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Friday, December 31, 2010

Poor baby :(

Don't be fooled by her cute little smile. My girl who usually sleeps great all night long has been waking up screaming, not taking naps, clingy, whiny, fussy, fidgity, and did I mention waking up screaming? (and no, it's not night terrors, it's reflux) This morning I had to get her out of bed and put her in the stroller in the living room where she immediately stopped screaming and went back to sleep for a couple hours. (Santa brought it to her. It reclines to a very comfortable angle for her. I love it.) She's also had blood coming out of her drainage tube again and tugging at the tube like it's bothering her. When she had her testing in Ohio done, they took the tube out for one of the tests and then had to put in a slightly smaller size when they replaced it because they only had a 1.5 or 2.0 and her old one was a 1.7. I picked the 1.5 because the 2.0 would have been too big and would have leaked and probably allowed granulation tissue to grow again, which is awful. (PS the 1.5/1.7/2.0 is the length of the part of the GJ tube that is between the outside of her stomach and the inside of her stomach & is measure in cm.) Probably going to need that changed, darn it.
So, once again we've come to a point of needing to make some changes with her. I'm pretty much over the disappointment of not having anyone find something that they know how to fix for her and I'm coming to terms with the fact that we have no idea how or how long it will take to make her better. Since we don't know how long the road ahead of us is, I'm ready to start walking down it.

Monday, December 27, 2010

Pictures from our Ohio trip

Here are a few pictures from our trip to Ohio. And by "a few", I mean about 75. :)

Our journey began at 5:30am with a vomit-filled car ride to the airport followed by throrough pat-downs and leaky formula bottles (thank you TSA guy) and then a vomit-filled 3 hour wait at the airport.

Do I look haggard? Because I felt haggard. And don't let that sweet little face fool you. This picture must have been taken during the 3.5 seconds that she wasn't crying/climbing on me/trying to get away from me on our 2.5 hour flight to Memphis.

After a very long and exhausting day of travel, Raya finally sacked out around 11:30pm AZ time, which was 1:30am Ohio time. I was glad we didn't have to check in to the hospital until 1pm the next afternoon!
Her jammies say "Cookies Make Me Happy" on them. I bought them just for the irony factor. :)

Our WONDERFUL room at the WONDERFUL Ronald McDonald House, for which I donated $20/night. And yes, those are sleep number beds. And yes, they ARE as fabulous as the commercials make them seem.
Since Raya's feeding pump had to be turned off at 9:00 that morning, she enjoyed roaming free around the room. Her favorite thing was squeezing herself into the tiny gap between the bed and the nightstand. Then she would get stuck and yell until I got her out. It was fun.

Getting ready to check in to the hospital
One last photo op before getting all bundled up to go outside, where it was approximately 7-10 degrees Fahrenheit.
Here's Raya in her spacious (read:PRIVATE) hospital room playing with the Glow Worm toy they gave her in Admitting. This was while they were still waiting for a crib.
Here she is happily playing in her crib with her Glow Worm.
And here she is approximately 5 minutes later after being weighed & having her vitals taken, which reminded her that she was, in fact, at a hospital and that she does not LIKE being at the hospital. She also decided that she no longer liked the crib or the Glow Worm.

And here she is after 1 solid hour of crying. I finally had to put her in the stroller, tip her back, and move her forwards & backwards until she fell asleep. So much for the physical therapy we've done to fix her torticollis.

After seeing how much she loved having her vitals taken, I knew she'd just be thrilled to have the probe placed in her nose for the impedence test. It even came with a set of "welcome sleeves" to keep her arms straight so she couldn't pull the probe out of her nose. I told her it was better than having them put a doggie cone on her head but she didn't really care to listen to me at that point. PS notice the new and wonderful drainage bag that replaced her little plastic bottle that we hated so much. :) And since she had a 24 hour attendant with her during that test, I went back to RMH and had a peaceful night's sleep all by myself.

Occasionally she had a happy moment or two. :)

This is the famous "O" face. All of our kids have made it, as I'm sure most babies do. It didn't take her long to learn that if she did it for an audience, they would laugh and tell her how cute & funny she was. I thought that the mustache of Duoderm adhesive that was holding the impedence probe in added a nice touch to the O face. :)
Bless her little heart, she really did try hard to entertain herself but it was so hard to play with toys with those darn welcome sleeves on!
FINALLY the probe came out and the sleeves came off and we had a happy child again. :)
And she's so CUTE when she's happy (as opposed to screaming, crying, throwing fits, etc.)
This was after hour #1 of her miserable 2 hour IV ordeal. Because she had to be off feeds for 8 hours prior to her manometry test and then for 4 hours during the test, she needed the IV fluids. This picture was taken after the first person had tried unsuccessfully for about 45 minutes, poking her 3 times while I laid across her body and 2 other people held her hands & feet still. She was exhausted by the time we got done, and look at all the nasty green stuff that drained out of her stomach while they tried to start her IV. I felt really bad for her. If I had known how to start the IV, I would have done it myself.
Luckily, the next morning she was back to her normal self and the whole IV ordeal was just a bad dream. And I had a fabulous night's sleep across the street at the RMH on a sleep number bed.
Then I spent a couple hours between when she woke up that morning and when they came and got her for her manometry test keeping her from ripping out the IV that took 2 whole hours to put in. Turns out she really likes to play with/chew on tubes, wires, strings, and anything resembling tubes, wires and strings.

This was after she miraculously fell asleep on my lap during the manometry test. The big yellowish tube with the black stripe down it is the manometry probe. It has a whole bunch of little tiny water-filled tubes in it and they all have little holes in them at different points in the GI tract, which somehow measures the muscle contractions, blah blah blah. The blue & clear tube is actually an NG tube which they just stuck into the hole in her stomach instead of putting it in her nose so they could feed her formula during part of the test. It was kind of cool watching them place the probe and hook everything up. 

Since we were in a special little room all day for the 6 hour long test, very few medical personnel bothered her (meaning, looked at her the wrong way) so she was fairly happy for most of the test. Except that she got bored because she had to stay still so the probe didn't get disturbed. Try keeping a 1 year old still for 6 hours.

Okay, so it's probably not really called an antroduodenal manometry-o-meter, but close enough. The little tiny clear tubes that you can see at the bottom left of the picture are coming out of that big tube in Raya's stomach, then they hook to the blue thingies in the middle of the picture. From there, they're somehow hooked to the computer that records all the data it's collecting from Raya's body. 

This is where we stayed from 9am to 4:30pm. I was grateful for the somewhat comfortable chair and the tv but would have appreciated better cell phone reception so I could have amused myself by texting status updates to facebook.
It drove me absolutely nuts that I had no clue what any of the lines on the screen meant. The only things I knew were that the top line on the screen was from the tube that wasn't quite all the way in Raya's stomach so it got water on her all day long, and that the red line in the middle was somewhere near her pylorus.
Here's another picture of the whole setup. The probe comes out of her stomach, hooks to all the little tubes on the floor, which hook to the machine, which records the data that I didn't have a clue what any of it meant.

This is what the hole looks like without the GJ tube in it.

Nurse Roberta was Raya's favorite person at the hospital. Especially after she got out her rat puppet. We loved Roberta. :)

After the manometry test was over, it was time to put in a new GJ tube. The radiologist thought it was wierd that I wanted to take a picture of it first but he humored me. The piece on the left is what's on the outside of her stomach. If you look closely, there's a little bump about an inch to the right of the big piece, and that's the little balloon that you inflate with water to hold it in place. The rest of the tube goes through her stomach and into her small intestine.

We had a lovely view of the parking garage from her room. :)
Whenever I see her do this, it grosses me out because it makes me wonder how well they disinfected that part of the crib after the last kid smashed his/her face all over it.
That big beautiful building is the Ronald McDonald House. Even though it was really close to the hospital and I could have walked there in about 2 minutes, I was told to take the shuttle after dark because it wasn't a great neighborhood. Ummm, have you BEEN to Phoenix Children's??? THAT is a not-so-great neighborhood. This place looked fine to me but I obeyed and took the shuttle. With the heater in it. Because it was SOOOOOOOOO cold outside.
Nuclear Medicine: The Final Frontier. Or at least it was for us. Her gastric emptying study was the last test she had to do, and once again, she allowed them to dump 2 oz of formula straight into her stomach and never threw up any of it. She did have a little radioactive spitup once but that was it. I was just glad that this wasn't the same as the one she had done in Phoenix where she had to lay under the scanner for a full hour. This time, they took a picture when her stomach had just been filled with formula and then again 2 hours later, after it had successfully emptied 97% of it. Go figure.
Our favorite GI nurses Roberta and Andrea came back to say goodbye to Raya and brought her a cute little book to play with on the airplanes home. A very sweet patient from down the hall and her mother had given Raya that puppy that Roberta is holding to try and make her happy while I was downstairs once and she cried the whole time I was gone.
And after our little meeting with the doctors, Raya and I packed up all our belongings and everything that wasn't nailed down in the hospital room, and our friend Jarom picked us up and took us to the airport. We really REALLY appreciated him doing that for us!! Raya was a pretty crabby girl by the time our plane left that evening and we learned that there are, in fact, airplane seats that don't recline AND have no windows. That was a miserable 2 hours. The next 3 weren't great either and I couldn't WAIT to get off the plane in Phoenix where I knew it would be warm and go home to my family and put Raya in her own bed.
So that's our trip in photos. :)

Wednesday, December 22, 2010

DC'd PT and Since we've been home...


Raya had her last clinic-based PT appointment on Dec. 2nd. Since she was diagnosed with cerebral palsy, she is eligible to have home therapy through the state which is more convenient and will cost us a little less than in-clinic. We will sure miss her awesome PT Hilary though!!

Practicing using both hands while side-sitting :)

Helping Kaida play with Mr. Potato Head while Hilary tries to get her
to engage her non-existent abs :)
I'm still crossing my fingers that Raya will be able to see Hilary again at some point because I really like some of the treatment methods that she uses but I'm excited to see how Raya will do with PT at home. Not to mention that I will be able to stop begging my poor friends & family to take Kaida while I take Raya to PT. :)

Since we've been home from Ohio, Raya's vomiting has been SOOOO much better. I'm 99.9% sure that the reason for the sudden drastic improvement is that they took out her GJ tube and put a new one in. I don't know if it's just positioned a little better in her pylorus (where the stomach opens into the small intestine) or what the deal is but that's the only thing even remotely resembling a treatment that they did to in Ohio so it must have helped. She's only throwing up a couple times a day now and it's not the nasty yellow/green stuff that she was throwing up. Now it's almost clear. Last night I decided to see if she could handle having her G tube clamped all night so it wasn't draining her stomach while she slept. I didn't think it would be a big deal since she hardly drains anything overnight anyway but yeah, it was a bad idea. She puked/dry heaved her little head off for about 3 hours this morning so I won't do that again anytime soon. That's the kind of thing that makes me wonder how in the world we're going to transition her back to gastric feeds. We can't feed her into her stomach and drain her stomach at the same time!

Another huge clue that changing her tube helped her stomach's ability to drain is what the drainage looks like now compared to what it looked like before. Up until the day they took the tube out, her drainage was anywhere from bright yellow to various shades of green, and it smelled really bad. Now it's almost clear and pretty much odorless. Occasionally there's yellow bile in it but it's pretty much always almost clear and there's a lot less of it now. Where she's at now is what we had hoped would be the immediate results of getting the GJ tube in to begin with, it just took 2 months and replacing the tube to accomplish it. I actually went for 2 or 3 days in a row this week without having to change her bedding and that hasn't happened in...well, pretty much ever. :) Then when I did change it, it was because she had a blowout. That has been an unfortunate side effect of how efficiently her body seems to be functioning now. Every time she poops (or "stools" if I'm being politically correct :) she immediately has bright red blistering diaper rash like she did when we were infusing her stomach contents back into her J tube. I feel really bad because it looks absolutely miserable but aside from cleaning her off really well and slathering up with aquaphor and medicated powder, there's nothing I can do to prevent it. I'm hoping that her body will adjust to the new increase in her motility and maybe that won't keep happening.

Aside from the GI symptoms, she's doing pretty well with other things too. She's more willing to walk now. She can take 4-5 steps and I've seen her do more than that once or twice. Most of the time it's still 2-3 and she walks sideways but she's starting to be more interested in walking. She has also developed a great bear crawl. It's pretty funny to watch. Overall, she seems to be a lot more comfortable and there is SOOO much less vomit now and those were the 2 main things we had hoped to accomplish with the GJ tube so I'm trying to focus on that right now. Yay, mission accomplished, even if it did take 2 months longer than it should have!

Sunday, December 19, 2010

The Ohio Report

First off, I really do need to express my gratitude to everyone who has sent me words of encouragement, love and support and has said prayers on our behalf. I have had many experiences lately where I know that things have turned out a certain way because so many people are praying for us. (like how we didn't miss our connecting flight from Memphis to Columbus even though our plane took off from Phoenix an hour late :) We are also very VERY grateful for our friends and family who have taken care of the other kids for us. One of the hardest things about this past year is all of the time I have had to spend away from the other kids while Raya has been at the hospital, but the one thing that has helped me to deal with the mommy guilt of leaving them is knowing that they were being as loved and cared for as they possibly could be and that they were in places where they felt safe and comfortable. Instead of being upset with me for leaving, they've been excited to have sleepovers on school nights. :) 

Dr. D, Mary (the NP) and Raya

We'll start with Dr. D's report and then I'll tell you how I feel about it.
Here's what he had to say:
1. The manometry test wasn't totally normal but was pretty good. (meaning that her stomach & small intestine are functioning pretty normally.)
2. The gastric emptying study was 97% cleared, which means that 2 hours after the radioactive formula was put into her stomach, 97% of it had left her stomach. That's totally normal.
3. The impedance test showed reflux but not a huge amount and the symptoms were pretty consistent with what was written on the log, meaning that what we see is pretty much what we get with her reflux. When she coughs, has those loud wet hiccups, and spits up, it's reflux.

What do these results mean?
Well, it means that she does not have a motility disorder, so once again, we have ruled something out. I'm pretty tired of ruling things out and not that I was wishing a motility disorder on my child but after a year of watching her suffer through really miserable symptoms all day & night every day, I was really REALLY hoping to pinpoint something rather than rule out one more thing. That being said, here's Dr. D's impressions of what she DOES have going on.

1. Reflux, which we have known from day 1, but for most kids with reflux, it resolves itself by the time they're 12-18 months because the lower esophageal sphincter has matured enough to do its job of keeping stomach contents in the stomach by then. He also said that kids who have increased muscle tone, which comes with cerebral palsy, have a more difficult time resolving reflux.

2. Sensory disorder. To quote what they put on our discharge paperwork, "Raya seems to have a very sensitive reaction to visceral sensations." Briefly put, Raya's stomach & intestines do not interpret sensory input correctly which causes her GI tract to overreact to stimuli that wouldn't normally cause dry heaving & vomiting.

Sensory processing disorder is a topic that we first learned about from Raya's neurologist when she diagnosed her with cerebral palsy and sensory processing disorder. Since then, I have wondered at times if the increased tone from CP and her sensory issues may have been playing a part in her vomiting since I can definitely see that they play a role in her torticollis being so difficult to resolve. It didn't seem to me like those things alone could cause the severity of symptoms that she's had though so I didn't really consider it as a possible cause. But what the heck do I know anyway, right? :)
I mentioned before that while we were at NCH, we were able to replace our awful G tube drainage bottle contraption with a drainage bag that's specifically made for that purpose. I told Mary, the nurse practitioner that works with Dr. D, that I thought the bags did a much better job of venting gas in addition to the fluid drainage and that I thought maybe that was contributing to the sudden improvement of her vomiting. Sure enough, Dr. D said that the intestines & stomach can be very sensitive to pressures and that it's possible that the improved venting w/the bags has helped with the vomiting because if her gut doesn't interpret sensory input correctly, that could cause it to overreact. So in other words, her body reacts disproportionately to little things like a little extra gas in her stomach or intestines, the feeling of a full stomach, and long periods of motion like car rides. For other kids, those things might not even be noticed and their bodies would perceive them as normal sensations and react accordingly. For Raya, her body overreacts and she gags, dry heaves, and/or throws up. I had thought that sensory processing disorder mainly affected things like a child's sense of touch, smell and hearing, but I had no idea that it could affect the GI tract as much as it has affected Raya's.

Where do we go from here?
His recommendations are:
1. Keep her on the neurological medication that she's currently on. Because there seems to be a neurological component to her symptoms and because that particular medication seems to have helped with her reflux, he feels that this particular medication is a good one for her.
2. Add a new medication that he said will help to desensitize her gut and hopefully reduce the discomfort and irritation that seem to be causing her to vomit. It is also used to increase appetite, which may be beneficial in trying to get her to eat.
3. Because the tests confirmed that her stomach has the capability to function normally, he would like us to transition her back to gastric feeds instead of jejunal feeds. We will need to experiment with a combination of the 2 feeds and continue with periodic gastric venting in order to make the transition. (That part was difficult for me to hear because I feel like we have spent the entire first year of her life trying every possible combination of feeds to no avail, which got us where we are today: a 13 month old who won't eat.) That being said, I do agree that if she has a fully-functioning stomach, there's no reason why we shouldn't try to use it.
4. If her reflux doesn't resolve itself by the time she's about 18 months old and we haven't been able to successfully transition her to gastric feeds without vomiting, then we will need to revisit the possibility of doing a fundoplication surgery, which is something we had talked about before. This surgery is done to prevent reflux and vomiting, which is accomplished by taking the fundus (top of the stomach) and wrapping it around the lower end of the esophagus, which tightens the lower esophageal sphincter (LES) and prevents the backflow of stomach contents into the esophagus. (I sound like a medical dictionary, don't I.) From where we are right now, I see this as a realistic expectation if we are going to be putting her back on gastric feeds.

How do I feel about all of this?
The 3 words that first come to mind are frustrated, disappointed, and discouraged but the next 3 are grateful, humbled, and faithful.
Frustrated: I am frustrated that after a whole year of ruling out one thing after another after another, it felt like the main result of our trip was that we ruled out one more thing. I'm frustrated that the recommended course of action is pretty much just to keep trying. I'm frustrated that when Raya's body really needed to give them an accurate picture of how it usually functions, it didn't.
Disappointed: I'm disappointed that we didn't get a label for Raya's problem because that means that we also didn't get a cut & dried plan of action for how to fix it. I'm disappointed that the testing all came back normal/close to normal when I KNOW that her body doesn't usually work that way. I'm disappointed that our trip to Ohio didn't remove as much of the uncertainty as I had hoped it would, and really just replaced the old uncertainty with more new and very daunting uncertainty.
Discouraged: I'm discouraged by the fact that I feel like we have already done everything we know to do and none of it has worked so far. I'm discouraged because there was no diagnosis with an immediate course of action that would have stopped the vomiting so that we could shift our focus to teaching her to eat. I'm discouraged by the fact that I feel like this non-diagnosis pretty much leaves the burden of "fixing" her up to me and Donny and how hard we are willing & able to work at it. So far, we haven't made a lot of progress with her towards eating, and that makes it difficult to see how we'll be successful at that huge job.

Grateful: In spite of the results not being exactly what I had expected or wanted, I am extremely grateful that we had the opportunity to go meet Dr. D and his team and have Raya evaluated by them. I'm grateful that they did rule out something that could have been a lifelong problem for her and grateful for the suggestions that were made. I'm also grateful for the personal growth that I have experienced through the challenges I have been faced with over the past year, and for Donny's patience, love and support as I have learned to handle what I'm being dealt as Raya's mom.
Humbled:  I feel humbled by what a huge mountain we will need to climb to get Raya from being 100% GJ tube dependent to being an oral eater. We're talking Kilimanjaro+Everest=Raya. However, because I know that God chose to give me Raya and everything that comes along with her, I feel humbled that He thinks I can handle this. At the moment, I have a hard time feeling that way about myself but I know that if God has faith in me to do this, with His help, I will be able to. People tell me how strong I am, etc. but when you are the one that's holding the big fat barbell full of weights, it's hard to see how big your muscles look and I don't know if I feel that strong.
Faithful: In the blessing that Donny gave Raya when she was almost 2 months old and before all of this really got started, he blessed her that she would "have a healthy body and enjoy the activities of life." I distinctly remember that statement standing out to me at the time, and as her various challenges have presented themselves over the past year, that has replayed itself over and over in my mind. I have no doubt that it is true. I have faith that whatever really is at the root of her difficulties will be no match for her strong will & determination to do whatever it is that she wants to do.

We have a follow-up visit with her regular GI doctor in a couple weeks and hopefully at that point she will start Raya on the new medication and we can start coming up with an action plan for transitioning back to gastric feeds. I'm also hoping to get a little bit more detailed information about the test results since we really only had about 15 minutes to discuss 30+ hours' worth of testing before we left Ohio. Well, onward and upward, it's time to start climbing that mountain. :)

Thursday, December 16, 2010

Manometry=done

Could someone please explain to me how it is fair that I have spent the last year of my life continuously cleaning up large amounts of various types of vomit, flown across the friggin' country cleaning up more vomit the entire trip and getting groped by TSA because of all the liquids we're traveling with, and then when we get to where they actually have the technology to diagnose the problem and all of a sudden there's miraculously no more vomiting? I'm sure it will resume the minute we check out of the hospital tomorrow. In the 6 hours that Raya had the manometry probe placed today, she didn't throw up even once. Not even when they squirted 2 oz of formula into her stomach (which hasn't had ANYTHING in it for almost 2 months and has NEVER had formula go into it that fast before). When she was done being monitored, Dr. D said (in his little Italian accent), "Don' worry, iss okay. It is what it is, we just use what we get today an' I look over it tonight an' we do gastric emptying study tomorrow an' talk in de afternoon before you go home." Well okay then. Good thing he's a smart doctor because her body is really trying to make things difficult. One more night, 2 more tests, and 2 very long flights home.

Wednesday, December 15, 2010

IV

Raya's veins don't like to have anything put into them or taken out of them. It took 2 different members of the IV team, 5 needle pokes in 3 body parts, 4 people holding her still, and 2 hours to get an IV in her tonight. It's not that the people working on her didn't know what they were doing or weren't good at their jobs, she's just really difficult to get a vein on and she's a really slow bleeder, which also meant that we weren't able to get the 1ml of blood we needed for the allergy lab. By the time they actually got a functional IV in, they weren't about to risk losing it just to get that lab and I didn't blame them. Nicole from PCH's IV team, we love and appreciate you even more now and we really missed you tonight!

The evening report

We saw our celebrity-ish doctor again this afternoon for about 30 seconds (that probably cost us $300 :) when he came in to ask how the impedence test was going. I told him how Raya has been on pretty much her best behavior today, i.e. NONE of the usual 5-7am retching & vomiting, no vomiting the whole day, only a couple of gags/dry heaves the whole day, etc. He said not to worry about it and that even though those symptoms weren't at their worst today, there was probably still a lot going on that we can't necessarily see and I think he was right. She had a LOT of her little "wet hiccups" like (pardon my grossness here) when you throw up a little in your mouth & then swallow hard. I was also watching the numbers on the little data box and I don't know if it was like the one we did before where it was measuring the pH in her esophagus but if it was, then I really feel bad for her. The number ranged from 9.8 all the way down to 1.0, which seems really crazy and maybe even impossible for it to get that low, so that's why I'm not sure if that's what the number really was or not. I have no idea when they'll have any information for me about that test but I think they plan on going over things with me before we go home.
Raya was a lot less irritable & fussy today than yesterday but she still wasn't happy most of the day. I was SO glad when 4:30 came along and they removed the probe & we could take off the arm braces and let her play. The only annoying thing now is that they have a different kind of feeding pump here than the ones we use at PCH and the one here is really easy for her to pop the tubing off of. It's annoying.
So the plan for tonight is that she gets about 3 more hours of relative freedom before the IV team will come and place her IV. She has to stop feeds at midnight for the test they'll be doing at 8:00 tomorrow so we've fed her all day instead of giving her the usual breaks. She's been having a lot of G tube drainage today since she's still off of the med that helps with her motility. I think after her IV is in and she goes to sleep, I'll probably go back to RMH and take a shower in a non-yucky hospital shower and sleep on my nice comfy bed and then come back early again tomorrow like I did today. It worked out great and I really REALLY appreciated having a break from worrying about Raya's feeding pump & medications.

Survive first night apart: check

We survived. :) Raya only woke up once while I was gone (from 10:30 last night until 6:30 this morning) and of COURSE, in spite of me praying that she'd throw up a ton and dry heave her little head off so they can see what she's like at her worst, the little stinker had a great morning and only gagged a little when I laid her down to change her diaper & she was mad about it.
She's been behaving much better today. She likes the girl that's been monitoring her all morning and that always helps. I like her too. In about 3 hours we'll be able to take the probe out of her nose and she'll get a little bit of freedom (other than being hooked up to the feeding pump) until tonight when they put an IV in. She has to be NPO (no food/liquids) from midnight until her test tomorrow so they'll give her IV fluids to keep her hydrated. I've already asked them to have the IV team ready since she's almost impossible difficult to get a vein on. They said IV team is on until 11 pm so they'd better do it before then! They'll also draw labs for allergy testing then. I'm a little confused/disappointed about the fact that her allergist only ordered the IgE and not a food panel, which is more specific. The IgE only indicates whether or not there are allergies but is not specific about what type of allergies. Oh well, I know the doctor is a good doctor and I'm sure he has his reasons for only ordering that one test.
The manometry test that we're doing tomorrow sounds pretty interesting. They'll take out her GJ tube (crossing fingers they'll be able to get it back in...) and they'll put a tube that has a lot of little tiny tubes in it through her stoma (aka the hole where her GJ tube goes). The tube will go from her small intestine up through her stomach and possibly partially into her esophagus but I'm not sure about that. The little tiny tubes have water in them and somehow measure the coordination and strength of the contractions in the GI tract. They'll monitor her for a couple hours without any food in her digestive tract and then they'll probably put some formula into her stomach. That should be fun since she hasn't had food in her stomach for 6 weeks now. :) They'll monitor her for a while that way to see how her system reacts to food. I'm not sure if they'll do anything else besides that or not but that's pretty much how it will go. Then they'll put her GJ tube back in.

Tuesday, December 14, 2010

Mommy's FIRST night off!

With very mixed feelings, I decided to take the night off and sleep at RMH without Raya tonight. Mostly because there will be someone in her room all night long monitoring her symptoms so they can be recorded for the guy that will be evaluating her impedence test results. Why would I want to sleep in front of a total stranger whose job it is to stay awake all night and watch my kid sleep, which means he/she would also be awake all night to hear me snore/talk in my sleep, etc. when I could sleep in my new favorite sleep number bed at RMH? Not to mention the fact that she cried pretty much from 1:00 when she was admitted & taken to her room until 10:30 when she finally FINALLY went to sleep. However, it was still tough to leave her there because I've never slept more than 10 feet away from her just in case she needed me to roll her over so she didn't choke when she threw up. Part of me wants to feel that good ol' Mommy guilt, but a bigger part of me is reminding myself that this is the best opportunity I'll get to not have to worry about anything for a night since she'll actually have one-on-one care all night. The best part is that someone else gets to clean up her 5am vomit(s) for a change. And she'd better vomit at 5am, dangit. I didn't fly all the way to Ohio with her so that she can decide not to throw up in the morning!!
We met with the nurse practitioner today and then later we met THE doctor that we're here to see. I felt like I was meeting a celebrity because any time someone would ask who we were here to see and I'd tell them, they'd do one of those, "Ohhhhhhh, you're here to see HIM." things and then tell me how people come from all over the country and all over the world to see him. That makes me feel special. The fact that he agreed to see us at all and then made it so that we got in in 2 months instead of 4-6 months has helped to get rid of my self-doubt about the fact that Raya's problems aren't just a simple oversight that we've made and that there is actually something wrong with her body. I think it's pretty obvious that there's something wrong with her, but it's still hard to not think that at any given moment, somebody will just say, Oh, all it is is xyz, why didn't you figure that out??
OH MY GOODNESS, I almost forgot the most EXCITING part of my day/week/YEAR. Remember this annoying contraption? i.e. the 3 oz plastic bottle with the tip cut off taped to her extension tube to catch the fluid draining out of her stomach? Well, when we got into her room today and I showed it to the nurse and asked her if they had a new lid I could replace it with and/or something better to use, she brought me the most beautiful little plastic drainage bag that plugs into the extension tube and has a little clip to hook it to her clothes so that when it starts to collect a lot of fluid it won't rip the tape off her little tummy. I was SOOOOO ridiculously excited about it! What does that say about me that I got excited about a G tube drainage bag... When we go home I will post a picture and then maybe my excitement will be understood. :)

Test #1

Raya was admitted to the hospital today to start her first test. It's called an impedence test and it measures the acid and non-acid reflux for 24 hours. I'm not sure which she hates more, the probe in her nose that's probably giving her flashbacks of her NG tube or the "welcome sleeves" they put on her arms to keep them straight so she can't rip the probe out of her nose. :)
So far the hospital is nice. It's huge, and part of that hugeness means PRIVATE ROOMS. No offense, PCH, but there is DEFINITELY something to be said for private rooms. Unfortunately because the impedence test requires that certain data be recorded by a human being & not just by the box that's collecting the data, Raya will have a tech with her for the next 24 hours. I may just sleep at the RMH tonight to avoid embarrassing myself in my sleep. Not kidding. Okey doke, better get back to the girl. Oh, LAMEST thing, I can't use my cell phone in the room. That would be fine if ANYBODY that I would be talking to had a local phone number. I guess calling cards aren't as antiquated as I thought. :)

Monday, December 13, 2010

We made it

Here is a brief summary of our day, starting last night:

11:30pm-went to bed
3:something-o'clock: woke up in a panic wondering if I had slept through my alarm, went back to sleep
4:30-alarm went off, I got up. Ever notice how when you have to be at the airport, it's way easier to get out of bed when the alarm goes off?
5:15-woke Donny up
5:35-left the house
5:45-Raya threw up in the car
6:15-ish-got to the airport, took a detour through terminal 4's departures area (dumb airport road construction!)
6:30-pulled out my 1 quart bag of liquids & put it on the conveyor belt. Then pulled out Raya's multiple bags of liquids, 5 medication bottles, sterile water, pedialyte, and the ice packs that were keeping it all cold, set off metal detector by walking through it with a feeding pump which was attached to her.
6:35- commence thorough pat-downs
6:45- pat-downs done, dignity mostly intact, cleaned formula off of my jacket, boots, and out of my bag of liquids (it was EVERYWHERE) because TSA guy didn't put the lids back on tightly.
7:00-start waiting for 9:10am flight, Raya got bored so she threw up, I caught it all, yay me.
8:40-get gate check ticket for stroller
9:10-still not in plane, flight attendants "stuck in traffic on the 202 because of an accident", entire gate area groans in unison
9:40-original flight crew still MIA, replacements show up
10:15-ish- FINALLY take off an hour late
*Raya cries pretty much the entire duration of the flight except for 15 minutes in which I chugged my ginger ale & ate my yucky cookies*
1:50pm Memphis time- get off plane and walk as fast as possible from one end of the Memphis airport to the OPPOSITE end of Memphis airport, get taunted by delicious smelling BBQ place I don't have time to eat at & bathroom I don't have time to use
1:55pm-get to gate & go straight onto plane. TINY plane. Get cozy in seat 2A.
2:15pm-after EVERYBODY is on the plane, crabby flight attendant tells people across aisle from me that one of them has to trade places with me because there's not enough oxygen masks on my side.
*repeat performance of first flight with less vomiting/dry heaving*
5pm columbus time- still on plane, which is late
5:30-finally land in frosty Columbus
5:45- meet up with awesome friend Jamie and her hubby who take us out to dinner (where Raya vomited again) and deliver us safely to the Ronald McDonald House

the end

Sunday, December 12, 2010

Ready or not...

The big kids have been delivered to their temporary homes (THANK YOU awesome friends & family for keeping them!!!!) and now I'm trying to figure out what to pack in which bag, how big my carry-on needs to be, which ice packs to put in Raya's backpack, which ones to put in the cooler (yes, i have to bring a cooler), etc, etc, etc. I'm a tad nervous about the airport but we'll survive. Well, I'd better quit stalling and finish packing. :)

Wednesday, December 8, 2010

Hurry up, Monday!

Actually I should say, hurry up Tuesday because I'm really not looking forward to Monday. Monday is {get up early, go to airport, get frisked by TSA, beg them to let Raya & her liquids through security, and sit on airplanes with a fidgity one year old all day} day. Tuesday is when she'll be admitted to the hospital and the real fun will begin. :) Honestly, I'm starting to worry/wonder if they will be able to get all the information they need from the 2 tests they've scheduled, one of which we've pretty much already done with her before. The neurotic mom part of me wants them to do every test they have on her so they don't leave any stones unturned but I keep having to tell myself that they know what they're doing.

In the mean time, Raya couldn't be more ready to go. (me, on the other hand... :) When we came home from the last hospital stay, I wondered how long we would have before our new plan we had enacted would stop working for her. We've made adjustments here & there in the last month but when the only thing we have ever been able to accomplish is a slight reduction in her symptoms, it doesn't take too long for her stubborn little body to learn to work around our treatment plan and do what it wants to do. We've gotten used to and probably taken for granted how well she has gained weight since we started tube feeding her, but in the back of my mind I feel like we're walking a thin line of stability with her. There's always a question in my mind of how long what we're doing right now will continue to work for her before things start to go south again. She's still doing pretty well right now but I can see that her symptoms are starting to evolve a little bit again.

For a very long time now, Raya has been my little vomiting alarm clock. She's very consistent. I woke up this morning to the sound of little happy noises from her bed and no dry heaving or vomiting, and although I like it when she feels good, that's a pretty good indicator that something's wrong. Sure enough, I looked at the feeding pump and we had forgotten to reset the dose on it last night. She probably stopped getting fed around midnight or 1:00, so she had been off for about 6-7 hours. She had gone back to sleep so I just turned the pump on and left her alone. Then almost exactly an hour later, she started dry heaving again. So pretty much, she just can't handle being fed. At all. We've noticed the same thing when we give her a 2 hour break in the evening too. Almost instantly when we turn off the pump, she feels great. Her energy level spikes and she's just as happy as can be.

Thursday, December 2, 2010

A Tear-Jerker

This morning, I got a text message from my friend that there was something I should watch on the Today Show, so I turned it on. Here's what the story was:


Compared to other points in the saga of Raya & her feeding tube, I rarely get emotional anymore. I don't know if it's because right now I'm completely occupied by getting ready to take her to Ohio + getting ready for Christmas + just being busy taking care of her & 3 other kids or if I've just become desensitized but it takes a lot more now to get to me than it used to. For some reason though, by the end of the story, I was in tears. It struck a nerve, as I'm sure it probably did with every other parent of a child with a feeding tube. Now that Raya's past her first birthday, the reality of how difficult it is to wean a child off of a feeding tube, especially a child with a more invasive GJ tube, is starting to set in.
As much as I hope that our trip to Ohio will help us put an end to the symptoms that have made her afraid to eat (i.e. vomiting, reflux, abdominal discomfort, etc.), I am feeling cautiously optimistic about what happens after that. I'm finding myself wondering how long it will take to undo the psychological damage that has been done and then how long it will be before she is good enough at eating to take in enough calories by mouth. Before she can begin to eat, she has to get over her fear of food, and then she has to actually learn the mechanics of eating and be willing to eat a healthy diet. That's a tall order for a kid who won't eat anything at all other than sucking the grease off of a piece of bacon. :)
I do feel like we have had a small breakthrough this week though, that started with bacon. Before her 2nd bacon experience, any time small pieces of food (or paper, fuzz, string, etc.) would be in her mouth, she would panic, gag and throw up to get them out. Either she wasn't able to spit them out or didn't realize she could/should spit them out, and she never even attempted to use her fingers to get unwanted food or objects out of her mouth. When she had bacon the second time, little crumbs broke off and she kept them in her mouth for a little bit and then spit them out and took the bigger pieces out with her fingers. HUGE breakthrough.
Fast forward to this afternoon, Kaida and I had gotten chicken nuggets and fries at Mickey-D's. Just for kicks, I took a little bite out of a fry and then held it up to Raya's mouth. To my surprise, she opened her mouth and leaned toward it and then held it between her little teeth nubbins for a few seconds while looking at me out of the corner of her eyes and grinning. Then a piece came off in her mouth and she immediately spit it out onto the floor. I never thought I'd be so proud of my kid for spitting food out onto the floor but I was. Then I tried with a chicken nugget and the same thing happened. She had a little piece break off, held it between her lips & teeth for a few seconds and then pushed it out onto the floor with her tongue. Then she got a bigger piece and that made it past her teeth onto her tongue. I think she was just getting a feel for it and maybe could taste it too because she just kept it there. After about a minute, I started to worry that she'd end up having it go back toward her throat & choke on it so I pulled it out of her mouth. She didn't gag & throw up then either so I was pretty happy about that too. :)
Well, anyway, I just thought I'd share the story from the Today show because I think it's a pretty accurate representation of what it's like to be the parent of a child who won't eat. Heck, maybe someday we'll be on the Today show. :)

Wednesday, December 1, 2010

While On Hold, Part 2

I wrote a blog post while I was on hold. Here's what the girls did while I was on hold:
See how many things she could cram into the empty Christmas tree box

Pretend to pour Raya's Pedialyte into Mommy's shoe.
(I know, at least she was only pretending, right? :)

And this one decided to take off her long-sleeved, snap-crotch shirt,
(NOOOO idea how she did that, she's not that coordinated! Maybe
she had help...), unplug her feeding pump bag from her extension
tube, leak formula all over the carpet from the bag and from her
extension tube (i.e. straight from the ol' intestine), and
rip the gauze out from around the GJ tube.

Thoughts While On Hold...

I'm on hold with the insurance company. Again. For the goodness-knows-how-many-th time. As I've been listening to the lovely classical music that I pretty much have memorized but don't know the name of, I've been thinking about all of the valuable life lessons I've learned and all of the things that I've gained a deeper gratitude for in the past year. In no particular order, here are a few:

Lessons Learned While On Hold With Insurance/Home Health:
1. It really is possible to keep my stress levels proportionate to the things I'm stressed (or not stressed) about. I am in control of how I react to "stressful" situations and whether or not I allow myself to be bothered by things that are out of my power to control. Knowing that and feeling it are 2 entirely different things and let me tell you, actually FEELING that way is VERY empowering!
2. I am a good multi-tasker. Today while on the phone, I have put laundry in the washer & dryer, opened a yogurt for Kaida, made snarky comments on facebook about being on hold with the insurance company, emailed back & forth with the nurse about the letter she's writing to help us pass through airport security with minimal pain & suffering, found the long lost Christmas Eve on Sesame Street DVD, and cleaned a couple of bums.
3. I have gotten really good at condensing my "what I'm calling about is..." story into a very efficient one-line explanation because it is 100% inevitable that I will be talking to at least 3 different people every time I make a phone call. This is good because then at least I'm doing what I can to waste as little of my time as possible during long phone calls. (again, this goes back to controlling what I can and letting go of what I can't, which in this case is all the time I spend on hold)
4. Sometimes it's good to be put on hold for a little while because it gives you a chance to take some deep relaxing breaths and regain composure before you start beating your head against the brick wall pleading your case again. Sometimes I need deep relaxing breaths. :)
5. Forgive me if this sounds racist or rude, but I've learned that when someone with a very thick accent who is obviously in a call center elsewhere in the world answers the phone and says his name is Steve or Josh or Joe, it's best to ask to be transferred. Especially if he has trouble pronouncing his own name clearly. If I can't understand his English, then he probably can't understand mine either and we're just going to annoy each other and he won't be able to help me with the complex issues we keep having.
6. I don't want to be the cause of somebody's bad day at work (the people I talk to) so I only raise my voice when it's absolutely necessary. I don't swear at them either. Not that I go around swearing at anybody else or anything, but the times that I feel most like swearing are usually during phone conversations with insurance/home health. It makes me feel good when I get off the phone and know that I've gotten my point across but still been nice.
7. I have learned that I am not comfortable being the squeaky wheel, but sometimes other people put me in a position where I am compelled to be the squeaky wheel, and it's possible to do that without being obnoxious about it. It's true what they say about the squeaky wheel getting the oil. I must not be squeaking quite enough yet because they still haven't resolved our issues, but I'm getting better at it when necessary. :)
8. If they made a mistake and you're right and you KNOW you're right, keep calling until somebody listens to you and fixes the problem.


Things I've Gained A Deeper Gratitude For:
1. An unlimited minutes plan on my cell phone.
2. The hands-free device on my cell phone that allows me to multi-task, like doing laundry while on hold.
3. How well Kaida and Raya entertain themselves/each other.
4. The DVD player that helps Kaida be entertained while I'm on the phone for hours.
5. Health insurance. Even if it causes me to spend hours on the phone arguing about claims that shouldn't have been denied, I'm SOOOOOOO incredibly grateful for our health insurance. Raya is a very expensive baby, bless her heart.
6. Our nurse, who spends a huge portion of her time dealing with insurance companies, pharmacies, home health, etc. I honestly don't know how she is able to do everything she does. I feel like everything she does just for us could be a full-time job, let alone all the other patients they have.
7. Our GI doctor, who deeply and genuinely cares for my daughter's well-being. I know there are other good doctors at the same practice who probably would have given Raya a great level of care, but I just don't know if there's another doctor out there who would have had the same passion behind it. It's easy to see that she loves her work and cares about her patients.
8. Since Raya got used to being in the crib at the hospital for very long periods of time, she is now content to be in the play yard in the living room with toys and entertains herself really well.
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