Dr Heart and a family update

Lillian had her routine cardiology appointment today.  We didn't have to drive all the way to KY this time as they have an office in New Albany.  Woo hoo...it was a somewhat easier drive and hey NO construction...can I get an amen?  It's been two years since she's been. The first question they asked was if she had her heart CT.  I was like, no...what heart CT?  Apparently, his office dropped the ball and didn't schedule one and neither Matt nor I recall him telling us she needed one.  However, he "wrote it in his notes so he knew he had told us" .  Anyway, he got a really good look at her coarc repair this time and was happy with what he saw.  I did ask him what we needed to watch for and basically they things can happen are not evident to us..they can only be assessed through testing.  He told me that pediatric cardiology is relatively young, about 50 years.  And over the last 10 years they are just now starting to see the effects of certain procedures.  Does that make sense?  So basically, she is at risk for aneurysms and dilation of the aorta. Since he got such a good look today, he is not adamant about getting a CT but if/when she has another one he'd just add on the heart part just for good measure.  Overall, a good appointment, but I told Matt when we got home that sometimes I feel like she's a little time bomb ticking away.  It's easy to look at her and sometimes see past all of the issues she has to deal with.

In other news, our third daughter was hospitalized for two weeks in November and those weeks happened to overlap with several of Lillian's specialist appointments.  Isabelle did come home with a feeding tube in her nose after having been diagnosed with a colonic ileus and severe lower quadrant pain.  Most folks involved in our lives were aware of what was going on.  What most don't is that since she's been home, it has been a slippery slope down hill.  She has continued to have problems with eating and tube feedings to the point that she passed out in the shower a week ago yesterday.  On Monday she was scheduled at an eating disorder clinic up North.  At that appointment it was clear she was in danger from a medical standpoint and after a brief conversation that resulted in her shutting down and not speaking to me, we made the difficult choice to have her admitted to Methodist Hospital adolescent psychiatry ward.  One of the hardest days of my life leaving her there crying with her head down. It has been indescribably difficult to have her gone during this time.  I stayed in Indy the entire evening after leaving her and my brain telling me to go back and get her.  This has been a very difficult season and continues to be so.  She is still there and we are hopeful she will be released tomorrow.  While I wanted to ask for prayer globally and I have no shame in what we chose to do ...it is very complicated to explain.  So, I ask for prayer now.  Pray she will be totally healed and continues to recover.

We have made trips to see her every other day and I'm so grateful gas has been so low because it takes a fill up every other day to make the trips.  Matt had to be off work for her previous hospitalization and we are still in the recovery phase of that financially.  Those bills are just starting to roll in. We are grateful to have very good insurance, but will still have a substantial amount out of pocket.  We know God will continue to provide.

I leave you with a picture of Lillian I took to show her how "crazy" she looked to try to help her calm down for the EKG.

Hair cut

Today Lillian got her second ever hair cut in a salon.  The stylist is a friend of ours and graciously opened her shop this evening so Lillian could have her hair cut alone.  There were tears at first.  Fear is her first response to most every thing these days.  As she began to realize that this was kind of fun to sit high in a chair, she calmed down and big alligator tears rested on her cheeks as smiles soon replaced fear.

as I sit contemplating the night, I wish the fears I harbor could be as easy as taking the scissors and trimming them away and dumping them into the trash.  In about a month and a half this little angel will turn 8 years old.  8???  How can it be?  Her 8 years of life sometimes seem like its been an eternity.  Struggling through so much.

As our children are growing by leaps and bounds I'm starting to really realize that it will be just a short time before they are all off living their own lives.   We will still have a great deal of time with Ezekiel and Lillian..which leads me to thinking on the future.  Now, I don't feel like I focus on negative thoughts, but I can't help but sometimes wonder how much time we will be granted with our sweet girl.  And I'm just going to say it.  I don't want to be in that club.  I don't even want to call it out.  But at times I'm afraid.  And that fear is overwhelming.  It weighs on my heart.  Heavily some days.

So today, I'll swallow my tears, focus on this....and pray for peace.

Dr Urology

Today Lillian had renal/bladder ultrasounds.  Once again...it was very traumatic for her and I was seriously emotionally drained after it was over.  I know...I KNOW there are many worse things to happen...and I KNOW because I've experienced a lot of them with Lillian.  I know there was no pain involved in what was happening...but she was absolutely terrified and there was no calming her down.  I'm a plus size woman...and it took every ounce of my strength to hold down that little 32lb body.  I could feel her heart pounding through her chest as if it might actually explode, I worried over every place I was holding fearful she would be left with my huge hand prints bruising her body.  That half hour felt like eternity.  It was finally over and we headed over to the urologist to get results. Praise the Lord everything looked good, she still has reflux which is why we will have to follow with them routinely BUT, she will not need to go back for 6 months and if all is well we will go to yearly visits.  She will need to start some profalactive meds, florogin and d'manos to help with urinary health.  She did have a temp while we were there which I believe is the onset of ears/sinus infections.  It is almost time for her nebulized antibiotics though, so maybe we can nip it in the bud.

Why does it bug me so

I try really hard to evaluate my attitude on a regular basis.  I realize I'm skewed in many areas and am always needing to try to see things from a "normal" perspective.  Course, that being said...any experience anybody has shapes they way they think and feel right? Recently it came to my attention that the words  people say to us in our situation can sometimes feel patronizing.  I will find myself getting aggravated and wonder why they even spoke.  Not only have I found myself irritated in my own life but in other's as well when they are facing the same comments.  After a conversation with another SN mom friend, she spoke some words that kind of shook my thoughts...we didn't know what this life was like before we walked it and so well meaning words are just that.  Well meaning.  Plain and simple.  SO, I must remind myself to be gracious...besides it's not really their words that are painful to me, it's my situation.  I must admit, there are times when I think  I really just want to have a reason to scream and be angry at someone when I'm struggling.  I just want to unload. Never happens because in the end I know it serves no purpose.  Maybe that's why when I get phone calls like I got today I feel totally unreasonably irritated.

Lillian's urology office called today and wanted to schedule her DSMA.  (this was a test they wanted her to have back when we saw them in Feb. and after we researched it, we told them last month that we declined the test.  Many many reasons) So, "Sunshine" calls and is giving me the date for this test that we twice told them we were not doing.  (rather putting her through for their medical research purposes) Here's how the conversation went

Me "she's not having a dsma, just a renal ultrasound"
S "well, back in Feb, the dr wrote we are to schedule it for august"
Me "we discussed it and I told her we wanted to wait to look into to then we told her last month we were not pursuing the test"
S "well, her notes say to schedule it and they company making the dye is discontinuing making the dye and they are almost out of it"
Me "ok, well, we are not putting her through the test, just the ultrasounds"
S "they are almost out of the dye and if you don't get it done you'll never be able to...they are the only company in this (emphasis) country who makes it and they are not making it anymore."
Me "right, we are not having it done"
S (irritated) ok. bye

SO much condemnation in her voice it was palpable.  I think I might have some more attitude adjusting to do today...sigh.

So, it's been interesting here the last few weeks....

Getting to comfortable in not being more attentive to Lillian.   It has recently really sunk in that she needs constant attention.  In many ways she is much like a very young child that doesn't understand many many dangers.  For starters...stairs.  We had been letting her travel down 7 or so stairs alone. (and up) until last friday...she was about halfway down the basement stairs with an older sibling close behind when she just got a little off balance about half way down and tumbled to the concrete below.  I had been upstairs with the baby.  Let me tell you friends, it was traumatic.  For her, for the two older girls and just down right scary for me.  Both girls were crying.  Lillian wouldn't move.  The child has no meat on her bones and she doesn't have protection skills.  (meaning she doesn't think to try to protect her head and such) to make things more difficult, she can't tell us where or if she's really hurt. She's always a little off balance, but when her ears are messed up she's even worse...falling constantly.  A few weeks before that, to make a long story short...she stuck her whole sleeved arm down a burning jar candle.  It's a miracle she didn't catch herself on fire.  There was another dreadful thing that happened, but I think my brain blocked it out because I can't remember it...but it was in between the candle and stair incident.  In a lot of ways, it's as if I have two infants.  I knew things would get a little more complicated with Ezekiel adding in and now that he's crawling and putting EVERYTHING in his mouth...it has gotten super challenging around here.

Fears, have I mentioned fears?  She is suddenly afraid to go to the bathroom alone...she's suddenly terrified of thunder.  We can't take her to band concerts and totally freaked out at graduation...OH that was it the other trauma.  ( I think I blocked that out for many reasons) And the wind.  She's afraid of the blowing wind.  I think it's because she can't physically combat the wind they way we do.  She won't stay out side if there is any kind of wind blowing even if the day is beautiful.  Sigh. If she wakes in bed alone she freaks out.  If I go to the bathroom and leave her alone...freak out.  Traffic noise on a road or a parked big truck outside a building idling.  What's scary about that is the only thing she thinks of is getting away from what it is that is scaring her not comprehending there is danger  in the way she is trying to escape...

We have also noticed a marked decrease in her activity level.  A LOT of resting on the couch.  She used to be up and running all day, but in the last months we've seen quite a change.  I've also noticed lots of episodes of apnea during sleep. All things that will need to be addressed at our next pulmonology appointment and I'm sure another sleep study will follow which we do NOT look forward to.  While I'm not focused on these issues...it does scare me.  Matt pointed out that she is getting bigger and perhaps the lung damage she has is making it harder for her keep up.   That strikes fear in me like I can't explain...but all I can do it give it to God.  It nearly breaks me in two when I think of the what ifs.  I know I know you're reading this and thinking...Michelle you can't do that...but I'm just keepin' it real guys...

In related news, I mentioned our housing situation seemed a bit sketchy...and I was right.  We've been given an ultimatum.  After the fall on the stairs I'm pretty sure we will not be staying here.  We have been offered another home by friends, but it is not in this area and if we can stay in this area that would be our preference.  So prayers  for that situation.

I've had so much weighing on my mind.  I read somewhere on facebook, I think a quote by zig ziglar that your past doesn't have to dictate your future....I strongly disagree... .
  I want to have my OWN home and a home that works for my daughter.  That means one level and a finished or partially finished basement that can be closed with a door.  We have to have central air due to her lung issues.   And I don't want to have to move my kids to a new school again.  So many things out of my control leaving me feeling like there are little to no options.  Thank goodness I'm not in control anyway, but it's still hard.   After typing this I'm thinking it sounds so depressing...but this is our walk and this is the real.  AND, I just really needed to get it out.  I'm struggling with feeling isolated from "normal" and from people who have kids with special needs who have a support network.  It seems people who have SN kids with commonalities hang to each other and I get that, but I feel lonely.  A lot.  *inhale* now I have a big painful lump in my throat....

On a positive note....she's a light and we are all brighter because of her.  We press on and do the best we can changing as the path moves us.

A life changing

On Sunday our oldest child graduated from high school.  As I look at her, my mind immediately goes into slideshow mode replaying her life from birth.  It's difficult.  I thought about her first day of school.  I took her and dropped her off and having to stay for a parent meeting, I remember thinking how incredible chaotic everything was.  I was shell shocked a bit.  I kept thinking "this place is nuts and I'm leaving her here with a school full of strangers and I"m supposed to feel comfortable about it?" And there was Bethany, unfazed, excited, dutifully headed off to her class room without even a look back.  I kept telling myself I should be happy that she was handling things so well.  I couldn't wait to pick her up from school that day.  How empty the house seemed without her there even though there were still two toddlers bustling about and me expecting the fourth child.  I imagine dropping her off at college will leave me with much the same emotions.  I'm already experiencing them now. Only at the end of the day I won't be loading up my little kids and going to get her.  I'll be arriving home late and wondering if I should call her or text her or how many times should I call her.  I'm sure she will be holding her own, getting to know new people and handling it all much better than this old gal.

(barely holding it together now)

Graduation day brought much pride as I watched my daughter in her white gown, gold sash, and purple medallion walk across the stage.  It also brought a wave of stress as Lillian was terrified of the band merrily playing the graduation march.  As soon as we arrived in the building and she heard the band she freaked out, crying, screaming, running in any direction to escape the noise assaulting her senses.  She was trembling from head to toe and did so for over a half an hour.  As luck would have it, we had to sit on the same level as the band.

After the ceremony we flooded out the school grounds searching for our newly graduated child...upon finding her we found a tree and photo ops ensued.  As you see, Lillian didn't miss a one.  I had to shut the door on the thoughts in my mind as I wondered how Lillian will adjust to life with no Bethany to be here. Her best friend sister.  No more slumber parties in the basement with  the one who brings her polar pops, reese cups, and pretty much everything the little girl asks her for.  How will I be able to make her understand Bethany will not be home at night or greet her in the mornings? Change.  It's difficult in more ways than one especially in her world.

Of course, graduation also makes me think about each of the kids growing up and how quickly it goes.  Bittersweet really is the perfect description.  I think of how happy and sad I can be all in the same moment.  Then as my thoughts drift to them moving forward I can't help but think of my little Lillian, who as time passes her by, she seems a little further behind in her own little world. There is a new wave a grief.  I think, how can I be sad that my oldest is graduated...moving on...yet be just as sad that my second youngest will likely not?  Crazy right?

So, if you see my tears, know they are happy ones... they are bittersweet ones...and  they go a bit deeper than just letting one go

.

Dr Lungs check up

Today we saw Lillian's pulmonologist for a routine check up.  He was pleased with her progress.  We are going to continue her inhaled antibiotics because this is as healthy as she has ever been.  She has little breakthroughs of illness but nothing compared to where we were prior to starting the gent.  So she gets that treatment twice a day inhaled via nebs every other month and she's on an inhaled steroid every month all the time.  Forever.  I look forward to being able to get out an about a bit more since flu season is about to pass us by, but I confess...keeping her out of large organized crowds of people and children sure makes her healthy.  Like a semi bubble world.  He does want to repeat a chest ct next year to evaluate her bronchiectasis.  We have to keep an eye on that.  She will have to have general anesthesia for that.  She does seem to be having some decreased activity level...we find her resting herself on the couch.  Unusual since that used to be sign of sickness coming on.  It dawned on me, though, as we discussed it that it's likely a sign of decreased pulmonary function.(a tad worrisome, but I will not dwell there)  I may also have mentioned that she has been making this odd noise for at least six months now, and I can't remember the name he gave it, but he didn't mention that we should be concerned.

She has recently seemed a even more fearful of lots of things, including high wind.  She's afraid to be in my room alone and any running vehicle terrifies her.

We are praying about our home situation as we feel we may be asked to move soon.  Prayers in that arena would be appreciated.  I'd love to update a little more, but a little brother is hungry and he's letting me know.  Thank you for continued prayers for our girl and family.

Nurse Urology Weighs in

Today we saw the pediatric urologist nurse practitioner.  She was supremely nice. Also, I've never seen a more decorated office EVER.  The exam room Lillian was in was deemed the "princess suite" and appropriately so I might add.  The whole room was pink complete with a decorative mirror at kid level surrounded with a pink and white feather boa.  Each room had a theme.  The waiting room was even covered in kid decor.  Anyway...they don't want to DO anything with her at this point.  She spent quite a lot of time getting history. She did say she would like her to have a DMSA test.  I asked what that was and she said, oh and IV with dye and then some pictures.  She said it would take a couple hours.  It would determine whether or not she has any scar tissue in her kidneys.  We get in the car and I google the test...#1 it's a nuclear med test #2 it takes three to four hours  just for the kidneys to absorb the dye #3 then she has to have the xrays.  Can I just tell you how quickly I flash backed to the nightmare vcug???  So, at this point I have more reservations about her having that test than I feel about her really needing it.  It's not going to change her treatment and right now she's not symptomatic.  She also said I need to have her urine tested any time she has a fever over 101. Wow, that might be an awful lot of urinalysis tests.  They want to see her again in three months.  OH- and as she was reading some of the ct's and xrays, she informed me that there is a cyst on her spleen.  First time I heard that.  She said it's no different than having a cyst anywhere else on your body...but still...why don't we get told these things when they pop up.  That was on a CT from well over a year ago.  She is also supposed to be on a probiotic and we are also definitely to keep her on her miralax so she doesn't get constipated...which is something we constantly battle.  So many things that kind of feed into another affect Lillian because she has so many systems that are affected.  We can't add more to her liquids because she has volume issues....oh I could go on and on how one thing flows into another...bah. It' s bit overwhelming as I process it all.  So there you have it.  I feel like this post is scattered and it probably is as my other daughter is sitting beside me asking me one question after another interrupting ever single thought I'm trying to convey.

Thank goodness for a cadbury egg on my way home and my wonderful husband for taking half a day to go with me.  Such an easier trip with another adult not to mention the adult conversation for the drive.

What a difference a day can make

Many times I spill my frustrations right here in this blog.  I share the daily struggles and stresses AND joys that I experience in being Lillian's Mom.  Of course, there is nothing like LIFE to give you renewed perspective each day.  And while the things I share are frustrating and build up and wear on me, please oh please never mistake those feelings for the grattitude and joy I have in this job as well
. A young mother, a high school senior in my daughter's class buried her 18 month old son this past week.  He had special needs and Bethany had recently shared a video of him laughing and moving his legs. Something his parents were told he wouldn't be able to do.  Tears streamed down my face yesterday as I listened to the music playing she posted on facebook of his memorial video.  I don't know why he died, if he got sick or what...but it is a stark reminder that tomorrow is never promised to us.

It takes me back to those NICU days...I counted at least five babies in the six weeks she was there that didn't make it out of the very unit we all shared.

So today, I find myself grateful to have:
a pharmacy to fight with about medications and preauth letters...
an insurance company to cover the costs of a urologist
and a doctor to follow up on tests even if I have to call 100 times.
Formula and feeding bags to prepare each day
 and most definitely a skinny little bottom that doesn't fit in her britches

She lives.  Period.

Seems like at times

one thing piles on another after another after another..then some little something that is absolutely miniscule sends me into a weeping heap. It's been one of those kind of weeks or two..hee. Yep, the other morning, I was trying to get her dressed and I kept pulling out one pair of pants after another that just weren't fitting.  Threw me right over the edge.  Kinda funny when I think about it now.  But seriously...we had an issue with the pharmacy...big shocker.  So let me see if I can give a short version.  She's on a very expensive IV antibiotic that is given by nebs.  She's been on it for a year.  Requires preauth from insurance.  I call in the refill.  I call in 3 different meds actually.  Three days later hubs goes to pick up drugs (I've received a preauth letter in the mail the day after calling it in) comes home with no antibiotic but with a note on the bag stating they need preauth.  HELLO?  They are the ones who initiate the preauth but they don't check to see if it comes when you come to pick up the meds when there is a note on the bag???  One of the other drugs was out of refills, which I did not know.  So they faxed a request to her physician who does not accept faxes on refills.  I have to call them.  But since no one let me know...no refill.  They graciously offer to sell it to me OTC even though her insurance covers it in full!!  After a fight basically I get the meds.  BUT COME ON...REALLY?  Just another day...so she had the VCUG and kidney and bladder ultrasound weeks ago.  I call the dr a week ago and ask about results.  I knew there was reflux but I didn't know the extent and I had no results on the ultrasound.  I was on the cusp of calling again when they finally call me to tell me "there is grade 2 reflux in the kidneys" and I wait....you know, to see what the plan is since that is worse than the last time we checked her kidneys.  She says nothing.  I tell her, this is worse, what does the dr want to do....her response "hmm, I don't know he didn't tell me that" She calls me back and tells me he wants to refer her to a UROLOGIST.  Ok.  What urologist do I want to use?  I don't know, I don't have a rolodex of pediatric urologists in my brain.  I don't even know who is on the insurance.  Isn't there a referral nurse who handles these things?So then I call insurance and she's happy to send me a list of specialists for the kidneys.  I get the email.  A whole list of pediatric NEUROLOGISTS. I keep thinking I must have ridiculously high expectations.  You think?
  I'm sure lack of sleep and housatosis all play into this.  Oh yeah, and after the sewer back up disaster that puts us back into house hunter mode again.Which is a whole other frustrating situation all on it's own.   This past weekend my mother in law has a fall that causes a very bad head bleed.  She remains in critical care, but I believe she is out of the woods on the bleed..just a ton of recovery ahead of her.
 So, why, you ask does a silly pair of pants cause such a reaction...well it brings to light her slightness, how very tiny she is.  Not to mention she spent the entire day yesterday stumbling around quite a bit more than usual.  By evening she takes a couple bad falls.  Which has me wondering if her ears are out of whack or maybe its her sinuses?  Never ending.

Housatosis (house-a-toe-sis): the inability to leave ones home for an extended period of time causing stir crazy behavior.