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Our surgery story.(long)(pics)

Posted by on Sep. 17, 2013 at 7:06 PM
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Well Jason had surgery last Tuesday as It says in another post.  Surgery went great and didn't take as long as they had thought it would. So here I was all excited and happy. Way to early for that I found out. So they finally get him settled in picu and let us see him. We go in and of course thinking I was prepared for how he would look. I definitely was not. I immediately had to leave the room when they uncovered his body. I couldn't stop crying. I finally settled down enough to where I could go back in. I finally talk to the nurse and she tells me they are having trouble with his blood pressure. I will say I did not like that nurse one bit. She was a snob and treated us like we was shit parents and shouldn't be in the room or ask anything about him. She didn't do half the stuff she was suppose to do we found out when the next shift nurse came in. Anyways back to the BP. It took till the next morning for it to get regulated. So I start to get happy again. Well yet again something goes wrong. His right lung partially collapsed and both where filling with fluid. So breathing tube wasn't coming out yet and he wasn't allowed to wake up yet. Of course this whole time I have to fight not to cry my eyes out and could no longer hold it in after they told me. So they up the dosage of his lasix and up gave him breathing treatment. I don't remember exactly what they did to get his lung to re-inflate.But by morning they said he was fine and the tube would be coming out that day. They took it out that afternoon and put him on vaportherm for oxygen. He did great all night then around 4am he started throwing up and no longer peeing despite being pumped full of fluids. this lasted all day. Finally they cathed him to see if anything was in his bladder. I left the room for this. When I came back they said it was empty. So they up the fluids and gave more lasix. By around 8 that night he was still vomiting and not peeing. He started to choke and turn blue every time he would gag. They finally told us that his kidneys had stopped working and he was going into kidney failure. How they came to that conclusion I do not know. They said he had an hour to pee which would show they had started working again. They thought they shut down because of all the medications he was on. So they stopped all but the captopril and lasix.They gave him some zofram to get the vomiting to stop. With in a half hour he finally peed. So they had started working again. Now it was Saturday morning. We had been in PICU since tuesday.  The surgeon came in to talk to us and tell us we was moving out of PICU and to the normal floor. We moved to the new room around 4pm. The nurse he immediately grabbed him up by under his arms and my SO flipped on her. She had no clue what he was talking about on how you are not suppose to do that. She wasn't the best of nurses to say the least. We had hoped the night nurse would be better. We was wrong. She would come in and wake him up. He would be screaming crying and she would try and take his blood pressure. When she didn't get one she liked she kept re taking it. She argued with me on the part that was upsetting him she said it was the pressure when the machine did it but it wasn't it was her putting it on his arm. BY this point he was tired of strangers touching him. Finally she listens to me leaves the cuff on and leaves the room so I can calm him. A few minutes later she comes in and just pushes the button to take it again. What do you know best numbers all night. Needles to say she did it this way the rest of the night. Morning comes and the cardiologist and surgeon come in and ask us if we are ready to go home. Of course we say yes. They say good and that we would be leaving that day. By 10am we was on the road heading home :) Since being home he is smiling, laughing and babbling again. He is almost like his old self. Only difference is he is a bit cranky today and doesn't sleep NEARLY as much now.lol. I am very grateful to the surgeons, doctors, and nurses that took good care of my son but I hope we are never there again.

Sorry so long and thank you if you read it all.

^ when we was first able to see him in the PICU

v Taking the chest tube out

v After tube is out


v Breathing tube out.


v First time for me to hold him since giving him over for surgery


v Moving to the general floor


v First day home


v Today The boy I remember and missed all week


by on Sep. 17, 2013 at 7:06 PM
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Replies (1-6):
Evana
by Member on Sep. 17, 2013 at 11:08 PM

I'm so sorry he had such a bad time. You never know how these things will turn out. Once, my daughter had a heart cath that was routine. She ended up with a blood clot and went into respiratory distress. So we were almost ready to  head home, when she got rushed to the ICU.  You just never know....  She was ok by the way. 

There are some nurses that are better than others. There are some nurses that you wonder how they work in their positions and some just don't care... It's unfortunate. I feel ya!

 

JessLackey
by on Sep. 27, 2013 at 7:43 PM

Im glad your daughter was okay. Jason is doing so much better already. You can see a big diffrence in him. I didnt think we would be able to noctice but WOW. He is happier and awake more. Before he would sleep alot. Now he just takes three 10 minute naps threw the day and sleeps the same as before at night. He breathes so much easier too. Im so glad he had the surgery now. We go on monday to see how the patch is holding and discuss everything that will happend from here on out.

Quoting Evana:

I'm so sorry he had such a bad time. You never know how these things will turn out. Once, my daughter had a heart cath that was routine. She ended up with a blood clot and went into respiratory distress. So we were almost ready to  head home, when she got rushed to the ICU.  You just never know....  She was ok by the way. 

There are some nurses that are better than others. There are some nurses that you wonder how they work in their positions and some just don't care... It's unfortunate. I feel ya!



Jerichos_Mommy
by Member on Sep. 28, 2013 at 1:33 AM

I am so sorry he and you had to deal with the scares and sucky nurses.  He is an absolute doll.  Why did he need surgery?

JessLackey
by on Sep. 28, 2013 at 7:48 AM

He had a VSD ASD and a PDA. The VSD was large and started causing his aortic valve to leak. They where going to wait till he was older to do surgery but since it was causing the aortic valve to leak they did it now.  Actually when it started to leak you could tell something had changed. He had stopped growing and even lost weight.

Quoting Jerichos_Mommy:

I am so sorry he and you had to deal with the scares and sucky nurses.  He is an absolute doll.  Why did he need surgery?


Jerichos_Mommy
by Member on Sep. 29, 2013 at 3:07 AM

Oh man that is scary.  I don't know what those abbreviations are but the aortic valve leaking and his changes sound scary. 

JessLackey
by on Sep. 29, 2013 at 7:39 AM

All three are holes in his heart just in different locations.

Quoting Jerichos_Mommy:

Oh man that is scary.  I don't know what those abbreviations are but the aortic valve leaking and his changes sound scary. 


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