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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Sunday, October 31, 2010

Revisiting EES

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 encourage more of the stomach acid to move through her digestive tract, we will be draining less of it from her G tube and there wouldn't be as much concern about her getting dehydrated or being able to maintain her weight gain.
So she's not going home yet but on the bright side, now I'll get to watch the 1 hour Sister Wives special with Natalie Morales tonight and I can keep enjoying the delicious $1.30 waffles from the cafeteria. As a sidenote, I don't think I'll ever get used to seeing people eat refried beans for breakfast.

Friday, October 29, 2010

Staying put

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. :)

Back on the IV fluids

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 have to worry about that. :)

Thursday, October 28, 2010

Crossing fingers...

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.

Drainage

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 from Daddy at lunchtime today. She was VERY excited to see him and VERY upset when he put her back in her bed so he could leave.

Striking a Balance

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.

Wednesday, October 27, 2010

She said her 2nd word

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 her motility and hopefully decrease the dry heaving and hopefully we'll see better results from this one than the others we've tried. She'll be having an upper GI sometime in the next hour to see if for some reason her J tube is obstructing her stomach from emptying. If it is, that's a problem and they'll have to take her back to IR (interventional radiology) and have them try to reposition it. I'm crossing my fingers that we don't have to do that because it was difficult enough to get it in the first time.
Her weight was down to 9.095kg today which is about 20 lbs 1 oz, so pretty much she's lost about half a pound since she's been here. That's not good but I don't know how or if that will impact us being able to leave. Tomorrow they'll check her electrolyte levels to see if we're doing sufficient replacement for what she loses when we drain her stomach and then it will just be a matter of how long they want to monitor her to make sure we're on the right track.

Tuesday, October 26, 2010

Things are kind of looking up

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 bathroom door handle & faucet handles in the bathroom.
I FINALLY got a hold of the lady at the hospital in Ohio. It was kind of a disappointment because she told me that Raya's case will be presented to the motility team on Friday and they'll decide IF they'll be doing testing on her and if so, what tests they'll do, and they'll triage her case to see if it's urgent or not. I was under the impression that it was a matter of WHEN, not IF so that didn't make me very happy. She also said that I'd be contacted immediately if they decide not to do testing but that if they ARE going to do testing, the case will be turned over to a nurse for scheduling & she'll call me in a couple of months to schedule and that they're currently scheduling 4-6 MONTHS out. That's a LONG time, especially when this stuff has been going on for SO. Stinkin' LONG already. I told her that if it would help, she could let the motility team know that Raya has been in the hospital for 9 days now and that the GJ tube has not helped like we had hoped it would and the vomiting has actually increased in frequency since she got it. She said she'd put a note on the chart. So now we are praying for the team to feel as urgent about Raya's case as we do because I don't know if I can handle 6 more months of this, especially since she is not as stable as we thought she was. Ugh. BUT the good news is that I did finally get a hold of the lady and they are going to review her case.
She is down a little bit on her weight today (like maybe an oz) but I'm pretty sure it's because they didn't weigh her until about 3 hours after they normally do so she had shed some bodily fluids by then. :) She's been much more patient & friendly with the nurses & techs the last couple of days & I think she's learning to differentiate between harmless things like getting her tummy listened to & getting her blood pressure taken and getting blood drawn & IVs started. That will be a very good thing if she can learn that!

Monday, October 25, 2010

Things that have made me smile today

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 gave her a VEEERRRRY condensed version of Raya's issues, and then she asked the teenage girl behind me, "What happened to you?" The girl's answer was a very matter-of-fact, "A fight." I had to stifle laughter. Fighting totally isn't funny but that was. :)

6. Telling the tech that took Raya's temperature that she was supposed to wipe down the thermometer before & after she did Raya's temperature with it. (that smile was kind of a vindictive one and I kept it on the inside)

7. Chatting with the ladies (yes, it took 2 of them) who took Raya's blood for her labs. They were funny.

8. Skyping with my grandparents & everybody else at my sister's house.

9. The awesome basket of junk food, gossip magazines, pajama pants, and cute toy for Raya that my awesome friends dropped off while I was napping (sorry I missed you Tarah!).

10. The giant tub of antibacterial wipes and box of gloves they gave me after I complained discussed my concerns with the charge nurse today so that i can clean things to my satisfaction.

11. The irony of the junk email I got today that said "Have a local maid service clean up after you" because that's pretty much how it works here. :)
This was from a couple days ago. She was yelling just for fun which is usually funny for the first 5-10 seconds. After that it just hurts my head. :)

Sunday, October 24, 2010

Angry Mommy went away briefly but then she came back

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 my gastroenterologically-challenged baby needs!! We've worked SO HARD to get her to gain weight and maintain a somewhat healthy body and we've done a pretty dang good job of it considering what we've been up against, and now thanks to an illness that was most likely contracted during this hospital stay, that is now being compromised. All we came here for was to give her IV fluids so that we could safely stop feeding her for 24 hours (which turned into 46 because nobody started pedialyte when they were supposed to) to give her stomach a break and so that she could get a GJ tube, which has turned out to not be the band-aid solution that I had hoped it would be since she's still throwing up anyway. Tomorrow I will be researching protocols for putting certain patients in rooms together and asking some Angry Mommy questions.

I know that things usually seem worse late at night when I get tired but tonight I am very angry and frustrated and I feel like somebody just turned off the light that was at the end of this tunnel. With the c. diff, there's no telling when she'll get to go home because that's going to (at least I'm anticipating that it will) make it more difficult to balance the input-output of her fluids, especially since the amount of draining we're doing with her right now hasn't been quite enough to keep her from vomiting. Right now, I just want to take her home & take care of her myself because I'm starting to feel like too many cooks are spoiling the broth. I guess we'll see what tomorrow brings.

Did I mention...

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 room. We couldn't get out of that room fast enough! Since Raya was non-contact because the results of her test were pending, they told me that they had to put her in with another non-contact patient (OH, you mean like how they put a non-contact patient in with my HEALTHY child?!?) so we shared a room with a teenage boy last night. Awkward, I know. He's leaving today though and hopefully Raya's test results will come back negative and Infectious Disease Control will be kind enough to take her off isolation so she can leave her room. That would be fabulous. :)

Saturday, October 23, 2010

What the heck, we're already here so let's just stay until Tuesday

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 Isolation Girl's mommy suck snot down her throat all day & night or her dad argue in broken English about what she does & doesn't have. And my baby smells like a skunk now because we're draining the fluid out of her stomach every 3 hours so she won't throw it up. I'd rather have her smell like formula puke. And her well-intentioned nurse is running a test for c. diff (an infection that causes diarrhea & is most common after antibiotics, which Raya hasn't had) because her poopy diaper smelled funny today so she's on isolation until the test results come back, which means she has no way of getting away from Isolation Girl and her family. I asked to either have her moved or have Raya moved because the last thing my vomiting child needs is to get an actual virus that would make her vomit more.
For everybody who has told me what a great positive attitude I have about everything, I just wanted you to see that I'm human too and today I'm angry and I do not have a great attitude. :)

A new personal record

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 since our new roommate is on isolation for fevers, vomiting & diarrhea of unknown cause AND either she or her mom keeps doing that thing where they suck snot down their throat really loud and I want to gag every time I hear it. I may actually go crazy.
Oh, and to top it off, when I asked the nurse why they had put a non-contact patient in with my healthy baby, they said it was a bed availability issue and not to worry because they're both in diapers so there's very little chance of transfer. Um, HELLO! We're in the same friggin' hospital room and we use the same garbage can & linen hamper and touch the same door handles! Oh, but the real kicker is that 5 minutes after I asked about that, she came back in all suited up with the gloves & gown they use for isolation patients and said that because of the strange smell of Raya's last poopy diaper, they had decided to test her for c. diff so now she's on isolation too until the lab result comes back. AAAAHHHHHHH. I think they're trying to kill me.

Friday, October 22, 2010

One more night

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 geneticist last night about the possibility of mitochondrial disease, which we're all pretty sure she doesn't have since she doesn't really match any of the symptoms. He ordered a couple of blood tests but said that he doesn't expect them to come back positive and most likely won't need to see her again. He was a lovely man but I'm glad that we won't be spending time together regularly. :)
One good thing is that the bleeding in her stomach seems to have stopped. She's going to go off of the med she's been on for that & hopefully won't have a recurrence because I'm ready to be done with that stuff. It was the main cause of my sleep deprivation for the past month. The new cause of my sleep deprivation once we go home will be her 6 doses of water per day. I know, it sounds funny that she's been prescribed water but she's going to be switching to a higher-calorie version of her current formula and will be fed at a much slower rate so she'll need more fluids than just what she'll get from the formula. 'Twill be interesting. :)
So anyway, we're hoping that the new formula/feeding schedule will go better and she'll be able to gain a little weight by tomorrow and then we can go home. That would be fabulous.

Thursday, October 21, 2010

The switcheroo

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.

Wednesday, October 20, 2010

6 hours down, 18 to go

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 these poor parents go through when their kids are here for weeks and months at a time. The bad news is that since we're staying another night, I will need to take a shower in the yucky parents' shower. Fun. Good thing I brought flip flops.

Today's agenda

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 this morning. And apparently the polka dot Halloween tshirt with the kitties on it and the puffy sleeves still isn't feminine looking enough because one of the techs walked past her bed and said, "Hi handsome!" Seriously, people, do I need to post a sign or tattoo GIRL on her forehead??

Tuesday, October 19, 2010

Yay for Interventional Radiology!

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.

GJ Tube: Take 2

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 need to calibrate. :)
So the plan for today is to take her back into Interventional Radiology (IR) around 3:00 this afternoon and try once again to put in the GJ tube. If they're successful, we might get to go home today but I'm not holding my breath because we've heard that line many times before 2 days into our 5 day hospital stays. :) Hopefully they'll be able to get it in this time!

Monday, October 18, 2010

More gross stuff=back to the hospital we go

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.

Kinesio Taping

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 removal. That wasn't pleasant even though I followed the instructions & soaked it with oil for several minutes before carefully peeling it off. She had it on for 4 days and her skin tolerated it well, so I think we'll try it again this week.

Sunday, October 17, 2010

Welcome to Holland...

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 landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

**I got this little story from the blog of a mom who has adopted 2 children with significant medical challenges and I think it could be applied to many situations where life has taken a disappointing unexpected turn. It's way too dramatic to describe our situation exactly but the point of the story rings true. No matter where you are and what situation you find yourself in, there are always beautiful positive things to be found.

Saturday, October 16, 2010

Can somebody just call me back please??

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 would be returned yesterday but she didn't call me back. Again, go figure. That's getting frustrating because I've called SO many people about different things with Raya this week and have had very little luck getting anyone to call me back. Nothing ever goes smoothly and as planned with this child! :)
She did have a very good PT session on Thursday and a very good session with her Anat Baniel Method (ABM) therapist on Friday though. Raya is learning to ignore what they're doing to her and just play while the therapists work on her and they're learning to recognize her limits and work past them without making her throw up. It sounds dramatic, I know, but I consider it a success when we make it out of ANY appointment without Raya throwing up. :)
When we first got to her ABM therapy appointment yesterday I thought we were in for a rough time because she threw up in the car 4 miles in to our 60 mile drive and then as soon as we got into the lady's office and I was trying to take off her wet clothes she started throwing up again. We kind of just had to sit & wait for 5 minutes until she had completely emptied her stomach and finished dry heaving but then she was pretty happy after that. She stands on her toes a lot, which is typical of CP and/or sensory processing dysfunction (SPD). Since Raya wanted to stand up and play with the little Leap Frog table instead of sitting on the therapy table, her therapist focused on her ankles and pelvis for this session. By the time her hour was over, her therapist had gotten her to start rotating at the ankle which allowed for better rotation at the waist and allowed her to stand flat-footed and step without planting her toes first. It's pretty cool when you can see instant results like that because it doesn't always happen that way. I've also realized that another benefit of seeing the ABM therapist is that it seems to help Raya to realize that therapy can be enjoyable and she doesn't have to be freaked out by everyone who touches her. Even if that was the only result we ever saw out of it, it would be worth it because she's been pretty traumatized by everything she's been subjected to and there's a lot more ahead of her.

Thursday, October 14, 2010

In a nutshell

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) to the vomiting until we can figure out what's really behind it. :)

Tuesday, October 12, 2010

Another yucky "first"

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 poking my eyeballs out again" crying so I went to see what happened. Ashtyn was holding something in her hand and muttered something about they were playing and weren't watching her and she pulled the tube out of her stomach. Fabulous.
If I hadn't been concerned about A. keeping as much of her formula in her stomach as possible and B. putting it back in before the hole started to close, I would have taken the time to take a picture. I didn't want to screw anything up though so I pretty much just hurried up & did it. It worked out good anyway because I had been meaning to give Donny the "what to do if Raya's tube gets ripped out while I'm gone" tutorial so I gave it to him while he held her down. Hook syringe to water port, suck water out of balloon with syringe, put tube back in hole, reinflate balloon with syringe, put new gauze around it. The end.
It really wasn't as dramatic as I had thought it would be. It's kind of like after you get a new car and you're paranoid about getting that first dent in it. Then after you get a dent in it you can relax because you've been there & done that & don't have to worry about experiencing that unpleasant "first" again.

Sunday, October 10, 2010

Aaaaaaaaaaaand we're WALKIN'...we're walkin'

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

Getting a little pep talk from Coach Mommy :)




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

Friday, October 8, 2010

Ugh, another one of those downer days

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 caught up in the day-to-day activities of keeping up with 4 cute but busy kids and a wonderful husband that I don't have time to dwell on the negative possibilities. It doesn't do any good anyway. I'm really good at ignoring the bad "what-ifs" because I really don't think that her bad "what-ifs" are all that bad. I know that in time, someone will find that missing puzzle piece that tells us what causes her body to have such a hard time handling food and that we'll be able to figure out what to do about it. She's doing phenomenally well in most aspects of her development but I guess this week I've become aware of things that I had previously been in sweet oblivion to and that's been hard to swallow.

*Sigh* such is life, I guess. There are good days and there are bad days. There are days when you're feeling upbeat and days when you're not. On the days you feel upbeat, you just enjoy it and on the days you don't, you sit on the couch and watch Everybody Loves Raymond reruns and eat a big fat bowl of ice cream and hope decide that tomorrow will be better. Or at least that's what I do. :)

Thursday, October 7, 2010

An eye-opening PT session

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 mean that she just doesn't like to cuddle, but after what we did at physical therapy today, I'm starting to understand more of what it means to have sensory processing dysfunction. (I got a lot of good information from this website too.)

Raya's PT was showing me how to massage her to give her more sensory input. She started with Raya sitting on the floor in front of me and massaged one of her legs. It wasn't anything significant and really it was like she was just putting lotion on her legs. Raya was ok with the first leg, but as soon as she started on her other leg, Raya couldn't take it anymore. She started trying to get away from Hilary and climbing up me like a scared cat runs up a tree. Hilary also massaged her arms and hands and Raya couldn't handle that either. She wasn't as bad when she got her back & stomach rubbed but I think it's because she's pretty fascinated with her G tube so when we rubbed her tummy, she distracted herself by playing with the tube.

I'll put it this way. Most of us would like the way a massage feels. The kind of massage Raya was getting would be very soothing & relaxing to most people, but she acted like she was being tortured. I've never noticed the degree to which she resists touch and we've discussed recently how her dislike for snuggling is probably because she stopped being held to be fed when she was 5 months old. It's not that we stopped touching her completely, obviously, but that closeness that most babies develop from being cuddled and touched while they eat stopped for her 5 months ago. I know that's not the whole reason why she is the way she is and I'm choosing not to allow myself to have guilt about that, but wow, I never comprehended how significant holding your baby is in their developmental process.

SO.
In order to give her what she wants, i.e. being held without me really touching her, and in order to give her more sensory input and hopefully progress towards her being comfortable with touch, I got out the good ol' Moby Wrap. I bought it when I was pregnant with Raya for $15 at a consignment sale. I had a little Snugli carrier with kid #3 and I liked the whole baby wearing thing but wasn't totally in love with that particular carrier. I knew I'd love the Moby Wrap as soon as I saw it and I was right. It was AWESOME when she was teeny and having reflux problems & needed to be upright, and I could position her to help with her torticollis too.
 Being that we live in a place that is the closest possible thing to the surface of the sun for 9 months out of the year, I haven't really used it since about April. Yesterday was a pretty cool day (it was only 90-something :) so I got it out. She was climbing my legs, crying, whining to be held, didn't feel good, and kept me at arm's length any time I did pick her up and it was driving me crazy. I put her in the Moby Wrap and she was out cold in 10 minutes. That NEVER happens. She NEVER goes to sleep when I'm holding her except for occasionally at church. I took full advantage and kept her in it until we both got hot & sweaty and then I put her in bed to continue her nap. I've missed snuggling with her.

Tuesday, October 5, 2010

A diagnosis...

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 to food in her mouth, etc. Even though her MRI was clear, those issues combined fit the clinical description of cerebral palsy, which is something we had discussed at her last neuro appointment in April. Based on today's evaluation, Dr. A has decided to give her the clinical diagnosis of cerebral palsy.
I suppose I shouldn't be happy about that, should I. I am though. This diagnosis doesn't really apply to or help with the GI problems, but it will allow her to qualify for more therapies and will give us something to show to our insurance company if/when issues arise over her therapy. More therapies will help her continue to make progress with her coordination & fine motor skills and that's a very good thing. Obviously I'm not happy that her symptoms are to a degree that she can be given the CP diagnosis, but since the symptoms are there whether they have a label or not, I'm grateful to have a label. Maybe happy isn't the right word, but grateful to finally have someone say, "We acknowledge that your child does have a problem and this is the name of that problem." Now if we can just figure out the vomiting thing...

Monday, October 4, 2010

Antroduodenal Manometry

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 tube is passed after the child is sedated, but the manometry test itself is done after the child wakes up, often the next day. If the child has a gastrostomy tube, the catheter will be passed through the gastrostomy instead of through the nose.  

So basically, they'll be doing testing to measure the ability (or inability:) of Raya's stomach & small intestine to move food & fluids through her digestive system efficiently. Should be interesting. I'm not sure how soon we'll be going (I still feel like I should be saying IF we go), but hopefully it will be in the next month or so. I called the hospital today and they said they'd have to get the referral from our GI doctor (which the nurse said she's already sent) and then when they get the referral their person in charge of scheduling out-of-towners will call me so we can arrange travel & accommodations. I'm also crossing my fingers that our hospital's social worker was right when she said that our insurance may pick up some or all of our plane ticket since the testing she needs is not available in our state. That would be fabulous.
Anyway, once we have an appointment scheduled, the nurse will get all the paperwork in to get authorization from the insurance company and then we'll be ready to go. I think. :)

And in other annoying news, I found out tonight when I opened the box to get out a new extension tube for Raya that when I said, "Raya doesn't have a Bard button anymore, she has a mic-key button so she'll need mic-key extension tubes. Could we get the 12 inch long ones please?" the girl at home health interpreted what I said to mean, "Could you please send me the 24 inch long extension tubes for the Bard button that Raya got removed 2 weeks ago so that we can keep using the same filthy extension tube that she's been using for 2 weeks while we wait for you to correct your mistake?" UGH!!! I'm so irritated right now! I specifically told the girl the exact product and size that we wanted, and then I even called back again later to make sure that she had ordered extension tubes and they STILL gave us the wrong thing. I'd cry right now but I need to go flush the soda pop out of the grungy old extension tube to see if it helped get any of the gunk out.

Sunday, October 3, 2010

A little update

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 because I've had just about enough of her throwing up. If you think about the last time your child had the flu and vomited his/her little guts out and there was nothing you could do but rub their back, clean up the puddle & change their yucky clothes afterward, that's what we do 3 times a day here. Sometimes everything in her stomach just comes flying out and then she's done & happy and goes back to whatever she was doing. Other times, she starts to cry because she doesn't feel good, then she screams & cries the whole time she's throwing up and then feels better a few mintes later. The worst ones are when she throws up until her stomach is empty and then just keeps going. Her entire head will turn bright red, strange noises come out of her and she can't move or breathe until her stomach relaxes. Sometimes that goes on for several minutes at a time. So when I say that I'm tired of her throwing up, only part of that is because of the loads upon loads of laundry it generates.
Anyway, I also talked to the nurse about Raya going to Ohio for testing. Raya's doctor talked to a doctor at the children's hospital in Columbus and he wants to evaluate Raya. They study motility disorders there and are able to do highly specialized testing that the hospitals here aren't equipped for. He also agrees that Raya would benefit from a GJ tube.
Before we can go, they need to see her complete medical records including films from all the scans she's had done. Then there's the issue of clearing everything with the insurance company...SO it might still be a while before we go, if we go, but it at least makes me feel like we're doing something.
So that's it for now. :)

Friday, October 1, 2010

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