We had a really long and exhausting clinic visit yesterday. Kinda don't really feel like writing about it, but will give the basics. Monkey was a champ through the whole thing. Wore his mask, didn't freak out when they were taking his vitals/weight etc.
His weight is down again (which I expected because he hasn't been eating well). Dr. McCoy wanted him to get a chest xray, so we decided to go before we saw her so that she could look at the xrays before examining him. He did pretty well with the xrays, but it took a bit of coaxing. And if you know Monkey, you know getting him to be still long enough to get a good picture was kinda difficult.
The xrays showed a spot in his lower left lung. Dr. McCoy said it could be a mucus plug or an infection, or something else, but given the fact he hadn't had an appetite, she didn't want to wait for the culture results and thought we should just start treating it is if it is our friend Pseudomonas rearing his ugly head again. So poor baby is back on the Tobi and Cipro for the next month.
Because of his weight loss, we spent about 45 minutes with his dietician trying to come up with a plan to get him to eat and gain some weight without letting him take advantage of the situation.
Dr. McCoy also wanted to talk about his nose, which is runny and gunky about 75% of the time. A lot of kids with CF have sinus issues that require surgery (multiple surgeries in many cases). She agrees with Dr. Thompson (our favorite doc from our old newborn clinic) that Monkey is going to fall in this group. So she had the ENT come in.
After examining him and talking with me, the ENT decided he needs to be on a daily nasal spray which will hopefully prolong the need for surgery until he is older. So one more medication added to the list, and one more step added to the treatment routine. They will also do a CT of his sinuses when they do his chest CT and Pulmonary Function Test, which should be happening very soon.
So finally, at the end of this super long visit, the nurse came in to get his throat culture. She was a nurse we had never seen before and when she came into the room she said "so this is Emperor Lex, Dr. Thompson's favorite patient". (I guess I might as well start using his real name here) She went into a story about how when Lex came up in their meeting about this week's clinic patients, Dr. T. went on and on about him and how much he misses him. So that was very sweet to hear and a good way to end this long (over 3 hours) visit!
Friday, June 13, 2014
Monday, May 5, 2014
Great Strides and Great News
The Columbus Great Strides walk was yesterday and Team Lex Express had a great turn out. The weather was nice, just a bit windy, and we really enjoyed a lovely afternoon surrounded by family and friends. Plus we raised over $5000. It is hard to explain how full it makes my heart to see Monkey running around, playing, surrounded by all the people who came out to show how much they love and support him. To everyone who came yesterday, thank you from the bottom of my heart!
Team Lex Express 2014
Today I got the most wonderful news since I found out Bug (Monkey's baby brother) didn't have cf. After waiting anxiously for almost a week, I finally heard from the cf clinic about Monkey's last culture. It grew absolutely NO Pseudomonas!! I was so ready to fight for more aggressive treatment that I almost didn't believe what I was hearing. I asked her 3 times: "none?", "all 3 strands are gone?", "even the mucoid strand didn't grow?" I think I was floating on a cloud for a while after that phone call. I wanted to tell everyone I saw, even strangers!
This little battle was just the first of many lung damaging monsters we will have to fight. It was really scary for me and made everything far too real. I just wish I could freeze time until that cure comes. I know it's just around the corner, I just wish it would hurry up and get here.
Monkey in his special green shirt that identifies him as a cfer. People with cf can pass dangerous bacteria to each other and are supposed to stay away from each other.
Today I got the most wonderful news since I found out Bug (Monkey's baby brother) didn't have cf. After waiting anxiously for almost a week, I finally heard from the cf clinic about Monkey's last culture. It grew absolutely NO Pseudomonas!! I was so ready to fight for more aggressive treatment that I almost didn't believe what I was hearing. I asked her 3 times: "none?", "all 3 strands are gone?", "even the mucoid strand didn't grow?" I think I was floating on a cloud for a while after that phone call. I wanted to tell everyone I saw, even strangers!
This little battle was just the first of many lung damaging monsters we will have to fight. It was really scary for me and made everything far too real. I just wish I could freeze time until that cure comes. I know it's just around the corner, I just wish it would hurry up and get here.
Friday, May 2, 2014
Waitng
Monkey had "big boy" clinic a few days ago. He did a pretty good job! My dad came with me. It was the first time he has been to a clinic visit since Monkey was teeny tiny and we were learning about what cf is and how it will affect our family.
The first hurdle was getting Monkey to wear the mask. We all (and I mean just about everyone in the waiting room) put one on to help coax him to wear it. It took a little bit of bribery, but he put it on and left it on much easier than I expected him to.
He even stood on the scale and let them measure him without a fight, things that always resulted in tears during newborn clinic. He did still cry when they took his blood pressure and pulse ox, but he got over it pretty quickly. He sat nicely and played ipad with Poppy most of the time we were in the exam room. But he wasn't dancing around the room with a big smile like he usually was when we went to the newborn clinic and he knew everyone.
The throat culture was horrible. It took 4 of us to hold him still so the doctor could get it. He was so angry afterwards that he screamed and threw things around the room. He felt betrayed by my dad and me because we had helped hold him still, and he couldn't be calmed down for several minutes. He didn't want anything from us (even his beloved tootsie rolls). The doctor came in and tried to give him suckers, and finally calmed him down by offering him a Donald Duck sticker.
So now we wait for the results of the culture. I was hoping to get the call today, but will now have to wait all weekend. I'm very anxious about the results. I feel like the doctor was too quick to say he will probably just always have it, and I know there is more we can do to fight it, and it can be beaten! Hopefully the culture will come back clean, and I won't have to worry about it, but I am prepared to fight to treat it more aggressively if I have to. I wish there was a way to know for sure what is best for Monkey, but I just have to go with my Mommy-gut. Waiting sucks!
The first hurdle was getting Monkey to wear the mask. We all (and I mean just about everyone in the waiting room) put one on to help coax him to wear it. It took a little bit of bribery, but he put it on and left it on much easier than I expected him to.
The throat culture was horrible. It took 4 of us to hold him still so the doctor could get it. He was so angry afterwards that he screamed and threw things around the room. He felt betrayed by my dad and me because we had helped hold him still, and he couldn't be calmed down for several minutes. He didn't want anything from us (even his beloved tootsie rolls). The doctor came in and tried to give him suckers, and finally calmed him down by offering him a Donald Duck sticker.
So now we wait for the results of the culture. I was hoping to get the call today, but will now have to wait all weekend. I'm very anxious about the results. I feel like the doctor was too quick to say he will probably just always have it, and I know there is more we can do to fight it, and it can be beaten! Hopefully the culture will come back clean, and I won't have to worry about it, but I am prepared to fight to treat it more aggressively if I have to. I wish there was a way to know for sure what is best for Monkey, but I just have to go with my Mommy-gut. Waiting sucks!
Friday, April 25, 2014
Busy month
It has been a month since my last post. Life has been very busy during that month! My fundraiser was a big success. We raised over $4000 for the CF Foundation. I was so happy to see a lot of old friends as well as new friends and family come by to show their support. It was really nice to reconnect with some old friends I had not seen in a while. It was a lot of work, but definitely worth the effort, so I will be making it a yearly event.
Monkey just finished his month of Tobi, which more than doubled the time in took to do his treatments each day. It was all we could do to get him fed, get his treatment done and give him his bath and get him ready for bed each evening. I think we only got him to bed on time about twice during the last month. Then, we had to wake him up early each morning so we would have time to get everything done in the morning before we had to leave for school/work. He was exhausted, we were exhausted, and it felt like his whole little world was treatments.
I am so glad that is over with (for now), but am a nervous wreck about whether or not we got all the Pseudomonas. He goes back to clinic for another culture on Tuesday, and I think I will have this sick feeling until the culture results are in. If this culture still grows Pseudomonas, they will likely admit him for a round of IV antibiotics for about 2 weeks.
I am also nervous because it will be our first time at the Tue/Thu clinic, with new doctors, and I will likely have to go by myself! Monkey will have to wear a mask while at clinic, something we have never successfully gotten him to do.
So there are a lot of unknowns right now, and unknowns and change make me very nervous. Trying to keep my energy focused on positive things, like the Great Strides walk next weekend. To join or donate to Team Lex Expess, visit my Great Strides homepage here.
We are forever grateful to all the people who support us and show Monkey how many people care about him!
Pictures from the Lex Express fundraiser
Monkey just finished his month of Tobi, which more than doubled the time in took to do his treatments each day. It was all we could do to get him fed, get his treatment done and give him his bath and get him ready for bed each evening. I think we only got him to bed on time about twice during the last month. Then, we had to wake him up early each morning so we would have time to get everything done in the morning before we had to leave for school/work. He was exhausted, we were exhausted, and it felt like his whole little world was treatments.
I am so glad that is over with (for now), but am a nervous wreck about whether or not we got all the Pseudomonas. He goes back to clinic for another culture on Tuesday, and I think I will have this sick feeling until the culture results are in. If this culture still grows Pseudomonas, they will likely admit him for a round of IV antibiotics for about 2 weeks.
I am also nervous because it will be our first time at the Tue/Thu clinic, with new doctors, and I will likely have to go by myself! Monkey will have to wear a mask while at clinic, something we have never successfully gotten him to do.
So there are a lot of unknowns right now, and unknowns and change make me very nervous. Trying to keep my energy focused on positive things, like the Great Strides walk next weekend. To join or donate to Team Lex Expess, visit my Great Strides homepage here.
We are forever grateful to all the people who support us and show Monkey how many people care about him!
Pictures from the Lex Express fundraiser
Monday, March 24, 2014
Pseudomonas
I missed a call this morning around 9:00, didn't hear the phone ring in my back pocket because that is the time my students are arriving, playing, and I am talking with parents as they drop off. When we took the kids to P.E., I ducked out to listen to my voicemail. It was Dr. Thompson, Monkey's favorite Pulmonologist from the CF Clinic. He said he wanted to talk to me about Monkey's throat culture results, that it wasn't urgent and I shouldn't worry, and that he was in Clinic until 4:00, so would not be able to get back to me for awhile. I shouldn't worry? They do a throat culture every time we go to clinic (except the time he puked on me), and never call unless he is growing something. On top of that, the doctor has NEVER called himself, it is always a nurse! So of course I knew something was really not good, and I had all day to freak out and worry about it.
When he finally called back around 4:30 he told me Monkey is growing Pseudomonas. I'm still fairly new to all this CF stuff, and since Monkey has been mostly healthy so far, I don't know about all the bugs our kiddos get, but I know enough to know Pseudomonas is the one you don't want your kid to have. He went on to say that he has 3 different strands, they are all rare (of course, because everything about my Monkey is rare), and one is mucoidal. The fact that it is mucoidal means it is likely to colonize.
Ok, deep breath Jodi, keep listening and stay focused. Take in all the information. Keep breathing!
He goes on to explain how they will treat it (2 weeks of oral antibiotics and a month of Tobi, an inhaled antibiotic). If it colonizes, he will be on and off the Tobi every month to keep it at bay. He tries to be reassuring. Tells me some kids with Pseudomonas do just fine, while others who don't have it do poorly. It doesn't define anything, blah blah blah.
Monkey will have to start going to a different clinic, so he doesn't pass this horrible bug to other sweet babies with healthier lungs. Monkey, up until now, was still in the newborn clinic because he was not growing anything dangerous. Because kids with CF can easily catch these bugs from each other, they put them in clinic based on the bugs they have so they aren't sharing space with kids who can pass them a new bug they didn't already have. He will now be going to the Tue./Thu. clinic with all the kids who have this ugly bug. And he won't be seeing his beloved Dr. Thompson anymore. That about broke my heart to hear!
When I got home, I sent a message to a friend of mine who has a twelve year old son with CF. They have been through about everything, and she is very knowledgeable. I turn to her when facing something new with Monkey because I know she will tell me like it really is, from the perspective of a mommy, not a doctor, which is what I really need at these moments. She is also amazing at explaining the medical stuff in a way that makes sense to me, so I really understand what is happening in Monkey's little body.
She said colonized mucoidal Pseudomonas is like a pilot light waiting to flare up. It stays dormant, then when you get another bug, such as staph, it flares up. Every time it flares up it causes more damage to the lung. She says where she lives, every time a kid gets Pseudomonas, they are admitted for IV antibiotics. Her son had mucoidal Pseudomonas before and they were able to eradicate it.
So, with this information, I am now prepared to be my child's advocate and call tomorrow to find out how much is growing, and why they don't think it should be treated with IV antibiotics. In the meantime, I will prepare to do whatever is best to keep my baby's lungs as healthy as possible until that cure comes along.
When he finally called back around 4:30 he told me Monkey is growing Pseudomonas. I'm still fairly new to all this CF stuff, and since Monkey has been mostly healthy so far, I don't know about all the bugs our kiddos get, but I know enough to know Pseudomonas is the one you don't want your kid to have. He went on to say that he has 3 different strands, they are all rare (of course, because everything about my Monkey is rare), and one is mucoidal. The fact that it is mucoidal means it is likely to colonize.
Ok, deep breath Jodi, keep listening and stay focused. Take in all the information. Keep breathing!
He goes on to explain how they will treat it (2 weeks of oral antibiotics and a month of Tobi, an inhaled antibiotic). If it colonizes, he will be on and off the Tobi every month to keep it at bay. He tries to be reassuring. Tells me some kids with Pseudomonas do just fine, while others who don't have it do poorly. It doesn't define anything, blah blah blah.
Monkey will have to start going to a different clinic, so he doesn't pass this horrible bug to other sweet babies with healthier lungs. Monkey, up until now, was still in the newborn clinic because he was not growing anything dangerous. Because kids with CF can easily catch these bugs from each other, they put them in clinic based on the bugs they have so they aren't sharing space with kids who can pass them a new bug they didn't already have. He will now be going to the Tue./Thu. clinic with all the kids who have this ugly bug. And he won't be seeing his beloved Dr. Thompson anymore. That about broke my heart to hear!
When I got home, I sent a message to a friend of mine who has a twelve year old son with CF. They have been through about everything, and she is very knowledgeable. I turn to her when facing something new with Monkey because I know she will tell me like it really is, from the perspective of a mommy, not a doctor, which is what I really need at these moments. She is also amazing at explaining the medical stuff in a way that makes sense to me, so I really understand what is happening in Monkey's little body.
She said colonized mucoidal Pseudomonas is like a pilot light waiting to flare up. It stays dormant, then when you get another bug, such as staph, it flares up. Every time it flares up it causes more damage to the lung. She says where she lives, every time a kid gets Pseudomonas, they are admitted for IV antibiotics. Her son had mucoidal Pseudomonas before and they were able to eradicate it.
So, with this information, I am now prepared to be my child's advocate and call tomorrow to find out how much is growing, and why they don't think it should be treated with IV antibiotics. In the meantime, I will prepare to do whatever is best to keep my baby's lungs as healthy as possible until that cure comes along.
Monday, March 3, 2014
Planning
I haven't written in awhile because I haven't had much to write about, which is pretty good in our world. That means Monkey has been mostly healthy, and life has been fairly normal.
I have recently started to really dig into the planning of my fundraiser. I have the location, date, and time set. If you are going to be in Columbus April 12, you should plan to attend our event at 4:00 at Alumni Club Sportsbar. I have also started to solicit items for auction and am so excited by the responses I have gotten so far.
I decided to email PR/ Community relations people for our local sports teams yesterday. I looked up each team and found the person who I thought would handle the decision to make a donation. I'm so excited by the response I got from the Columbus Crew, our Major League Soccer team. First thing this morning I received an email from him stating that he had a cousin who had CF, and he was thrilled to send us some items for auction. I guess karma, or the universe, or whoever/whatever force is out there, guided me to choose the right person to send that email to. I can't wait to see what he sends.
I have also received some generous offers from family and friends and will be hitting up some local businesses this weekend. Since this is my first time doing this, I was a little nervous, but everything seems to be falling into place.
I have recently started to really dig into the planning of my fundraiser. I have the location, date, and time set. If you are going to be in Columbus April 12, you should plan to attend our event at 4:00 at Alumni Club Sportsbar. I have also started to solicit items for auction and am so excited by the responses I have gotten so far.
I decided to email PR/ Community relations people for our local sports teams yesterday. I looked up each team and found the person who I thought would handle the decision to make a donation. I'm so excited by the response I got from the Columbus Crew, our Major League Soccer team. First thing this morning I received an email from him stating that he had a cousin who had CF, and he was thrilled to send us some items for auction. I guess karma, or the universe, or whoever/whatever force is out there, guided me to choose the right person to send that email to. I can't wait to see what he sends.
I have also received some generous offers from family and friends and will be hitting up some local businesses this weekend. Since this is my first time doing this, I was a little nervous, but everything seems to be falling into place.
Wednesday, February 12, 2014
Hope
Today Monkey had his clinic visit. The appointment went well. His weight is in the yellow zone still, but nothing to be concerned about. They think his constant runny nose may actually be caused by allergies, so we're going to try some allergy medicine and see if that helps.
For some reason he has developed a serious fear of the room where they take his weight, height, and vitals. As soon as we got near that room, he dropped to the floor in an absolute panic. He screamed and cried the entire time we were in there. The cutest thing happened though. As we were trying to get him to stand on the scale and he was totally freaking out, Dr. Thompson happened to walk by. Monkey LOVES Dr. Thompson. He saw the doctor in the hallway, got a huge smile, yelled "HI!", and ran out and hugged him. Dr. Thompson stopped and talked to him for a few minutes, came into the room and said "show me how you can stand on the big boy scale". Monkey hopped right up on the scale. We've been seeing the nurse practitioner the past few visits and Monkey has really missed his favorite doctor. I hope after what happened today the team will realize how much better Monkey does with Dr. Thompson and we'll get to see him again for our next appointment.
I asked to talk to someone from the research team this visit and Hubby and I were so excited by what she had to say. The first thing I asked was: Is "fixing" one of his mutations enough? And, as I thought, she said it is. Because that essentially makes his body work like a carrier (such as Hubby and me). We each have 1 mutated gene, but our bodies work fine, it takes 2 to show symptoms of the disease. So fixing one is all that is needed to "fix" someone with CF. That being said, the super exciting thing is that, out of the almost 2000 different CF gene mutations, the 2 that Monkey has are BOTH being highly researched. She basically said that she's pretty certain by the time he is old enough to swallow a pill, there will be a pill to essentially cure him. This means, rather than 3-4 different medications a day on top of 1-2 hours of chest therapy every day, Monkey will simply have to take one pill a day, for the rest of his LONG life (with the same life expectancy of any healthy person)!!!!
She said right now they are not testing these new medications in children as young as Monkey, but eventually they'll have to. She will be sure to let us know if there are any trials that he can be a part of.
So, for anyone who ever wondered, THIS is what I have been fighting for since he was diagnosed. THIS is why I work so hard to raise awareness and money for research. It is happening RIGHT NOW! This horrible disease is being cured, and I am helping it happen, and my baby is going to benefit from these medical advances and have a long, healthy life! I cry every time I think about it!!
For some reason he has developed a serious fear of the room where they take his weight, height, and vitals. As soon as we got near that room, he dropped to the floor in an absolute panic. He screamed and cried the entire time we were in there. The cutest thing happened though. As we were trying to get him to stand on the scale and he was totally freaking out, Dr. Thompson happened to walk by. Monkey LOVES Dr. Thompson. He saw the doctor in the hallway, got a huge smile, yelled "HI!", and ran out and hugged him. Dr. Thompson stopped and talked to him for a few minutes, came into the room and said "show me how you can stand on the big boy scale". Monkey hopped right up on the scale. We've been seeing the nurse practitioner the past few visits and Monkey has really missed his favorite doctor. I hope after what happened today the team will realize how much better Monkey does with Dr. Thompson and we'll get to see him again for our next appointment.
I asked to talk to someone from the research team this visit and Hubby and I were so excited by what she had to say. The first thing I asked was: Is "fixing" one of his mutations enough? And, as I thought, she said it is. Because that essentially makes his body work like a carrier (such as Hubby and me). We each have 1 mutated gene, but our bodies work fine, it takes 2 to show symptoms of the disease. So fixing one is all that is needed to "fix" someone with CF. That being said, the super exciting thing is that, out of the almost 2000 different CF gene mutations, the 2 that Monkey has are BOTH being highly researched. She basically said that she's pretty certain by the time he is old enough to swallow a pill, there will be a pill to essentially cure him. This means, rather than 3-4 different medications a day on top of 1-2 hours of chest therapy every day, Monkey will simply have to take one pill a day, for the rest of his LONG life (with the same life expectancy of any healthy person)!!!!
She said right now they are not testing these new medications in children as young as Monkey, but eventually they'll have to. She will be sure to let us know if there are any trials that he can be a part of.
So, for anyone who ever wondered, THIS is what I have been fighting for since he was diagnosed. THIS is why I work so hard to raise awareness and money for research. It is happening RIGHT NOW! This horrible disease is being cured, and I am helping it happen, and my baby is going to benefit from these medical advances and have a long, healthy life! I cry every time I think about it!!
This is the happy face I make thinking about this news! (It's actually kinda scary looking, but it's a happy face, really!)
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