Tuesday, February 26, 2013

Happy 2nd Birthday my love

Today marks the two year anniversary of the one of the happiest days of my life and probably the most difficult and painful day of my life; today is Tera's 2nd birthday.

Last year's birthday was difficult because it had only been one year, she was sick, and it seemed as though the first year had gone by so quickly.  This year was a little better, except that I didn't get to spend the day with her and we've just come off of one of the most stressful, exhausting months as a family.

So I found myself watching the clock in my car very closely this morning on my way to work waiting for it to change to 7:02.  Throughout the morning I thought back to that day and what was going on at the various times and found myself tearing up more than once.  My first thoughts were of course right after she was born.  Holding her for the first time was the most amazing feeling and then we started making phone calls to let everyone know she had finally arrived.  I thought back to our first visitors that day and how we hid everything from them, and to the second day when we finally told everyone.  Mostly what made me tear up were the various responses from everyone.

I've said from the very beginning that what has gotten us through this is our family and friends and those first days are the best example of that.  I thought about telling my mom that something was wrong but trying to assure her, and myself, that everything was going to be okay.  I remember Tom's parents flying back immediately from Arizona and being reassured by my brother-in-law that just seeing her would set their minds at ease.  I remember telling my dad and his lack of reaction because it just didn't matter to him that she was going to be different.  I remember telling my sister who lives out of state and the catch in her voice when I explained what the health issues were that we were aware of  and trying to be strong as I assured her she would be fine when I didn't really know that myself yet.  I remember telling Tom's best friend and his wife and how the only thing they cared about was her health.  I remember running into my uncle's arms in the lobby on my way up to the NICU to see her after he had just found out and how much he just wanted to see her.  I don't remember telling a lot of other people because my incredibly courageous and protective husband took care of that while I was with Tera as she had been moved to the NICU overnight.  I remember constructing the email to our family and friends that didn't know and the overwhelming responses I got.  I remember one of my best friends and another friend from work taking on the task of telling my senior advisory and my department what was going on.

I remember all of the pain, anguish, fear, and questions along with the love, amazement, and joy at finally having our baby girl.  I remember all of that, but I am constantly reminded of the people in our lives.  The ones who don't hesitate to offer help when she is chronically sick, the ones there to reassure us that we will all make it through whatever we are currently going through, and the ones who are just always there for us to help us celebrate Tera's accomplishments.

Tonight, despite the snowstorm, we celebrated with a few of those people and despite the emotions, they were there once again to remind us she is a two year old first, and then a two year old with Down Syndrome.  She had pizza (well we ordered pizza, she ate a few celery sticks and some pretzels) and cake and played with her best friend.  And tomorrow is just another day (but this weekend is the party!)

Friday, February 22, 2013

And the pulmonologist says...

After waiting a week for the results of our visit to the pulmonologist, he thinks he knows what the problem may be: aspiration.  For those of you ready to Google "aspiration", let me save you the trouble:

Pulmonary aspiration is the entry of material (such as pharyngeal secretions, food or drink, or stomach contents) from the oropharynx or gastrointestinal tract into the larynx (voice box) andlower respiratory tract (the portions of the respiratory system from the trachea (windpipe) to the lungs). A person may either inhale the material, or it may be delivered into the tracheobronchial tree during positive pressure ventilation. When pulmonary aspiration occurs during eating and drinking, the aspirated material is often colloquially referred to as "going down the wrong pipe."
So in case you didn't get all that, it basically means that some of her food and liquids are going into her lungs, sitting there and collecting bacteria, and essentially causing pneumonia. This is mostly based on the fact that she's had pneumonia in the same exact spot all three times.   Here's another link with some information as well.

The next steps will be to verify this by doing a speech/swallow study and possibly a bronchoscopy.  Depending on the results of the tests, one of the way we will try to alleviate this is to thicken Tera's liquids to some consistency to be determined by the doctor.  She will probably also have some feeding therapy.

The doctor wants to get on top of this right away because it seems to be becoming chronic.  In the meantime we're going to continue with her nebulizer treatments and schedule the swallow study.  The plan is to schedule a follow up visit with him about in about four weeks from now.

I think that's all for today's lesson in aspiration.  If you have questions, hopefully I'll have more answers in a few weeks.  Until then, we wait.  As usual....

And here comes the breakdown

If someone had asked me on Tuesday how Tera was doing, I would have told them she seemed just a little bit better.  Her cough, while still present and awful sounding, seemed to be decreasing somewhat.  We sent her to school on Wednesday with the instructions to only give her one nebulizer treatment instead of two. 

Wednesday night I was finally able to go to the gym.  Tom and I rejoined XSport last weekend and Wednesday was the first chance I had to go.  I was more anxious to workout than I have been in quite a while.  A lot of people find cardio therapeutic.  I read all the time about people who go for a run to forget about everything else; but when I tried that last summer, all I thought about was how much longer I had to keep running and how unnatural it felt to me.  Even when I did Turbo Fire, which I do like, I was always watching the timer wondering how much longer I had to go before I was done.  But when I do weights, I find myself wondering what else I can fit in before I have to leave.  I focus on my form, the reps, and my muscles, and that’s when I forget about everything else.  I can put all my anxiety, frustration, and stress into my workout and not only burn calories and build muscle, but release some tension.  Because I’m not at home, I’m not wondering what I could be doing around the house that needs to be done and I can focus just on what I’m doing.  I like feeling strong and weights are what do that for me.  By the time I was done, I felt great and back to myself again.

Pretty much as soon as I got Tera in the car after picking her up, she started coughing.  She coughed on an off the rest of the evening (which had not happened in a while) and then it got really bad when we put her to bed.  She coughed most of the first hour of being in bed and I had to go rock her back to sleep twice during that time.  The rest of the time Tom and I played our usual game of glancing at each other each time she coughed, wondering what we were going to do and how the rest of the night was going to go.  It could have been one of those nights when we expect the worst and she ends up sleeping just fine.  It could have been, but it wasn't.  She continued coughing on and off and ended up in a coughing fit from about 2am to 3am.  I was, of course, wide awake from the minute of the first cough, and then had to get up around 2:30 to get her back to sleep when she finally woke herself up crying.  Around 3am I got her back to sleep and she slept cough free all the way until 4:45.  I got her back to sleep again, but then I had to get up and start getting ready anyway. 

The rest of the day went as such: called the pulmonologist in the morning to see if we should bring her in.  They couldn't see her and it was suggested we get her into the pediatrician so someone could listen to her lungs to make sure they were clear.  This of course conflicted with the appointment we already had scheduled with the orthotist to see how her orthotics were working.  We called and rescheduled the orthotist for next Thursday (when I already have a chiropractor appointment), got her into the pediatrician who said she sounded clear and wished us luck.  Went to dinner, picked up her new prescriptions (Augmentin for the sinus infection that won’t go away and a new dose of her Pulmicort to help with the cough), got home, gave her the new antibiotic which she fought tooth and nail, gave her the two nebulizer treatments, and then I spent the next 40 minutes trying to get a screaming, writhing child to sleep.  

At the conclusion of all this I finally broke down.  I cried, sobbed, and bawled my eyes out wondering how I, we, are going to keep doing this.  I admitted to Tom that I knew we would, but wondered how.  I screamed how much I hate all of this; hate that she has to go through it, how we have to go through it, and how can we keep going through it.  I wanted to know why this had to happen to us; why do some people have it so easy, and it has to be so hard for us.  And after a few minutes of this I calmed down feeling a tiny bit better that I had gotten it all out. 

So today I went to work with some seriously puffy eyes and major baggage underneath.  But we had all slept better, I saw my chiropractor and got all the physical stress out, then went and got my nails done for the Gala tomorrow, and had dinner with our good friends and watched our girls just be little girls together

Tomorrow night we get an adult’s night out and we get to support one of our favorite causes at the same time.  The irony is not lost on me that in a week when I have in fact cursed Down Syndrome, tomorrow night I will in fact be celebrating it…

Monday, February 18, 2013

Worry is my new hobby...

Tera's extra chromosome and I are not on the best of terms right now.  Most days I can go without really thinking about it, maybe a fleeting thought here and there, but not consuming my every waking moment like it did in those early months.  Today I'm reminded of those early months.  As I write this I'm sitting in my living room; which I seldom use for this purpose anymore, but did almost daily at the beginning.  Tom and I were surprised by how little time we spent downstairs in the weeks and months following Tera's birth and my computer, at that time safe from investigative little hands, sat permanently on our dining room table.  An outlet for me when I was home alone, a tool to research everything that was so unknown, and my first experience getting it all out electronically and publicly.

Today is also Tera's Early Intervention Annual Review.  It's almost hard to believe we started this process two years ago now as it seems like it's been a part of life for so much longer.  It's even harder to believe that at this time next year, it will be a transition meeting for her to move into Early Childhood and be a part of an actual classroom for several hours a day.  Away from us, away from the comforts and familiarity of her daycare, and a little more out in the world.  I will admit it's a bit unnerving and scary, but we have a whole year before that happens so I can focus on all the things that are worrying me now.

As I sit here I watch our digital frame methodically cycle through the hundreds of pictures we've taken of her since she was born.  I ordered that frame the week we were finally able to bring her home, in fact it might have been the day the we did, and at a time that Tom was wanting to do anything for me, and us, that would help us get through the shock and fear of her diagnosis and help us celebrate her just being with us.  As soon as we got it I loaded it full of every picture we had of her at that point and have continued adding to it regularly.  On an almost daily basis I watch those pictures scroll through and am reminded of how delicate she was and with almost every picture, I can remember the feelings that I was experiencing at that time.  Some days were hard, but I loved that time I was able to spend with her.  People always say that newborns are so difficult, but Tera was such an easy baby (medical issues aside) and while I adore her personality and energy, she's a little bit more of a handful now.  Those days I was able to just hold her and watch her sleep for hours and I really enjoyed that bonding time.

And then there's now.  We have been trying to get through these past several weeks with our sanity in tact, but I have to say, I feel we're losing the battle.  I don't even know how many doctor appointments she's had now; I've lost track.  She's still waking up most mornings before or right around 5am.  She sleeps through the night most of the week, but we usually average about one bad night a week.  Her nose is still running pretty much non stop, her cough is marginally less, but not any better sounding, I think her sinus infection and ear infection are getting better, but it's difficult to tell and she still has four more days of antibiotic left.  Our mornings consist of two nebulizer treatments that she sometimes does well with, sometimes doesn't, and a thyroid pill she's decided to become more difficult with.  Whether at school or at home, she has another treatment at around 11am and then another around 3pm.  Her eating is sporadic but at least weight gain isn't as much of a problem anymore.  Then we try and guess what she might possibly eat for dinner, which sometimes is little to nothing, play for a while, maybe give her a bath during which she hates having her hair washed, then start getting her ready for bed.  Getting ready for bed these days consists of ear drops in both ears, saline spray in her nose, brushing her teeth, an antibiotic and ibuprofen for whatever is currently causing her discomfort, and then her last two nebulizer treatments of the day during which she usually falls asleep.   Most nights we then listen to her cough for a good half hour at least looking at each other each time, acknowledging that it still sounds awful, every once a while racing up the stairs because it sounds like she might be throwing up, and shaking our heads wondering when it will stop and why it's still happening at all.  See my biggest source of frustration and complete mental exhaustion these days, is a lack of answers.  She's had this cough for almost a month now and no one can really tell me why or what to do about it.  I feel like the nebulizer treatments, while probably preventing it from getting worse, are not making her any better.  Her antibiotic is only treating the infections, not the cough, and the infections aren't the reasons for the cough because they came along well after she'd started coughing.

I'm still waiting on results from the pulmonologist and my concern now is that the blood work we sent him from months and months ago, isn't going to be useful and he'll want to do another test.  Which means more waiting.

I'm getting more sleep than I was a week ago, but I'm just so tired of thinking about every single thing that is wrong with her.  My family is worried about me (and Tera of course) and I'm worried about her and there's nothing any of us can do about any of it, but try and get through it.

Fortunately next weekend is the Gigi's Playhouse Gala.  We get to get dressed up, have a nice dinner, enjoy being with our amazing friends and family that are joining us, and we're spending the night in the hotel while Tera stays with my mom and we can hopefully get a good night's sleep with her in more than capable hands. The following weekend is her birthday party and my sister and her boyfriend will be up for the first time in a year to stay with us and spend some time with her.  I have a lot to look forward to, now I just have to make through the weeks in between.

Wednesday, February 13, 2013

Illness Update

These past few days have been a little stressful.  Sunday we knew Tera was getting worse and anticipated possibly having to take her to the doctor Monday night.  But she woke up okay, had a normal day at school, and seemed fine when I picked her up.  She was a little cranky toward the end of her speech session, but it was close to dinner so not unexpected.

We tried to give her dinner and she wanted pretty much nothing, then about 15 minutes later she fell asleep in her high chair; and she was out.  We decided to let her try and sleep a little since she was upright and could breathe better.  Around 5:45 I gave her the two nebulizer treatments and as soon as I pulled the mask off, she started to almost throw up. We also noticed she felt warmer and as I watched her chest move up and down, her breathing had definitely gotten faster.  We very calmly looked at each other and knew there were only two other times when this combination of events had happened and the last time it did, it landed her in the hospital for 24 hours.  We brought her upstairs to change her into her pajamas and Tom called the doctor on call.  While he was on hold, we tried to figure out how we would handle another trip to the ER.  We talked about what we should bring, who would stay with her while she was there if it had to be overnight, who we could call to come to the hospital the next day, and so on. I was very proud (mostly of myself because Tom is usually calm) of how we managed our anxiety and worry and just accepted that whatever the doctor said, we would handle.

After talking with the doctor we determined while definitely a scare, she wasn't quite to the same point as she was the last time this happened and that since we had the nebulizer this time, we could use that to help keep her clear.  We were given what to watch out for and told to call if it got any worse at all.

It was around 7pm by this time and so I just took her into our room to sit with her for a while to keep a better eye on her and to keep her elevated (and to very selfishly enjoy some serious snuggle time with my sick girl).  Around 8pm I decided it was probably a good idea to write sub plans just in case and get things ready in case we had to make a hasty exit.  We wanted to avoid putting her in her own crib until after 10 so we could do one last nebulizer treatment to hopefully get her through the night.  By this time her breathing had returned to closer to normal and I felt a little less worried laying her down.

We both got ready for bed and tried to prepare ourselves for what the night could bring.  It was definitely not as bad as it could have been, but she was up at 2am, 3am, and 4am at which point I just brought her back to our bed to keep her upright again and hopefully get her (and me) a little bit more sleep.  Around 5am we decided I should stay home with her and shortly after that she was up for good.

I brought her into sick call at the doctor's office the next morning and after listening to her lungs, and checking her ears, nose, and throat, the doctor determined she had a sinus infection, ear infection, and ear buildup.  She also thought she heard fluid so she sent us over to the radiologist's office for yet another chest x-ray.  I swear this kid is going to glow from radiation by the time she is five.  Fortunately they are quick over there and less than a half hour later we were told she did not appear to have pneumonia and that we should start her on a round of antibiotics for the infections.

Then today she had her appointment with the new pulmonologist.  After examining her and going through her extensive health history, I walked out of there with few answers, but a promise of some kind of information in the next few days.  He needed time to reread her history, examine all her x-rays, and hopefully get a copy of the blood work results from the allergist we saw last year regarding immune disorders.  What he did tell me was that the majority of her issues come from some flaws in her physical design (all interior of course, her exterior is pure perfection).  We pretty much already knew that, but at least it means what I've been telling people is true.  It also appears that some of her problems may be related to a more weakened immune system.  But hopefully I'll have more to share on that next week.

This is not the type of post I really enjoy doing because it doesn't change anything, but I know we have a LOT of very concerned family and friends that get their updates on her from here and I wanted to make sure I could share the information that I have.

On the plus side, last night went well with no waking up and despite the fact that her cough isn't any better, with any luck in the next day or two at least she won't have a sinus infection and ear infection to contend with.  Here's to hoping that tonight goes quietly as well...

Sunday, February 10, 2013

Short and not so sweet.

There have been a few times in the past 24 hours that I've wondered if I can handle this.  I feel dangerously close to losing it and the one of the only reasons I haven't is because my husband is truly incredible.   

Tera is sick again.  Her cough is worse, last night sucked and she was up for almost two hours and coughing even when she was sleeping.  I'm on little sleep, a lot of stress and worry, and he literally spent most of my waking minutes today trying to make me feel better.  He is in this with me and still managed to take such good care of me.  

Tonight will be one of those nights we go to bed wondering how many times we might be woken up by her cries, or worse, by her coughing or any signs of it getting worse.  She's back to four nebulizer treatments a day and we don't see the pulmonologist until Wednesday.  We're thinking there's a good chance we might be taking her into the pediatrician tomorrow, but we'll see how tonight and tomorrow go.  

In the times I did sleep last night, I slept wrong and my neck and shoulder are causing me crazy amounts of pain.  Tom played hockey Friday night while still recovering from his back pain and is in a precarious situation of making it worse.  Tera is coughing and teething, running low grade fevers on and off, not consistently eating her yogurt concoction that helps keep her stomach in check, and can't seem to sleep well.  We're worried, tired, and trying not to over-stress about what tonight and tomorrow could bring.  

It's killing us to have to do these breathing treatments all the time because she just looks so vulnerable during them and every time she coughs my heart hurts for her.  I'm mentally and physically exhausted and one of the only things that is keeping me on this side of sanity is Tom (and knowing that when I go to work tomorrow my fabulous co-workers and one of my best friends will inevitably keep me entertained and help me get through the day).

I hope to be able to write a more positive post tomorrow, until then, wish us luck.  

Friday, February 8, 2013

Trying to de-blah myself...

I haven’t posted anything in over a week because to be honest I've been in a bit of a funk.  That would seem like a good reason to write and get everything out, but I didn't want it to be a rant about how “blah” I was feeling.  But I think right now, it’s mostly just that I’m tired.  I haven’t slept well or long in weeks, maybe months.  Sometimes I get a random night or two of good sleep, but I can’t remember the last time I had to get up and I didn't dread it.  During the week it’s not necessarily that I don’t want to go to work, although a day or two off wouldn't be bad, it’s mostly just that I know I’m tired.  I've either not slept well and don’t want to get up, or I finally have and I want to sleep longer. 

A lot of people don’t enjoy this time of the year, but I really am not bothered by it.  I don’t mind cloudy days, I like the snow, I like the cold, and we’re not quite as busy as during the holidays.  It does tend to be more difficult at work because this can be a difficult time for student motivation and therefore can result in some more frustration on my part, but I really don’t even feel that aggravated by it. 

But I've noticed I’m tired most nights, I’m more frustrated and angry than usual when people do things that annoy me, I've spent multiple commutes to and from work dwelling on things that I shouldn't be wasting my time with, and then there’s Tera; the light of my life and source of more worry than I ever could have imagined. 

She finally seemed to break through her last virus/cough without pneumonia after three long weeks of multiple nebulizer treatments a day and the constant worry it was going to get worse.  Then as soon as we took her off the last of her treatments, except the maintenance one, she had three different episodes of throwing up that we were worried was some kind of stomach virus or who knows what.  But after the third time there was no more and the worry passed.  That is until Wednesday when she randomly started coughing that lovely little hacking cough she tends to get.  It was only sporadic and not during her sleep so we let it go for a day and then of course last night it got worse.

Tom and I both had to contend with long drives home after the crazy snowfall we got and then after putting her to bed she woke up at 11:30, I got her back to sleep, and then woke up a short time later, I asked Tom to get up with her, and then after some sporadic whining throughout the in-between hours, started waking up at 3:30am and was really up at 4:30am.  This would be around the time I realized she really couldn't breathe through her nose and could feel her congestion and coughing in her back.  Then around 4:55 I decided it was nebulizer time.

So in an attempt to somewhat cheer myself up, I’m going to include a good/bad list.

Good: Tera made it maybe two days without us worrying she was sick.
Bad: She appears to have something again.
Good: We do see the pulmonologist next Wednesday so hopefully he can shed some light and insight into this mess of a lung situation.

Bad: It took a crazy long time to get home yesterday.
Good: I had a beautiful and not too stressful drive in this morning because the roads were mostly clear, but the super heavy snow was, and still is, sticking to everything. 

Good: It’s Friday, I had a chiropractor appointment to alleviate the insane amount of tension in my neck, came home to a little girl pretty excited to see me and who showered me with kisses, had dinner with my family at one of our favorite places, got our grocery shopping out of the way, and will spend the short remainder of my time awake tonight watching Bones and then going to bed.