Wednesday, March 19, 2014

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 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 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 -  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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