If you have faith as a mustard seed, you will say to this mountain, "Move from here to there," and it will move; and nothing will be impossible for you. ~Matthew 17:20

Monday, January 27, 2014

Spencer's Home from ACH!!!!!

Here is your surprise for the day; Spencer was discharged from ACH this afternoon and we are already home!

So, this week, Dr. Berlinski is the attending for Pulmonary and he came in this morning, listened to Spencer's lungs, saw how good Spencer looked and said, "Why is he still in the hospital where he can get sick?"  After looking over Spencer's chart, his opinion was that since Spencer had been on IV antibiotics for a full 10 days and on inhaled antibiotics for six days, he felt that Spencer had received full coverage.  Dr. Berlinski felt that continued treatment would not guarantee that Spencer would not come down with Pseudomonas again but it did expose him to hundreds of cases of RSV, pneumonia and the flu since the hospital is full of sick children.

Consequently, today was the quickest discharge in the history of all our discharges at ACH.  Spencer did get his PICC line pulled (no IV antibiotics at home), had a new and improved g-button put in (to hopefully improve his experience with his feeds) and then they literally kicked us out the door as I'm running around trying to gather up all of our stuff!

I want to give a big shout out to our very first, our favorite and our fabulous friend and Child Life Specialist, Esther.  Spencer knew that this g-button change was going to be very painful and he "suggested" that I leave the room and let Esther come and be with him during the procedure.  What a smart young man he is!  I was a wreck but he handled it like a pro, as usual.   Thank you again Esther for all that you do for our family.  As Spencer said, "Mom, you would have thrown up and passed out."  Gees, so glad I was in the hall praying!

We are home and warm and loving on all of the animals and looking forward to sleeping in our own beds without people coming in to check on the machines or the IV.  Spencer is already looking forward to "hitting the ground running" tomorrow for school and making plans for a Super Bowl party.  I'm looking forward to sleeping till noon and having someone bring me breakfast in bed.  Ha!

Max met us at the car and has not left Spencer's side.  Love these two faces.

My penguin pj's are on, my wine is poured and everyone is leaving me alone.  Welcome home, mom.

Thank you so much for praying us through these last two weeks.  We couldn't have done it without you.

"Give thanks in all circumstances, for this is God's will for you in Christ Jesus."
~1 Thessalonians 5:18

Sunday, January 26, 2014

Fighting Frustration

Sometimes, even though I don't realize it until later, I set myself up to fail.  You would think that after 47 years I would be a little more wiser.

After 14+ years of spending time in the hospital, I think I know everything.  I am comfortable with the nurses and doctors, I know Spencer's illness inside and out and I know what to expect when we have extended stays at ACH.  So, I get cocky.  I get confident and comfortable and depend a little less on God and a lot more on me.  And then for some reason, I am surprised when things don't go as I plan.  Can you say "ding dong"?

I should know that after our eighth day in the hospital, my happy-go-lucky attitude begins to wane.  I am tired, I want to be in my own bed and ultimately I get frustrated with someone and then that frustration carries over into everything.  Yesterday was a perfect example.  Brad and Cole came up to the hospital and spent the afternoon with Spencer while I went home.  I had all these plans but instead, I ended up sleeping for almost three hours.  While I'm sure I needed the sleep, I was frustrated when I got back to the hospital because I hadn't been productive, which led me to get frustrated with the night respiratory therapist, and so on.  Just dumb.

I was still kind of cranky when I woke up this morning but that quickly changed to laughter when I realized that I had used hair gel instead of body lotion when I got out of the shower!  I hope the bottle doesn't lie and my body will now be "hydrated, sleek and shiny"!

My goal this week is to be a little less confident in my own abilities and a lot more trusting of God for exactly what I need.

So thankful for the beautiful weather and a trip outside today.

"The Lord will guide you always..."
~Isaiah 58:11

Saturday, January 25, 2014

Seven More Days at ACH

On Friday, we found out that Spencer will need to be in the hospital for another seven days.  What it boils down to is that he is on two very powerful and very expensive antibiotics; one inhaled through a nebulizer and one given via an IV.  Because of the cost, the insurance company will not pay for the meds if Spencer is not in-patient.  I will be the first to admit that I am not a super intellectual person but if I can figure out that keeping Spencer in the hospital is more expensive than sending him home and just paying for the meds, well then surely the insurance company must know that as well.  If I had to choose between talking with the insurance company and sticking a hot poker in my eye, I'm pretty sure the poker would win.

Spencer is feeling really good which makes the whole situation a lot more bearable.  His lungs are clear, he's not on supplemental oxygen and his strength is good since he has been working with PT.  They have even taken him off isolation which means he is free to roam the hospital and even go outside and get some fresh air, as long as he is wearing a mask.  Woohoo!

We are looking forward to a weekend of visitors, watching X Games and planning a Super Bowl party.  Thank you so much for all the prayers.

Miss Karen brought Spencer "Perfect Polly" which according to the box is the "world's perfect pet", although I would disagree.  The perfect pet is NOT a bird but Spencer has had fun torturing me with it.  Thanks Miss Karen and just remember what they say about paybacks. ;)

"The Lord is gracious and compassionate, slow to anger and rich in love."
~Psalm 145:8

Wednesday, January 22, 2014

More Time at ACH

I was so encouraged yesterday when Spencer's doctor said that his chest x-ray and labs had greatly improved.  In my mind, I could see the finish line and we were one step away from going home.  Well, the finish line just moved because today we found out that we will be staying in the hospital for at least another five days.

Spencer has pneumonia and pseudomonas, which are the two infections that he usually contracts when he is sick.  Both are becoming resistant to antibiotics that have been used in the past so Dr. Morris is trying three different and powerful drugs.  Unfortunately, these need to be monitored very closely with labs drawn each day so that is the reasoning behind keeping us in the hospital.  While I understand and agree, it sure would be nice to be in our own home.

For now, we will make the best of the situation.  Spencer hasn't said much tonight and I know he is not happy.  Cole and Brad are both feeling better and I am hopeful they will be able to come to the hospital tomorrow for a visit and that will lift Spencer's spirits.  Honestly, I think he is tired of seeing my face 24/7.

The boys keep me supplied with pictures of all the antics the animals are doing that they shouldn't be doing (like laying on the kitchen bar, laying on my bed, etc.).  So, I leave you with a picture of the cutest kitty in the world who is probably quite happy that I am not within kissing distance of his sweet face.

"Be joyful in hope, patient in affliction, faithful in prayer."
~Romans 12:12

Tuesday, January 21, 2014

Embarrassing Hospital Moments

Anyone that I know that has spent any significant amount of time in the hospital knows how difficult it can be to do normal day-to-day activities in an environment that is anything but normal.  Think about it; at any given time of day or night, you have strangers all up in your business!  When Spencer is admitted to ACH, he is always placed on the 5th floor in the Rehab unit.  While it is wonderful to know the entire staff when we are admitted, it also can be very embarrassing when you do stupid things that are remembered and discussed for years afterwards, such as:

1. Taking a shower and forgetting your clothes so you wrap a tiny hospital towel around a large sized booty and try to tip toe to your suitcase.  Half way back to the bathroom, the door opens and in walks the Pulmonologist with all the current Pulmonary Residents (15 of them).  Yep, as much as they may try to forget that sight it will be stuck in their minds for a while.

2.  While it is so nice to have a bathroom with a shower in our room, the showers are more of an indention in the sheet rock with water (think tiny).  While trying to figure out how to shave my legs in this tiny space, I fell out of the shower and pulled the emergency cord by accident.  Yes, that was a hard one to explain to the medical team that responded to the emergency signal.

3.  After washing/drying clothes in the laundry room, unbeknownst to me I left a trail of clothes in my wake as I walked back to our room.  I could feel the heat rising in my cheeks when the male nurse brought me one sock, a pair of underwear and my bra that he picked up in the hall way.

4.    When Spencer is admitted to the hospital and we are making our way passed the nurses desk to our room, they all look at me and say, "NO, we still have not put in a margarita machine!"  Hmmm, guess I must mention it quite frequently.

5.  Spencer has had some amazing Physical/Occupational Therapists over the years but one in particular, Frank, is a total hoot.  When he sees me in the hall he yells very loudly, "Hey Mom, DHS is on their way to talk to you about that incident last night with the wine."  Uh ok, the look on the faces of anyone within earshot is priceless.

6.  Prior to any surgery, the anesthesiologist comes and talks to us to go over the procedure and to see if we have any questions.  Once, Spencer had surgery scheduled for 6:00 a.m. so the anesthesiologist came in at 4:00 a.m.  Evidently, I was sleeping soundly and after calling my name twice, she reached over and tapped me on the leg to which I responded by jumping out of bed, tripping over the chair and screaming, "WHAT!!!!"  I don't know who was more scared, me or her!

7.  Remember the small bathroom we talked about in previous embarrassing moments?  Well, that same bathroom has a commode with no cover over the seat and it is where I have to get dressed each morning so guess what I have dropped in the toilet over the years:  countless bras, socks, my hairbrush, a shoe, shampoo, pajama bottoms, deodorant and my favorite hair clip.

8.   In the old days (like 1999), the chairs that converted to a bed were a little less than desirable.  One night, I somehow got folded into the middle of the bed like like a sandwich folded in half, and with the help of two nurses, I was finally able to escape!  I could still hear the laughing at the nurses' station two hours later.

And my favorite:

9.  I once went a full week without leaving the hospital and when I did finally leave, I could not for the life of me remember where I parked my car.  I spent 30 minutes walking around the front parking lot with my remote raised in the air, steadily clicking my open door/alarm button.  The security guard drove by and stopped to help and we continued cruising through all of the parking lots out front.  Finally, we drove around to the back of the building and found my car in the very back of the back lot (to this day I still don't remember parking it there) with the doors unlocked, the hatchback raised and the alarm going off.  Wow, that remote was really good!

I love this thought:  sometimes difficult things happen to us so that the glory and power of God can be revealed in and through us, so we might as well make the best of a bad situation and laugh.

"Faith is being sure of what we hope for and certain of what we do not see."
~Hebrews 11:1

Monday, January 20, 2014

The Good, The Bad & The Ugly

Today started really early when they came for Spencer at 7:30 a.m. to take him down to Radiology to place a PICC line.  A PICC takes the place of an IV and is inserted directly into the vein in his upper arm and threaded through to larger veins until it is close to his heart.  Since he no longer has a port, a PICC is a safer alternative to an IV which can become infected after being used for a long period of time, and it is perfect for administering IV antibiotics at home.

Spencer is feeling a little better but the doctor says his left lung is still not moving air in the lower left lobe.  A chest x-ray was taken this evening and we should have the results tomorrow.  Also, Spencer twisted his ankle last Tuesday when he was at AB's basketball game and it is still bruised and swollen so our Pulmonary doctor had his foot x-rayed at the same time as the chest x-ray.  Depending on the results of the x-rays, we should have a plan in place tomorrow as to when we will get to go home.

Brad called me this morning and said that Cole is sick and he needed to take him to the doctor.  The pediatrician's office was booked, the after hours clinic at ACH was booked and his symptoms are not bad enough to warrant a visit to the ER (thank goodness!), so he will go see our pediatrician tomorrow and hopefully get some relief.

And to top it off, Brad still sounds bad, Mom said that Gigi is sick and Uncle Bear is sick.  Gees, when it rains it pours.

I am praying for complete healing for everyone.  Thank you for all your prayers.

"O Lord my God, I called to you for help and you healed me."
~Psalm 30:2

Sunday, January 19, 2014

Happy Birthday, Spencer

On Thursday, January 18, 1996, I was big, pregnant and crazed! (I know, I know, not much different from today!).  Brad traveled with work and was usually gone four or five days of the week, we were living in a rent house while building a house and I just could not get settled.  That Thursday, I was determined to get every baby item washed, folded and put into the dresser even though the baby wasn't due for another four weeks.  All day I worked on getting everything organized and my bag packed.  When Brad arrived home from out of town, we drove over to look at the progress on the new house and despite his attempts to take me out to dinner, I just wanted to go home.  I ate four oranges and two grapefruits for dinner and went to bed early.  At 12:10 a.m., I got up to go to the bathroom and realized my water broke.  I still laugh when I think of how Brad reacted when I woke him up.  He jumped up like someone being shot out of a cannon and was ready to go within three minutes.  I, however, got in the shower, washed my hair, shaved my legs and put makeup on before we left.  The entire time I am getting ready, Brad is pacing the floor, talking to the doctor and pacing some more.

Once we arrived at the hospital, everything was a blur.  I was determined to have the baby naturally but an ultrasound showed Spencer was in the birth canal, booty first with his legs folded up over his shoulders.  The doctor knew he would need to deliver Spencer via a C-section and I think I cried all the way to the OR.  Thank goodness Brad was with me the whole time and 30 minutes later, we had a beautiful seven pound baby boy.

Today, Spencer has felt much better and despite being in the hospital, I think he has had a good day.  Tomorrow he will have a PIC line placed that will be used for IV antibiotics, and then hopefully we will be able to go home sometime this week.

We are so proud of the young man that Spencer has become and thankful that God has blessed him with an amazing determination and love for life.  I can't wait to see what the next 18 years will hold for him.

"Lord, you establish peace for us; all that we have accomplished you have done for us."
~Isaiah 26:12

Saturday, January 18, 2014

A Rough Day

I was really hoping to post a smiling picture of Spencer today but that didn't happen. 

Although he started out feeling pretty good first thing this morning, by noon he was really laboring to breathe and his fever spiked.  It has been a long time since I sat beside his bed and watched him breathe but that's what I did today.  

After 14+ years of chronic pulmonary sickness, Spencer's lungs have been tested to their limit.  Through countless cases of pneumonia, bronchitis, pulmonary effusions, collapsed lungs, chest tubes and at one point, a machine that kept him alive for 27 days when he was in a coma, Spencer's body, mind & spirit never give up even at their weakest moments.  As we always say, God must have HUGE plans for this young man.

Thankfully, by 5:00 pm, Spencer's fever came down and he was breathing much easier.  I love that million dollar smile he gives me when he feels good.

Tomorrow, we will celebrate his 18th birthday although it will be a subdued celebration.  There will be football and, of course the highlight of his day will be when I sing to him!  Ha!

Although it is not the celebration I envisioned, I am continually thankful that God has blessed with another year to celebrate Spencer's life.

"Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the one I praise."
~Jeremiah 17:14

Friday, January 17, 2014

Another Trip to the ER

Spencer started feeling bad Thursday morning and I just had a bad feeling.  Brad hasn't felt good all week and Cole has been coughing and congested so when Spencer told me he was congested, my brain jumped into overdrive.  We worked all day with meds and breathing treatments trying to get ahead of the sickness but Spencer woke me up at 3:30am this morning with severe body aches and a temperature of 103 so we headed straight to the ER.

I have said it before but it bears repeating...Arkansas Children's Hospital is the BEST!  When we walked through these doors 14 years ago, we had no idea what was in store for our family and how we would be impacted by such a caring and loving environment.   Today was no exception.  The ER team jumped into action and within an hour Spencer had an IV, a chest x-ray, bloodwork, Motrin for his fever and a tv with ESPN!

Given his symptoms, the doctors were concerned that he had the flu but the rapid test came back NEGATIVE!  But, before I do my happy dance I am waiting for the labs tomorrow and if they are negative, well then the nurses on 5D should look out!

We are in our pj's, watching tv and praying we have a good respiratory therapist tonight so I don't have to inflict bodily harm. 

Unfortunately, Spencer's 18th birthday is Sunday so I am hopeful he feels better and can have a couple of friends come up to watch the NFL playoffs and lift his spirits.

All day today I have been thinking and praying for the Upshaw's as they held Yolanda's funeral.  I heard that it was the most amazing service and a true testament to the impact this incredible family has had on so many people's lives.  

Thank you for all your thoughts and prayers.  We love you all.

"God is our refuge and strength, an ever-present help in trouble."
~Psalm 46:1

Thursday, January 16, 2014

Push Me/Pull Me Syndrome

When I was little, my mom used to read the Dr. Doolittle books to me and the good Doctor had a llama called "push me pull you" that had a head at both ends of its body. 
Mom used that phrase to encourage my brother and I to make good choices.

For some reason, I dreamed about this phrase the other night but in my dream, it was "push me pull me" which is my mind's way of acknowledging how I feel at this point in my life.

Life has a way of pulling us in so many different directions with an abundance of priorities.  Work schedule, husband's schedule, children's schedules, family, friends, church, outside commitments...the list is endless.

If I could split myself in half, in my mind my life would be easier.  One half would be in Arkansas, helping Brad with his business, working with Spencer on fine-tuning his college search and spending time with friends and family.  My other half would be in California helping Cole with his acting career and all that goes along with it, while spending time with friends.  Somehow, I think with this scenario I would double my problems instead of making life simpler.  :)

My desire to help everyone reach their goals has made us realize that the most important aspect of this adventure is that we work together; together for the same goal and together, as in the same house.  Although we have chosen this path willingly, two years is a long time for our family to be apart and our goal this spring is to decide which path our family will follow.  Will we pack up our belongings in California and come back to Arkansas to live and let Cole return to LA after graduation?  Or, will we pack up our house in Arkansas and move the family to California?  With each situation, difficult decisions and sacrifices will be made.  These decisions will not be made lightly or without much prayer.

I wish I knew the answer.  I am sure all will be revealed to us in God's time and so, we trust each day that we are doing His will.

If I had known adulthood and parenthood would be so stressful, would I have chosen instead to spend my life on the beach in Bora Bora and sell seashells for a living?
Hmmm, I'll get back to you on that!

"Faith is being sure of what we hope for and certain of what we do not see."
~Hebrews 11:1

Sunday, January 12, 2014

Happy 90th Birthday, Gigi!

We should all be so blessed to make it to 90 years old and live independently, be in great health, have a million friends and make God smile every day for His perfect creation.  I just described my grandma, Gigi, in a nutshell.

Gigi is so special and we all knew that we wanted to celebrate in a special way and what better way than having a surprise party.  But surprising Gigi is like trying to surprise a psychic; she always knows everything before anyone else.  But, I think we truly did surprise her!
Love that look!

Cole wanted to put 90 candles on the cake but instead of putting Gigi in danger, he settled for a nine and a zero instead!

Gigi had an even bigger surprise when her daughter and grand daughter from Texas drove in for the party, which meant all five of Gigi and Granddaddy's children were able to be with her.

After the surprise birthday party, we continued the celebration at our house with chili, tamales, pasta salad and whole lot of fun.
Love, love, love that Aunt Betty and Uncle Steve drove over from Collierville, TN for the party AND that they crashed at the Ewing Bed & Breakfast!  They made it the perfect weekend.

Cousin Zane with his precious daughter, Isabel.  Holy smokes, three year olds sure have a ton of energy.

Now everyone has gone home and this coming week is looming with lots of appointments but I am so thankful for the blessings this past weekend brought to our family.

"Give thanks in all circumstances, for this is God's will for you in Christ Jesus."
~1 Thessalonians 5:18

Friday, January 10, 2014

Purging Home & Heart

Since Cole and I arrived back in Little Rock on December 18th, I have been on a mission.  Given the fact that for the past two years, I am only home 2 1/2 to 3 months out of the year, my window to accomplish tasks is limited.  I knew before I even set foot on the Arkansas soil that I not only needed, but wanted to simplify.

Living in LA has taught me a lot but one thing that has been made very clear to me is that I can live happily in one bedroom and be happy with not a lot.  I don't need "stuff" to be happy.  I need my family and friends.  I brought that feeling home with me and have subsequently tackled one room a day.  For each item, I asked myself,  "Have I used it in the last year?  Do I love it?  Would I be heartbroken if I woke up tomorrow and didn't have it?"  If I answered no to all these questions, the item went into the "donate" pile.  To date, I have eleven 40-gallon bags and countless boxes of items that will hopefully be of use to someone else instead of collecting dust at my house.

And then it occurred to me last night; I'm not just purging my house but purging my heart as well.  That feeling of being free and out from under so much "stuff" is exhilarating.  And spending so much quiet time with God is powerful.  It has truly been an empowering month.

I have three rooms yet to be purged but instead of dreading the task, I am looking forward to accomplishing that feeling of contentment of a clean and orderly house and a thankful heart.  That will last approximately one minute until the dogs run through the house chasing the cat and the sound of Nerf machine gun fire can be heard upstairs, along with the buzzer on the dryer.  The house may not stay orderly but the contentment in my heart is priceless.

"Lord, you establish peace for us; all that we have accomplished you have done for us."
~Isaiah 26:12