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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 awf…

Pictures from our Ohio trip

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






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!! 

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 t…

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 …

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 to…

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 …

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 i…

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 t…

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 i…

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 EVERYWH…

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. :)

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 ma…

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:

Visit msnbc.com for breaking news, world news, and news about the economy
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 …

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:



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 yogu…

Bacon Part II and another GI appointment

We fed the baby bacon again. This time went even better than last time. Before Raya came along, I never would have guessed that seeing my 1 year old play with and "eat" bacon would make me so happy. :)
We started out slow this time. She wanted nothing to do with it as long as Mommy was holding it so she ripped it out of my hand and started to pull it apart:

Tried to remember what to do with it:
Pulled it apart a little more:
(I missed the shot of one of the kids putting it in her mouth and the shot of all 3 kids trying to shove it in her mouth at the same time :)
BACON!!!
Testing out the new teeth (she has 2 on the bottom and 2 on the top now):
Loving all the attention from the big kids:
Practicing spitting it out, which is also very exciting because her typical reaction is gagging & vomiting:
Starting to panic a little when crumbs broke off in her mouth:
Using fingers to try & get bacon back out of her mouth (again, very exciting because normally she gags & vomits to get…