Well, we knew the day was coming, but we weren't sure when they would schedule Rylee for her first bronchoscopy. This Friday, 11am, the date is set. Our goal, keeping Rylee healthy enough that she can have the procedure, but more importantly that she will recover with no breathing issues afterwards, causing her to have to be admitted. The pulmonologist went over the procedure with us in the office today and while it all sounds fairly simple and quick, I feel terrible that my little girl has to go through this.
I'm still riddled with guilt, even two months post diagnosis. I know there wasn't anything I did to directly cause Rylee to have PCD and that is not where most of my guilt comes from. Seems like these days my guilt is more from things like sending her to school when I know she is not at 100%, feeling that I'm just not doing enough for PCD research or not taking her to the doctor soon enough to avoid more severe infection. I feel guilty for being a working mom, when I feel like the only place I should be is at home, taking care of my little girl. The more I try to be Supermom, the more I realize I'm not. I'm not sure that the guilt will ever subside permanently, but I'm hopeful that someday things will get eaiser for Rylee. Sometimes when I feel guilty or sad about the whole situation, I remind myself that it isn't me who fights daily for breaths, it is Rylee. And really, if she isn't complaining, who am I too? So I continue on, doing the only things I know to do--therapies and treatments for her.
So on Friday, we'll take Rylee to CMC-Levine for her bronchoscopy. The whole procedure should last about an hour. They'll go in and suck out all the mucus they can find. What they suck out will be caught in a trap and sent off for culture--checking to see if it is bacterial, viral, fungal or antibiotic resistant. The positive side is that while she has the scope, there will be a camera to take pictures--pictures that can be used later for comparisons. They will also be able to tell if the atelectasis has caused any permanent damage thus far.
My next goal, once we get Rylee on a healthy track--date night with my husband. We have spent countless hours the past two months taking care of Rylee, doing all we can to get her better and keep her that way, that we haven't had a date night or quality adult time in what seems like forever. At this point, I feel like it's too much work to have someone watch Rylee for extended periods of time, so I hardly ask. Maybe I can even sneak a night away to watch my husband perform with his new band!
My two nieces have entered a contest on the Disney Channel, the Friends for Change grant. It is a grant for organizations or individuals to help make lasting, positive changes in the world. Their goal is to bring awareness for all those suffering PCD, especially their little cousin. I can't express in words how I felt when they called to tell us, each with their own projects, to help make any bit of a difference they can. Rylee doesn't understand the impact that this could have for the PCD community, but Jeff and I do. So, Haley and Natalie, thank you! The three of us will be here to help you in whatever way we can. But no matter what the outcome, Uncle Jeff and I are so proud of you for trying to do such a great thing for your little cousin and we will always be thankful!
But for now, we take it one day at a time. I am so happy to say that when necessary, this family pulls together for one special little girl!
Monday, January 28, 2013
Wednesday, January 23, 2013
Justin Bieber
Well, I was sure in my last post that something had gained a hold of Rylee's respiratory system, but I wasn't sure what. As she laid on the couch watching TV, looking so worn out, I checked her levels again to find they had dropped to about 90%. I knew it wouldn't be long before we'd be heading to the hospital, but hoped the Augmentin she'd just started and the prednisone that she'd been on for a 24 hours would quickly kick in. After Rylee went to bed, we again checked her oxygen level and it had dipped below 90%, hitting about 87% before stabling off. We did back to back nebulizer treatments of Albuterol, as we have been told before. Neither treatment helped. We placed the call to our pediatrician and headed to Hemby Children's Hospital. We spent Tuesday night in the hospital and the doctor was sure she'd be discharged that afternoon if her oxygen levels stayed steady and if a repeat chest X-ray looked the same or better than the one she had the Friday prior. We were certain it did, how could it not with all the Vest Therapy, hypertonic saline treatments, antibiotic and oral prednisone. About an hour after the X-ray the doctor informed us that the X-ray looked worse, they suspected pneumonia was beginning for form in the right lower lobe where the atelecstasis has remained for the past two months. The pulmonologist had warned that the mucus plug (atelecstasis) was a breeding ground for bacteria, and that would be our major concern with it not dislodging soon. We stayed Wednesday night, to make sure Rylee could hold her oxygen levels during sleep and to make sure the pneumonia was being contained. Things seemed to go as planned on Wednesday night and Rylee was discharged Thursday late morning. We kept her out of school Friday and somewhat hibernated throughout the weekend. I had planned to be off Monday, Tuesday and Wednesday, since Tuesday was the Justin Bieber concert and Grandma and Pa were in town.
Rylee got to attend the concert and I made every effort I could to make sure that she could. We had an appointment with the pediatrician on Monday, just to have a listen and to have an x-ray to see if the atelecstasis was still there and if the pneumonia was looking any better. The X-ray technician was out, so we were told we could come back sometime this week to get it done. A part of me was scared to take her Tuesday morning, fearing something might interfere with her going to the concert that she has been waiting for. So I held off on taking her in Tuesday.
The day was so great and I hope that Rylee remembers it that way as well. I wanted it to be about her and special, she deserved this day more than anyone I know. We made signs, took pictures, had a special outfit and got to attend a pre-concert party downtown. Rylee has found a new heart throb, Cody Simpson who opened the show. Another teenie-booper artist we'll have to listen too. I don't mind though, I know Rylee really enjoys her music. Carly Rae was great and Rylee really enjoyed her. Waiting for Justin to come on and Rylee started chanting Justin Bieber with the rest of the crowd. She was excited to see Justin but was a bit disappointed that she couldn't see his face. She held out until just before 10pm when she asked to go home because she was tired. We knew it was the end, so we beat the crowd out! On the way to the car, she told me she was sad because she didn't get to give the shirt we brought to Justin. We had brought an extra PCD shirt and she wanted Justin to have it. I thought it would have been great, any more exposure PCD can get would be great. It was hard for me to hear that because she's starting to ask questions and understand more of why she's constantly coughing or battling some issue with her lungs. I think she is starting to understand how much her dad and I want to raise awareness for PCD and how important it is and so maybe that was her way of raising awareness. I told her I would try to find a way to get it to him, so my new mission begins. I'm not sure exactly how I'll get it to him, but I'll do my best to try.
It was on the way out of the concert, Rylee and I decided that Never Say Never should be her PCD theme song. With her being such a Bieber fan, I thought the lyrics were perfect--"I will never say never, I will fight til forever" "whenever you knock me down, I will not stay on the ground." Rylee is a fighter and some how she always gets back up-from atelecstasis, pneumonia and sinus infections. Justin's music always puts a smile on her face and seems to let her escape whatever is trying to bring her down. Music, singing and dancing it what she enjoys, what makes her happy. Her dad and I enjoy watching her, simply because we know how happy it makes her.
She had her repeat chest X-ray today and the initial report from the tech was that the right lung looked worse than it did on the 11th of this month. We'll get a more detailed report from the pediatrician in the next day or so. Rylee has an appointment with the pulmonologist on Monday and from there he'll decided whether she needs a bronchoscopy to remove the mucus plug, based on the last 3 or 4 X-rays. As much as we don't want her to have the bronchoscopy, we'd like to have this plug removed before it does any further damage and causes any more infection.
Rylee got to attend the concert and I made every effort I could to make sure that she could. We had an appointment with the pediatrician on Monday, just to have a listen and to have an x-ray to see if the atelecstasis was still there and if the pneumonia was looking any better. The X-ray technician was out, so we were told we could come back sometime this week to get it done. A part of me was scared to take her Tuesday morning, fearing something might interfere with her going to the concert that she has been waiting for. So I held off on taking her in Tuesday.
The day was so great and I hope that Rylee remembers it that way as well. I wanted it to be about her and special, she deserved this day more than anyone I know. We made signs, took pictures, had a special outfit and got to attend a pre-concert party downtown. Rylee has found a new heart throb, Cody Simpson who opened the show. Another teenie-booper artist we'll have to listen too. I don't mind though, I know Rylee really enjoys her music. Carly Rae was great and Rylee really enjoyed her. Waiting for Justin to come on and Rylee started chanting Justin Bieber with the rest of the crowd. She was excited to see Justin but was a bit disappointed that she couldn't see his face. She held out until just before 10pm when she asked to go home because she was tired. We knew it was the end, so we beat the crowd out! On the way to the car, she told me she was sad because she didn't get to give the shirt we brought to Justin. We had brought an extra PCD shirt and she wanted Justin to have it. I thought it would have been great, any more exposure PCD can get would be great. It was hard for me to hear that because she's starting to ask questions and understand more of why she's constantly coughing or battling some issue with her lungs. I think she is starting to understand how much her dad and I want to raise awareness for PCD and how important it is and so maybe that was her way of raising awareness. I told her I would try to find a way to get it to him, so my new mission begins. I'm not sure exactly how I'll get it to him, but I'll do my best to try.
It was on the way out of the concert, Rylee and I decided that Never Say Never should be her PCD theme song. With her being such a Bieber fan, I thought the lyrics were perfect--"I will never say never, I will fight til forever" "whenever you knock me down, I will not stay on the ground." Rylee is a fighter and some how she always gets back up-from atelecstasis, pneumonia and sinus infections. Justin's music always puts a smile on her face and seems to let her escape whatever is trying to bring her down. Music, singing and dancing it what she enjoys, what makes her happy. Her dad and I enjoy watching her, simply because we know how happy it makes her.
She had her repeat chest X-ray today and the initial report from the tech was that the right lung looked worse than it did on the 11th of this month. We'll get a more detailed report from the pediatrician in the next day or so. Rylee has an appointment with the pulmonologist on Monday and from there he'll decided whether she needs a bronchoscopy to remove the mucus plug, based on the last 3 or 4 X-rays. As much as we don't want her to have the bronchoscopy, we'd like to have this plug removed before it does any further damage and causes any more infection.
Tuesday, January 15, 2013
Atelecstasis still lingers
After countless conversations yesterday with the pulmonologist and pediatrician, we now know the atelectasis is still lodged in Rylee's right lung. The spot we saw on the left lung looks like something from a viral infection. We'd decided to keep Rylee home today, planning on taking her to the doctor to see if we can keep the latest coughing bout under control and keep her well enough to go to the concert that is just now a week away. As she was laying with me this morning on the couch, I could hear her breathing, not quickly, but loud. I got the pulse oximeter, just to check. 92-94%, not really the numbers I was hoping for. At 11am at the doctor's office, sitting up, her oxygen was 95%, not pleasing to me or her pediatrician. She's started a dose of prednisolone last night, having two doeses by the time we went to the doctor. In addition, she's had a nebulizer treatment of Albuterol and Pulmicort, a 20 minute Vest Therapy with 7% saline nebulizer treatment. The diagnosis from the doctor, bronchitis, possibly viral, so we were told to hold off on antibiotics. After lunch I got Rylee to settle long enough to fall asleep. Again I noticed the heavy breathing, so checked her oxygen level with the pulse oximeter. 86-88%, I couldn't believe it. I waited a few minutes and checked again, 88% was as high as she would get. These are the types of numbers that land her in the hospital on oxygen.
After calling the doctor's office to ask if there is anything I can do in additional to all the treatments and therapies we're doing now and the pediatrician suggested starting the antibiotics. We'll start after dinner, hoping it won't be too late. If numbers fall below 90% tonight, we'll have to head to the ER. This week could be our first hospitalization of 2013. For now we'll stay the course and hope that whatever is attacking her respiratory system will budge, soon.
I feel like since diagnosis, things have progressively gone downhill for Rylee. She's been congested--stuffy or runny nose and coughing since November. She's beginning to understand more now and ask more questions. It is so hard to explain to a 4 year old that the next 5-7 years of her life are going to be the hardest, in terms of infections. I feel like the only great thing for her lately is the Justin Bieber/Carly Rae Jepsen concert next week. I have got to do everything to make sure she goes to that concert, she deserves it more than any kid I know. I feel like I've let her down so much lately and I will not let her down next Tuesday night.
After calling the doctor's office to ask if there is anything I can do in additional to all the treatments and therapies we're doing now and the pediatrician suggested starting the antibiotics. We'll start after dinner, hoping it won't be too late. If numbers fall below 90% tonight, we'll have to head to the ER. This week could be our first hospitalization of 2013. For now we'll stay the course and hope that whatever is attacking her respiratory system will budge, soon.
I feel like since diagnosis, things have progressively gone downhill for Rylee. She's been congested--stuffy or runny nose and coughing since November. She's beginning to understand more now and ask more questions. It is so hard to explain to a 4 year old that the next 5-7 years of her life are going to be the hardest, in terms of infections. I feel like the only great thing for her lately is the Justin Bieber/Carly Rae Jepsen concert next week. I have got to do everything to make sure she goes to that concert, she deserves it more than any kid I know. I feel like I've let her down so much lately and I will not let her down next Tuesday night.
Sunday, January 13, 2013
Timing is everything
When you have a chronically sick child, it seems like timing is everything. There is a fine line when bringing them to the doctor between being too early and too late. Too early for an antibiotic or too late and pneumonia has settled in. This is where I find myself tonight-waiting for a fever or something to warrant a trip to the doctor. The coughing has certainly gotten worse in the past two days, but is that enough? We were at the pediatrician's office on Friday afternoon for the repeat x-ray to check for the atelecstasis in the lower right lung. With only a quick glance at the films, it looks as if the right lung has recovered, no obvious signs of the atelecstasis still being there. Although, a "spot" on the upper left lung showed up. At this point, we're still unsure of what the spot is. The pediatrician's office called as we were walking in the door to ask a few questions, when was the last antibiotic for Rylee and had she been coughing frequently. I explained to the nurse while Rylee has a wet sounding cough, she wasn't coughing a lot. It wasn't more than a few minutes after I hung up that Rylee had begun coughing much more than I've heard in the past few weeks. It's been two days and I can tell the cough, that seems to be occurring a major part of the day, sound very different from Friday afternoon. Having a child who has suffered pneumonia 7 times in less than 3 years and suffered a partially collapsed lung more than once, when is it time to take her to the doctor? Do I wait for a fever or more apparent signs of a sickness, or do I go on my gut instinct and take her in. Sometimes I wish Rylee would complain or let me know that something is "uncomfortable" or "bothering" her. The only hints I get is the restlessness during the night, the declining oxygen numbers, the grunting and the constant coughing in the night.
With flu season in full swing, I'm a bit more concerned with every sniffle and cough. Knowing what we know now about Rylee and PCD, and knowing how bad the flu is hitting people this season, I'm scared it'll land her in the hospital. With her much anticipated concert of Justin Bieber and Carly Rae Jepsen just over a week away, I may have to jump the gun on this one and take her to the doctor.
With flu season in full swing, I'm a bit more concerned with every sniffle and cough. Knowing what we know now about Rylee and PCD, and knowing how bad the flu is hitting people this season, I'm scared it'll land her in the hospital. With her much anticipated concert of Justin Bieber and Carly Rae Jepsen just over a week away, I may have to jump the gun on this one and take her to the doctor.
Saturday, January 5, 2013
CT Scan shows it all...
At our appointment on Wednesday with the pulmonologist, we received the report from Rylee's CT scan on December 13th. Everyone tried to assure me that no news was good news, but I was still anxious to get the results. The good news is that after 4 years of recurrent respiratory and lung infections, there were no signs of bronchiestasis, irreversible damage to the lungs. The bad news, Rylee still had the patch of atelecstasis that landed her in the hospital for 2 days just after Thanksgiving. There seems to be a bit of pleural effusion, fluid between tissues that line the lungs and chest cavity. So, we'll continue with Vest Therapy at least 40 minutes a day, more if she can tolerate it. Hopefully this will break up that patch of atelecstasis quickly. She'll have a repeat chest x-ray by the end of the weak to confirm whether the atelecstasis has dislodged or not. Otherwise, sometime in the near future, she'll have to undergo a bronchoscopy to have it suctioned out.
I hate thinking of all these procedures she's had and may have to have, but a part of me has come to the realization that unfortunately this will not be the end of them. This is her life, this is our life.
I've been corresponding with another mom, she had two young boys who also have PCD. We are just two women, living thousands of miles apart, but have so much in common. While we may never meet, it has been extremely therapeutic for me communicating with her. We discuss daily life-- therapies, treatments, doctor appointments. But more importantly, we discuss advocating for our children, bring PCD to the forefront of the research community and keeping it there. We are two women who will stop at nothing to see that our children get the best care and treatment they deserve. Since PCD is so foreign to everyone, it's so beneficial to both of us to discuss treatments and therapies we find working for our children, with the slight possibility it may work for the others as well. She too is a mom, running on autopilot, going through the motions of the day, still a little numb from what the last few months have brought us. I'm hoping, that in some small way, we can benefit from each other, but more importantly that our children can benefit from our conversations.
I'm not sure that anyone reads my blogs, but this has become a great outlet for me. Expressing all my thoughts and fears, but more importantly, giving a glimpse into Rylee's daily, anything but normal, life.
I hate thinking of all these procedures she's had and may have to have, but a part of me has come to the realization that unfortunately this will not be the end of them. This is her life, this is our life.
I've been corresponding with another mom, she had two young boys who also have PCD. We are just two women, living thousands of miles apart, but have so much in common. While we may never meet, it has been extremely therapeutic for me communicating with her. We discuss daily life-- therapies, treatments, doctor appointments. But more importantly, we discuss advocating for our children, bring PCD to the forefront of the research community and keeping it there. We are two women who will stop at nothing to see that our children get the best care and treatment they deserve. Since PCD is so foreign to everyone, it's so beneficial to both of us to discuss treatments and therapies we find working for our children, with the slight possibility it may work for the others as well. She too is a mom, running on autopilot, going through the motions of the day, still a little numb from what the last few months have brought us. I'm hoping, that in some small way, we can benefit from each other, but more importantly that our children can benefit from our conversations.
I'm not sure that anyone reads my blogs, but this has become a great outlet for me. Expressing all my thoughts and fears, but more importantly, giving a glimpse into Rylee's daily, anything but normal, life.
Wednesday, January 2, 2013
New Year's resolutions...
Some time ago, I've stopped making New Year's resolutions. I never seemed to follow through, always giving up on them after week 1. I've decided to pick up the habit again--this year making a resolution that I will stick to. This year, I intend to be fully active in the PCD world--raising awareness, helping to raise funds for research and communicating with other families. This is a resolution I will keep, I have to, for the sake of my 4 year old. I refuse to be the mom who watches her child's lungs become floppy or suffer irreversible damage because I didn't do enough or because there isn't enough funds for research.
Today is an important day for us and our battle with PCD. Today is our first meeting with the pulmonologist since Rylee's CT scan of her lungs. It should be at this appointment we'll get the results, making sure there isn't any permanent damage so far. I read stories of children with PCD having portions of their lungs removed after permanent damage and while a huge part of me thinks, this won't happen to my daughter, a little part of me realizes it isn't out of the realm of possibility. Twice that we know of, Rylee has suffered portions of her lung collapsing and it was a fight against time to get it to reopen. To our knowledge, they did, without any permanent damage.
So, for now we keep on going with daily treatments and therapies, doing all we can do to keep Rylee healthy and infection free!
Happy New Year to you all, sending happy and healthy thoughts for 2013 to you all!
Today is an important day for us and our battle with PCD. Today is our first meeting with the pulmonologist since Rylee's CT scan of her lungs. It should be at this appointment we'll get the results, making sure there isn't any permanent damage so far. I read stories of children with PCD having portions of their lungs removed after permanent damage and while a huge part of me thinks, this won't happen to my daughter, a little part of me realizes it isn't out of the realm of possibility. Twice that we know of, Rylee has suffered portions of her lung collapsing and it was a fight against time to get it to reopen. To our knowledge, they did, without any permanent damage.
So, for now we keep on going with daily treatments and therapies, doing all we can do to keep Rylee healthy and infection free!
Happy New Year to you all, sending happy and healthy thoughts for 2013 to you all!
Subscribe to:
Comments (Atom)
