Friday, August 5, 2011 12:42 PM, MST
written by Kassie Bonura
haleys a champ
After alot of fear and crying this morning, we made it to the hospital, I kept telling nick he needs to calm down. hahhaha
Ok serious now, Haley did awesome! She did have tears this morning, but we put on her favorite cd in the car and danced our way in. There was alot of waiting, but we brought movies and a blanket that a special friend made her. They said they could not put her out while she was with us, so she had to go back with the nurse with out mom and dad. she got nervous alittle but dealt with it and said she could do it. the nurse just came out and told us Haley did awesome. the nurse was really excited about it. When it was time the nurse came in and haley was ready, baby in hand and blanket on her shoulders, my baby girl walked back to the operating room with the nurse by herself! I kept looking to see if she would look back and she never did, the nurse said she asked haley if she wanted her to carry her or hold her hand and haley shook her head no. they let her sit up until the sleepy gas took effect and then they did all the IV's and all that stuff. So they are testing the different meds now to see which ones if any will lower the pressure. Estimated 45 min to an hour left. then we will be in recovery for 4 to 6 hours. We are doing great. God is a great foundation to be standing on. We should get the results in an hour or so, then a call to the surgeon for discussion, and we should have a date for surgery tonight, if surgery soon is part of the plan.......
Ok serious now, Haley did awesome! She did have tears this morning, but we put on her favorite cd in the car and danced our way in. There was alot of waiting, but we brought movies and a blanket that a special friend made her. They said they could not put her out while she was with us, so she had to go back with the nurse with out mom and dad. she got nervous alittle but dealt with it and said she could do it. the nurse just came out and told us Haley did awesome. the nurse was really excited about it. When it was time the nurse came in and haley was ready, baby in hand and blanket on her shoulders, my baby girl walked back to the operating room with the nurse by herself! I kept looking to see if she would look back and she never did, the nurse said she asked haley if she wanted her to carry her or hold her hand and haley shook her head no. they let her sit up until the sleepy gas took effect and then they did all the IV's and all that stuff. So they are testing the different meds now to see which ones if any will lower the pressure. Estimated 45 min to an hour left. then we will be in recovery for 4 to 6 hours. We are doing great. God is a great foundation to be standing on. We should get the results in an hour or so, then a call to the surgeon for discussion, and we should have a date for surgery tonight, if surgery soon is part of the plan.......
Thursday, August 4, 2011 11:34 PM, CDT
written by Kassie Bonura
Finally haley wanted to talk about tomorrow. We explained as much as we knew was going to happen, by the end she was ok with it. Thank you God. We could tell a change in her. Now shes sleeping peacefully. Im already ready for tomorrow to be over.
Its still a bit unbelieveable, I sat and watched haley play non stop in the pool for an hour and a half today, nothing hurts, never abnormally out of breath, no fainting, blue skin, nothing. How can she be so "normal"? God never ceases to amaze me. Good night.
Its still a bit unbelieveable, I sat and watched haley play non stop in the pool for an hour and a half today, nothing hurts, never abnormally out of breath, no fainting, blue skin, nothing. How can she be so "normal"? God never ceases to amaze me. Good night.
Thursday, August 4, 2011 10:50 AM, MST
written by nick bonura
Just a thought.
SO... Kassie and I have really been trying to keep things normal in the house and I guess discipline is normal with 2 kids running around. We have both found it difficult to be stern with Haley during the past month. There came a time yesterday that Haley needed to be talked to by Dad. Thats the worst right? haha. well as I was talking to her I realized something, "shes so small. When did haley become small???" So if you can imagine... I was having 1 conversation with her and 1 with myself. I started thinking about how often poeple(me included obviously) think about how big their children are and how "grown up" they need to act. And somehow forget how small they are! and how silly they should act! Haley has always been the one who is really mature and serious for her age! Very polite with just enough attitude mixed in. Haley used to remind me all the time when I'd correct her... in a very cute but serious voice "gosh dad! I'm only 4" She hasn't reminded me of her age since she turned 5(official big girl age), but maybe its my turn to remind her?
Thursday, August 4, 2011 8:16 AM, MST
written by Kassie Bonura
next step goes...
We go in tomorrow at 8:30, surgery at 10:30am. The surgeon should discuss the results with us right after, and then the nurse said they would have another meeting right then and we should know the plan and surgery date friday.
Haley knows everything that is going to be happening, but she is still going to an unknown place with strange masked people and mom and dad cant be there for part of it, all the reassurence I can give is not enough.
Haley knows everything that is going to be happening, but she is still going to an unknown place with strange masked people and mom and dad cant be there for part of it, all the reassurence I can give is not enough.
Wednesday, August 3, 2011 10:45 PM, MST
written by Kassie Bonura
Worst part
Its really hard to prepare a 5 yr old for surgery, just to tell them nevermind were going to do a smaller surgery and then the other one later. Shes scared and thats what hurts the most.
Tuesday, August 2, 2011 9:32 AM, MST
written by Kassie Bonura
surgery date changed
Friday we had a meeting with the surgeon to talk about how haleys surgery was going to go. He was explaining that he sees kids like this all the time, and very laid back and no big deal attitude, then he explained to us how a typical VSD surgery goes. He did not know she had a heart moniter on for 24 hours and he did not look at her echo video.We were confused, every other doctor or nurse we talked to was concerned and said they rarely see kids this age with holes this big. I'll write the back story later. Then the surgeon listened to her heart and started talking about if her heart doesnt work correctly on its own after, pacemakers and meds. but we set the date for Thursday and left. At Phx childrens, they get all the surgeons and cardiologists together and they all look over the cases and then have many opinoins and ways to fix things. So we were given the impression that this meeting has already taken place a week before we met with the surgeon, because after all why would you meet with someone about a serious surgery when they dont know your specific case. They finally met with everyone yesterday and i got a call from the cardiologist that morning stating that they reviewed everything and decided they needed to do a cardiac catheter surgery first to test the pressures in her heart.....this was a surgery the cardiologist and 1 surgeon decided against because of the risk of putting her under twice wasnt worth it. But after review they decided they need the information to do the surgery more safely. Through the tests results they see that the right side has higher pressure then the left, which means that blue blood is getting over to the red side, non oxygen blood is being pumped to her body. We were always told if this happens it makes a bad situation even worse. When the sugeon listened to her heart at our meeting and changed his tune a bit, was because he was shocked to hear a 2nd heart sound which means high pulminary pressure, and her oxygen saturation is lower then they thought. I guess preparing for a meeting with patients is something you should actually do. Also the cardiologist and the surgeon, who called right after i talked with the cardiologist, both said that they don't see huge unrepaired holes in a child this old. I really dont like doctors that dont listen or take me seriously.
They are concerned and being careful with haley because they dont see this often, the cardio. said they dont have 10,000 cases they can rely on for info. They really cant tell us how its gonna go or the risks specific to her. Also VSD surgery is done alot.....but not kids who have had 2 huge ones for the past 5 years, they are worried about what happens after, how her body reacts and functions. My first question after this all soaked in was, her body is working one way for 5 years, how do we know its not going to freak out and not work after we change it.....their answer....we don't...... alright not what i was looking for.
With the blood going to the other side that causes irreversable damage to her heart and lungs. Her asthma is probably cardiac asthma, caused by her lungs being soggy from the extra blood being pumped into them. Hopefully that will be gone after.
We are looking at more like 10 days in the hospital. I wonder now do we meet with the surgeon again before surgery to actually do what he was supposed to do the first time? We have the catheter surgery on friday aug.5th. at 10:30. and surgery should be done next week. Praying for tuesday so my sister and her family will be able to know her status before they leave.
They are concerned and being careful with haley because they dont see this often, the cardio. said they dont have 10,000 cases they can rely on for info. They really cant tell us how its gonna go or the risks specific to her. Also VSD surgery is done alot.....but not kids who have had 2 huge ones for the past 5 years, they are worried about what happens after, how her body reacts and functions. My first question after this all soaked in was, her body is working one way for 5 years, how do we know its not going to freak out and not work after we change it.....their answer....we don't...... alright not what i was looking for.
With the blood going to the other side that causes irreversable damage to her heart and lungs. Her asthma is probably cardiac asthma, caused by her lungs being soggy from the extra blood being pumped into them. Hopefully that will be gone after.
We are looking at more like 10 days in the hospital. I wonder now do we meet with the surgeon again before surgery to actually do what he was supposed to do the first time? We have the catheter surgery on friday aug.5th. at 10:30. and surgery should be done next week. Praying for tuesday so my sister and her family will be able to know her status before they leave.
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