Musings on a Dark Night

Three Years.

Yep, it's been three years since Esther has been sick enough to be hospitalized.  Just 6 days past the 3 year mark and Pneumonia has taken up residence in Esther again.

This time it happened much faster, but I was prepared!  Since her last bout with pneumonia I purchased a new stethoscope and a Pulse Oximeter from Amazon.  No, this was not recommended by her doctor, but I knew I needed to be equipped so that if Pneumococcus came around again I could get Esther the help she needs before she became so very very sick like last time.

After her last bout, our doctor prescribed breathing treatments (albuterol and pulmicort) to be administered to Esther whenever she contracted any respiratory illness.  This has been invaluable in keeping her out of trouble!  But I still ended up taking her in to the doctor so many times when she was sick "just in case" to be sure that she wasn't going bacterial.  That was working well, but a fellow mom of a child with Down Syndrome told me that I could purchase a PulsOx online - I was all over that!

With the PulsOx and my stethoscope (I listened to her when healthy and when sick and listened to recordings of different breathing tones from an online site) I was able to track Esther's breathing and be able to note changes, both good and bad, when she was ill.  The PulsOx really helps as you can't look at a child and tell how well they are oxygenating unless it is really bad, and you don't want to go there - blue lips are terrifying!  Even faster breathing/increased work of breathing don't always tell you what you want, especially if you are administering breathing treatments at home, as the medications your child breaths in can temporarily cause increased heartrate and faster breathing - so it can be a false indicator of how your child is doing.  And a child relaxed in sleep an look like they are breathing fine, when in reality their oxygen level is low enough to cause concern and you really can't tell!

Esther developed a cough on Thursday (her little sister had been sick with a cough for about 5 days).  I started breathing treatments right away.  Friday she had a fever but still was playing almost like normal so I wasn't concerned.  Saturday no fever, still a cough, so I continued breathing treatments (I listen to her breathing and us the PulsOx before and after breathing treatments as much as possible).  Sunday after her morning breathing treatment her breathing did not clear up as much as I liked and decided to take her in just to make sure I was on track.  At the dr appointment, I realized that the prescription had been printed incorrectly and I was supposed to be giving her the Ibuterol every 4 hours ( as it had been in the past) and not every 6 hours like it said on the box.  I should have checked....anytime your child's prescription refill comes back with a change that you did not hear about directly from the doctor, please check with the doctor!  I had noticed a change on her pulmicort prescription as it said "use daily" whereas before it was "use twice daily" - and yes, that was a typo.  People make mistakes, pharmacy technicians make mistakes.  When it comes to your child's health, it never hurts to double check, but missing something can.

So since it was 3 hours since her last breathing treatment the doctor had us administer her next ibuterol nebulizer treatment there in the office as she also noted that Esther was wheezing a lot, all over her chestl both on inspiration and expiration.  That helped - not a lot, but her O2 levels were on the low side of acceptable - 94/95 verses 92/93.  So she sent us home doing Pulmicort twice daily, and Ibuterol every 4 hours around the clock.  I was to take her back in if she got worse, or if there was no improvement by Tuesday.

Sunday she did good, Sunday night/Monday morning she was still doing well.  Her breathing was a little noisy, but would clear up with breathing treatments and her oxygen levels were OK (94/95%).

Around dinner time on Monday I noticed that she was not wanting to play, looked a little off (red around the eyes), and was easily upset.  I noted this so was extra careful when her next breathing treatment time came around.  In that short time, she had been watching a movie and seemed OK, but when I picked her up she was warm, quite warm.  I listened to her breathing and she was junky everywhere.  Her O2 was around 91-92.  After her breathing treatment I listened again and the first three areas I check sounded nice a clear, but the last area (her lower right) did not.  At first I didn't even heard breathing sounds.  Then I heard more of a popping/gurgling and then a little wheezing.  Yep, red flags for me.  Her O2 had not improved either.  I decided give her some Advil (I have found that Advil can help with breathing as it is anti-inflammatory and can help to reduce inflammation in Esther's narrow airways, and her doctor has confirmed this as well as my own research online)  and to call the Dr office and put her to bed, hoping that over the next few minutes and a change of position would bring on a change for the better.  Nope.  By the time I was on the phone with a nurse, she was asleep, 102 degree fever, breathing 50 breaths per minute and her O2 was down to 88 and staying there and that right lower area still sounded wrong.  The nurse confirmed my conclusion...she needed to go to the ER.

We arrived just before midnight and they pretty much took her right back to a room.  Long story short, I told the doctor what I had been doing for her and what I had noticed in her breathing.  He asked if I was a nurse.  I said no, but that I was Esther's nurse and knew her, better than anyone else.  I said this with confidence, but I was not "in his face".  He thought it was great that I was so pro-active in her care!  He said that he was hearing exactly what I had described to him, but he wasn't sure what he was hearing, so he called for exrays and had us administer blow by oxygen to help get her O2 levels up. After the chest exrays the doctor came back and said I had been right on.  She had a small area of pneumonia, he believe just beginning, and that she needed to be admitted, and ordered her to be started on IV antibiotics and fluids as she was not interested in eating or drinking (and had not done much of either all day).

There wasn't a bed ready for us in Peds (the pediatric floor) so we had to wait in ER for a seemingly long time.  The pediatrician on call (happened to be the very first pediatrician to care for Esther when she was transported to the hospital after she was born at home and was struggling to "pink up").  I told him everything and he was so encouraging and said that he thought that we had indeed caught this right away and that she might do very well since we were getting the antibiotics on board before the bacteria went rampant.  I have to admit I was so thankful that I had been so proactive in her care!

Finally, around 4 am, we were transferred to a room on the peds floor.  We settled in and soon Daddy came to visit and bring us some things from home before going to work.  She finally fell back to sleep again just before her Daddy left and slept until around 8 am (she had slept from after the IV placement until just before moving to the new room).  I, however, was not able to sleep...as her alarms would go off if the blow by got moved too far away from her face when she would move in her sleep.

Through out Tuesday, she was wakeful, but content to stay in bed, play with her dolls or watch movies.  Her O2 was hovering around 92, but would occasionally drop below 90 so I'd have to do the blow by when that happened.  By the afternoon we were no longer doing blow by, so I was happy about that.  The new pediatrician on call confirmed that she needed to remain in the hospital until she can stay above 90% while sleeping without any extra O2.  I was really hoping that she would do well.

Within minutes of falling asleep, her O2 hit 84%...alarms set off and I knew I was in for a long night,  She pretty much needs to have the O2 nearby to keep above 90%.  I have gotten a few cat naps between alarms, but Esther moves a LOT in her sleep.  Right now it's almost 1 am and I just didn't feel like trying to sleep again..of course, she's not had her alarm go off more than once while I've been writing!  Go figure????

Until Esther, I was never woken in the night by an alarm clock that I set so I can wake up  my child and care for them.  This started when she came home (tube feedings via a pump among other things), and has been a part of my care for her whenever she is sick.  It just goes against my mothering instincts...it just seems wrong to wake a sleeping child!  Thankfully Esther is a good sleeper and goes right back to sleep, and sometimes even sleeps through her breathing treatments!

Nights like tonight, weeks like this week, test you as a mother. They test you are a person.  They test what you really believe.  They test what you are willing to do.  When Esther's oxygen alarm goes off, I rocket off the "parent couch" before I even know what I am doing.  I quickly check to see where the Oxygen mask is and get it in place (all the while that alarm is screaming at me).  Then I start shaking if I am not already (adrenalin),  Once she is back up into the 90s, I check her blanket, position and diaper.  If her stats are slow to come up I check her leads and positioning to see what is interfering.  My goal is to be a little of a bother to the nurses as possible without jeopardizing Esther's health - I've heard other mothers crying in the hallway, I heard the other baby's alarms going off every few minutes, I know my nurse is dealing with a very sick baby next door.  Once she is doing well I settle back onto my couch and watch her for a while and pray for her if I remember, then I try to sleep again.  Only it takes a while for my heart to stop racing.  For the panic to subside.  And then just when I drift off, or maybe even before that, the alarm goes off again.  All I want to do is sleep.  I haven't truly slept in nearly 48 hours now.  But I have to keep on keeping on.  For Esther, Because she needs me to.  Because this is what God has called me to do.  And to do it without complaint (OK, so I'm not very good at that one, but God is working on me, especially this week!

You know, in America, we are sold the "American Dream" and commercials yell at us to "have it your way" and have "the easy life."  But God calls us to die to self, to live for Him.  Two very different world views.  When I am out in the public eye like I am right now, I interact with people who can not fathom why we would have so many children.  But it completely blows their minds that we would adopt ANOTHER child with special needs.  What an open door to talk of God, His blessings, and His amazing Grace!  If we Christians are living the American Dream, will anyone ask us why we do what we do?  Or how we do what we do?  God is glorified when we are stretch to our limits and beyond and are living only by HIS grace as then others will see Him in us and stand in awe at what God can do through mere mortals, even though they don't realize that they are seeing Him.

So, why did I tell you all this?  Because I was contemplating a lot of things tonight.  I needed to talk and there are very few people around, even online, to talk to.  And then I thought maybe there are other moms out there with children with respiratory challenges that might benefit from what I had learned, or find encouragement in knowing that they are not alone in the struggle to take good care of their children with special needs.  Maybe you are expecting a baby with special needs and want a glimpse into your possible future.  Maybe you are adopting or considering adopting a child with special needs (YAY!!) and want to be prepared.  Maybe you can not relate to anything I have written, but you know someone who does...maybe you can better understand what they are going through when their child is sick.

I have to admit that after this week (read my blog post from earlier today - 11blessings.blogspot.com)  that I wonder how in the world I can possibly care for two children with special needs and how I will do what I am doing right now when one is sick.  I don't know.  I can't see the future.  I am not in that future.  And I keep reminding myself that God has called me to this.  That He promises the His grace is sufficient. Not for tomorrow.  Not for the "What If"s.  But for THIS MOMENT.  This second.  The next breath.  I keep reminding myself when I worry or fret about tomorrow, I am on my own and disobeyng God's command "do not worry about tomorrow."  As I have heard it said, when the going gets tough, get on your knees, or something like that.

Whatever your reason for reading this, my purpose is, hopefully, to give a helping hand to others walking down this road or walking with someone on this road.  The road of giving for the sake of another.  Caring and loving when all you want to do is be cared for and be loved....caring for the "least of these" because that is the job God has given to you.  To serve unseen.  To give your last ounce of energy without anyone noticing.  No finish line, no trophy, but an undying love for you child and a deep appreciation for the gift that your child is, even though others see your child as a burden.  ALL children are blessings - especially those with special needs.  The blessing is in learning to give when you have nothing left to give, and to hang on tight to your Savior when you are hanging by a thread.  God is faithful.  If Jesus is your Lord and Savior, then you too have the promise that He will always give you the grace for any and all circumstances that you find yourself in.  Not strength from yourself, but that peace and strength that is given that you can not explain, that does not make sense.  It's called grace - unmerited favor.  We don't deserve it, but God gives is freely and it is always sufficient.

If you don't have Jesus as your Savior, then you do not have The Creator as your Father, and you are on your own, and that is a very, very hard place to be when you child or loved one is sick and suffering.  If you want to read about how you can have Jesus as your Lord, and the Creator as your loving heavenly Father, please read my blog post First Things First (or how to know you are saved).

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Esther's Tonsilectomy

 Esther underwent surgery on January 7 for having her tonsils and adenoids removed.  She had this done at Children's Hospital in Seattle.  It went amazingly well.  I'm so glad we did have it done there as she did struggle a lot with post-surgery pain.  They were amazing there.

We arrived a little early, but they said that the surgery team was ahead of schedule, so we didn't wait long.  Esther got to look at the fish tanks (her favorite thing to do at Children's), and play on the Wii with her daddy for a few minutes and then we were called back to the prep room.

In the prep room, we talked with them about her allergy to polyester (all the gowns there were polyester), and we decided it was best for her to just wear the shirt she had on through the surgery.  We were fine with that as it was not a new shirt and her comfort was more important than that!

She was actually all excited about everything.  You see, for the past few months we have rarely taken her anywhere in order to keep her healthy for this surgery.  So not only was she "out and about" but she also had mommy and daddy all to herself.

She was loving it!  She loves meeting new people too - she waves her little wave and says "hi" to each new person who came into her room.  She liked getting a bracelet to wear and playing on mommy's new "tablet."

 It had been decided that I would accompany her to the OR, but the "gown" they brought was pants, and I was wearing a skirt.  We decided to have daddy bring her back instead.  She thought it was all just a lot of fun - she had no idea what was in store for her, poor girl!









Here is Esther in a big bed with mommy to comfort her after the surgery.  She was very quiet and groggy at first.  She liked to just snuggle with mommy and watch a movie.

After a little while the nurse removed the IV as Esther had already drank some juice.  They also gave her some ibuprofen   As the morphine began to go away, we noticed that Esther's eyes were all red, and tears were streaming down her cheeks.  We consulted with the nurse and we determined that this was her reaction to pain, so we added Tylenol   That didn't help either so we ended up having to give her Oxycontin in order to get the pain under control.

It was so sad to see her laying there, no complaining but having tears rolling down her cheeks from the pain.  Such a sweet, sweet little girl!

The first day and night were basically keeping her pain to a minimum and trying to get her to drink.  At first it went well, but the next morning it was a little difficult to get her to drink or eat, so we tried a Popsicle   When Esther was little, she had problems with aspiration due to swallowing difficulties, so she was never given a Popsicle   So this was something very new to her and she really didn't want anything to do with it!

I ended up putting it in a cup.  After a while, I started scrapping off the Popsicle and feeding it to her by spoon, like a slushy.  That worked!

It was just a couple of hours and she was feeling much better and wanted out of bed.  She wanted to leave now.   She even ran out of our room once and I had to chase her down!  We got the go ahead to be discharge, so Daryl took her to the play room for play until the discharge paperwork was done.

She did great on the drive home,sleeping for quite a bit of the ride.

She was thrilled to be home and was very playful for a little while, but she over did it and was very ready to lay low for the rest of the day/evening watching movies!

The first week was tough.  She really needed all the pain meds and developed some really junky breathing.  I used essential oils, both topically and diffused in the room, to help c\open her airways and boost her immunity.  I also was giving her an herbal remedy for immunity enhancement called "Immune Boost 2" that I had ordered from T-Tapp.  We also did breathing treatments for a few days as I did not want her to get pneumonia again!

By day 10 she began to be her old self.  Grabbing her coat and asking to go outside, grabbing an apron and asking to help with dishes and grabbing hands to lead her "helpers" to show them what she wanted to do.  It is so nice to have our old Esther back.. Or should I say "new and improved" Esther back.  She has more energy and zest.  This is good and bad!  Great for Esther, but now we have to be on our toes more to keep her out of trouble!

 I'm so glad we went ahead with this.  You can hear that her breathing is unrestricted.  She sleeping really well at night.  I don't have to diffuse oils at night in her room in order to have her sleep through the night anymore (that gets expensive!).

And best of all - she gets to go out and about again!  We haven't taken her anywhere yet, but tomorrow we are all going to church for the second time since the beginning of September!  I am looking forward to filling an entire pew once again!

Esther Turns Four Years Old!

This past spring we began to notice that Esther snore while she sleeps, and she was waking often to cry a little and go back to sleep on her own.  There were also times when she would wake up in a panic, with a raspy voice, almost like she felt like she was having an asthma attack of sorts.  We talked with her doctor about this during one of her sister, Carese's well child check ups, in July.  We discussed that this can be a sign of sleep apnea, and that her tonsils and adenoids may be enlarged and causing a narrowed airway.

After that I made an appointment with an ENT. But then I tried diffusing essential oils in her room at night and giving her Ibuprophen before bed and the snoring/restless sleeping seemed to abate, so I cancelled the appointment.

Fast forward to October and Esther got a cold - a bad one.  She went from not feeling well Saturday to real breathing problems Sunday night.  We are talking the kind of breathing you can hear from another room that puts a mother into full fledged panic mode.  I was thankful that I had started breathing treatments for Esther the moment she showed signs up being sick, so I knew I had done everything I could and that she needed to see the doctor ASAP!

I took her to see the doctor the next day, after videotaping her breathing during her sleep.  She was diagnosed with having croup, an ear infection and very swollen tonsils. They tested her for strep throat, but thankfully she did not have that. She prescribed antibiotics and oral steroids, and she was breathing better within hours.  But for the first time she reacted to the steroids with a emotional episode...she's never done anything like that before and I hope she won't do it again as it was so hard on both of us.  She was upset and nothing I did seemed to help, but thankfully it only lasted about an hour.

 The doctor watched the little video and said that she definitely has sleep apnea problems, especially when ill.  She made a referal for Esther to see an ENT at Children's Hospital in Seattle and we also talked about monitoring her oxygen during the night while she was sick.   Just that morning a friend had offered to give me her puls-ox machine, so we were all set to make use of that!  Her oxygen levels were fine after that, but I'm hanging onto the puls-ox machine for now.

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Esther's day at Children's went exceptionally well.  She had two appointments that day - cardiology (I'll blog about that one once we get the final results, but so far so good), and then ENT.  It was determined that her tonsils and adenoids are enlarged when she is healthy, and this is very common in children with Down Syndrome - their tonsils and adenoids are normal size or enlarged, while their airways are small.  The ENT explained that children's tonsils and adenoids grow faster than the airway until they are around 11 years old, so that any child with problems much before that time, the problem will only get worse.

So Esther is now scheduled for surgery on January 7.  We covet your prayers for this in two ways - that she will be healthy in the weeks leading up to the surgery (we are keeping her home from here on out - I don't want her to get another upper respiratory illness and have another night like we had), and that she won't experience any of the common complications that children with Down Syndrome usually experience with this surgery (pneumonia, inability to eat/drink for days, dehydration and others).  Thank you in advance for your prayers!

Now to better news!  Esther got to go to the zoo for the first time - and she loved every minute of it! The otters and penguins really put on a show for her, and she really enjoyed their antics!

Esther turned 4 on September 20 - can you believe it???

Esther is learning new words, and putting words together to make sentences - like "close the door"  and "cookies please"!  She is also learning to take off her clothes, and she tries to put them on too.  This is especially funny when she tries to put on her siblings clothes (and a little embarrassing at times when she selects undergarments!).

She also loves to help with laundry, especially sorting diapers and soakers.  She loves to read books, and points to pictures and says the words if she know them.  She will also point to pictures if you ask her where something is!

But above all, her favorite thing is playing with her dollies.  She loves to play momma, but her favorite thing is to have her dollies hug and kiss, or dance together!

Fun times with Esther and lost photos!

Esther has had some great new experiences in the past few weeks!  First off was going to the Lynden City Fire Department for a tour.  She got to sit in an ambulance and a fire truck and even got to take home a fireman's hat.  She loved all the firemen, but got a bit board when they talked for too long and she tried to run out the big doors...but we caught her before she got very far!

Esther also got to spend two days at the lake, playing in the sand, the waves and exploring our friend's back yard even thought it was a cloudy day and it even rained a bit.  She got really cold, but her sister, Rebekah helped warm her up by putting her in our Ergo carrier on her back and putting mama's coat over them both.  She also enjoyed posing for the camera during our dinner on the deck.

 Riding on her sibling's backs is one of her favorite things to do.  Riding in her car seat is always fun because Esther knows that going in a car/van/truck means going to go do something fun, usually.  When we leave with out her she is so depressed.  She cries and cries.  This trip she was upset about something, but she then consoled herself by her usual way - sucking her thumb.  I know, she's almost 4 years old and it's getting time to start breaking her of the habit, but I just can't do it yet.

Esther also got to go to a birthday party and she sat up at the table with great manners and made her mama so proud!

Esther has many talents that keep us entertained.  The older kids made up some ribbons on sticks and Esther loved to spin them around, especially when she would get two of them.  She was moving them so fast that I decided to try to do a blur action photo and it worked wonderfully.  Her symmetry of motion with both hands was amazing!

At the dentist's office she did so well that she earned a sticker, and it was such an appropriate sticker because Esther smiles so much of the time. Her and her sisters had a lot of fun with this sticker, that is for sure.

Speaking of sisters, Esther has 5 sisters now and she got to have her picture taken with all of them recently.  Three big sisters and three little sisters, isn't that just wonderful?

Esther loves to smile, as I've said before, and she also loves to pose for the camera.  Often she's making funny faces too or making weird poses, but this is Esther through and through!

Recently I resurrected my I-phone and found some photos on there that I had never taken off.  This is Esther when she had pneumonia.  She was 2 1/2 and spent 5 days in the hospital.  I know it was March 12, 2011 that she was admitted because I got to watch all the events unfold in Japan when the huge earthquake and tsunami wreaked such devastation there.  She was one sick cookie!  Since then we have been using breathing treatments whenever she gets a cold and she hasn't had any major problems with breathing when she's sick.

In the next photo you can see when she was starting to feel better and starting to eat again, but you can tell by her eyes that she wasn't herself again yet.  In the next photo you can see that she is ready to go home.  She's cleaning her hospital room!  She was a very busy lady who wanted to get down and play on the floor and take everything out of the drawers.  I knew she was feeling better because she wouldn't be content in her bed anymore!

In these next photos, you can see when Esther fell and cut her head.  She had just learned to walk well and tripped and fell while holding a plastic cup.  Her head landed on the edge of the cup and it cut through right above her eye and left a round bruise under her eye.  She was quite the little trouper at the hospital, but she did not like having the cut irrigated, not one bit. But between Jessica and I we were able to comfort her through it all.