Wednesday, April 24, 2013

Strength and where it comes from

Unfortunately my first post in weeks is not a positive one.  We are once again dealing with the dreaded P word: pneumonia.  Yes Tera is currently suffering from pneumonia for the fourth time in 14 months and this one has thrown us for a loop.  The symptoms were all out of order from our past experiences and it came on much, much faster this time.  A week ago Monday she started with a cough, the congestion didn't hit until Wednesday and she started running a fever, Wednesday night she was up almost every hour, got a bloody nose, and then threw up three times the next morning.  Thursday the doctor said it was just a virus, Friday she slept almost all day and ran a fever on and off and threw up again, Friday night at around 1am her fever spiked to 104 and we took her to the ER.

Just before she was transferred
to the hospital
While in the ER we had to convince them this was more than just a cold and high fever and after a chest x-ray confirmed pneumonia, we had to deal with fluctuating oxygen levels.  We had almost convinced the doctor to let her go home instead of being admitted when her oxygen dropped to around 86% for about an hour.  At that point we had to admit she needed further monitoring and they transferred her (and I) to a hospital (we were at an acute care center) to be admitted.  We ended up with the same doctor who oversaw her care back in June and who knew we were anxious to get her out of there. 

They'd already ruled out the flu, RSV, a UTI, and confirmed that her lungs sounded clearer.  She had already gotten a 24 hour dose of antibiotic and several nebulizer treatments along with fluids and the initial dose of the dreaded prednisolone.  After about five hours the doctor told us that her oxygen levels had remained relatively constant and that we could finally take her home.  

Saturday night was calm, Sunday she was more tired than usual but definitely better.  Then Monday came and it went downhill.  She was very lethargic, cranky on and off, had little appetite and was very un-Tera like.  I had an appointment with the pediatrician and the pulmonologist as follow ups to this weekend and neither had great news.  The pediatrician suspected not only pneumonia, but bronchiolitis, a sinus infection, and possible ear infection.  Her oxygen was at first back into the 80's but whether it was a false read or a just a fluctuating level, it went up to 94 before we left.  Then at the pulmon

ologist's office it read 86 and then only went up to 91 at which point he informed me it was okay to go home, but if it had read 86 again, we'd be going back to the hospital.

I hadn't been able to shower all day because she wouldn't let me put her down and I felt like my arm was going to fall off and my back was going to completely give out.  I made some calls on my way home to let people know the update and was surprisingly calm as I gave my mom all the new information.  The whole day I had felt I was teetering on the edge of completely losing it.  I had come close a couple of times over the weekend as the total loss of sleep, stress, worry, and agony at watching my baby be stuck by needles and held down for yet another test took its toll on me, but Tom reminded me that it wasn't the time to lose it and I didn't.  Monday I was coming close again and I realized that I am strong enough to do this.  I kept telling myself that I wasn't, but really when it comes down to it, I don't have a choice.  I know that I don't have to be strong all the time, but I have to be when it comes to Tera.  I can't fall apart when she needs me and when Tom needs me to be his partner through all of this.

When she was feeling a little better
on Sunday (with the help of a cookie)
So I will be strong.  I was raised by a strong woman who, while she may have fallen apart in private, never let anything get in the way of taking care of me and my sisters.  She did what had to be done and so will I.  I had to tell myself that even though it can be easier, giving in to the emotions doesn't fix anything and it doesn't take care of my daughter for me.  So where does my strength come from? It comes from my family, my friends, my husband, my daughter, and my knowledge from past experiences that I can handle this.

Today seems to be the first day that there is noticeable improvement.  I try not to be overly optimistic or pessimistic when it comes to Tera's health so I won't say she's all better because she's not.  I'm still very worried she'll get worse before she gets better, I'm worried somebody is missing something and it isn't being treated, I'm worried it will take her a long time to completely recover from this, I'm worried that she'll get sick again with something else before she completely kicks this because her immune system has been working so hard, I'm worried her oxygen is low and we don't know it, I'm worried when we send her back to daycare it will be too soon and she'll have to come home again, and I'm worried about a million other things like how we're going to get her into the ENT to take care of the ear situation and when we'll get her into the endocrinologist to have her thyroid checked.

These are the things that I think about all day that cause me to be utterly exhausted at the end of it even though the worst of this seems to have passed.  And these are the things that threaten my strength.  When that happens I look at all the many, many posts from family and friends on Facebook reminding me we have a rock solid support system full of people who offer repeatedly to help in any way they can. I am reminded over and over by the amazing people I work with who ask about her and how she's doing and are so genuinely concerned for her health and our well being as a family.  These are the things I use to re-gather my strength when I feel it slipping so that I can help my sweet girl through this and so that as she gets older she can grow up to be strong too.  

Sunday, April 14, 2013

Please just poop!

I've come to realize that one of the hardest things about parenting is that no one can really tell you you're doing it right.  People might say you're doing a great job and that you're a great mom or dad, but until your kids are grown and fully functional, you never really know if what you're doing is right.  We're in the throes of trying to figure out the best way to discipline/train a bull-headed two year old (that might be redundant).  I'm not sure how of all the things that Tera could be age appropriate on, she chose the "typical" characteristics of a two year old, but she seems to be right on track with her peers when it comes to being a pain in the ass at times.  Now if you were to ask her grandparents, and maybe even a great-grandma or aunt or two, they would tell you that she's nothing if not sweeter than honey, but Tom and I know better.  I wouldn't describe Tera as bad, but she has a devilish streak and is what her speech therapist refers to as "testy" as in, she likes to test her limits.  Again, VERY typical of her age, but not quite appreciated by her father and I.  I've read over and over how kids with DS are just "so sweet", "docile", and "loving".  She can be incredibly sweet and loving, but docile is never a word I would use to describe my daughter.  This might be one of those times I wish she fit a little more into that generalization, but alas, Tera is Tera and she is spunky, curious, and even a little spiteful and when she's asleep I can appreciate those qualities a little more than when she's awake.

I've gone through a variety of feelings this particular weekend ranging from self-pity to frustration to happiness to complete and utter head over heels in love with my girl.  Right now, after just having rocked her to sleep after she woke up, I can't stand the thought of leaving her tomorrow to go to work.  I didn't want to put her down and I'm hoping this doesn't turn into another one of those sleepless Sunday nights/anxiety ridden Monday mornings because of it.

It was a wonderfully low-key weekend in which I actually got a fair amount of sleep, but was not without its hiccups.  Our current Tera challenge (besides her two year antics) is poop.  To be more exact, a lack of poop.  See there are parenting challenges, and then there are parenting a child with DS challenges, and this would be one of them.  One of Tera's biggest current health issues is her aspirating.  To combat the aspirating (not fix but minimize the side effects) we have to thicken her liquids.  There is a corn starch-like additive that we put in her milk and water to help her control it and hopefully help it go to her stomach instead of lungs where it could turn into pneumonia.  The other more recent issue is acid reflux which her pulmonologist thinks was being aggravated by one of her nebulizer treatments.  She is off that one for now, but to stop her from spitting up regularly she is on Prevacid to help the reflux.  She's been on the thickener for about two weeks now and the Prevacid since Monday.  The beginning of last week brought a few diaper blow outs and strange diaper rash that eventually cleared up by the end of the week.  Then mid week brought the opposite of diaper blowouts culminating in a lack of poop from Thursday morning until this morning.

She had this problem fairly regularly up until last June when she was in the hospital with pneumonia.  Coincidence or otherwise, she had little to no problems after that until now.  Our best guess is that it is either the thickener or the Prevacid or the combination of both.  Unfortunately, we can't take her off either.  Tom tried lessening the amount of thickener in her milk on Saturday and she started coughing with the first sip.  She also spit up at school on Friday so we are definitely still fighting the reflux situation.

There are few things more frustrating than having a whole new problem present itself as the result of trying to fix two other problems.  The best way I can describe the overall situation is this: she aspirates so we thicken her liquids so she doesn't get pneumonia; if she gets a cold or other virus or infection we have to put her on albuterol so we can keep her lungs clear so she doesn't get pneumonia; the albuterol aggravates her acid reflux so we have her on Prevacid, which in combination with the thickener, may or may not be contributing to constipation which can also make acid reflux worse.

She did finally go once this morning, but that is all she's gone and that's all since Thursday morning.  Depending on how these next few days go, I may have to call the pulmonologist to see what he says about the combination of things she's on and see if she thinks it's time to call a GI.  Not that that will be a difficult appointment to get.

So we currently have a mischievous two year old who can currently breathe pretty well, isn't choking every time she drinks, and isn't spitting up all the time, but who also has only pooped once in four days.  Maybe we can find a fix for the constipation that causes pneumonia...

Friday, April 5, 2013

It could be worse

I come across a lot of information in my readings about Down Syndrome. I have mentioned on here several times the DS board I belong to on Baby Center and how helpful that information has been.  But it's helpful for more than just information.  Each day I get an email with some of the new posts from that day.  I catch up on these emails about once a month and then I just scan them to see which ones might apply to Tera at the time.  I learned early on that reading about potty training when she was six months old was kind of a waste of time because it didn't apply to us and I wouldn't remember it.  Plus people repost the same topics over again when they become relevant to them.  Each person can include whatever they want in their signature and many people include information about their kids (both with and without DS) like what health impairments they suffer from.  Anyway, last week I found an opportunity to try and catch up on some and a topic caught my eye and I read through it.  One of the moms that responded had such a signature and had listed about five different health issues her son with DS has.  I don't even remember the topic I was reading about, but I do remember stopping to think about how incredibly lucky we really are.

When we got Tera's diagnosis I felt like my whole world had just been turned upside down and that we were suffering.  And in a way we were because we weren't expecting it and while it's not a lifetime sentence of misery, it's definitely a life with its fair share of trials and tribulations.  But when I read something like that list of ailments, all I can think about is how lucky we got.  With all of the complications that can go along with DS, we got off really easy.  I know I don't always feel that way and I'm not saying our life is easy, but in comparison to what it could be, I feel like I should just never complain again (but that's not really human nature and unfortunately, to a fault, it's not my nature either).  And so I'm grateful to that post to remind me about perspective.

Ironically, Tera got yet another diagnosis yesterday herself.  It seems we can add acid reflux to her list of (seemingly mild) issues.  The really ironic part is that it's either being brought on or at the very least aggravated by her second nebulizer treatment of Albuterol, which helps keep her airways clear so she doesn't get pneumonia again.  She's had some episodes of throwing up various amounts (see my last post) and I was starting to worry it was because she was aspirating more.  Fortunately we have a fantastic DT who wondered if her nebulizer treatment might not be irritating her throat and causing reflux.  Yesterday Tera had her follow up appointment with the pulmonologist who pretty much confirmed the suspicion.

As far as her lungs and the aspirating situation go, we need to be thickening her liquids as it seems to help reduce the coughing and choking when she's drinking.  We need to keep her on sippy cups and also her nebulizer treatment of Pulmicort twice a day (which does not aggravate the reflux).  There's not much we can do to make it any better and when I asked him if it could get worse he admitted that it could, not that it would necessarily, but that it could.  The most significant sign would be more pneumonia.

For the reflux, we will be taking her off the Albuterol unless it's absolutely needed to help her breathe and she'll also be starting a prescription of Prevacid to help control it.  Unfortunately for her, it's one of the many things that kids with DS can have due in part to their low tone (it always comes back to that damn low tone).  The pulmonologist wants to see how she does with this treatment, but she will more than likely have to see a GI doctor at some point as well.

In case you're keeping track, her current list of specialists are:
Regular pediatrician
Cardiologist
Endocrinologist
Ear, Nose, and Throat specialist
Pulmonologist
Allergist
Eye doctor
Four therapists and a coordinator
And a partridge in a pear tree

In the next few days I'll share some of the current therapy strategies we're working on and what issues have recently come up.