Monday, September 19, 2011 8:37 AM, MST
written by Kassie Bonura
Goodmorning. These past couple weeks have been pretty uneventful as far has medical things. We got the ok to go camping up north at mormon lake, where Haley and Ashley got to be flower girls in their grandpas wedding! It was rainy and cold, but cleared up right in time for the wedding and was warm enough for the girls to wear their dresses. Haley was breathing fine up there, she did complain of her legs hurting after walking for awhile and she turned blue when she got cold. We had a really good much needed rest from everything. A few days after we got home Haley had some chest pains, pressure feeling not sharp, her vitals were normal and she had no other pain. I emailed the cardiologist, to get it documented, and just incase this was some sort of sign of emergency. He said it wasnt urgent, and he was impressed with the detailed report we sent him. : ) Her meds are going well, no nose bleeds.
So there has been some confusion on the issues of Haley, which I can understand with it all happening so fast and me writing. I want to try and explain where we are now for understanding and also so you can pray more specifically.
Haley has been diagnosed with severe pulmonary arterial hypertension, 2 large unrepaired VDS, and repaired PDA. With the vsd's and the pah her heart and lungs are working together so much so she has no symptoms. The doctor says she has about another 20 years if nothing changes, I still have to ask where that number comes from. This were we are right now.
The medications she is on are to attempt to stop her arterial bed from continuing to harden. When i say arterial bed I am talking about all arteries going from her heart to lungs. There are the obvious big ones but also the millions of little ones covering her lungs. The actual lungs are fine. So meds to stop the degeneration but also to reverse it, hopefully causing the arteries to relax and open back up. Some of the doctors are cautiously hopeful, while others say no way. Whatever, if its in the plan we have something thats way more powerful then any doc, surgery, or medicine.
So far no change from the meds. We did know that the meds could take a while to even start working so we still have hope. When the arteries relax that will cause her lungs to see a whole lot more blood then they are used to. When that happens the heart and lungs will no longer work together, causing heart failure! Woohoo!! Surprisingly this is what we want. The doctors say we will notice small signs and they will see bigger ones way before it is emergency. When this happens the goal is to go in and fix the holes. Which should then make the lungs and heart work together once again!
Our want is for this surgery to work and for haley to be medicine free.
The only cure for PH is a lung transplant. In haleys case it would have to be heart and lung. This is an option, but its a really crappy one that we chose not to give any more thought. The survival rate after 3 years of a H&L transplant is 50%, in addition to the meds and horribleness of this, its not worth it to us.
Haley is doing amazing, ashley is glad to have us all home, mom and dad are doing good too. There is just alot of stuff to think about and worry. But today, today is good and we will be glad for it and enjoy our time together.
So there has been some confusion on the issues of Haley, which I can understand with it all happening so fast and me writing. I want to try and explain where we are now for understanding and also so you can pray more specifically.
Haley has been diagnosed with severe pulmonary arterial hypertension, 2 large unrepaired VDS, and repaired PDA. With the vsd's and the pah her heart and lungs are working together so much so she has no symptoms. The doctor says she has about another 20 years if nothing changes, I still have to ask where that number comes from. This were we are right now.
The medications she is on are to attempt to stop her arterial bed from continuing to harden. When i say arterial bed I am talking about all arteries going from her heart to lungs. There are the obvious big ones but also the millions of little ones covering her lungs. The actual lungs are fine. So meds to stop the degeneration but also to reverse it, hopefully causing the arteries to relax and open back up. Some of the doctors are cautiously hopeful, while others say no way. Whatever, if its in the plan we have something thats way more powerful then any doc, surgery, or medicine.
So far no change from the meds. We did know that the meds could take a while to even start working so we still have hope. When the arteries relax that will cause her lungs to see a whole lot more blood then they are used to. When that happens the heart and lungs will no longer work together, causing heart failure! Woohoo!! Surprisingly this is what we want. The doctors say we will notice small signs and they will see bigger ones way before it is emergency. When this happens the goal is to go in and fix the holes. Which should then make the lungs and heart work together once again!
Our want is for this surgery to work and for haley to be medicine free.
The only cure for PH is a lung transplant. In haleys case it would have to be heart and lung. This is an option, but its a really crappy one that we chose not to give any more thought. The survival rate after 3 years of a H&L transplant is 50%, in addition to the meds and horribleness of this, its not worth it to us.
Haley is doing amazing, ashley is glad to have us all home, mom and dad are doing good too. There is just alot of stuff to think about and worry. But today, today is good and we will be glad for it and enjoy our time together.
Wednesday, September 7, 2011 3:11 PM, MST
written by Kassie Bonura
doc appt
Haleys doctors appt. went well. We did an echo. Everything looks the same. We doubled the one medicine and made another appt. for 6 weeks. We just wait now. We will not catheter again until we see some evidence that something has greatly changed. We spent 2 hours with her doctor just talking and making sure what we think is happening is the same as him. and it was. Dr. was very proud that we knew and understood so much, nick said with all this I dont understand how you couldnt know. We did learn though that the reasons she went in for the EKG and echo did not point to this. The fact that the holes were even found, the doctor said, was an accidental blessing. He said when he first saw the EKG it looked pretty normal except for an extra beat when she breathes. He told the NP to do an echo just for peice of mind....which we had already done. Thats when they came in shocked. So I thought that her heart beat drastically changed but I guess we dont know that for sure. It is all crazy, unreal, and amazing all at once. The doctor did say that haveing her on oxygen is helpful but it will not make or break it basically. So that is good, we can be a bit more leaniant on that. This is going to be an extremely long road. I am so thankful God gave me a ROCKSTAR! Please keep us in your prayers.
Friday, September 2, 2011 6:43 AM, MST
written by Kassie Bonura
Good Morning! Haleys cardiology appt has been moved to tuesday. The appt today was supposed to be with the nurse practioner, and the way I understand it she would look at haley take vitals, write down our questions, run everything by the doctor, who we would then see a week later. My concern is we have to pay the co pay for her to be looked at and then again to get any info. We figured it out and he squeeezed us in for tuesday. I think the doctors are concerned and care but i feel out of sight out of mind, which i somewhat understand. It was hard but the hospital was the most comfortable place because of this reason.
Haley had her first parent teacher conferences. She is doing well, has a bit of catching up to do. She is a quick learner though and her teacher is really helpful on getting us the things we need to help her. Her teacher is great, and the school has been very understanding and caring. Since the conferences were during the day the kids had their first sub! The school felt a bit nervous not having her teacher in the room with the possiblity of an emergency, so they suggested I come in. I had a blast. I loved the class and got to see all the friends haley comes home talking about. Let me just add God bless teachers! (especially kindergarten ones)
Back to Haley, her nose is healing up well as far as i can see. She has had some issues but i think it is just from the scab being dry and healing. No more nose bleeds though!! Her cough went away, im not sure what that was about. She gets random ones though, nothing but a cough and it never gets caught by anyone else.
We were listening to her heart last night. I wish I could record it easily. We call it her musical beat. Normally your heart has a loud beat and a quiet beat, Haley has a loud beat and a louder beat. Not sure if this is normal, but when she holds her breath her heart beat speed drops by about half. It is crazy to hear. I can't hear my heart do it though.
She is back on oxygen 21.5 hours a day. It is amazing all the looks I get when we venture out, like I did something wrong. Oh well I have come to the conclusion people are weird and like to make up their own ideas of the story. : )
I got a call from Phoenix childrens the other day asking if i wanted them to fax the medical record release forms they had found on a table in the nurses station....um yes I wanted you to do that 2 weeks ago when i gave them to you! Everything is crazy and as if its not hard enough having a child with a problem they have to add on the difficulties with keeping insurence and doctors on track. I think the saying God will never give you more then you can handle needs to be revised. Because I have learned I cant handle anything on my own, especailly this. I am unbelievably thankful that His shoulders are a hell of alot bigger then mine, with a load this big I would be smashed to an unrecognizable mess. :-)
doc. appt this tuesday morning, I will update after that.
Haley had her first parent teacher conferences. She is doing well, has a bit of catching up to do. She is a quick learner though and her teacher is really helpful on getting us the things we need to help her. Her teacher is great, and the school has been very understanding and caring. Since the conferences were during the day the kids had their first sub! The school felt a bit nervous not having her teacher in the room with the possiblity of an emergency, so they suggested I come in. I had a blast. I loved the class and got to see all the friends haley comes home talking about. Let me just add God bless teachers! (especially kindergarten ones)
Back to Haley, her nose is healing up well as far as i can see. She has had some issues but i think it is just from the scab being dry and healing. No more nose bleeds though!! Her cough went away, im not sure what that was about. She gets random ones though, nothing but a cough and it never gets caught by anyone else.
We were listening to her heart last night. I wish I could record it easily. We call it her musical beat. Normally your heart has a loud beat and a quiet beat, Haley has a loud beat and a louder beat. Not sure if this is normal, but when she holds her breath her heart beat speed drops by about half. It is crazy to hear. I can't hear my heart do it though.
She is back on oxygen 21.5 hours a day. It is amazing all the looks I get when we venture out, like I did something wrong. Oh well I have come to the conclusion people are weird and like to make up their own ideas of the story. : )
I got a call from Phoenix childrens the other day asking if i wanted them to fax the medical record release forms they had found on a table in the nurses station....um yes I wanted you to do that 2 weeks ago when i gave them to you! Everything is crazy and as if its not hard enough having a child with a problem they have to add on the difficulties with keeping insurence and doctors on track. I think the saying God will never give you more then you can handle needs to be revised. Because I have learned I cant handle anything on my own, especailly this. I am unbelievably thankful that His shoulders are a hell of alot bigger then mine, with a load this big I would be smashed to an unrecognizable mess. :-)
doc. appt this tuesday morning, I will update after that.
Saturday, August 27, 2011 12:47 PM, MST
written by Kassie Bonura
Hello! Haley is doing well. She enjoyed her first full week of school, and was bummed to find out today is saturday. She sneezed out her nose plug thurday night, thankfully at home. It was pretty impressive. So she has to get used to the nasal cannula again. Although last night I got woken up at midnight to a child crying covered in blood holding her nose. It was just a little, probably what some would consider a normal one. It only took about 20 min to somewhat stop it, but even the intense pinching we were taught didn't do it, the bleeding was coming from the back. But im not worried, no throwing up or bleeding from her eyes. We are watching it.
Im still fighting to get haleys old medical records from st. Joes. I called and they said they never received a request. So I did a new one. Still waiting to hear from PCH and her cardiologist. This is a challenge for me to keep all my notes in order so I can make sure the doctors are communicating. Its been crazy.
Either way, next appt. on friday.
Oh and we joined a group called Hopekids, that does fun events with other kids similar to haley. She and I were talking about how most kids don't know what its like to have surgeries, hospital, meds...etc. She was suprised at that. Which kind of suprised me. Anyway we haven't done anything with other families, but we are super excited to!
Thanks for checking in. We are in a waiting phase, please keep praying for haley, this is far from over.
Im still fighting to get haleys old medical records from st. Joes. I called and they said they never received a request. So I did a new one. Still waiting to hear from PCH and her cardiologist. This is a challenge for me to keep all my notes in order so I can make sure the doctors are communicating. Its been crazy.
Either way, next appt. on friday.
Oh and we joined a group called Hopekids, that does fun events with other kids similar to haley. She and I were talking about how most kids don't know what its like to have surgeries, hospital, meds...etc. She was suprised at that. Which kind of suprised me. Anyway we haven't done anything with other families, but we are super excited to!
Thanks for checking in. We are in a waiting phase, please keep praying for haley, this is far from over.
Monday, August 22, 2011 6:20 AM, MST
written by Kassie Bonura
We are home! Haley is doing well. Ashley is super excited we are home. Haley has a gel packing in her nose that goes up one side and all the way down to where her nasal cavity meets her throat. You know when you have a cold or something and you get that nasty thick mucus in the back of your throat on top? Haley has felt like that since friday. She cant effectively breath through her nose, so she has been getting used to mouth breathing. Its tough at night. She has to wear an oxygen mask until her nose is clear and she can go back to the nasal canula. Which should be soon. The gel is supposed to dissolve but once small enough it can be sneezed or blown out, all at once or in peices. I am nervous sending her to school understanding she is 5 and probably wont get to the tissues fast enough. I know that kids can be brutally honest, but through this I have also learned that if kids understand whats happening they could care less when kids are a bit different. So I guess its true that ignorence leads to fear, and its pretty clear all the things fear leads to. So celebrate differences and teach the kids!
Its been difficult to get her to wear the mask. She is only being forced at night, but once the gel is gone its back to all day minus school. Part of us wants it to be easy and let her not wear it, but one thing we decided at the beginning was there are no regrets. If things go the unexpected way we do not want to have any if we only...statements. We fully understand that we are doing what we can and if the meds dont work, it is not any thing we did or didnt do, as long as we are doing everything we know to do. With that said the expectations are the meds will work perfectly, she will have the holes repaired, along with complete healing and restoration. Call me crazy, unrealistic even, but no matter what happens I know Haleys life is and will be perfect.
She is incrediably strong and joyful. She gets this from her dad and me....oh wait ...if we got our strength from people, dad and I would get it from her.
Our next appt with the cardiologist is sept 2, we are doing another echocardiogram. In honor of aunt jessica's birthday it will be a great appt.
Here's to another week!
Its been difficult to get her to wear the mask. She is only being forced at night, but once the gel is gone its back to all day minus school. Part of us wants it to be easy and let her not wear it, but one thing we decided at the beginning was there are no regrets. If things go the unexpected way we do not want to have any if we only...statements. We fully understand that we are doing what we can and if the meds dont work, it is not any thing we did or didnt do, as long as we are doing everything we know to do. With that said the expectations are the meds will work perfectly, she will have the holes repaired, along with complete healing and restoration. Call me crazy, unrealistic even, but no matter what happens I know Haleys life is and will be perfect.
She is incrediably strong and joyful. She gets this from her dad and me....oh wait ...if we got our strength from people, dad and I would get it from her.
Our next appt with the cardiologist is sept 2, we are doing another echocardiogram. In honor of aunt jessica's birthday it will be a great appt.
Here's to another week!
Friday, August 19, 2011 3:05 PM, MST
written by Kassie Bonura
She is resting
The surgery went well, only took about 30 minutes. The ENT that did the surgery was the first one that we saw a couple days ago. The anesthesiologist was telling me about the risks and that with pulmonary hypertension the risks are greatly increased. She said that because of the meds Haley is on she feels less nervous then she normally does. Suprisingly that brought me some comfort. Then they rolled her away, she was down the hall and through some doors and I could still hear her screaming for me : ( After, haley was brought back to our room where she started to wake up, she had some left over blood inside that they could not suction out, she spent some time getting that up and out. They gave her a bit of sleepy meds, just to help with the transition to awake.
The anesthesiologist told us they found a pulsing blood vessel in the back of her nose, which was way up there and was blocked from sight by a swollen part of her nose. She said that the majority of the blood was coming from this and running straight down her throat. The ENT cauterized that and also her adenoids, which they found were also bleeding. They also packed her nose with some sort of dissolvable plug. The nurses and anesthesiologist were saying that he packed it pretty far up there. So she is resting peacefully now, stats look good. I am so glad we forced them to look further.
Before the anesthesiologist left she was talking with the head nurse practioner and said the only reason she agreed to our surgery was because of the meds haley was on. Well I thank God for the meds and for her willing to do this for us.
Feeling good. ready to go home.
The anesthesiologist told us they found a pulsing blood vessel in the back of her nose, which was way up there and was blocked from sight by a swollen part of her nose. She said that the majority of the blood was coming from this and running straight down her throat. The ENT cauterized that and also her adenoids, which they found were also bleeding. They also packed her nose with some sort of dissolvable plug. The nurses and anesthesiologist were saying that he packed it pretty far up there. So she is resting peacefully now, stats look good. I am so glad we forced them to look further.
Before the anesthesiologist left she was talking with the head nurse practioner and said the only reason she agreed to our surgery was because of the meds haley was on. Well I thank God for the meds and for her willing to do this for us.
Feeling good. ready to go home.
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