A Nineteen Month Reprieve Ends... (PART II)

Friday 6/3 - It is the day after surgery and Rebekah continues her pattern of sleeping. Even though I haven't seen her awake for more than a few minutes in 5 days, I still am not too worried. Her blood pressure had come down and she looks more comfortable and peaceful than she has in a long time. But today is another challenge for us...

While in the OR, many attempts were made to get a central line into Rebekah. This is necessary for two reasons. 1) She has been without nourishment for over 5 days; and 2) The infectious disease doctor wants a central line for her UTI antibiotics. Both of these things cannot be done in a regular IV because Rebekah's veins are small and prone to 'blowing'. Dumping these things into her tissues can cause another set of problems. So we had an appointment with the PICC team to put in a PICC line. The 'Peripherally Inserted Central Catheter' would go up her arm, across her chest, and down into the vena cava artery that goes into the heart. This procedure is done under anesthesia using special ultrasound equipment, and this would be the second day in a row of anesthetizing Rebekah.  The PICC team was also nervous because a central line from the groin area is typically easier to get into place than a PICC line from the arm.

Well, the doctor performing the procedure is Dr. DeVane. He and his team got the PICC line in first try! I was ecstatic and told him, "You are DeMan for DeVeins!"  That made him smile. :-)  Everyone was thrilled for this victory, and Rebekah did awesome under sedation. They said that trached kids typically need bagged during the procedure, but all she needed was a little blow by oxygen while under and she came out of it like a champ!

Rebekah - right after the PICC line procedure, still asleep from the anesthesia.

Saturday 6/4 - First day post-op that Rebekah has finally started 'waking up' and showing us those beautiful eyes and a few fleeting smiles!  She started CPT (chest percussion therapy) three times a day, which is pretty standard post-op to help keep the lungs clear. She's in love with Respiratory Therapist, Josh, and he was the recipient of her first genuine sustained smile in over a week! We also finally started her TPN (Total Parenteral Nutrition) feeds. Regular IV provides the fluids and electrolytes you need to stay hydrated, but it does not provide your body with nutrition, which is the purpose of TPN. TPN puts directly into your blood stream dextrose, amino acids, sodium, potassium, magnesium, calcium, phosphorus, and lipids (fats). Of course, dumping this all directly into your blood stream also has its own set of risks as it taxes your liver and can cause blood clots. So it contains heparin to help with clotting and daily labs are drawn to tweak the TPN 'recipe' and watch for signs of liver toxicity and nutrient imbalances. The goal is to get her off the TPN as soon as possible, but the gut has to start working first. They expect it to be 4-7 days post-op for her system to be working again (inflamation clear and motility to be restored).

Saturday was also a great day for visitors! Rebekah got to see her brothers, her home nurse, and a special friend that is a doctor, but not one of her GHS doctors. :-) This is the first day in a week we've gotten her to interact.

Rebekah with her Nurse Becky

Rebekah with her special friend, Dr. Putnam

Mommy finally getting to hold Rebekah. I had been afraid to hold her since surgery because I didn't want to hurt her tummy.

Rebekah's brother, Isaiah, giving her a big kiss. Her brothers miss her a lot!

Sunday 6/5 - Sunday started with a more fussy baby. Her stomach output doubled from yesterday and I think she is finally starting to feel the pain. Our only options for pain have been tylenol and morphine. Obviously, we don't want to use a lot of morphine since it slows motility and only works for a few hours. We were not allowed to use any motrin products because of her UTI (and possible kidney infection). But thankfully, her urine has been clean for several days, so they finally gave us the OK to use toradol (an effective motrin product that comes in IV form). We can only use this for a short period due to liver toxicity, but it did the trick and seemed to get her over the pain hurdle!
Today we've had our usual bloodwork, and abdominal and chest x-rays. Chest is clear and ab x-rays still show barium just sitting in her system going nowhere. No poop or evidence of bowels 'waking up'. We are pretty much in 'wait' mode...

Monday 6/6 - More waiting... waiting for her bowel to wake up, waiting for her to poop, waiting for her incision to heal... Daily blood work leads to a little tweaking of TPN feeds. We did have a first very small bowel movement, but no real good bowel sounds, so that is the extent of today's excitement.  I put a call out to my friends to sit with Rebekah on Wednesday this week so I can spend a day with my parents. They have to leave on Saturday. I was overwhelmed by the response of volunteers!  Right now, we are in a good spot, and the calm before the storm...

Rebekah's tummy must be feeling better because she was pulling her legs up and kicking away!

Dear Lord, Thank you for making me feel better. Now please help me to poop today! Amen

CAMP GHS -
Here is my story to tell for this part of our 'Camp GHS' (Greenville Hospital System) stay -
The one thing that makes me very sad about being in the hospital is the fact that we are missing our one true summer family vacation that we had scheduled a year ago. It is to a place called Camp New Hope near Boone, NC. It is for children with life-threatening disorders and their families. We went last year and had so much fun! It is a great time of respite because they fully stock your kitchen for you and pretty much take care of everything. We have use of a Kubota to explore the 160+ acres of mountain trails, there are canoes, tubes and fishing poles for water fun, and all kinds of activities to keep us occupied. We really needed this respite time as a family.

One of the days Rebekah was still out of it, we had a nurse that was pretty hands off. She pretty much told me the the diapers and general needs were my job. I chatted with her a little bit and was explaining how we had to cancel our vacation to Camp New Hope. She asked me what Rebekah would even do there (that she couldn't do at home, I assumed). And she later asked my husband if she 'does anything'. I feel really sorry that she is a pediatric nurse and she doesn't have the compassion or understanding to take care of special kids without insulting their families. I guarantee that Rebekah can do plenty, and she steals the heart of all who meet her! But even if she DIDN'T, that is not really relevant to the care she should receive.

That coupled with my sadness at missing Camp New Hope had me really bummed. But I really started thinking about the timing of events and realized that God is watching out for us always! Had this all occurred when we were in the middle of the NC mountains, I probably would've tried to treat her longer at 'home' before taking her to an ER. And I am pretty sure there is not a children's hospital anywhere near the camp. So we probably would've ended up at a general hospital with no peds focus. If we managed to get to a children's hospital, it probably would have been out of state and with doctors who don't know anything about Rebekah other than "she has trisomy 18".  It really could've been a bad situation, and just the logistics of how we would manage the kids boggles me. But instead, we had a week where grandparents were able to come help us, she stayed local with doctors who already know how amazing she is, and our life wasn't thrown upside down by being out-of-state. Praise God for this stay at Camp GHS! It may not be where I want to be, but I know He has His hands on the situation.

Blessings and the Brave Little Soul

On this 'trisomy journey', I have learned so many things, and have been subjected to many viewpoints that differ from mine.  The most common argument used for why children like Rebekah should not be given a chance is that they will endure a lifetime of pain and suffering. Thus they are terminated or denied medical care after birth because prolonging their life would be irresponsible and cruel.

I think using 'pain and suffering' as an excuse to terminate pregnancies or deny medical care is just plain crazy.  While I do not deny that my daughter feels pain when she has to go through medical procedures, simply seeing her smile (even in the midst of an uncomfortable situation) speaks volumes about her own will and drive to live.  If I were to personally get cancer, or have a debilitating illness, I can guarantee that I would endure the 'pain and suffering' of treatment in order to be here for my family.  For most people, if their loved one requires intervention to live, we do what we can to provide it. If a 'chromosomally-normal' child were born, but had severe obstructive apnea or a life-threatening heart defect, it would be considered abuse not to seek treatment to correct the problem. Yet we sell the idea that treating trisomy 18/13 kids the same way is irresponsible.

People also use pain and suffering as an excuse to deny that there is a God, or that God is good.  I believe that God uses times of trials and suffering to make us lean on him. He gives us strength through our weakness, and it can mold us into better people - compassionate and loving and equipped to show Jesus to the world. There are so many verses in the Bible that speak about pain and suffering. Here are just a few that speak to me:

• “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 2:9)
• “This suffering is all part of the work God has given you. Christ, who suffered for you, is your example. Follow in his steps.” (1 Peter 2:21)
• “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” (John 9:3)
• “Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us.” (2 Corinthians 4:16-17 / The Message)

This song is an incredible reminder that Blessings can come in the pain and suffering of this world. It is followed by a story called "Brave Little Soul".  May they both bring your peace and comfort!
Susan

Laura Story - "Blessings" Lyrics

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops

What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops

What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home 

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Here is another perspective on why suffering happens:

Brave Little Soul
By John Alessi
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “...Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their hearts, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Love changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

 

A Nineteen Month Reprieve Ends... (PART I)

After going an amazing 19 months without a hospitalization, we finally broke our medical reprieve.  On May 30th, Rebekah started vomiting and was switched to Pedialyte to give her stomach a rest. On Memorial Day, she spent the day either sleeping or vomiting. She always tolerates pedialyte, so this was a different experience. I figured she had a virus. But after over 8 hours with no wet diapers, I called the pediatrician and they told us to head to the ER for IV fluids.

We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital.  They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal.  But it didn't go that way...

Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31.  It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended.  Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down. 



Michael kissing Rebekah during the Upper GI Study



An abdominal x-ray was ordered which showed a blockage in the smaller intestine. Because the doctors weren't sure if it was a complete blockage, they ordered an Upper GI Study to look at how things were digesting. To complicate matters, Rebekah had been on IV fluids since Monday evening, on IV Zofran for vomiting, and continued to vomit at least once every 3-4 hours. Her stomach was becoming more and more distended and the amount of bile backing up into the stomach was becoming significant.

Rebekah's distended tummy on Wed 6/1

For a period of about 12 hours, we attempted to administer multiple doses of barium to Rebekah for the upper GI x-ray series showing the progression of the barium through her tract. She kept vomiting the barium along with larger and larger amounts of bile. What little passed beyond the stomach was going no where. She was becoming more agitated and unconsolable. She absolutely did not want to be touched.

Rebekah's tummy on 6/2. The g-tube button was being pushed by so
much pressure that it was sticking out was past the stomach.

After the last xray at 7am Thu morning (6/2), her stomach was so bloated it was hard and her g-tube button was actually pushed up out of her skin. The pediatric surgeons decided that we were getting to a critical point and could not waste time trying different tests. We signed the paperwork, then I brought up a very sensitive issue with the surgeon.
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.

Dropping Rebekah off at the OR.
Michael had to be at home for Isaiah's Kindergarten graduation.
It's tough having to 'choose' between your children. :-(

So Rebekah was taken to 'emergency' surgery Thu morning around 9:30 am. We met with the surgeon around 12:30p for a post op consultation before seeing Rebekah. She did great during surgery and they found and fixed the problem!

Rebekah's tummy when we picked her up post-op. Looks so much better!
It will continue to shrink as she recovers from major abdominal surgery.

Rebekah once again becomes a medical anomaly and defies statistics by having a Meckel Diverticulum present in only 2% of the population.  This extra section and about 3 inches of surrounding intestine were removed along with several adhesions. They threw in an appendix removal for free! LOL.  And to make things even more interesting, her Meckel Diverticulum didn't act 'normally' by bleeding, but inflamed the intestines enough to wrap around it causing a major obstruction. We had MAYBE another day before this would most likely have turned into periotinitis and/or necrotized (dead) intestine and become a major life threatening problem.

Sweet Rebekah looking much better after surgery.
Her face is relaxed and her lips actually have color.

Her GI doctor can't wait to see if this totally changes her digestive system issues! This may have been the culprit behind a lot of her early digestive system problems.

I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah.  Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand. 

While that is a 'nice' story, I am telling it because there is a false assumption that trisomy kids are vegetables that are a burden to take care of and who will never know you. This is so far from the truth! Every trisomy 13 & 18 child I've met has a happy demeanor, a loving soul, and most definitely a recognition of their family. They are a special blessing, and sent to teach us about courage, hope, and unconditional love. I thank God so much for entrusting Rebekah to our family. It is where she belongs...