Monday, February 23, 2015

CF Climb 2015

Thank you to everyone who has supported the Cystic Fibrosis Foundation in the Climb for a Cure event past and present. This Saturday, we will head down to the IDS Center to climb for our 6th year in support of Olivia. When I sit and think for a minute, it's hard to believe this will be our 6th year already and that the time has gone by so quickly. Wow, a lot has changed in 6 years!

With Olivia's g-tube placement surgery this past August, her sinus surgery in January, her upcoming GI procedures in March and likely GI surgery thereafter,  the progressiveness of cystic fibrosis reiterates to us the importance of why we continue to climb and fundraise until a cure is found. 

The first 4+ years of Olivia's life in relation to clinic visits, hospital visits, hospital procedures and surgeries were a breeze, compared to the past 6 months and what will ensue in the next two. 

In 2014, Team Olivia-Polaris was the highest fundraising team for the CF Climb in Minnesota, raising over $15,400 for the Cystic Fibrosis Foundation. We thank everyone who joined us to make this amazing feat possible and we hope to be successful in the 2015 event and are well on our way! Team Olivia-Polaris currently has 36 registered climbers, has raised over $7,000 and is in 2nd place for the highest fundraising team and we have yet to account for the Polaris Foundation's matching gift! Thanks to all of you who've made this happen. We are sincerely grateful to those who have joined our team and will be climbing with us and to those of you who have donated to support us. 

For more information, visit our Team Olivia-Polaris webpage 
and to all of our team members . . . see you Saturday!





Thursday, February 12, 2015

GI appointment update

The journey continues . . . yesterday we visited with a GI doctor to address, rule out and/or confirm issues Olivia may be having with her GI tract causing some of the problems she's been having. I was hoping that there wouldn't be any, but I know better by now and that, was wishful hoping. Jeff and I in depth, described the symptoms Olivia has been having with her lack of eating, nausea and vomiting and the downward spiral she's been having with her mental and emotional state as well as the physical effects and toll all things are taking on her body.

I absolutely loved Dr. Sarah, the GI doctor we met with yesterday. She was so knowledgeable and so detailed, it was great. A lot of my questions that have sat unanswered have been cleared up. Jeff and I both for the longest time wondered why our CF team never had a GI doctor be a part of Olivia's care, given her history of GI issues and meconium ileus at birth. To us it only made sense and apparently we should have advocated more than we did for this.

Everything always makes sense in hindsight . . .

we should have insisted that we get a GI perspective on things before we made decisions that we have. However, meeting with the GI surgeon before we decided to have Olivia's g-tube placed, we figured that if there was an alternative to the g-tube, he would have suggested it.

I was pretty ticked off yesterday when Dr. Sarah said that based on what we were describing she thinks Olivia has "delayed gastric emptying". The fact that she has little to no appetite and has for about her entire life, the fact that she can vomit up last nights supper the following morning, the constant nausea, vomiting, gas etc., all indicate to her that this is true. However, to confirm this is the case, Olivia needs an upper GI study. Olivia was just sedated and in the hospital for her adenoid removal surgery literally a few weeks ago. Prior to that, we asked our CF team if at that time it'd be possible for a GI doc to be there to do an endoscopy etc, to eliminate another procedure if we could. Long answer short, we were told no. So yesterday, when Dr. Sarah told us that she wants Olivia to undergo an upper GI study and recommended an endoscopy and an MR enterography to confirm or rule this out which will again require Olivia to be sedated for a 2+ hour outpatient hospital surgical procedure, we were frustrated.

Olivia's mental state is already deteriorating and she continues to be afraid and fearful of the doctor office and hospital. I continue to tell her that while she has to go to the doctor she does have choices, yet it doesn't help.

I'm frustrated.

Jeff and I agree this diagnosis makes sense. Olivia has struggled with weight and appetite her whole life. What if this is and always has been the reason? Her intestinal issues and surgery at just 4 days of age is a good indicator of the possibility. Is it possible she's been suffering from this since near birth? If so, then how would she know she's supposed to feel any different? How would she know that the nausea and stomach pain are not normal if it's always been there on some level for her?  Perhaps if we can get this fixed, maybe her appetite will increase, maybe she'll gain some weight, maybe we wouldn't have needed to jump the gun on the g-tube or needed it at all.

I'm so frustrated that no one pointed this out to us prior, so frustrated that the g-tube was the ultimate decision and nothing else was presented as a trial to do first or a test to rule out something else.

Olivia has been through so much in the past 6 months, physically, emotionally and mentally. CF is a progressive disease, it's going to get worse, the doctor visits and surgeries and hospital stays will all come in shorter duration, I know this, but honest to goodness, with a little common sense, collaboration and individualized care, some of this stuff could be lessened or eliminated.

But no. Here we go trying to schedule yet another full day hospital procedure for Olivia while having to make arrangements for Landen who is almost at the peak level of missed days of school without us getting more threatening notes or a call from the county.

If the delayed gastric emptying is confirmed, then it'll more than likely be another surgery, as we were given treatment options of another GI surgery to try to open up that part of the intestinal tract that is narrowed or to place a GJ tube, which from wikipedia is described as,

 " A gastrojejunostomy or GJ feeding tube is a combination device that includes access to both the stomach and the jejunum, or middle part of the small intestine. Typical tubes are placed in a G-tube site or stoma, with a narrower long tube continuing through the stomach and into the small intestine. The GJ-tube is used widely in individuals with severe gastric motility, high risk of aspiration, or an inability to feed into the stomach. It allows the stomach to be continually vented or drained while simultaneously feeding into the small intestine. GJ-tubes are typically placed by an Interventional Radiologist in a hospital setting. The primary complication of GJ-tube is migration of the long portion of the tube out of the intestine and back into the stomach."

Thus, Olivia is looking at 2 more hospital sedation procedures within the next 2 months. It just never ends. It seems just when we get over one mountain there is another one to climb with no break or breath in-between. I guess we've been spoiled, Olivia had done so well for the first 4-1/2 years of her life requiring no further hospital stays or surgeries except for the initial one at birth and now in a matter of 6 months, she'll have undergone 4 surgeries/procedures. It's exhausting, anxiety inducing and so hard.

Clearly, if there is a problem that is treatable we want to do that for Olivia. We want her to feel as well as she can and to be as healthy as possible, but goodness gracious, these back to back hospital visits, surgeries and procedures are a lot to take in. To have to try to tell her that she must go back to the hospital to get something else fixed, the look on her face, the fear in her eye, it breaks my heart. No wonder she has this deteriorating mental state, she has little control or say over her body and the things the doctors are doing to her to try to help her. She's a smart girl, she is picking up on all that is going on. It's difficult.

After we met with Dr. Sarah, Dr. Boys visited with us briefly and reassured us that what we are describing and what Olivia is going through is "normal" from what he's seen from kids and families living with a chronic illness. He gave us some tips on how to help ease some of her anxiety both at bed time and when having doctor visits. His intern wasn't able to make it yesterday so she will be calling me today and we will set up visits with her for Olivia when we have other CF appointments so as to not add more time at the clinic but instead piggy back on those times when we are already there as to not add more anxiety to Olivia.

So, the journey continues. Next up is to see when a spot is open for this next procedure and push forward with that. If the delayed gastric emptying is confirmed then we will proceed with figuring out what to do to treat it and if that isn't the case, Dr. Sarah said it could be "small bowel overgrowth" which is a different ball game that we'll address if need be.

Putting my frustrations aside, as it doesn't help anyway, we will push on, man up and take this in stride like all things else we deal with day in and day out pertaining to cf, continuing to hope and pray and do what we can to fundraise so that maybe, just maybe, someday a cure will come for Olivia and make some of these struggles go away.

Monday, February 2, 2015

Struggles

Do you have those days where you feel like you are doing the best you can . . . muddling through it all . . . doing all that needs to be done to get from one moment to another? Those days when you feel like everything you do isn't quite good enough . . . you feel like your hands are tied, your head is barely above water despite all you give and yet you're not quite there, it's just not good enough?

If you read this blog, you know we are struggling. Olivia is struggling with anxiety and attachment to me and all kinds of issues, most certainly, directly related to cystic fibrosis and her g-tube. The little girl she is - trying to come to terms with her disease and what it all means. The doctor appointments and hospital visits and surgeries that only seem to be coming more frequently with more doctors to be seen all the time. Today I seriously thought that Jeff and I should buy a house down in Minneapolis closer to the clinic. The emotional toll cf takes on her as well as the physical changes, such as her g-tube button, reminders of all that this disease is. I can't even imagine the fear, stress, anxiety and questions that form in her mind, the thoughts that roll through her head, those things that she keeps in and are unspoken. The constant stress she feels to eat, gain weight, wash hands, try to stay healthy, I can't even imagine the burden she carries.

As her mother, the stress, fears, anxiety and thoughts that I have, are hard enough to handle some days. I however, have seen, been, done, lived through more years than she has and it still knocks me out some days. My heart about breaks in half, just thinking of how she is trying to process and figure out this life of hers.

CF. . . this disease, it's a hard one, there is no doubt about it. There is no suit of armor or skin thick enough to tackle it head on as a warrior every single day. . . no person strong enough to not be overcome by emotion and all that this life takes; at least not in this family.

It feels like such a scam sometimes. The whole "Robbing Peter to pay Paul" thing. For all the pressure we've always felt and put upon ourselves to get Olivia to grow and gain weight and keep her healthy, the changes we've made, the neurotic things we do to prevent a germ from getting to her. The stress and anxiety isn't just on us, imagine all that stress she has felt at every meal or at every gathering where a germ could be lurking.

CF changes you, things you never worried about before or gave a second thought to, all of a sudden become so consuming it's all you think about. We get so caught up in doing everything we can to protect, that we forget about doing things to live. We've focused for so long on the physical stuff that cf is, that the emotional and mental health is seriously hurting.

Today we had Olivia's CF follow up. Her BMI 3 months ago was at the 70th percentile, today it's a the 30th percentile. This was no shock to us, as I've said, we've been struggling. Olivia's mental health has been so out of whack, with her fears that she's caused herself to not tolerate tube feeds, not eat by mouth, working herself up into such a panic that she vomits. Clearly, it doesn't take a genius to figure out the results of that pertaining to her weight and BMI. She's lost weight and things mentally aren't improving.

Jeff and I both feel helpless. No matter what we say or do, we cannot get the fears out of her head at night that I'm not going to leave her. That has to be one of the hardest things to chew as a parent, when you tell your child something and no matter what they don't believe you or trust you. It's not like we've done anything to prove otherwise and it's not like this is a first attempt, this has been heading in a downward spiral now for over 3 months. Olivia won't open up to us. She meows like a cat and pretends to be one, rather than use words. When she gets worked up enough, it's pure heartbreaking. When Jeff and I have exhausted every option at bedtime to try to calm her down and still have no idea what it is exactly that causes her the fears as it's been the same with or without being hooked up to the g-tube, when we try to get her to open up and tell us why she can't sleep, why she feels she needs to puke, the most we get is "Mom, I love you so much, you are my best friend, I just want to be by you . . . ", I can seriously feel my heart break when she says these things.

We are still trying to figure it all out, it will be a long process, but to hear that, it stings. It's painful because we've done this. As her parents, we've sheltered her, we've limited her exposure to others, we've done all we can to keep her healthy, and by God, we've done a pretty good job, but I ask myself at what cost? What is the trade off of a "physically healthy child with cf" one that is mentally damaged? That's how I feel right now. Truly, I am her best friend, to her, I am her world. I think she believes that I am the one and only person who can do everything she needs to have done to get through a day. I do her treatments, I give her medications, I feed her, I hook up and run her g-tube, as my sister says, "I think she knows you are her life line". Again, this is on us. We've made it our choice. Jeff works. I stay at home, I am the primary caregiver. Jeff and I don't do dates. We don't do nights out. Where we go, the kids follow. I can count on one hand, the times we've been without the kids in the past 5 years. This is a life we didn't choose, but the choices we made in how to live it, were all ours. Jeff and I have done the best we can. Everything we do, we do out of love for our kids. There's not a thing I wouldn't do for either of them. I know we are good parents. I know we are doing everything we can and know how to do all while feeling comfortable doing it, but we aren't perfect. We haven't truly let Olivia live like we should be doing. She needs to get out, see things, play with kids, do things without me to know that there is a heck of a lot more out there than mom.

Today at clinic, we were told to stop pushing meals/snacks, to let Olivia chose to eat or not and to keep doing the g-tube at night, getting up to the maximum rate of 75mL/hour for 10 hours. We as well as our care team know that the g-tube isn't enough calories per day but we know and have been given doctor's orders, that we need to stop pushing as this is just increasing the anxiety Olivia has over food and meals. We were also reminded that all the focus on Olivia at mealtime, takes away from Landen. That stung as well because it's true. Landen eats like a champ, rarely complains, goes with the flow and is the sweetest son ever and often doesn't get the attention he should at meal time over the stress we induce and focus on Olivia. We are to keep using zofran at bedtime to help eliminate the vomiting that we think is anxiety induced for at least the next week and half until we go back to clinic to meet with GI to see if there are further issues GI related that need to be addressed, not just fixed with a zofran bandaid. After we meet with GI, Olivia will meet with a peds psychologist and we will meet with Dr. Boys from neuroscience who has worked at our CF clinic for over 10 years, to figure out a plan going forward for us and Olivia. This should prove interesting as Olivia won't be with us while we meet with Dr. Boys. However, at least they will see exactly what we are talking about with her attachment issues.

When we met with Dr, Boys briefly today, the words he said, I already knew but to hear them out loud , well they still hurt. He said that even without knowing us, that as parents dealing with a chronic disease and all the pressures we feel regarding weight and germs, changes us, causes us anxiety that in turn Olivia picks up on. He went on to further say that a lot of the anxiety seen in peds is caused by how the parents themselves deal with their anxiety and how they handle stressful situations surrounding a chronic disease. This I knew. I've known this for some time. It's not ironic that a fellow CF mother whom I trust and look up to wrote me an eye opening letter along the exact same lines a few weeks back. I try like hell to keep it together, to not let my own fears and insecurities regarding this disease show through, but with a 24/7 little shadow, it's not possible to keep it together all the time. I'm pretty tough, but for as tough as I am, and can appear to be, I'm still weak. I have no doubt, Jeff and I need to get our anxiety in check in order to help Olivia's.

Like I said, this disease is so much more than physical, it's emotional and mentally progressive as well. Olivia is a smart girl. I can read her like a book just as I know she can read me. When I'm upset she sees it. When I'm struggling with the fact that she won't eat, she knows it. When I'm fearful for what the future holds, she picks up on it. Some days, it just really, really stinks. Today, is one of those days.

We all know life isn't fair. We all know life isn't easy. Jeff and I know that CF is a disease that affects every aspect of one's life. We know we need to do better and that we can do better. We are going to have to learn to let go of some of the things we have been clinging to in order to let Olivia go out into the world and be who she was meant to be. It won't be easy. It won't happen overnight, but I believe we will get there.

For now, I've instructed the kids that we can all do better. Olivia is to try to not get so worked up at bedtime, thinking that I'm going to leave her, because I never have. I'm going to try to not get upset, and yell and to not push and fret over meal times and to just let be what will be. I've told Landen to try to not yell at his little sister as much either. Jeff knows what he needs to do as well. We will see how it goes for the next week and a half, follow up with GI to see what's going on there and then with psych to get a plan of action.

I'm sure it'll be a long and bumpy road ahead, full of ups and downs and changes. Who knows what our meeting with GI will bring. We are still unsure if Olivia's nausea and vomiting are related to anxiety or is there something more going on in her GI system? Our meeting with Dr. Boys is sure to be an emotional and eye opening one as well. For all that Olivia is going through and for what lies ahead, there's not a whole lot anyone else can do right now. Pray for her and for us to overcome the struggles we currently face. Pray for a cure . . . and do what you can to get her one. The CF Climb is coming up at the end of the month. Any donation has the potential to cause great change. Join our team or make a donation to show your support.