Feeding Raya

Yesterday, Dr. M (the on-call GI dr) said that if Raya's G tube output stayed below 200 and if she continued to gain weight today, he could be persuaded to send her home. She must really really like it here. Her G tube output was 218 and her weight dropped from 9.465 to 9.40, which is a loss of about 2oz. The "external digestion" we're doing with her now has also made her more likely to get diaper rash because of the increased acidity so we're slathering on the Aquaphor. It's good stuff. :)
The new thing we're adding to the regimen today is Erythromycin Ethyl Succinate (EES). It is an antibiotic that in low doses can increase gastric motility. In other words, it's supposed to make her stomach drain faster. She was on EES for about 6 weeks this summer and although it never decreased the frequency of her vomiting, it did decrease the amount that she was throwing up for part of the time she was taking it. This time around, the hope is that if we can encou…

Well, it looks like we're staying at the hospital for a couple more days. There's a new GI doctor on shift for the next 7 days and he's one that I've met before & really like so I'm glad he's here. Her G tube output yesterday was 270ml and they want it to stay around 200. Her belly has also been a little bit puffy today and she's thrown up yellow/green bile stuff a couple of times last night & today so she's just not quite ready to go home yet. I did put her turtle costume on her for a few minutes today and it was very cute but it would be cuter if she was able to crawl around on the floor. Or leave her room so everybody could tell her how cute she is. :)

I'm not sure how this will affect our prospect of going home today but Raya had to go back on IV fluids this morning. The GI doctor that's been here since Sunday had put in orders that if the amount of fluid drained from her stomach was more than 240cc, she would need to have IV fluids to replace it. Yesterday's total was about 270 so she'll be back on the IV for 8 hours today. When her favorite person from the IV team drew her blood this morning, she also took out IV #2 and put in IV #3 (in her hand this time) because #2 was starting to go bad & I'm pretty sure her ankle is probably stiff from the position it was taped in for 5 days. So thank you, Nicole, for fixing that. :)
She also threw up greenish-yellow stuff last night for the first time in 2 days. There's a different doctor on starting today so we'll see what he says about everything. At least I got to go home for a while yesterday to make the other kids' Halloween costumes so now I don't…

So I had a chat with the GI doctor this afternoon and he said that we'll draw labs again tomorrow to check Raya's electrolytes and as long as everything gets worked out with home health, we should be able to go home tomorrow. Tomorrow is also the day that the motility team at the hospital in Ohio will be evaluating Raya's case to decide if they think they can help her or not so that's what we're praying for tonight.

I was hoping that by now I would have been told that everything's peachy & we can go home tomorrow but the GI doctor hasn't been in to talk to me yet today. Somebody had a fun idea though. Instead of just draining all of Raya's gastric contents out of her stomach & into a diaper & throwing it all away, her nurse rigged up a contraption that allows us to drain her into a bottle. That way we can get a little more accurate measurement of how much is coming out and then we can also inject some of it back into her J tube to minimize what she loses. They said we only need to put back 15ml (1/2 oz) 4 times a day and the rest of it can be drained into a diaper instead of a bottle. It's totally gross and I'm pretty sure that anyone who sees the little bottle dangling from a tube hooked to her stomach will think it's pee. Now we just have to figure out how to conceal it and keep her from playing with it all the time. :)
Raya had a fun little surprise visit fro…

I haven't talked to the GI doctor yet today but the other doctor told me that the labs they drew at 4:00 this morning to check Raya's electrolyte levels came back normal so that's a VERY good thing. She's back to throwing up 4-5 times a day instead of 8-9 like part of the week so that's good, and when she does throw up it's mostly just saliva that she's swallowed. I wasn't excited about the prospect of her throwing up bile several times a day but I can definitely take home saliva vomit and dry heaving. I'm not holding my breath but we're definitely on the right track to being able to go home. Still don't know when but hopefully soon.

Okay, so this morning Raya's super-cute tech was doing her vitals and I SWEAR (and 2 nurses & a tech will agree) that Raya said, "Blood pressure!" while pointing to the blood pressure cuff on her leg. No joke, she totally said it. She is a smart girl.

She is definitely making progress. The last 2 days, when she throws up first thing in the morning it's just clear fluid coming out (i.e. whatever saliva she's swallowed) so that's a very VERY good thing. Up until yesterday, every time she threw up it was large amounts of bile in various colors and was quite disgusting. I can handle saliva & dry heaving, which there's still a lot of. This morning she only threw up twice which was a huge improvement from the rest of the time we've been here. Most of the other mornings she's thrown up 5 times before 9:00 and this weekend it was 4-5 times before 7:00 so today was pretty exciting for me.

She's starting on a new medication to try & increase…

Yesterday was kind of another blah day but so far today has been pretty good. Raya still has funky smelling stools (i.e. techincal term for poop. They don't say "poop" here.) because of the c. diff. but she's feeling pretty good & has resigned herself to the fact that she will be spending 99% of her time in her little monkey cage so she's doing a pretty good job of entertaining herself in there. I don't want to get what she got so I'm using gloves to change her diapers now and wiping everything down with an industrial-strength germicidal wipe afterwards AND scrubbing my hands with soap & water for the length of the Happy Birthday song after that. It may be neurotic and slightly overboard but it makes me feel better. I'm also using the wipes to scrub down things that the nice cleaning ladies don't scrub, like the lids of the hamper & garbage can which is where Raya's diapers go when they're waiting to be weighed, and the bathroo…

In an effort to keep Angry Mommy away, I shall recount a list of things that have made me smile and/or laugh today in no particular order:

1. Raya putting a bucket over her face & crying into it when she was getting labs drawn this morning. It was pitiful but funny.

2. When our male teenage roommate told me that when I slept through Raya vomiting once really early this morning, he pushed his nurse call button and told them to come check on her. I was impressed. He's a very sweet boy. :)


3. Hearing all the noise Kaida & 2 of her cousins were making this afternoon.

4. Getting the picture from Donnys mom of the big kids getting on the school bus with their friends.

5. When we were waiting for Raya to get an x-ray to make sure her J tube hadn't moved out of position, there was a lady in the hallway with her granddaughter who was waiting for an x-ray too. She started asking everybody else what they were here for. One girl said she hurt her hand & was getting it x-rayed, I ga…

We've had quite the day today. It started out pretty good. Donny got back from his trip and he & his mom brought the kids to the hospital to visit. It was nice to see all of them after a whole week and Raya was really happy to play with the big kids for a little while. Then Donny stayed at the hospital with Raya for a couple hours while I went home to take a shower & get some clean clothes. I was feeling great & feeling very refreshed & ready to come back & spend a couple more days here UNTIL
So when I got back, our nurse (the same one that ordered the c. diff test yesterday) told me that Raya was positive for c. diff. GREAT. I was and still am SO ANGRY that my child who was free of infectious disease & illness when we came here now has something that, from what I've read, is frequently contracted in hospitals, is difficult to get rid of, and can have recurrences. An illness that's difficult to get rid of that causes diarrhea is the LAST thing that …

Did I mention that Donny has been out of town since last Sunday? yeah. He's missed out on all the fun this week but he's back now (or at least he should be, I haven't talked to him yet) so SOMETIME today, I will be going home to shower without having to think about everybody else's cooties that are in the shower (let's just say that the parent bathrooms & shower are not the focus of the cleaning crew's elbow grease :) and I'll get to see the big kids for a little bit. Raya will be very excited to see all of them too. She's missed her daddy a lot. Every time I've put the phone up to her ear when I'm talking to him, she gets so excited and her face just lights up.
As far as the little missy goes, I'm pretty sure we're going to need to do some more adjustments with her feeding & draining. Things are better but not quite where they need to be. We're still waiting on the results of the c. diff test but we did get moved to another…

Long story short, we got a horrible roommate (very cute girl but she's on isolation, which I'm SOOOOOOO ticked about since my kid is healthy), I complained about the tech taking Isolation Girl's temperature without putting on a gown & gloves, I complained about having Isolation Girl in the room with my otherwise healthy child, the GI doctor came for a visit & after discussing the less-than-desirable results of what we've done so far has decided we'll be here until Tuesday or Wednesday (I'm ok w/that plan because it's what she needs), and I've spent the entire morning listening to Isolation Girl's obnoxious dad argue with the nurses, doctors, and social workers about taking her home. Apparently he's mad that they can't make her lab cultures grow faster and he wants to take her home to wait for the results instead of letting her stay here on IV fluids. I was all for them going home if it meant that I wouldn't have to listen to Isol…

Back in the day when I did track & cross country, a new personal record (PR) was a very exciting thing. Raya has set 2 new PRs that aren't exciting at all though. She PR'd in vomiting yesterday setting a new personal record of 9 vomits in 1 day. To make it worse, now that she's not being fed into her stomach anymore all that comes out is bile. It smells like a cross between a skunk and poop, so you can imagine how much I look forward to cleaning that up all the time when we go home. Can I please have the formula vomit back?? Her other PR is for the longest hospital stay. I could have lived without either of those. :)
And speaking of going home, in light of yesterday's PR and the fact that she's working really hard today to hit a new PR (she threw up 5 times by 9:00am), AND the fact that her weight has dropped from 9.17kg to 9.08kg (or for normal people, she lost about an ounce), I'll be REEEEEALLLY surprised if we get to go home today. Which will be awesome…

It appears that we'll be spending one more night here. We had a wonderful surprise visit from Raya's GI doctor, whom I love dearly, and we discussed everything that's happened this week. To put it briefly, the overnight feeds weren't tolerated as well as we had hoped and she's lost a little weight since we've been here. Even though we're feeding her directly into her intestine now, she's still vomiting. I'm regretting ever having complained about the formula vomit because empty stomach vomit is WAAAAAAYYYYYY more disgusting. The extension tube that was plugged into her G port overnight smells like a skunk. She's been throwing up either fluorescent greenish-yellow bile or dark grayish-green stuff that looks like pond scum when it's coming out of her mouth but then somehow manages to dry almost clear on her shirt. It smells horrible too. So yeah, not going to complain about formula puke EVER again.
Anyway, she also had a consultation with the…

As soon as the formula room sends Raya's formula up to the floor, they'll start transitioning her over. They said they were getting it ready an hour ago. Everything moves at the speed of molasses on a cold day in winter around here. :) Her GI doctor that she sees at the clinic will be up sometime today and make the call about when she can go home.

Happy Raya went away and I don't know where to find her. A crabby girl who's tired of her little cage hospital bed has taken her place. They're probably waiting for me to come back upstairs because I'm sure she's throwing fits again but she's driving me crazy and I needed a break! I feel sorry for the teenage girl that's our roommate but on the bright side, it should be good birth control for her. :)
Raya has had about 6 hours of Pedialyte in her J tube now and things look fine so far. We took her IV out a few minutes ago so unless she starts throwing up or needs labs, she won't have to get poked again. She's going to get about 24 hours of Pedialyte before transitioning her back to her formula. Her GI doctor will be on rounds tomorrow so we'll get to see her sometime and I'm crossing my fingers that Raya feels good enough to go home then. Being here does things to a person even if it is just a couple of days. I can only imagine what some of …

For the most part, Raya did pretty good overnight. She did have 3 diapers with blood in them and threw up a little bit of blood but that could have been because of the irritation to her G tube site when they put in the GJ. She's going on 44 hours with no food and is surprisingly happy anyway. She's supposed to have a consult from the geneticist about some of the labs she's had done that keep coming back abnormal but I don't know if they'll be able to fit that in while we're here or if we'll do it outpatient.
The plan for today is that sometime, the GI team will start her on clear liquids through her J tube (the part that's in her small intestine) and see how she tolerates it. If that goes well, they'll start her formula again & see how she does with that. As long as everything goes well, she'll either come home from the hospital today or tomorrow. Hopefully today because I only have 2 clean shirts left since she pooped all over me at 3:00 t…

The 2nd attempt at placing Raya's GJ tube was successful. Whew. If that hadn't worked out, they would have had to put in an NJ tube which would have been so not awesome. Hopefully now we can start feeding her & see how she tolerates the J feeds and go home tomorrow.

After a long evening of Raya crying for about 3 hours, wanting to go to bed but not wanting to lay down, not being able to stand up because of the IV in her foot that kinked every time she stood up, Raya FINALLY ended up going to sleep around 10:30 last night. We both had a terrible night's sleep with lots of interruptions but such is life at the hospital, right? Her last feed ended at 2pm yesterday afternoon and since then she's had no formula or anything but medications into her stomach. She's been on IV fluids to keep her hydrated but nothing else. She's surprisingly content anyway other than being bored out of her little mind and getting mad that I won't let her crawl around but I think it's just because she's used to her stomach not feeling good so a little hunger doesn't affect her much. She still threw up this morning after 17 hours of not being fed and their scales said that she'd gained 8 oz overnight even without being fed. I think they ne…

After a pretty intense weekend of vomiting and spitting up/throwing up more blood, Raya's doctor decided she needs to be admitted so her GI tract can have a little break. I'm not sure if that means they're doing IV nutrition or if they're just going to go ahead & do the GJ tube but we'll find out, I guess. So back to the land of plastic couches and cafeteria food we go. Hopefully we'll get a room without a randomly placed heating/cooling duct right where the couch should be and nobody will be doing construction work on the room next door all night.

And just in case you were wondering what regurgitated blood looks like:
(it's all the little black specks) Gross, I know.

At physical therapy last Thursday, Raya's PT tried something new with her. It's a taping technique called kinesio taping. The tape that's used is slightly stretchy, breathable, and water-resistant. It's designed to be able to wear for 3-5 days. If you want to read an article about kinesio tape that's full of big words and technical terms, click here.
It has many purposes but in Raya's case, kinesio taping facilitates the correct movements of muscles by inhibiting the muscles that are being overused and activating the ones that aren't being used as they should be. In her case, this will hopefully help her torticollis as well as her other muscular issues. This is what it looks like:


She had some on her upper & lower traps to try and balance out the movement and use of those muscles. She also had another big piece on her external obliques (i.e. stomach muscles) to give them a little break from being overused. She seemed to tolerate it well except for the r…

Welcome To Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've lande…

I called the scheduling department at Nationwide Children's Hospital yesterday and asked them if they had received Raya's referral. They said no. Really?? I told them our nurse faxed it on Monday. They couldn't find it in the computer system. Of course they can't. GO FIGURE. Since our nurse was out of the office yesterday, there really wasn't anything I could do so I just told the lady I'd call back next week.
After I got off the phone, I remembered that in a previous conversation with the scheduling department at NCH, I was told that there's a specific person in charge of scheduling out-of-town patients. I called back and asked if that was the case and if there was a possibility that person had gotten Raya's referral and it wasn't in the computer system yet. The person I talked to said that yes, there's a specific person I'd need to talk to but she was at lunch so she transferred me to her voice mail. I left a message, which I had hoped wou…

Had a convo w/the amazing Nurse R (aka GI dr's nurse) today. She's fabulous. She always pesters the doctors, home health company, insurance company, etc. on my behalf and reports back via email and/or voice mail since she has an uncanny talent for calling during the 2.5 minutes a day that my phone is not in my pocket. Here's our chat in a nutshell:
1. Dr. A (surgeon) says he saw no reason on the films why GJ tube couldn't be placed
2. Dr. A told Nurse R to refer us to the interventional radiology (IR) department at the other children's hospital in town
3. Referral was sent to Nationwide Children's in Ohio and I should call them to schedule instead of waiting for them to call me. :)

And yeah, that's pretty much it. I was happy though. Especially after I changed Raya's really smelly bedding for the 50 millionth time this evening so that I could put her in bed. Maybe MAYBE someday soon we will get a GJ in her after all and put a stop (at least temporarily)…

When Raya had her NG tube, I got really good at recognizing the distinctive whine-gag-cough-cry pattern that meant she had pulled the tube out of her nose. I hated hearing that. It meant that I'd have a puddle to clean up and then I'd get to hog tie and sit on her so I could put the tube back in her nose. Then we'd kiss & make up and she'd be on her merry way. I naively thought our days of tubes being pulled out were over when we got rid of the NG tube, or at least I hoped they were. BUUUUUUUUT no. Raya reminded me this evening that a G tube can also be pulled out when the right amount of force is applied by a crawling infant who is not wearing her backpack and it gets caught on the corner of the couch.
So I was sorting through a big fat stack of documents that need to be shredded and I heard her cry but it was more than the usual little whiny cry. It was more like "one of my older siblings tried to help me walk and then dropped me" or "Kaida's po…

Today is Raya's 11 month birthday and she decided to celebrate by taking a few little steps. :)





It's hard to believe this girl is 11 months old already!

Maybe it's because Donny went out of town for the weekend. Maybe it's because I feel like the process of getting us to Ohio is going in slow motion in spite of our WONDERFUL nurse & doctor. Maybe it's because there's more brown stuff coming out of Raya's stomach even though we've used almost the entire giant bottle of carafate. Maybe it's because I've googled things that have been mentioned about her last lab results and no good can ever come of googling things. Maybe it's just because it's sinking in more and more that some of her issues ARE going to be longer-term than others. Or I suppose it could be that I counted how many times that I've written down in my little Raya logbooks that she vomited since I started writing it down back in January. Give or take a couple, Raya has forcefully vomited 463 times in 8 1/2 months.
463 Can you even imagine? Whatever it is, I've had a harder time keeping my chin up today. Most days I'm so…

At our appointment with the neurologist on Tuesday, she mentioned that Raya had some sensory processing/sensory integration issues. I've heard that term before and have talked to a couple of parents whose kids have trouble in classroom settings because of "sensory issues" but I will admit that I had NO idea what else that term entails. One way to describe it is that for a person with sensory processing dysfunction, input that they receive through their senses is amplified or deamplified. (is that a word?) The brain misinterprets the signals that it's receiving from the body, such as light touch being painful or wearing soft cotton clothing but having it feel rough. For example, Raya wants to be held a lot, but doesn't like to be touched. I know that sounds contradictory, but when you pick her up, she pulls away from you and won't let you hold her close because the sensation she gets from being held close is uncomfortable for her. I've always taken that to…

Today was Raya's 6 month follow-up with her neurologist. I should just quit forming expectations about doctor visits because I'm usually wrong. :) I was expecting her to say that Raya looks great & we don't need to see her again, and half of that happened.
To start, Raya now weighs 9.3kg (20 lbs 8.2 oz) which is HUGE compared to our other kids. Developmentally she's doing great as well. She's alert and very interactive. She crawls faster than I can keep up with her at times and is standing independently for a few seconds at a time. She will be walking any day now, which will make her our first kid to walk before a year. Dr. A was thrilled with the progress she's made since April. BUT, there's a "but".

She still has increased muscle tone in her upper and lower extremities, she's hyper-reflexive (meaning her reflexes are very sensitive) and she has sensory processing issues such as wanting to be held but not held close, fear of and sensitivity…

I got a fortune cookie the other night that said, "You will discover new frontiers." Like many vague and generalized fortune cookies, my fortune is probably going to come true in the near future. The new frontier I'll be discovering is Ohio, Raya will be my travel companion, and Anteroduodenal Manometry will be our ticket there.
Big words, eh? According to the website of Nationwide Children's Hospital (i.e. our destination) anteroduodenal manometry is:
The antrum is the lower part of the stomach and the duodenum is the first part of the small intestine, which is connected to the stomach.  Antroduodenal manometry is used to study how the stomach and the first part of the small intestine are working. It can be used to measure both the strength and coordination of muscle contractions of the stomach and small intestine. To do this test, a small flexible tube (catheter) is passed through the nose, down the esophagus, through the stomach, and into the small intestine. The t…

I had a little chat with the nurse on Friday afternoon. I figured that there was probably still something going on even though they hadn't filled me in on it yet so I left her a message. I also needed to ask her how long we're supposed to continue with the ulcer medication. A couple hours later I called back & left her a new voice mail: "I'm calling to withdraw my question about the carafate, there's blood coming out of her G tube again/still. Call me." She called me back a few minutes later. :)
She said that the doctor doesn't see any good reason why the radiologist couldn't get the GJ tube in. She knew there was a possibility that she may get a GJ in the future when she & the surgeon placed the G tube, so I can't imagine that they would have put it in a location that would make a GJ impossible to put in. Hopefully we'll have answers and an action plan for that in the next week. We need NEED to do something different with this kid beca…

I'm trying to decide what she should be for Halloween. Any ideas?