Tuesday, November 25, 2014

A Quick Update on my Girlies!

Christy was able to go home with Jessica  on Tuesday, the same day that Esther was able to leave ICU.  It took until late Thursday before Esther was able to come home.  We are managing their medication/breathing treatments and it is finally getting easier now that Christy is doing fine without the bigger pain med, oxycodone.  And by eliminating that one, she can also go without the stool softener and the antihistamine as she needed both of those to deal with the side effects she was suffering from taking the oxycodone!  Now she's holding her own on Ibuprofen and Acetaminophen.

Since Esther tested positive to Rhinoviruse or Enterovirus, we are keeping Christy in a corner of my shop, but as of today she also got to play on the floor in my bedroom (this made her VERY happy).

Life with a G-Tube is so much easier than with an NG-Tube, but the recovery/pain (but it's hard to tell what is tonsil pain and what is G-Tube pain) has been difficult.  But it's getting easier every day!

Here are some photos of the girls from last week:

Christy place - all her needs met in one place!

Esther waiting for Daddy to drive up to the hospital and bring us home!

Tuesday, November 18, 2014

A New First - Two Children Hospitalized at the same time....

And hopefully it will the last time....

For those of my readers that like the quick overview, here's what has been going on:

-All kids came down with bad cold within 5 days of first outbreak (starting on 11/5)
-Esther got the cough but had improved by day 4 (last Tuesday)
-Esther gets rushed to our local ER with respiratory distress Wednesday night and is admitted with Jessica staying with her
-Thursday morning Christy goes to Seattle Children's for her scheduled G-Tube placement/tonsils & adenoids removal, Esther improving throughout the day
- Friday morning Esther takes a turn for the worst and is sent via helicopter to Children's Hospital
and at the same time the Rapid Response Team was called in for Christy due to continued increased -need for breathing support. (Jessica goes in helicopter, Daryl drives down here)
-Friday afternoon Christy improves after some respiratory work and breathing treatments, but Esther ends up in ICU
-Saturday Christy is improved enough to be discharged, so we get a hotel for Jessica, Reuben and Christy (Jessica's fiance, Jon, brought Reuben with as a chaperon but ends up staying as support for Jessica).
-Sunday - Esther is finally no longer getting worse but is not improving either, Christy is brought to ER late in the day, but the redness/discharge is normal so they go back to the hotel.  Esther has another miserable evening and needs higher level of sedation to sleep.

Esther in the ER the first evening.
Almost two weeks ago Reuben came down with a nasty cold.  5 days later everyone of the children had it in some way, shape or form.  I took Esther to see the pediatrician on Monday just to play it safe, as she had gotten the cough and she has had pneumonia two times before.  He said she was doing well, but prescribed steroids to start the next day, but only if she was worse.  The next day she was better, so I did not give her the steroids, but continued doing breathing treatments.
Napping during per-op

That same day, Tuesday, we got the call to let us know what time Christy's surgery was to be (we were to check in at 10:45).  We talked about this cold (Christy had only developed a small cough over the weekend, but had seemed fine starting Monday), and they mentioned that Christy might end up being sent home if she presented with cold symptoms, so I got proactive and brought her in to see a pediatrician and get her opinion, and she said that Christy sounds and looked great.

pre-op, checking out her bracelets!
Christy had a rough night as she got a hold of Carese's pizza (she's allergic to tomatoes) and ended up being up a good portion of the night with stomach cramps.  Esther's breathing sounded fine so I didn't do the "every 4 hours" breathing treatments through the night as I had been since Saturday.
All set for surgery

Wednesday was a busy day with orthodontist appointments and packing for Christy's trip to Seattle Children's Hospital for her planned surgical procedures.  During dinner time, Esther began grunting.

After two breathing treatments she was still getting worse so I rushed her to the ER. She was getting worse on the way there even.  In the first little while in the ER she declined even further, becoming unresponsive to all but extremely painful procedures.  There was talk of sending her to Children's, but then she began to respond to their treatments enough for her to stay there.  Jessica stayed overnight with her so I could get some sleep before taking Christy to Seattle Children's Hospital for her surgeries(G-Tube, Tonsilectomy/adenoidectomy).

Chiling during Christy's surgery
On Thursday Christy had her surgeries and all went well, but was a long day.  Esther was back on room air and doing remarkably well.

Christy in recovery
Friday morning, Christy had been in a slow increase in the need for oxygen and it was becoming concerning so they call the Rapid Response Team (RRT). While the team of about 8 people were in our room, I got a text from Jessica that Esther had taken a severe turn for the worse and that they had no idea why and she was not responding to the highest level or oxygen that this hospital could give her.  Back to Christy - they made some changes, including just having her position changed, and she responded well.  But that time, I had been notified that they were preparing Esther to be fown to Children's via the medical helicopter.  Talk about overwhelming!  But God upheld me through even this.
Christy the next morning, just before they called the RRT

Later I actually heard the helicopter land and was soon able to go see Esther.  She was struggling and mad, but working so hard to breath!  Jessica went to be with Christy once she had given them Esthers recent history.  After about an hour or so, they moved Esther onto the floor (I got to ride on the bed with her as she wouldn't let me out of the bed), just 4 doors down from Christy.  Throughout the afternoon we were able to go   from room to room, but being very careful with hand washing as they were testing both girls for viruses.  Esther was presenting viral symptoms and Christy had some yellow junk come up when they removed her breathing tube after the surgeries.

Christy sitting up for the first time
Daryl has driven down after Esther left in the helicopter, and this was about when he showed up.  Being the Daddy's girl that she is, she lit up when she saw him!  By this time she had actually sat up a few times and seemed to be recovering nicely!  Daryl also got some snuggle time with her daddy, even though she was feeling so miserable!

Over the next couple of hours, Esther continued to struggle more and need higher amounts of oxygen, as well as struggling against using the mask.  So they called the Rapid Response Team to her room to evaluate her.

Snuggling with Jessica too!
It was decided that she needed to go to the ICU.  Soon she was transferred up there (I road with her in the bed again!).  In the end she was given in IV, placed on high flow oxygen and a sedative to help her deal with all the hard stuff of having so much taped to your face and attached to her.

AFter the decided to move her to the ICU
she actually calmed own for a little while
When she didn't have enough sedation she was miserable - she was getting ibuterol 24/7 with the oxygen, plus steroids via her IV.  These all worked to make her jittery, jumpy, angry and frustrated.  She wanted to tear everything off and throw any and all toys across the room.  She was miserable.  It took a continuous re-evaluating to keep the level of steroids right.  Friday night was a long night and I only got about 3 hours sleep, and not all at once.  Daryl watched over Christy so Jessica could get some sleep.

On Saturday, Esther had not improved but was no longer getting worse.  Christy was getting better and they had determined that she could be discharged.  Jessica's fiance, Jon, drove down We decided that the best plan was to get a hotel room and have Jessica and Reuben stay there with Christy and care for her there until We went home or Jessica felt competent to care for her in our busy home (post surgery is quite intensive care - pain meds around the clock, plus G-Tube site care and tube feedings plus watching for infection.

Esther in ICU - she looks so little with all equipment!
The logistics of getting Christy discharged and over to the hotel were quite overwhelming as some things needed to go to Christy's room, and others to the hotel, and we had laundry that needed to be done.  God orchestrated things so that I had just the help I needed. I had posted on the International Down Syndrome Coalition FB page, requesting prayer for our situation, and from that Heather Y was able to come and help me out!  We had never met, but she has a son just 3 months older than Esther who also has Down Syndrome.  We enjoyed sharing our stories and we found that both our kids were at Children's at the same time even!  She even brought some toys for Esther and some treats for me!  What a blessing and such an encouragement to know that God was orchestrating things for me in such an amazing and special way!  She also brought her 8 year old son and I enjoyed getting to know him - he was so sweet and so smart!

Having Heather with me worked so well as she could stay with Christy while I ran errands.  She also helped me move things to Christy's room (it was more than I could carry), and she also made it possible for Reuben to get dinner.  And then just when we really needed even more help, Daryl's brother and sister-in-law showed up with some nice things for Esther and myself (Starbucks Gift Card Yay!).  This enabled me to get Christy out - they helped me move out of the room, pick up Christy's prescriptions, get the car packed and warmed up and on our way!  It could not have gone better and it would have been a nightmare/extremely difficult to do it all on my own!  I arrived at the hotel just minute before Jessica and Jon did, so they were available to help get moved into the hotel room - another amazing providence as they had been shopping since noon and by now it was after 6 pm, and yet they arrived at the hotel at just the right moment!  Eventually I made it back to the hospital with a late dinner for Daryl and I.

That night Daryl stayed with Esther and I to enable me to get some much needed sleep once Esther was asleep (the most sleep in a night in over a week was not much, and interrupted often!).   Esther had a very difficult evening, and only wanted me.  She fussed and cried and yelled and got mad and was miserable.  Finally, after midnight, a does of tylenol (I think she gets headachesand a higher level of sedation finally enabled her to sleep, which meant that I could sleep.  Somewhere around midnight I lost it was was crying hard.  Esther was starting to settle down then and she noticed that I was crying.  She started patting my arm and saying to me "it's OK, it's OK" - well that just made me cry harder it was so sweet and touching.  She is so loving and caring so it's doubly hard to see her be so sick and feeling so miserable!
Esther Monday morning, finally sedated enough to sleep

Sunday was another day of Esther staying the same.  No improvement, but no regressing either.  She had a difficult morning and evening again.  Daryl headed home just after dinner so he could return to work on Monday.  It was again after midnight before Esther was able to sleep, and it actually took adding a second/different sedative.  Having had more sleep the night before and also a nap, helped, but it was still  long, difficult evening.  Christy ended up with some redness and discharge and Jessica was having trouble managing her pain, so I had her take her to Children's ER to have her looked at.  They said this was normal, but to watch for it worsening.  She went back to the hotel with Christy and they both had a relatively decent night - Jessica has to get up at least every 3 hours to give pain meds, but thankfully they are given through the feeding tube so Christy doesn't have to be woken up!

This morning Esther was noticeably improving, but Christy had a rough morning.  But by adding the third pain med back into her routine, Christy was able be comfortable.  Esther was having time of being upset, but she was able to rest comfortably while Reuben stayed with her while I went out and did some shopping.

When I returned, she was fine, but then she started being miserable again, they upped her sedation but it didn't help, it was getting worse.  Then the nurse checked her IV (which had been fine just 45 minutes before) and the IV had come out of the vein and had begun to infiltrate into her arm - ouchies!  So the doctor came and decided that Esther was ready to go to just a nasal cannula with getting her ibuterol via inhaler.  She has done fine!  I even got to give her a sponge bath and she got to drink apple juice (she got a feeding tube yesterday as she hadn't eaten since Wednesday and she wasn't allowed to eat or drink when on high flow oxygen or she would risk aspiration).  She perked up like nobodies business!

Soon after that we got a visit from Child Life and she asked how they could help us get Esther more comfortable.  She was able to bring a portable DVD player with some movies that she had not seen in while, including Toy Story 3!  This did help her to calm down.  They also brought a cloth doll which she has enjoyed holding.

Esther since then has had very little interest in sleeping, plus they are doing her Ibuterol every hour.  I was able to sleep from midnight until 4 am, but found out that Esther had only slept a little over an hour, but had been content to just hang out in her bed while I slept.  Since then I've been letting her watch movies.  She is still working hard to breath, but mostly just breathing fast and not so much hard work as her airway is much improved, but can be on room air while she is awake.  She is still shakey and has not shown interest in getting out of bed, thankfully.  She prefers the bed over the recliner too.  She has even eaten some jello and continues to drink apple juice so I think they might let her try some real food for breakfast and if that goes well, she will be able to have the feeding tube out!

So today, Jessica is taking Reuben and Christy home, and if all goes well, Esther will go out out ICU and should be going home Wednesday or Thursday!

This has been a most challenging week for all of us, but God has given me grace and strength for each moment.  Even though at times I felt overwhelmed and cried, comfort and strength to go on was ready and waiting, I just needed to turn to my Lord in Prayer!  Please join me and others in praying that Esther will go home soon and that Christy will continue to improve and need less pain reliever soon and that our adjustment to caring for these two at home (and the long drive home) will go well!

I will try to post again once she is on the floor, but it might not happen.  Just remember that in this case, no news should mean good news!

Saturday, November 1, 2014

A Very Busy October - Photograph Rich Post!

As usual lately, I'm very short on time, but so many amazing things have been happening around here I feel the need to do at least a quick blogpost!  

But first a quick update - Christy's surgery is scheduled for Nov 13 at Children's Hospital.  They will be removing her tonsils and adenoids and placing a G-Tube.  They expect that she will stay at the hospital at least 2 days, possibly more.  We are to expect a couple of difficult weeks following the surgery as she recovers and we learn to care for the G-Tube.  We greatly appreciate your prayers that these procedures will go smoothly and that her recovery will be uncomplicated! Thank you in advance!

I'm going to stick to just photos and some notes about the photos!  Enjoy!

Jonathan was able to borrow a front loader from his workplace.
He and I spent an afternoon and evening clearing and leveling our old
garden area and moving dirt to a low spot!  It was a lot of fun!

I became a Grandmother!
On October 10, just two days before their first anniversary,
my oldest son, Jeremy, and his wife, Sam, welcome
Kaytlin to their home!  

Isn't she such a beutiful baby!  We are so blessed and thankful
for her safe arrival!
Christy finally got to meet her other grandmother (my mom)
Carese and Christy got to wear their matching dresses from Bulgaria
and played together nicely while my mother watched!

Carese and Christy sleeping on the long trip to Grandma's house!

Every day I marvel at the blessing of this miracle baby!
She is adorable, cute and amazing!

The new aunts get an opportunity to meet Kaytlin!  They all could not get enough!

It was incredible to watch my son love on his daughter!
I'm so proud of him and how he cares for his family!

Jason and his girlfriend, Bethany, spent an afternoon
teaching us all swing dancing!  It was so much fun
that we are hoping to do it again soon!
Jason had also gotten a HUGE unicycle and brought it over and that led
to everyone riding a unicycle again!  Even Daryl rode again!
Here is Christy the first full day that we had her!

Here is Christy sporting her new "chubby cheeks" look!
I was trying to get a "Before and After" photo.
She has now been home for 5 months!

See this?  That is her right arm!
The arm that she couldn't move when we first met her!
She's getting stronger and is able to use it more all the time!

Christy is quite mobile when getting her tube feed!
We have to be careful to get all the air out of the bag
to keep air from getting in the tube and causing the
pump to stop and beep!  It doesn't slow her down,
That is for sure!

I finally got the opportunity to get photos of Jonathan and the semi truck
that he drives!

Even better - I got to spend the better part of a day going with him
to Everett and back, with 3 stops to drop off pallets and
pick up wood!
I'll be devoting an entire blog post to this adventure soon!

We spent a wonderful afternoon at a friends house learning
how to make corsages and bootineers for Jessica's wedding in January!
This past week Jessica had  bridal shower at our church!
On the left is her maid of honor, Makayla

She was blessed with many wonderful gifts!

A good friend of both Jessica and I, Elizabeth, was chosen
to do the "interview."  She asked Jessica lots of questions about their courtship!

I was blessed (and overwhelmed at times) to bring all 7 of my daughters that night!

Have NG-Tube will travel!
My two beautiful "Extra Special" girlies!

I got to see/hold Kaytlin again at practice for The Messiah!
I am so hoping that I will be able to participate in the performances this year
along with Jeremy, Samantha and Rachel!

Wednesday, October 8, 2014

Two Weeks of NG-Tube, Seemingly No Closer to G-Tube Placement

Wow - two weeks of insanity, my new lifestyle with a medically complicated child.  

She is asking her hand what she should think about mommy feeding her with a syringe....this was very time consuming so
I requested that we go home with a pump, and that is exactly what we did!
I've heard a few of my readers don't like my long posts, but I know that others like the details. So here's the Cliff Notes version:

- NG-Tube trial a success
- Christy needs tonsils out at first surgery to avoid problems coming out of anesthesia due to her obstructive sleep apnea
- Christy needs medical home to be Neurodevelopmental Clinic at Children's Hospital.
- She will be assessed there in two weeks, as well as getting another swallow study and meeting with a nutritionist
- Best case scenario is tonsils, adenoids and G-Tube surgeries all together and hopefully in early November.

Scroll down for lots of photo and all the details for you detail loving readers!

Good morning! It took a long time for her to get to sleep after being rudely awakened after just falling asleep right after pulling her tube out...then having that mean mommy put it back.  It took hours of mommy rocking and singing to settle her down.  So glad she has a mommy now when she is so very, very sad!

Mommy invented a new way to secure the NG-Tube - make it a part of the hairdo!

Oh SOOO happy to see Daddy!
Mommy!  Look, Daddy's Here!

So, back to my opening statement....Yep - that is what they refer to Christy as..."Medically Complicated"!  This is much better than medically fragile - that is what Esther was until after her heart surgery at 3 months of age.

But that didn't stop us.  No indeed.  What did we do the day after getting out of the hospital?  We took everybody (that still lives at home) to the Pumpkin Pitch in Burlington!  Even Jessica's fiance came along!
Sweet Jon - swept Esther off her feet and carried her out into the field to help her find candy!
 Jessica has got herself a winner with this guy!

The crew - our youngest 10 children plus Jon!  We make a crowd all by ourselves!

Christy seemed to be very happy to be out and about that day,
as long as we kept her out of the wind!

Oh the Joy of grass, fresh air and freedom!
Esther loved being out and about too!
But back to Christy being Medically Complicated!  Overall, Christy is quite healthy - she has not suffered from even a cold since we came home in spite of our family having three colds and two stomach viruses since she came home.  It seems she has a great immune system in place, and that is good!

By feeding her thick foods all summer, I was able to avoid causing her to aspirate and that kept her healthy.  But that was at a cost of low level dehydration.  Thankfully this did not compromise her health.  But if we had continued this routine, it could have.  So now we are giving her fluids and extra calories through her NG Tube and it is working beautifully so far!

Carese enjoyed this sucker
for a long time!
 In the past 2 weeks she has gained over 2 1/2 pounds!  She is sleeping a little better and the dark circles under her eyes are much lighter now.  She take shorter naps too.  She still suffers from reflux, but it is better than it was when I was pushing thickened liquids via mouth.  She is also now running 99 - 100% on her oxygen levels, whereas when I was pushing thickened liquids via mouth, she was running between 92-95%.  This proves that even with thicker than pudding level thickened liquids she was still aspirating at possibly every meal.  And she was loosing weight and tiring easily.

So she has passed all the requirements with the NG-Tube that show that she will benefit from having a G-Tube placed.  But we can't schedule it yet.
Christy No Like EEG!  She almost got her
NG Tube out with all her wiggling around!

At Seattle Children's they have a new protocol - a child need a medical home (a doctor/clinic) who will take the responsibility of ordering the surgery and for follow up care.  Originally they had assigned her to pulmonary, but since her O2 stats improved so well in response to discontinuing her fluids by mouth, they no longer felt that that was the best place.

Everyone enjoyed the Buddy Walk again this year!
On Thursday after many phone calls and no one being able to get in touch with the surgeon for answers, the nurse suggested that we come to clinic tomorrow and get to talk with him face to face.  So we scheduled that and I also requested that we get an appointment for Christy in the PASS clinic.  This is a pre-surgery appointment where you meet with the anesthesia staff and they evaluate your child to see if they are in good shape for surgery and to address any concerns that anyone (parent or medical staff) might have concerning having the child sedated for surgery.  I am so glad we did this last Friday (didn't plan to go down there again until Thursday, but it was needed in order to confer further with a hard to get a hold of surgeon, and to prove that Christy was indeed doing so well on the NG-Tube)!  The anesthesia team is very concerned about her Obstructive Sleep Apnea (OSA), and that is they only place the G-Tube in her first surgery, her tonsils/OSA may make is very hard on her in recovery, maybe even cause a crisis.  So they wanted to recommend having her tonsils/adenoids  (T/A) out first, or at least having both procedures done at the same time.  So she said that she would talk things over with the surgeon and ENT doctor and get back with me early this week.
Christy with her NG Hairdo and her knew Hello Kitty G-Tube enhanced back pack!!
Being out and about with an NG-Tube - no problem, just have to plan ahead!
Earlier that day when I met with the surgeon, he said that he really would like to see Christy have a swallow study done at Children's and that in all likelihood, they would be switching Christy to Neurodevelopmental (ND) for her medical home, which might require them to see her in clinic before they would do that.  Bummer!  Another trip to Seattle.
A photos is worth a thousand words....these two are becoming fast friends
and Esther likes to comfort Christy when she needs it!
Having an NG Tube does not mean she doesn't eat!
She still enjoys eating three meals a day!
On Monday I got a call from the ND clinic and it was even a doctor! Dr Lisa called to see what I understood as to what was going on with Christy and with Children's and why she needed to be seen there.  She also agreed that a swallow study needed to be done.  She also wanted us to see a nutritionist to go over her nutrition now that we've had the NG-Tube for a while.  But she also said that they were scheduling into December, but that she would work to get us into the schedule in the next few weeks.  Within a few hours, I got a call back that she could be seen for all three appointments in two weeks.

As of a few minutes ago, she is now scheduled for her T/A 2 weeks from Monday.  If they decide it's best for her to just have her T/A done first all by itself, then it's all set up.  If they want to combine the T/A and G-Tube we'll cancel that and schedule both together at a later date.  If she has the T/A first she will most like not have the G-Tube place until December...not my first choice that is for sure!

So, here we are, doing the NG-Tube thing for an undisclosed amount of time.  I'm guessing that if all goes well, she'll be getting her T/A + G-Tube surgeries at the same time and it will be sometime in November.

chicken alfredo with spinach....
nasty looking but she liked it!
thickened peaches on the left,
thickened chicken alfredo on right
Time will tell.  At this point, we have figured out how to prevent Christy from pulling out the NG-Tube, but it was been a huge learning curve.  My experience with Esther having an NG-Tube was limited to a newborn who had very little control over her limbs.  Christy has lots of control over most of her limbs.

The first 5 days home after the NG-Tube placement,  I had to put the NG-Tube back in 4 times.  Not bad, and each time it was a little less traumatic for Christy, but I am so glad it's going so much better now.

She now noticed by sight when I switch
foods and wants to decide if she
will like it or not!
She does not like peaches
and she prefers not to eat pears!
We keep an arm brace on her left arm most of the time.  She does not seem to mind this and is thrilled when we take it off.  This has also led to her using her right arm more and that is a good thing!  She has also successfully pulled the feeding tube out with her toes, so now she wears tights of footed pajamas all the time (she pulls socks off in seconds!).  We also have to keep her arm brace under a long sleeved shirt as she will pull the velcro strap off with her teeth and shake the brace off in no time!  So after learning these lessons, she has not been able to pull it out since last Thursday morning.  So it is getting easier.

Monday I took the youngest nine children to the grand opening of an ice cream parlor
and we all enjoyed some great ice cream and just going somewhere just for the fun of it!
  It also was great motivation for getting the Monday morning chores done!
So I have two weeks of normalcy - only appointments for therapy one day a week!  I so need this.  At first I was frustrated and bummed for the seeming delay for the next step, but since then I have seen that I need some time to just be home.  I'm worn out and tired and stressed and all that leads to being further worn out/tired/stressed.  So I'm going to make the most of this time and do a few things at home that I have been unable to do since the beginning of September - get caught up on things like laundry, getting school underway for my kids, doing therapy/preschool with Esther and just being there for my two year old who needs her mama!  Of course that will all be happening between feeding Christy 3 healthy meals per day by mouth, and three tube feeds via her NG-Tube and feeding pump.