Tetralogy of Fallot - Page 2 - Mothering Forums

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#31 of 43 Old 04-17-2006, 07:48 AM
 
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Originally Posted by alphaomega2213
i just wanted to tell everyone that we found a ped. that is very attentive to bailey, and we share the same faith so i am so thankful! just wanted to share the good news!
Yay for you!!!!

My only comment is to get a cardiologist you like too.


Just to share our good news:
DS had his ToF corrective surgery on Mon 4/10 and was discharged from the hospital on Saturday 4/15! We were a little scared at first because the surgeon said that although everything was anatomically perfect after the surgery, his heart was behaving as though they hadn't been able to save his pulmonary valve. He was not on the recovery path they expected & may have to stay on the respirator for 2-3 days. As it turned out he was off the respirator the next morning and they wanted me to try nursing him! He was a real trooper! We were concerned that the laughing, smiling boy we took to the hospital hadn't come back yet. He was physically healthy, but just not the same. Well, he took a big long nap on the way home from the hospital. He was so out we left him in his car seat and just carried him to whatever room we were in. Sunday he started smiling and laughing again, and on Monday started interacting and playing games with us like he used to. Everything is just wonderful!!!! (knock on wood)

I'm off to bed, just had to share!
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#32 of 43 Old 04-17-2006, 10:04 PM
 
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i was just wondering...how long were you not able to hold him...or cuddle him...or anything....? i am just a little nervous although i have heard that you tend to feel a lot of relief after surgery. Did they teach you how to hold him and everything....i have so many questions...if you dont mind would you just
email me at alphaomega2213@aol.com ?
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#33 of 43 Old 04-18-2006, 05:32 AM
 
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Originally Posted by alphaomega2213
i was just wondering...how long were you not able to hold him...or cuddle him...or anything....? i am just a little nervous although i have heard that you tend to feel a lot of relief after surgery. Did they teach you how to hold him and everything....i have so many questions...if you dont mind would you just
email me at alphaomega2213@aol.com ?
Oh, I'd be happy to email. But in case anyone else wants to know, here's the short version.

While the respirator tube was in we had to be careful to stand on the correct side of his bed so that he wouldn't turn his head against the tube to see us. We could hold his left hand; the right had his arterial line so the whole arm was splinted so he wouldn't pull out the line (he is a wiggly worm). We could also stroke his head and his legs. We did a lot of that so even though he was still pretty out of it. I don't think he felt like he didn't get enough touching the whole time.

On the 2nd day post-op the breathing tube was out but he still had 2 chest tubes for drainage so I couldn't pick him up without the nurses' help. There were just too many wires and tubes. But I held him and even offered him a breast for comfort nursing that day. All he did was smell that it was me really.

Each day more stuff would come off so it got easier and easier to hold him without a nurse's help getting him out of the bed. He is also very fond of being vertical so the head of his bed was cranked up and rolled blankets used to keep him from sliding down or off to the side. There were several times that I wanted to climb in there with him, especially when he was sleeping and I didn't want to pick him up and wake him!

I think we were very lucky in that it was only the day of surgery that we couldn't hold him. Also, the nurses were very positive about getting him back on the breast. The only thing they thought was weird was me wanting to try him in the sling. He loves it so I thought it would help me hold him, but it turned out that the pressure was too much on his tummy (still had the chest tubes in at that point). I haven't tried it again yet. I may attempt it tomorrow since today he was willing to lean his chest/tummy on my shoulder without arching his back to keep them from touching me. It's been confusing for him because that's one of his fave comfort positions. In the hospital I would sit him up (he's a good sitter)and lean way over so that his forehead was nestled into my neck. It approximated the way I hold him sometimes without the strain on either of us. It helped him settle down after he had to sit still for medicine or something that he didn't like.

The trick to holding and lifting him is to either have your forearm along his back with his head in the crook of your elbow and your hand under his butt, or one hand around his body and the other under his butt. Luckily (??) for me I hurt my hand in February and had to start carrying him like that immediately to avoid pain in my hand. So he and I had some practice and it doesn't seem to bother him at all not to be lifted up with hands under his armpits (a big no-no).
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#34 of 43 Old 04-18-2006, 10:07 AM
 
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thank you so much for emailing me and replying...it just helps to hear a first hand account of what really happens....you know....from parent to parent...i am glad your little boy is doing well now! i will keep him in my thoughts and prayers...
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#35 of 43 Old 04-18-2006, 02:43 PM
 
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Quote:
Originally Posted by alphaomega2213
thank you so much for emailing me and replying...it just helps to hear a first hand account of what really happens....you know....from parent to parent...i am glad your little boy is doing well now! i will keep him in my thoughts and prayers...
I totally understand. Feel free to ask me whatever comes to mind. I had a mom to ask questions of too. Her son is now about 7 years old, I think, and had the surgery when he was 7 weeks old. Obviously there were many things different about the situations since DS was able to wait until he was 10 months old, but it still gave me a jumping-off point to start asking the surgeon questions. So even getting info that didn't apply to us was helpful.
s
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#36 of 43 Old 04-18-2006, 09:48 PM
 
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alphaomega, this is slightly OT, but I wanted to say that one of my patients when I was doing bedside nursing in L/D floor was a lady born with ToF in having her own baby the good old fashion way. It is amazing how the treatments are better now and people are going on to live normal lives after being born with ToF.
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#37 of 43 Old 04-19-2006, 01:02 AM
 
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HI, just wondering how babe is doing.
My ds was born with TAPVR another complex chd. No help with ToF but I have been there done that, partly.
I have to say it is amazing how well these kids do. My son had his ohs at 2 days old and is absolutely thriving now at 2.. you would never know he had anything wrong.
Anyway, just wanted to say hi, us heart parents have to stick together!
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#38 of 43 Old 04-19-2006, 04:51 PM
 
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thanks so much for the encouragement and concern you all have shown us...we will keep updating
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#39 of 43 Old 05-24-2006, 03:57 AM
 
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hi, just wanted to let everyone know that my son's surgery for his heart is on july 12th so please be thinking about him. thanks
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#40 of 43 Old 05-24-2006, 05:37 AM
 
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Absolutely!

We had a post-op consult with the surgeon on 4/25 (15 days after surgery) and were told he could get his incision site wet. That was great news as the adhesive they use to hold the steri-strips on was really itchy to him. The last steri-strip came off about 2 weeks later at the check-up with the cardiologist. I swear I soaked that last one at least once or twice a day but it wasn't budging. It was the gel they use during the echo-cardiogram that got it off finally.

One thing that surprised me was that he has a new murmur. Maybe they told us that it was to be expected, but I don't think so. : It's supposed to be different from the one he had before surgery and was totally expected, blah, blah, blah. I could swear they didn't mention it to me, so I wanted to make sure you heard about it in time to ask your doctors.

At about 5 weeks post-op DS was back to having tummy time. If he wants a toy that is more to the front than the side he is finally willing to just plop on his tummy and wiggle/roll over to get it!

He can be picked up under his arms again, although I try to remember not to do it. At first if we forgot his arms would go limp and straight up so there was no armpit for your hand to be in. Obviously, he didn't want to be picked up like that! When he stopped doing that we knew it was ok to start picking him up the old way again.

The day that we went to see the surgeon he had to have post-op xrays done. On the off chance that I had conceived again, my mom stayed with DS and I waited out in the hallway. A hospital chaplain happened to walk by and she started talking to me. Her son had needed open heart surgery when he was small. She told me that his doctor had explained not to worry about what they can do and how much to push them to be active after surgery. Babies aren't like grown-ups and don't have our psychological issues. They will try something and if it hurts they will stop. After they have forgotten that it hurt last time, they will try again. That is exactly what my son did. I encourage him to explore the same way I did before and let him decide when he has had enough. Sometimes it was hard not to just jump in and do things for him, but it I'm glad I didn't now that he is doing so well.

Sorry this kind of rambles but I'm tired. I just tried to include all the stuff that I can think of that might help you (and that we haven't talked about before).

BTW, I have a public photo album that includes some shots of his scar if you want to see them. It's on Yahoo, but I don't think you need a Yahoo ID to see them:

http://pg.photos.yahoo.com/ph/kmhyou...b6X6EBEw5sicgX
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#41 of 43 Old 12-04-2007, 01:41 PM
 
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My son has TOF. He is 3 months old and is going to have his corrective surgery this Friday...I'm so scared, and so uneasy about not being able to just hold hiim and nurse him whenever he wants.... I cry thinking about it

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#42 of 43 Old 12-04-2007, 02:49 PM
 
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We'll be thinking of you and your sweet baby. Lots of positive thoughts and prayers.

Everything will be fine.
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#43 of 43 Old 12-04-2007, 05:46 PM
 
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Awww,mama....I know it's scary. I'm sure your babe will be fine. Samuel didn't have his repair til' he was almost a year old,but everything went well. Your little guy is the youngest I think I've ever heard of them repairing....is he having blue spells?
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