Wednesday, April 27, 2016

Sick of sick

Any parent knows that taking care of sick kids is trying and hard and testing and it is, all those things.

Taking care of a sick child with a chronic disease when you as the parent do not feel well yourself, makes it that much worse.

I can count the days on less than my 2 hands that Olivia has been to school this month of April. For the past 2 weeks straight she's been home with me. We have added treatments, added medications and increased edginess,crabbiness from her and I both. Along with all that, it's dealing with the school and the doctors and the pharmacies . . .

Both Olivia and my patience has been tested and at many times throughout the day we are both butting heads. To say her and I need a break from each other, probably is an understatement. She wants to go back to school, I want her to go back to school. Jeff and I have to agree to disagree on when she can go back. It's nothing new, it was the same with Landen. He'd get sick, pass it on to Olivia and Jeff and I would argue over home school vs. public school.

I can't fault him, he has her best interest at heart. He only wants to protect her and will do all he can to do just that. Not that I don't, but I want her to live. There are always going to be risks. There are always going to be fears. There are always going to be the what ifs and the unknowns. CF is always going to be a factor. But just as we kept Olivia isolated and in a bubble as much as we could her first 5 years of life, I was in that bubble too, right along with her. It's not living. There is more to life than the walls of this house. There are people to meet, things to explore, places to go . . . living to be done. It's hard. As I've said before, it's the whole robbing Peter to pay Paul scenario. Keeping Olivia as protected as possible will keep her healthy which could very likely extend her life. Letting her go out into the world and really live, has risks and fears and unknowns, and could result in cutting her life short. She has cf, a disease that will likely cut her life short as is . . . so which scenario is best, what is the right thing?  For me, I'd rather live and do and be and make the most of today and if I die tomorrow, well at least I'd be satisfied with all I had done. Jeff perhaps sees it differently and honestly, I don't think there is a "right" answer, there are pros and cons to both.

This month, this illness has been trying. For one, I didn't think Olivia would miss this much school in kindergarten. I figured the long, extended absences would come later in her school years as she grew older and the disease progressed, especially given that her lungs have been "healthy". For two, this cough will not go away. We get woken up to it in the middle of the night and I listen to it all day. We're short on sleep, we are tired, it's exhausting. Many thoughts run around my head. is this just a new factor of CF she has to deal with? Will this cough be a new normal on some level for her? Is this really all related to her sinus issues?  What damage is being done to her lungs? Is something else going on? Is this allergies or an asthma component? Will this cough not clear up until after she has sinus surgery, will it ever go away? I could go on and on and on, but you get the point . . .

Ugh.

I don't know. All I do know is that I'm tired. I'm angry. I'm scared. My fuse is short.

Some days CF stinks, this entire month has been one of those times. I know chest colds can seem to last forever and the cough lingers on and on and on. I dealt with many as a kid and adult alike. If Olivia didn't have cf, we'd have sent her back to school and she'd blend in with all the other kids that have the same nasty, hacking cough and think nothing else about it. We are not gifted the luxury of that however.

So . . .

Here's where we are at. Clearly the cough still lingers, yet today. Olivia was put on a steroid yesterday for 5 days to see if, "it will give her the boost she needs to get over this". Thus far I have not noticed any improvement after 2 doses and of course the fact that she vomited up all her meds this morning, including some of the steroid I am sure, will not help. If I don't notice an improvement by tomorrow, 48 hours, I am to call CF clinic and we will head back down there for more testing and another culture etc. to see what else is going on.

and on that note, I'm done ranting, I'm done crying, I'm off to face the day to the best I can.

Friday, April 22, 2016

You make me happy . . . when skies are gray

There's no question about it, the past 3 to 4 weeks have been difficult for Miss Olivia. During the month of April Olivia's missed more days of school than she's been present and she keeps telling me that her classmates and friends must wonder where she is. I know she misses school, her friends, Mrs. Heath . . . I also know that these extended absences, this missing of friends and classmates will not be the last go around. She's in kindergarten and we've only just begun. 

On a happy note today however, it's a beautiful spring day, the sun is shining and the wind for once isn't gale force. To top off the day, Landen brought home Olivia's make up work and packaged along with it were some sweet, sweet notes and drawings from a few of her friends. 

These sweet momentos definitely added a little bit of sunshine to the gray skies she's been dealing with this month. 










Thursday, April 21, 2016

ENT Findings

Yesterday I took Olivia in to follow up with ENT. She began with a hearing test and as we had suspected, her hearing is impaired right now because of the fluid that is in her ears. Thankfully, her potential hearing is good and no permanent damage has been done so far.



We then followed up with our ENT doctor. Because Olivia is so congested and clogged up, he wasn't able to get a good look in her nose so he had to use the scope. Olivia had this done in 2015 and was a trooper, it didn't much phase her at all. With the scope, Dr. Luke discovered that the adenoids she had removed in January 2015 have already grown back and she has a polyp in her left nasal cavity. Thus, these sinus issues are very likely contributing to the constant sinus congestion and inflammation Olivia is experiencing with every cold she picks up.

Dr. Luke recommends placing tubes in her ears, removing the nasal polyps and adenoids. Surgery has been scheduled for the beginning of May.

He reminded me of what I already know, that CF sinus disease is a beast in and of itself. He said this will not be her last trip to the OR or in dealing with these sinus issues. We will also get Olivia in the habit of nasal irrigation. We've tried the neti pot with no success in the past so yesterday I picked up the Neilmed sinus rinse kit. This is a squeeze bottle that we were able to use successfully last night. We are to do these sinus rinses once daily and this is something Olivia needs to keep up with going forward. She will also start Flonase nasal steroid to help with the inflammation as well. As Dr. Luke mentioned we will never get rid of these issues because of the nature of CF but we will try to control the symptoms and if we can space the OR time out to a year inbetween visits, that's a win.

On the one hand, I'm not surprised at all. I had a feeling things were going on in her sinuses that needed addressing. I'm thankful that relief is coming for Olivia in the near future once we get the surgery done. I remember clearly the immediate relief she felt after her first sinus surgery so I'm holding on to that. On the other hand, it just makes my heart heavy.

In the 6 years we've been on this journey with cf, I've learned a lot, read a lot, researched a lot and come across many real-life stories of other kiddos with cf dealing with sinus issues. I know it could be worse, I know we could have been dealing with these issues much earlier than 5-6 years of age. I know that this could be her up-teenth sinus surgery compared to her 2nd. I get it. If there is one thing I've learned to accept, it's always that no matter how bad things are or seem, they could always be worse. That outlook, that realization, that fact, is the one thing that keeps me positive, as much as possible, when the road gets rocky.

I know this surgery will be relatively quick, I hope the recovery is fast, I know that most kids feel better in a day or two and then get back on with their lives. Thus, we address Olivia's fears of heading once again back into the OR and we remind her that once her nose is cleared out it'll feel so much better. She of course knows and is excited to be able to hear again, not have clogged ears and to breathe through her nose. Of course if we could keep the colds away, that would definitely help in the meantime.

In regards to her cough, Dr. Luke couldn't confirm or deny that the sinus issues could be attributing to it but she also cultured staph and haemophilus in her culture from a week ago so it's a bit concerning. What doesn't sit well with me is that even with 4 to 5 treatments a day and the addition of bactrim twice/day for a week now and keeping her home from school, none of it has helped the cough at all. She's been sick for a good few weeks and the cough is still as thick and heavy and will not let loose just as it has been for a few weeks now. So we are in limbo, and we don't know if the sinus stuff is a major player or if it's the bacterial side of it, but I do have a call in to cf clinic to make sure we are doing all we should be at this point.

Just as the weather outside today; when it rains it pours.

Tuesday, April 19, 2016

Spring Sickness

I read that influenza peaked late this year . . . and along with that it seems the nasty stuff hit and hit hard. Right before Easter I was just thinking that all in all, Olivia had been doing really well managing the colds and sicknesses that no doubt go along with being a kindergartner and no sooner than I thought that, well the tables turned.

Easter weekend began with a cold for Ms. Olivia and long story long, it produced a nasty cough with nasal congestion and inflammation along with fluid in her ears that still today, has not gone away or will it let loose. Finally, after a few weeks and a trip in to see her primary care doctor a call into cf clinic was followed up with a request to bring Olivia in to see what was going on. At Olivia's baseline, she doesn't have a cough on a day to day basis, period. So for this thick cough to be lingering for 3 weeks plus with no reprieve, something has to give.

Thus, we headed down to CF clinic and began with lung function testing. The pft's that Olivia blew were her best ones yet and based on the values, indicated that she did not have pneumonia, which was good. The one pft measurement looks at how much air a person can take in. If you are suffering from pneumonia this value should be lower because you won't be able to fill up that part of your lung(s) which is infected.

After PFT's we met with our CF practitioner. They did a throat culture to see what bacteria was in Olivia's lungs as well as to rule out strep which has recently been creeping up in Olivia's classroom. We were advised to try Afrin for 3 to 5 days to see if this would relieve some of Olivia's nasal problems. We were also given a 14 day course of bactrim to try to knock out the staph and help alleviate the cough. Olivia was also told that she needs to start blowing her nose rather than just wiping it.

This has been such a huge task, to us adults it's a no brainer, but man-oh-man, to try to teach a kid to blow their nose and blow it well, it's difficult. I get it, her nose is so clogged and the gunk is so thick that it is very difficult for Olivia to move any of it. And when I plead with her to blow harder, she says it pops her eardrums and tells me, "Mom, it's just going to get clogged again anyway". Touche. Thus, this has been a work in progress to try to get the nose clear and really it's been to no avail. With the constant nose and ear problems that have been on and off since November, a few weeks ago, I told Jeff that I thought a visit to ENT was in order as I think there is something else going on in her sinuses that needs addressing and/or surgery. At our clinic visit last week, I was told just that, to follow up with ENT.

I was able to get an appointment with ENT for this week. I was told it's a good time to come in when Olivia is all congested and symptomatic to see what's going on. Olivia will first do a hearing test because we've noticed that when she has this fluid in her ears, she does have some temporary hearing loss, to the point Jeff and I will literally have to yell for her to hear us on the worst days. We will then follow up with the CF ENT doctor for a look into her sinuses and go from there. In the meantime, Olivia is still home from school, doing added treatments throughout the day as we try to get rid of this cough. It's been a long month around here, but hopefully, this is the last of the nasty stuff, reprieve for Olivia's sinuses and ears is coming, one way or another and this cough will get kicked to the curb.