblue]

124. .

:grouphug:

[FloridaJudy]

132. That must be maddening!

Getting yourself all psyched up to get it over with, and then having it postponed. I'll keep you in my thoughts, and light a candle for you on the 18th. :hug:

[tblue]

134. Sending love and good vibes

to you and your precious son. My heart is right there with you. Keep the family, including yourself, as occupied as possible while you're waiting. Maybe go to a movie or something your sweet son will enjoy. You are strong and wise, I can tell, Ben. He'll pull through, you watch. Meantime: :hug: to all of you.

All the best,
tblue

[Skittles]

136. KEEP US POSTED benEzra

yes INDEED

[Contrary1]

125. We are not just names and text...we are real people here,

And this real person is offering up my hopes, and yes, prayers that your son will get through this just fine.

[flying rabbit]

126. All my best>

to you guys

[LeftishBrit]

127. Very best thoughts to your son!

[annabanana]

128. My thoughts and prayers go out to you and your family

May the best possible outcome result for your dear son.

[auntAgonist]

129. kicking for "the man himself" and your family. Still in my thoughts.

[RedCloud]

130. Vibes sent along cosmic highway. Heal well young man.

[friendly_iconoclast]

131. Kicking- We're still praying for you and your family.

Hope your MA Thanksgiving is a good one!

[applegrove]

133. Double vibes.

[WillParkinson]

137. Best wishes to your family from ours...

And he's an adorable little boy. Hug him for us, please.

[SkatmanRoth]

138. Good vibes flowing his way

[sarge43]

139. Lounge vibes and good thoughts

:hug: for all of you.

[benEzra]

140. UPDATE 11/16 - Back in Boston, surgery scheduled for this Friday.

We're back in Boston for my son's surgery, now scheduled for this Friday 11/18. He is having a bit of an antibiotic reaction (mild skin rash) right now from a test Monday, but they're keeping it under control with medications this time so hopefully it won't push the surgery date back again. Things are a bit hectic at the moment so I'll post at more length later.

[CaliforniaPeggy]

141. Thanks for the update!

NOTHING but good thoughts for all of you, and especially your precious son!

:grouphug:

[friendly_iconoclast]

142. My prayers are with you and your young 'un. Stay strong, Brother benEzra! n/t

[redwitch]

143. Thinking of you and praying too.

I am very hopeful that you will have a great reason to be thankful next Thursday!

[MiddleFingerMom]

145. My heart's taken a PASTING... but I've got some major cardiac healing/recovery hoodoo in me...

.
.
.
... and THOSE are the vibes I'm sending for and to him.
.
.
Working on getting that pillow to him -- not sure it will get there BEFORE the weekend.
.
.
Any time you feel a need to reach out or rant -- whatever -- we are here for you.
.
.
:grouphug:
.
.
.
.
.
.
.

.
.
.
.
.

[Phentex]

146. Good luck!

We'll all be thinking of him. :)

[JohnnyLib2]

147. Many, many good wishes.

The updates re appreciated.

[JohnnyLib2]

149. Kick, with positive thoughts for tomorrow.

:hug:

[WildEyedLiberal]

150. Prayer and vibes for your little guy!

Sometimes the waiting is the worst part. I hope everything goes according to plan and he can have his surgery and be home and recovering in time for Christmas :)

[auntAgonist]

151. Best wishes and good vibes for your son ...

I think of him often and hope for ONLY the best.

aA
kesha

[emilyg]

152. God Bless.

[snacker]

153. Thinking of you

and sending best wishes to you and your son for a successful surgery.

[Demoiselle]

144. Prayers...the best vibes...and my fingers are crossed..

[TheBigotBasher]

148. Best vibes

I hope it goes well for you all.

[benEzra]

154. UPDATE 11/18 - Surgery will be at 7:30am today.

It's 1:24am Eastern time now. Pre-ops went well yesterday and the surgery is scheduled to start 6 hours from now, at 7:30am. We have to be at the hospital at 6 for admitting. Going to try to grab some sleep now. My son went to bed about 10:30pm and is sleeping soundly right now, after watching Buzz Lightyear and Wall-E (his requests), goofing around, and playing with Legos. He is a little apprehensive about the surgery, but I am WAY more scared about this than he is! Trying not to let it show to him, though...

I'll post updates throughout the day as we get them. I have some pics to post but need to do that from my laptop rather than from this phone.

I'd appreciate your prayers and thoughts as the morning rolls on. According to the surgeons, the sternotomy is by far the most dangerous part of this operation, because of the possibility that the conduit or something else important could have adhered to the back of it and could be accidentally cut or torn. That has happened to him once before, in 2003, and was a bit of a close call. After that, things are pretty straightforward.

[JohnnyLib2]

155. Yes, prayers and best wishes right now.

:thumbsup:

[JohnnyLib2]

156. kick; this is the day-----

[hedgehog]

157. Best wishes and hopes going your way!

[benEzra]

158. UPDATE 11/18 - Surgery in progress.

My son was admitted to Children's Hospital Boston around 6am this morning and was taken back for surgery around 7:30. They finished anesthesia and prep and started the actual incision and sternotomy around 9:00, and this will probably take an hour or two since it is by far the most dangerous part. His artificial pulmonary artery runs up the back of his sternum and got cut last time during this process (in 2003), and obviously this is a Really Big Deal if it happens since it's the largest artery in his body. So I'm on pins and needles at the moment...

[onecent]

162. Bless you and my thoughts and prayers go out to your son

and everyone in the family, as well as the doctors. Good luck to you.

[GoCubsGo]

163. Let us know when it's over.

Fingers and toes still crossed...

[geardaddy]

159. Prayers and vibes to you, your son and his mom.

:hug:

[rrneck]

160. All the best, Ben. Hang in there. nt

[nolabear]

161. Been away but now all my saved up vibes are coming your way.

[applegrove]

164. vibes again.

[alphafemale]

165. My heart is with you.

:hug:

[glinda]

166. Light and strength coming your way.

[benEzra]

167. UPDATE 11/18 - Surgery went well!! THANK YOU everybody.

It was very long, and a little risky, but my son came through surgery OK. We went in at 7:30am and he finally left the OR between 5:30 and 6:00pm. He's in the cardiac ICU now, unconscious and sedated but doing well. They were able to make all the upgrades and repairs they needed (replaced his RV-PA conduit with a bigger one, closed his ASD, and made his pulmonary branch arteries bigger) and he had no complications to speak of, except that the scar tissue from the previous surgeries made things tedious.

They will probably wake him up and take him off the ventilator to breathe on his own sometime tomorrow. He'll be in ICU at least through the weekend, but if all goes well he could go to the step-down unit Monday-ish.

Thanks again to everyone for the kind words of encouragement and the prayers and thoughts.

[MrsBrady]

168. good to hear.

:hug:

[vard28]

169. That's great news!

Glad things went well. I can only imagine the worry and stress for you and your family. Take care and thanks for the update. I've been thinkin' about your boy all day long.

[JohnnyLib2]

170. Terrific!

Thanks and hope you get some rest, somehow.

[pacalo]

171. I hope little ben will get well soon.

I saw the newer pictures that you posted upthread. Your son is a cutie!

[CaliforniaPeggy]

172. This was the news I was hoping and looking for!

I KNOW you're relieved! Now, try to get some rest...

:hug:

[krispos42]

173. Ben, I'm sorry I missed your update on your son's condition

Glad to hear he pulled through okay!

:toast:

[Dystopian]

174. Peace of mind...

benEzra
So thankful that all went well with your beautiful child..
He's been in my thoughts and prayers ....

I know. I have awaited while my child was in surgery.
There was nothing more painful...and frightening.
And nothing more joyful than hearing from the MD that all went well...

Sending love and light for continued healing...



peace~

[benEzra]

175. UPDATE 11/19 - First day post-op, doing well, still sedated.

He had a good night overall. He is still unconscious (sedated on dexmedetomidine, morphine, and probably Versed), but his bleeding continues to be better, his numbers look good, his heart rhythms have settled down (they're still running his heart via the pacing wires but he was throwing some abnormal rhythms and possibly A-fib last night, but that's resolved), and he looks good.

We did have a bit of drama yesterday evening when he fought off the sedative enough that he woke up, looked at me kind of wild eyed, freaked out about the ventilator tube down his throat and the artery line in his arm, and tried to pull them out. I held him and talked to him while the nurse put some more Versed in his central line and he went back to sleep, and he's pretty much stayed out since, which is good.

They will be looking to take out the ventilator tube today, probably after rounds so it will be late morning to early afternoon. When they do that, they will also take him off most of the sedative, so he'll be conscious but maybe a little drowsy. They'll continue to give him IV morphine for the pain, I think, and then taper that off as he heals.

Thanks to everyone for their prayers/thoughts/good vibes yesterday!

BTW, Children's Hospital Boston is awesome. They are simply the best in the world at this, bar none. Not just the surgery but the post-op care.

[JohnnyLib2]

176. Great to hear that things are going the right direction.

Some quiet heroics are going on there.....

[sarge43]

177. That's such good news

Thanks for keeping us updated

:grouphug:

[auntAgonist]

178. You must be so relieved that this phase is over. I'm sure

you and your wife are exhausted too.

Thanks for the good news update. I will continue to keep "the man himself" in my thoughts and prayers.

best wishes to all of you.

aA
kesha

[WildEyedLiberal]

179. Fantastic news!

:grouphug:

I will keep your little guy in my thoughts and prayers as he continues his recovery. I am so glad he pulled through with flying colors!

[benEzra]

181. Update 11/19 (#2) - Lots of progress.

I'm headed to bed now (sleeping in the room with him) but wanted to give an update. His chest tubes are out (since around lunchtime), he's off the ventilator (since 6-ish), the artery line is out, and he's drinking a little water and is in good spirits. He's still being externally paced but they may shut that down tomorrow and see what his underlying rhythm looks like. His O2 sats look very good (97-100, damn good for a kid who used to sat in the 60's on room air and who was 88-93 just a week ago), though they're keeping him on a liter of O2 via cannula just to be on the safe side. Hopefully the urine catheter can go first thing tomorrow morning.

Thanks again to everybody for all the thoughts, prayers, and encouragement. He still has a ways to go but he has come SO far in the last 40 hours.

[elleng]

182. WONDERFUL NEWS, benEzra!

:thumbsup:
:hi:
:grouphug:

[Tsiyu]

183. Awesome news

those are great O2 Sat numbers!!!!!

I'm so glad he is doing so well

:hug: to you and that beautiful little guy

[OneGrassRoot]

184. Wonderful news! Continued prayers...

:hug:

[abq e streeter]

185. Very glad to read this update. Sending continuing best thoughts and vibes...