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.

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...