Saturday, March 24, 2012

Post-hospital update

We were finally released from Seattle Children’s hospital on March 13 … 14 days after our admission, 16 days after our first visit to urgent care, 30 days after our first visit to the doctor regarding her “excessive spit up and acid reflux”. It all started from what seemed like a little cold. It reminds us of how the little things affect Jennah so much and how much harder she has to work to do the “normal” things we do, like recover from a cold. These kids are so special and fragile. We learned that a little 2 year old friend, whom we never had the chance to meet, but we anticipated the meeting since we would have back to back therapy times … he very sadly passed away from what seemed like a simple cold. Tragic, scary and so heart-breaking. You hear of people dying of “complications from a cold” … that could have been us.

It’s been 10 days back home and we are finally back into our normal routine, with the exception of returning to school, which we hope toDSCN3880 do on Monday. With Jennah’s increased number of health concerns, we need to reassess her school schedule. We did manage to escape the hospital with only a feeding pump … no IV or PICC … YAY!!!!! It was such a relief to hear that they had canceled the home PICC care teaching appointment before our discharge. Instead, I only had to learn how to use our new fancy continuous feeding pump. The PICC line was literally ripped out from her arm (picture above). It took her a good 10 seconds before she realized what had happened and started feeling the burn and proceeded to screaming.

We’re up to 70 ml/hr on her feeding pump now. She used to be able to breastfeed and take a bottle. DSCN3885She used to take 180 ml boluses in 15 minutes. Now we’re on a feeding pump for 18 hours a day. Not a good trend. But it could be a lot worse and it’s not terribly inconvenient aside from trying not to trip on her tubing when we carry her around or go out. More gear to carry around, but it’s all manageable. She’s getting all the nutrients and fluids she needs. Most importantly, she is happy and very comfortable.

Of course, we’ve added a couple more medications to her regimen and we’ve had to reassess and recalibrate her seizure meds. We’ll be doing more frequent blood draws to make sure her meds are at a therapeutic level and that her liver is not completely shredded.

I want to say THANK YOU to everybody for their messages of encouragement and prayers. I am especially thankful to those who came to the hospital to visit: mom, Mark, Hubby, A & B, Cassie, Kaye, JennLe, SChai, AArayas, P’Bird, P’Au, Kristi, Kali, Yujin, SK, JamesSu, Trish, Natalie, Thomas, and Holly. I really hope I didn’t miss anyone! And a special thank you to the nurses, doctors, and staff of the Rehab unit … here’s the card we made them:hospital thx

It all started from a simple cold. As I type, Jennah is sniffling and snorting from yet another cold that she just caught a couple days ago. Colds and little bugs are a lot scarier now. And yes, she has had massive spit-ups (I don’t want to call them vomits just yet). DSCN3881We can only hope and pray that it doesn’t send her back into the cyclical retching pattern … just hope that her brain knows how to control those smooth muscles. It’s the little things. In the meantime, we’re just happy to be home, watching TV.

Friday, March 9, 2012

Day 11 - The most depressing place on earth …

We need to get out of this place. It’s nasty. There are germs and microbes that I don’t even want to think about. The kid down the hall with MRSA went home this morning … although I’m assuming she no longer has MRSA.

Then there’s the cancer unit. The world-renowned Seattle Cancer Care Alliance, Mary M. Gates Cancer Unit. Huge signs on the entry doors read, “STOP! Do not enter if you have cold or flu symptoms … etc, etc”. It sits right in front of the Train elevators, which I use multiple times a day. More often than not, a cancer patient wheels or walks out of the unit. Most are bald, which means chemo. Some have hair, which probably means radiation. The ones who are swollen up beyond recognition may have lymphoma. Many have NG tubes up their noses. Some are too frail to walk. Others are in street clothes, excited to leave and perhaps in remission. They range from toddlers to teenagers. It’s heartbreaking. It makes me think of the hell my parents had to go through when my brother had cancer. He was bald, frail, and had an NG tube. He walked in and out of the hospital until one day, we all walked out of the hospital without him because he died. I hate the cancer unit and I wish I didn’t have to walk by and be reminded every day.

There are some really, really sick kids here. Jennah is hardly sick in comparison. Code blues are called on a daily basis. And those don’t include the codes that are called within the ICU or cancer unit. I count our blessings that Jennah is doing as well as she is. We are also thankful that Jennah is not cognitive and totally clueless as to what is going on. Many of the kids here are terrified and confused. When we were in the surgery prep area yesterday for J’s PICC procedure, there was a young man, maybe 11 years old, who looked very brave and very tough, but very sad. I had seen him come out of the cancer unit a couple hours earlier when I was running out to the cafeteria. I heard the nurse tell another to take his parents out to get a pager because the boy needed a moment. Sure enough, as the parents left, the nurse (a manly male nurse, btw) took his hand and said, “you can cry now.” And so he did. I had to pull the curtains before I totally lost it myself. I just felt so sad for that boy.

It’s frustrating that we’re still here. After all, Jennah is far from being as sick as these other children. We’re just taking up a whole private room. But no, they won’t let us leave. And a care coordinator just signed me up for TPN teaching for Tuesday. WTF??? I thought we were going to get out this weekend …

Plan for today:

  1. start Pedialyte and try to tolerate 35 ml/hr without retching.

Thursday, March 8, 2012

Day 10 - How much longer?

Yesterday’s tests, an endoscopy, sigmoid colonoscopy, and an MRI, return all negative results. This is great! Or is it? So we still did not have a clear answer or diagnosis to her vomiting. Nonetheless, passing these tests allow us to start a medication, cyproheptadine, which essentially puts a hard-stop to the vomiting at a neurological level.

So last night, for the first night in nearly 3 weeks, we were vomit-free, retch-free. While we are all absolutely ecstatic that she has some relief, it’s not completely satisfying since we don’t have a good diagnosis. There is a disorder, cyclic vomiting syndrome, which is a type of migraine that presents with Jennah’s symptoms, but the criteria for diagnosis do not precisely match. The doctors also seem to be stumped, although the GI doctor still has some options he wants to consider. I ran into Jennah’s hospitalist (her primary inpatient dr.) in the elevator as we were on our way to get the PICC. I was very excited to tell her that she didn’t vomit last night and said, “maybe we’ll be out by the weekend!” She gave me the weirdest response, which I’m pretty sure meant, “don’t bet on it.” Boo.

Not sure what the plan is with this medication, but we want to get her to start eating again. That’s our ticket out of here at this point. It’s going to take days to ramp her back up to her 32 oz/day feedings. I imaginePICC they’d let us go if she starts getting comfortable with about half that amount. Maybe. As I type this, Jennah is under general anesthesia getting a Peripherally Inserted Central Catheter (PICC) for her fluids, nutrition, and any meds offered in an IV form. It’s inserted just above the elbow and leads through the subclavian stopping just before the heart. It will be a relief to no longer have IVs. She’s had 4 IVs in the past 10 days (not counting the one at urgent care 2 days before our stay here!) and her veins are bruised and swollen from the large molecules of the parenteral nutrition solution.

Plans for today:

  1. get a PICC
  2. wash hair, sponge bath – haven’t been able to do this for the past 10 days due to the constant retching and puking!!
  3. start taking small amounts of Pedialyte through the g-tube.

Tuesday, March 6, 2012

Day 8 – no more poop

We can all stop praying for poop now, because the fluoroscopy imaging yesterday showed that her bowels are free and clear. It also shows that her lower digestive system, from her g-tube/stomach down to the caecum, all functions correctly. So that’s good news … right? DSCN3855

Parenteral Nutrients (PN) + Lipids (white bag)

Of course, the fluoroscopy test required 50 ml (< 2 oz) of barium to be pumped into her stomach. It’s like a single gulp. She used to take 180 ml of formula in 15 minuteDSCN3865s with no problem. So a couple hours after the test, the cramping, screaming, retching and vomiting commenced and continued for a good 3 hours. That sucked. She also managed to rip out her IV during one of the retching fits, so we moved her IV once again. This time it’s in her left foot. We have 1 limb (the right foot) left that hasn’t been poked. She was worn out for the rest of the night and slept through our family’s visit.

GI doctor came in for a consult. He ran through all the ideas he had … very honest and open, which I really appreciate. Some of his theories would probably freak the crap out of other parents, so I wonder if he’s this open with everyone. In considering metabolic or genetic disorders, he asked if hubby looked like me … Asian, tall and skinny. I laughed really loud and probably startled him. Then without thinking I said, “he actually looks like you except more thick and square and Palestinian.” So he brightened up and said, “well, I’m Palestinian, too!” Ironic … and a relief I didn’t offend the guy!

His game plan was to try a slow drip of Pedialyte of 10 ml (2 tsp.) over an hour to see how she tolerates it. If she still vomits, then he wants to do an endoscopy survey tomorrow. Well, she stayedDSCN3862 up til 3 AM this morning retching and vomiting. So we’re on for the endoscopy tomorrow as well as scan of her brain to see if anything weird is going on up there given her existing encephalopathy (brain injury, seizures, etc).

Plan for today:

  1. Turn off the pedialyte – nothing by g-tube except Lamictal (since it doesn’t come in IV form Sad smile )
  2. Schedule PICC, MRI (if compatible with her titanium hips) or CT Scan, endoscopy + sigmoid colonoscopy
  3. Wash her hair!! nasty, vomit-infused hair …

Monday, March 5, 2012

J’s vomit/bowel hospital stay - Day 7

Today we begin day 7 at Seattle Children’s Hospital. Jennah continues to retch and vomit when anything over 20 ml is administered through her g-tube. There were a few hours where we were dripping as much as 60 ml/hr (2 oz/hr) of the laxative in her without vomit, but that streak met a wet, messy, violent end.

An x-ray yesterday shows evidence of fecal impaction, but it hasn’t been confirmed by the GI team. Enemas have been ineffective. Oral/g-tube laxatives haven’t stayed in long enough to be effective.

We also started Jennah on IV parenteral nutrition (PN) since she has been without formula for nearly 2 weeks. This solution is custom formulated each morning based on blood draws. Unfortunately, the IV can only be used for maximum of 3 days before we risk vein damage and/or infection because IV veins are small, whereas the nutrients administered contain large molecules (i.e dextrose) and amino acids. Since we don’t anticipate that she will be able to consume any reasonable amount of nutrition through her g-tube any time soon, we will have to move on to a peripherally inserted central cathether (PICC), which essentially goes into a much bigger vein and leads directly to the heart. So that sucks since it’s obviously more invasive and therefore, more risk involved.

So here’s the plan for today:

  1. perform a dye study – shoot a barium dye through the g-tube to confirm function of her gastro/digestive system, placement of g-tube, anatomical structure, and rule out further obstructions.
  2. insert a PICC – requires a sterile field and mild sedation.
  3. insert a new IV – J just pulled her old one out during a retching episode seconds ago … nice.
  4. meds – normal anti-seizure meds (Lamatrogine, Phenobarbital), Famotidine (Pepcid – acid reflux), and Zofran (anti-nausea)
  5. try giving some Pedialyte through the g-tube, just to see what happens.
  6. consult with GI team

Friday, March 2, 2012

Life’s a beach … and then some.

Exactly 7 days ago, we were on the beach charging guacamole and virgin pina coladas to room 118 at the Westin Resort in Puerto Vallarta, Mexico. Today, it’s day #4 in room 3139 at Seattle Children’s hospital in the Train zone. I’ve been running upstairs to the cafeteria each morning for my breakfast, poppy seed bagel w/ cream cheese and a Starbuck’s drip coffee for $2.53 … no room charging privileges here.pvr


We were here …




and now we’re here.




It all started with a seemingly harmless cold. Probably a virus picked up from preschool, her siblings, or her nurse uncle. She had the sniffles for a couple of days and a little cough as she always gets at the end of a cold to clear out her lungs. So she spit up A LOT. She spit up all over grandma’s rug and sofa on Super Bowl Sunday. With increase spit-up, you can get an increase in stomach acid to help digest the mucous build-up. On Feb 13, 7 days before our scheduled trip to Mexico, I took her in for an ear and lung check. We also got Zantac prescribed in hopes of alleviating the acid reflux issues. Unfortunately, the Zantac may have made things worse by causing her additional nausea.

February 20 was our departure date for our first ever family vacation since Jennah was born. She had been spitting up for a number of days now, which meant most of her anti-seizure meds were coming up as well. So on the second leg en route to Puerto Vallarta, Jennah had a seizure on the plane. I got to use the airplane-issued barf bags for its intended use for the first time.

The first night in Mexico was a disaster. Jennah proceeded to vomit with every feeding. It was a mess and DSCN3807we ran low on her burp clothes and laundry. I was hand-washing clothes in the sink continuously and our room smelled of sour milk. We had taken 20 cans of formula for the 4-day trip since she is supposed to take 3.5 cans a day and I wanted to be prepared with extra in case we were stranded somewhere. We used 5 cans of the formula and not one of them was completely empty when I threw it out. She took in literally less than 20 ounces of formula over the 4 day period. I tried to give her a few ounces of water as often as was reasonable, but most of that came out as well. Although Jennah’s siblings had a well-deserved, wonderful time in Mexico, I couldn’t wait to head back home.

We arrived home late Friday night and I put a call into her pediatrician’s office the next morning. Perhaps I down-played the situation too well because they suggested that we could wait until Monday to visit her regular Dr. during normal office hours. So we agreed and tried our best to get some fluids into her. She had another tonic seizure that night and was looking very weak and frail the next morning after vomiting out her morning meds and feed. So we decided to take her into the Seattle Children’s urgent care clinic in Bellevue, despite the fact that I was supposed to play in a Sammamish Symphony concert that day. At 2 PM, precisely the same time as the concert downbeat, Jennah was put on IV fluids. After a dose of anti-nausea meds (Zofran), and a bolus of IV fluids, we were released. We got her to hold down a solid 2 ounces of formula. 4 hours later, it all came back up.

On Monday, we went for a follow-up with her regular pediatrician. We tried to push more fluids into her g-tube and got more Zofran. She still vomited relentlessly.

On Tuesday, her pediatrician told us to go to the ER at Seattle Children’s. This time, they decided to admit her since it’s been over a week of persistent vomiting and she was thoroughly dehydrated with no wet diapers in over 6 hours.

The unofficial diagnosis is that Jennah is full of sh!t. She’s severely backed up and the dehydration just exacerbated the whole thing. It’s a common problem among children with cerebral palsy and we do have to regulate her with daily doses of Miralax, but this was apparently not enough. So we’re working on a total bowel cleanse and then we’ll try to work up her feeds until she’s back up to normal intake levels. The problem is she keeps vomiting up the NuLytely solution that is supposed to clean her out and now they’re worried about malnourishment, so we’ll probably start IV/TPN feeds today … joy. This is obviously taking days to accomplish … we anticipate staying throughout the weekend.

So there you have it … I can’t recall a year since 2007 that we haven’t had a stay in the hospital.