Wednesday, August 10, 2011 3:14 AM, MST
written by nick bonura
We spoke with the cardiologist yesterday and we feel confident we have found the best solution for treatment. We will be stacking a second pulmonary hypertension medicine in addition to the current one and will continue oxygen treatment. Haley will remain in the hospital for anywhere from another 2-4 weeks we are thinking. Then we will continue the same treatments at home with monthly visits for blood work and probably echo’s to verify the meds are not creating new problems. This is from a guarantee, but there are not many options. In 8 weeks or so Haley will go in for another cath operation to see if the meds are working. The basic thought is to reduce the pulmonary pressure down to a level that is safe to perform the heart surgery. Its unsettling to think that a month ago we were terrified of open heart surgery, and now we pray for the day we are able to schedule that same surgery! Haley is doing well but has her ups and downs. I think seeing people concerned about her bothers her. As much as she loves the spotlight I think she’d rather star in a comedy VS. a medical drama! haha, Hopefully Kassie will log on today and talk about all Fun adventures Haley has been up too!
Tuesday, August 9, 2011 7:37 PM, MST
written by Kassie Bonura
We have a Plan
Alright everyone, We have talked with the doctors, who have talked with the specialists, and we have a plan that we are comfortable with but we need to sleep on it. But we will definatly be in here through next week, then it can be another 1 to 4 weeks, depending. Nick is going to explain it in detail in the morning. But we feel good about it.
Today was a good day. Haley got a stethascope from one of the nurses, so now she gets to listen to their hearts and take their temps. She is gonna be a RN by the time we get done.
Haleys school called me today....I guess I forgot I need to call and let them know she is going to be out. oops! Hopefully she will be back so soon and I wont have to worry about that.
Good times. Blessing come in all shapes and sizes! Even in the ICU.
Today was a good day. Haley got a stethascope from one of the nurses, so now she gets to listen to their hearts and take their temps. She is gonna be a RN by the time we get done.
Haleys school called me today....I guess I forgot I need to call and let them know she is going to be out. oops! Hopefully she will be back so soon and I wont have to worry about that.
Good times. Blessing come in all shapes and sizes! Even in the ICU.
Tuesday, August 9, 2011 8:42 AM, MST
written by Kassie Bonura
a glimmer of progress!
I was going to title this a glimmer of hope, but i have all the hope my heart can hold!
So the doctor came in today, listened to her heart and said he can hear more of a murmur. Thats a good sign, and she has a wet cough, which can be another good sign. The meds she is on are used to relax and open her lungs, once that happens the blood will start to flow into her lungs, the signs will be an enlarged heart, a murmur and possibly cause a wet cough. Could be great news, could be nothing...(praying for great news!) So Doc. has ordered an xray to check lungs and the size of her heart. Still waiting to hear from Stanford. So we will see what comes of this.
Today we get to explore the hospital!
So the doctor came in today, listened to her heart and said he can hear more of a murmur. Thats a good sign, and she has a wet cough, which can be another good sign. The meds she is on are used to relax and open her lungs, once that happens the blood will start to flow into her lungs, the signs will be an enlarged heart, a murmur and possibly cause a wet cough. Could be great news, could be nothing...(praying for great news!) So Doc. has ordered an xray to check lungs and the size of her heart. Still waiting to hear from Stanford. So we will see what comes of this.
Today we get to explore the hospital!
Monday, August 8, 2011 8:10 PM, MST
written by Kassie Bonura
waiting waiting and more waiting
Sorry guys not much to say today, a day we have been waiting for. Doc came by today and said the doctors here have no good ideas and we are waiting on a call back from a pulminary expert from Stanford. Doc said the only cases he has seen like this were from his training hospital that did alot of surgeries on kids from 3rd world countries, and they basically had to send them back as is, because they didnt know how to fix it. Now they have a case they need to treat aggressively and no one has any solid ideas, except maybe a heart and lung transplant. This is big. Haley is so "sick" sitting in the hospital bed with oxygen, and monitors, and all the staff talking about her unusual case. yet she is same ol haley, happy, energetic, smart, crazy girl. That makes it hard to sit in here and wait, seems like we shouldnt have to be here.
we had some more great visters today, it really brightens up haley.
Also Haley and I were so excited to go down to the playroom today, only to find it was supposed to be open but wasnt. A nurse called the lady in charge Tarah and found out the other lady wasnt able to work today and she was too busy to supervise. Once Tarah found out it was Haley wanting in, she said as long as mom or dad is there we could just go in. Yes Haley is winning the hearts of the hospital! She has had great nurses, we are very blessed for that!
Hopefully we will have news tomorrow.
we had some more great visters today, it really brightens up haley.
Also Haley and I were so excited to go down to the playroom today, only to find it was supposed to be open but wasnt. A nurse called the lady in charge Tarah and found out the other lady wasnt able to work today and she was too busy to supervise. Once Tarah found out it was Haley wanting in, she said as long as mom or dad is there we could just go in. Yes Haley is winning the hearts of the hospital! She has had great nurses, we are very blessed for that!
Hopefully we will have news tomorrow.
Sunday, August 7, 2011 11:58 PM, MST
written by nick bonura
Adjusting
The past couple of days have been extremely hard for Haley. Trying to figure out a new place and with all these new people wanting to work on her, she has been just terrified when nurses want to check her vitals. We were starting to think that might not go away and that was hard for us to deal with cause we know what a happy girl Haley is. Today Haley was able to get off of the floor for some MUCH needed play time! We had almost everyone show up at once to visit so Haley had a pretty big fan club in the cafeteria today. I think that helped a bunch getting her out for some exercise and some out of the room interaction with people. She was tethered to her oxygen tank but still managed to play some indoor soccer and only knock the tank over once(ooops.) because we were out roaming the campus we missed her meds, so her nurse hunted us down and asked haley to take them. Haley was so good! She wasn’t about to show her friends that this was at all scary! She took the medicine almost with out being asked… She goes into teaching mode and explains everything. I think that was the turning point for her. She is so proud and ready to show the nurses how big she is and has been taking her meds great ever since! Tonight she had a pretty epic nose bleed that caused rather large commotion. We tried telling the nurse she bleeds a lot but I bet she hears that all the time. After about ½ hr of bleeding, I went to change the towel and the nurse caught a glimpse of I what we were trying to explain. We had a handful of nurses and a few ER docs. This was well over an hour long. For the latter half or so, there was blood coming from her tear ducts which is fairly common but still unusual and hard to look at! It ended with her vomiting a large amounts of blood…. Don’t panic! She followed that up with asking for dinner! Haha. They ran some blood tests and everything came back normal, we are hoping this not a side effect of the meds cause then will for sure not be able to go home anytime soon! We finished the night with a funny photo shoot that had all of us laughing til we dropped. We have all made friends with the nurses and I see them putting Haley to work in the next few days to keep her busy. hopefully hours worked is deducted from the bill(fingers crossed.) Tomorrow is a big day! All the doctors here and pulmonary hypertension specialists from around the nation are going to discuss Haley’s very unique situation and will hopefully be able to roll out a treatment plan. Thanks to everyone for all the love and support we have received. We will 100% update everyone tomorrow when we have more info on treatment.
Much love-
The B’s
Much love-
The B’s
Saturday, August 6, 2011 8:26 AM, MST
written by nick bonura
sat morning
GOOD MORNING EVERYONE... Last night was interesting. For some reason Haley was cranky and couldnt sleep well??? hahaha, I kid, I kid. She woke up today feeling good and and ready to eat! She woofed down some pancakes and muffins and shes watching megamind now. We are on cruisecontrol until her sergeon comes in today to talk about what options for treatment we have. Once we have talked we will update everyone on the news! Thanks for stopping by!
The B's
The B's
Friday, August 5, 2011 6:41 PM, MST
written by Kassie Bonura
So the doctors will be contacting a few other doctors from around the country to get their take on this. I always knew Haley was special but geez. lol tomorrow her heart surgeon will come in and chat with us, but we wont know any real strong info until mid day monday. It is so sensitive, ya know lets say there are 5 different ways to go about this, one way could work for haley while the other 4 could keep her as is, slowly malfunctioning, or make the worst happen. God help us figure out the right way. She woke up a bit, drank a whole can of sprite, ate some crackers then fell back asleep. during that i asked her how she was feeling, of course her answer was "good."
Although her first word when she first came out groggy and raspy was "hungry." I will always remember the way that sounded, and of course that would be haleys first word out of surgery.
She has been in and out of sleeping although mostly sleeping soundly. all her stats look good. her oxygen is staying high. My dad and Nicks parents were here all day which was great. My mom and my sister wanted to come down to see haley and it broke my heart to suggest they wait until tomorrow. : ( I know they understand but still.
Tomorrow we will do some xrays and an ultrasound of her kidneys. With heart problems can sometimes come kidney problems.
I think I am kind of numb to all this, I just want to grab haley and say ok had enough of this lets go these people are crazy. But I cant. My perfectly healthy typical kid has 3 holes in her heart. umf...that just doesnt sound right. Am I being punked?!?!
Thanks everyone for all the support and prayers, I hope you all are in it for the long run, God knows we will need it!
Although her first word when she first came out groggy and raspy was "hungry." I will always remember the way that sounded, and of course that would be haleys first word out of surgery.
She has been in and out of sleeping although mostly sleeping soundly. all her stats look good. her oxygen is staying high. My dad and Nicks parents were here all day which was great. My mom and my sister wanted to come down to see haley and it broke my heart to suggest they wait until tomorrow. : ( I know they understand but still.
Tomorrow we will do some xrays and an ultrasound of her kidneys. With heart problems can sometimes come kidney problems.
I think I am kind of numb to all this, I just want to grab haley and say ok had enough of this lets go these people are crazy. But I cant. My perfectly healthy typical kid has 3 holes in her heart. umf...that just doesnt sound right. Am I being punked?!?!
Thanks everyone for all the support and prayers, I hope you all are in it for the long run, God knows we will need it!
Friday, August 5, 2011 2:07 PM, MST
written by Kassie Bonura
: (
ok so one of the fears of this surgery was that the pressures were too high and the meds didnt lower them. This would take away the possiblity of surgery to plug the holes.
Whenever they bring you into a private room to talk is never a good sign. The doctor said they found patent ductus arteriosus, which is a duct joining the aorta and the one that goes to the lungs. Its hard to explain.This duct is supposed to close a few days after birth, haleys decided not to. also your lungs are supposed to relax when that happens, once again haleys body didnt follow the rules. So they are going to plug that duct up using the catheter, right now. We are being admitted tonight, we are going to start her on IV meds to try and relax her lungs which would lower the pressure. Hopefully we can find a med that will work that we can take at home, so we dont have to stay here. so in a couple weeks we will do the catheter again to see the pressure. hopefully then her heart will be operable. if not we continue meds and test again. Possiblity of never being able to do the surgery to close the holes. So here we are. Nick will explain further, once we get settled, he is better at explaining this part. Continunously pray and know God is soverign.
Whenever they bring you into a private room to talk is never a good sign. The doctor said they found patent ductus arteriosus, which is a duct joining the aorta and the one that goes to the lungs. Its hard to explain.This duct is supposed to close a few days after birth, haleys decided not to. also your lungs are supposed to relax when that happens, once again haleys body didnt follow the rules. So they are going to plug that duct up using the catheter, right now. We are being admitted tonight, we are going to start her on IV meds to try and relax her lungs which would lower the pressure. Hopefully we can find a med that will work that we can take at home, so we dont have to stay here. so in a couple weeks we will do the catheter again to see the pressure. hopefully then her heart will be operable. if not we continue meds and test again. Possiblity of never being able to do the surgery to close the holes. So here we are. Nick will explain further, once we get settled, he is better at explaining this part. Continunously pray and know God is soverign.
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