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**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.**

Tuesday, November 29, 2011

Pretty purple cast and an ortho consult

(Note: if you don't want to read about a downer of a doctor's visit, feel free to skip ahead to the pictures at the end.)

Raya had her consultation with the orthopedic specialist today. We've had it scheduled for about 3 months now and I was glad to finally get it over with. It was at the clinic where she's seen for cerebral palsy, and for many reasons I dislike going there. It's really far away (like about an hour each way, longer if there's traffic) and the clinic is dirty and we don't really get to choose our appointment times. (at least not for the first visits with the different specialists.) They just mailed us appointment cards and we showed up when we were told.

Okay, so here's where the frustrating part comes in. Raya's CP is very mild. I get that. We've always known that. I've also said before that if she didn't actually have it, her doctor wouldn't have diagnosed it. Doctors can't just make up diagnoses for patients. We also know that she has made great progress with physical therapy and occupational therapy. The OT has greatly improved how well she tolerates PT, so the PT is more productive and she has made a lot of progress. I said going into this appointment that this would be another one of those doctor appointments where they walk in, look at her, and say, "Aaaaand why exactly are you here??" And that's pretty much how it went.

First, we went into the exam room and since it was our first visit to the ortho clinic, a physical therapist came in to ask some questions and look at Raya a little. The questions she asked didn't bug me as much as the way she asked them. She asked me if Raya can walk and when she started walking, and I told her I couldn't remember exactly but that it was around 1 year. Her reply was to grab Raya's foot (that Raya was sticking out at her) and say, "Well you're not a typical CP kid then, are you! Typical CP kids don't walk at a year." Then she asked me some more questions and had the same type of responses. Then we had to talk about the fact that Raya has very little chance of qualifying for preschool, which I am well aware of. 
As we talked, her demeanor kind of changed and then she said, "Who exactly diagnosed her with CP and on what basis was the diagnosis made?" She was filling out a form and asked me the names of Raya's therapists and then asked, "She's not with DDD, is she?" (DDD = the department of developmental disabilities) And then, "She doesn't have ALTCS, does she?" (ALTCS = state long term care insurance for people with developmental disabilities) Then when I replied that she does have both of those, she didn't make any effort to hide her surprise. It really irritated me because A. If she wasn't DDD/ALTCS, we wouldn't even BE at that clinic, B. If you want to know about her diagnosis, ask her neurologist instead of putting me on the spot with all kinds of questions that I don't know the answers to, and C. The child you're seeing right now is the child who has had a full YEAR of therapy since the diagnosis was first made, so yes, she does look great now but it's because we have all been working hard to help her improve. Oh, and when she asked me what therapies she gets & how often, I told her she has PT but we just decreased it to every other week and she said, "Why is she only getting it every other week?" Um, weren't you just the one telling me how perfect my kid is and that you don't even know why she was diagnosed with CP and now you're asking me why she's ONLY getting PT every other week?? I've always felt that Raya being approved for DDD/ALTCS was the answer to many prayers, so how am I supposed to justify a blessing from God?

 So basically, one doctor tells me my kid has CP and we start therapies (which she DOES need) and then we go through the grueling process of applying for & getting approved for ALTCS, and THEN when we show up to the appointments at the CP clinic that we didn't even ask for, suddenly I'm on trial having to justify to someone I just met why we deserve to be there. I felt like a deer in the headlights or like I had shown up to take a big exam without studying for it. Of course now that I've been home for a while, I can think of all kinds of brilliant answers & explanations for everything. We see things at home that might not be totally obvious in the 5 minutes that a total stranger spends with Raya in an exam room. I hate being put on the spot and it was kind of embarrassing. UGH!

Then after that, a nurse practicioner came in and it was a slightly less irritating version of the same conversation minus the part about acting shocked that she was DDD/ALTCS. She was more polite with the way she asked me questions & talked to me. She said she'd have to ask the doctor if they could do Raya's cast or not since it wasn't related to CP and at that point I didn't care if they did it or not, I just wanted out of there. She watched Raya walk a little and once again I stumbled through my explanation of what our observations have been with her legs & feet and then she said to wait and the doctor would be in.
That was the point at which Raya's meltdown started. Did I mention that Raya had decided to have a poopy diaper instead of taking a nap? Then she had a feeding therapy session and we had to book it to drop Kaida off at a friend's house and get to the appointment clear the heck in Phoenix, and she never went to sleep once. SO by 3:30 or so, she was done. Luckily when the doctor walked in, she put on her charm again.
And lucky for me, the doctor didn't make me feel self conscious about even being there. He asked what concerns we have and I told him that the only real effect we see of the CP is the increased tone in her legs and that she tends to get really tight in her hip flexors & in her lower legs, which ends up making her feet roll out a little so she walks bowlegged. We recently decreased her PT down to every other week instead of every week, so now after about 9 or 10 days of no PT, we start to see the tightness in her legs. It also gets worse when she has an increase in her GI symptoms for whatever reason, as does her torticollis.
His reply was pretty much that he doesn't think we'll need anything from the ortho clinic as far as bracing or orthotics or anything since her tightness improves with stretching & exercise. He said that they COULD do bracing, but that it would probably just annoy her and it doesn't do anything to improve the problem, it's just like putting a band-aid on it. I was totally fine with that response. I had already talked about that with her PT so that's what I was expecting. I appreciated him not talking to me like the other 2 did and not making me feel stupid for bringing her there.
I don't know if I should even be saying all this but I will anyway. Here's another reason why this is all frustrating for me. Every time Raya makes progress with her non-GI related issues, it puts me in a position where I feel like I have to beg and plead and justify the therapies she's getting. The scary part about it is that sometime, she will get to a point where they will no longer consider her as having cerebral palsy. Of course this is a good thing, but if they take away that diagnosis, she will no longer qualify for her long term care insurance. That means she won't get the OT or PT anymore, and she won't have her secondary insurance that picks up any costs that our primary insurance doesn't cover. I haven't added up how much that's been this year but our out-of-pocket costs last year were about $10,000. Next year, our primary insurance is reducing the really great coverage we've had. If we didn't have Raya's secondary insurance, our portion of her feeding supplies alone would be over $500/month. I don't care who you are or how much money you make, an EXTRA $500/month PLUS everybody else's expenses and all her copays & prescriptions is a lot of money. That's about how much we spend per month to feed the other 5 of us put together, and that doesn't include any prescriptions, copays, or anything else. So yes, there is a financial aspect to it and every time we have an appointment that has to do with CP, it stresses me out because I'm constanly afraid that somebody's going to yank the rug out from under us. Finances aside, losing OT would be horrible for us. It has made her a different kid. I don't know what it would do to her feeding therapy since she would still qualify for that through early intervention, but things have changed a lot with that too so I don't know if she'd even be able to get FT every week through early intervention. So now you know a lot of our personal business, but I think this is one aspect of having a child with "special needs" (if you want to call it that) that people don't talk much about so there you have it.

On a lighter note, the orthopedic doctor was extremely nice and went ahead and had them cast Raya's arm even though they weren't really supposed to do it since it's not related to CP. I had a feeling that's how it would be and I knew I should have just made a separate appointment but I was hoping to avoid an extra appointment. Well, anyway, they took off the splint and made her a cute little purple cast:
She's showing me her pretty purple cast and saying, "See?!"
She cried and screamed and tried to get away from me the whole time they were doing the cast. One girl was holding her elbow and fingers and Raya wouldn't hold still so it was hurting her. She had a big bruise on the inside of her wrist but the swelling was pretty much gone. Once they got done and it dried, she couldn't wait to get into her stroller (which she had been screaming at me for not letting her push around the hallway 10 minutes earlier) and said, "Ah-wah doe HOME!" (I want to go home!) And I told her I did too.
She's feeling better now though and she's very proud of her cast. And her G tube. She's been showing it to everybody lately. :) The splint and cast haven't slowed her down one little bit. Today I caught her hanging from the edge of the kitchen table again even though her arm was stuck at a 90 degree angle in the splint, and tonight at the kids' Chuck E Cheese school fundraiser, the stink pot even climbed up INTO the basketball game that Donny was playing.
We have to go back in 3 weeks to get the cast off & get it x-rayed again and I'm already dreading that appointment. After that, we don't have to go back to that clinic until January when we see the genetics specialist, which I'm seriously considering cancelling because I'm tired of appointments where I feel like I'm having to justify even being there. Then we don't have to go back until her annual CP screening in September. Hallelujah. Until then, we'll stick with our good ol' GI visits. At least those usually leave me feeling like we've accomplished something and everybody's nice to me there. :)

Monday, November 28, 2011


This weekend I saw a short documentary on YouTube called "Swallow". This documentary was made to bring light to a condition called dysphagia, which is the medical term for difficulty swallowing, and it can have many causes. Dysphagia is one of the many things that Raya has dealt with in the past. One of the reasons we had to stop her oral feeds at the age of 5 months was because she was not swallowing safely. Instead of the formula going directly down her esophagus, it was pooling over her airway before going down, which can lead to aspiration and pneumonia. Fortunately, she already had a feeding tube at that point and we were able to bypass her having to swallow the formula and reduce the risk of aspiration and upper respiratory infections that can be caused by aspiration.
I am sharing this video with the hope that it will help people to have a better understanding of dysphagia, which is just one of countless possible reasons that a child may need a feeding tube or have difficulty eating.

Saturday, November 26, 2011

Raya's Thanksgiving Feast (and other festivities)

This Thanksgiving beat the heck out of last year when I was stuck at home by myself with one sick 3 year old and a 1 year old with a fairly new GJ tube who was still vomiting a lot of bile, battling c. diff, and on a crazy around-the-clock feeding/med/G tube drainage schedule. It was quiet but pitiful. :) This year was much more eventful.
For starters, Raya enjoyed a lovely Thanksgiving meal that consisted of...drumroll please...
sour cream and wheat thins, just as I had predicted. :) She was offered a lot of other things by various people which she sometimes took little courtesy nibbles of, but when it comes down to it, she doesn't eat what she doesn't want to eat and it's just good that she's over her super duper gag reflex and knows how to spit things out now. :)

After her sour cream & wheat thins, she decided to play on all the fun things in Aunt Debbie's back yard:
I went in the house for a couple minutes and when I looked outside, my sister-in-law was holding Raya, who was laying her head down on her shoulder and crying a little. I went to see what happened & they said Raya had fallen off of the bouncy horse but nobody really saw it happen. She had a scrape on her forehead:
(don't mind the crusty sour cream face) and she said her arm hurt. It didn't look like anything was wrong with it at the time so we didn't really worry too much about it. She was acting extremely subdued compared to her usual supercharged self, but she was also really tired since dinner was during naptime. I sat down with her and then she let one of our cousins hold her and fell asleep. She slept on my lap for quite a while and aside from the fact that I knew she was only doing it because she was tired & had hurt herself, I enjoyed the snuggle.
After she woke up she was still acting funny. She didn't really want to get down and play like she had been before but she wanted to eat more sour cream so I put her in the high chair & gave her some.
I handed her the spoon and she took it with her right hand but she couldn't hold onto it tightly enough to eat her sour cream with it so she used her left one instead. We also noticed that she couldn't supinate (rotate her palm up) and that was when I started to suspect that she had possibly broken it. Since it was Thanksgiving and nothing but emergency rooms were open and she didn't seem to be in much pain, we decided to wait and see how she did with it on Friday.
I got up and went shopping around 7:30 on Friday (because, seriously, NOTHING is worth waiting in line all night for :) and when I got back around noon, her arm was definitely more swollen than it had been when I left. She couldn't grip hardly anything with it and didn't even try to use it. Most of the time, it was just dangling at her side which is not normal for her either.
I knew the pediatrician's office would be closed but I called to see if their after hours clinics were open. They were, but none of them have x-ray machines (SO ready to find a new peds office!!) and the urgent care we like wasn't open until 5 so we waited. I kind of laughed at the fact that instead of waiting in line for a store to open on black Friday, I was waiting in line on a sidewalk outside an urgent care waiting for it to open. :) These are the pictures I took just before we left to go to the urgent care:
We are really lucky that the clinic Raya goes to for a couple of her specialists is also an after-hours urgent care so they already have her very extensive medical history in their system and I don't have to fill out any intake paperwork (which is a HUGE pain with a complex kid) or explain everything from the beginning. We only sat in the waiting room for about 30 seconds before they took us back to a room. Raya marched right in like she owned the place, as usual. :) The doctor came in and looked at it and when he saw that she couldn't rotate palm up, he said that he would just about bet that it was broken. The x-ray tech got us all set up for the x-ray and when she turned Raya's arm for the side view of the radius, she said, "Well I can't tell you anything but I can already see what's going on here!"
While we waited for the doctor to come back in and tell us about the x-rays, Raya kept telling me where her arm hurt:
The doctor came back in and said that she had buckle fractures in both the radius and the ulna just above the wrist. The one in the radius is worse but they're both broken.
So they put a big fat splint on her arm, put a little bitty sling on her (which we now know it's a ridiculous task to keep a sling on a 2 year old who still holds her arms up and out when she walks) and after that we were on our way. The whole thing took just barely over an hour, which COMPLETELY justifies me not taking her to a germy emergency room earlier in the day.
Fortunately, we happen to already have an appointment scheduled for Tuesday with an orthopedic specialist at the CRS clinic (where she sees her CP doctors) so they should be able to look at the x-rays and her arm and decide what needs to be done next with it. This also means we'll be cancelling our weight check for Monday since we can't take the splint off to get an accurate clothing-less weight on her now. I'm slightly relieved about that because I'm a little nervous about how we've been doing calorie-wise since we changed her feeding schedule & added some real food.
Today, we went back to Aunt Debbie's for a baby shower and Raya got the door open and went outside, so while we were out there...
For the record, I tried to take the bracelet off but she insists on wearing it.
Whatever makes you happy, kid. :)
She got back in the saddle, splint/sling/feeding pump and all, and showed that wonder horse who's boss! :)

Wednesday, November 23, 2011

Public display of G tube grossness

We are on a bad streak this week. That darn G tube keeps getting pulled out. 3 times in about 5 days, to be inexact. I've forgotten the details of the first one other than it happened. I think she was just wearing a diaper and the extension tube got caught on a kitchen chair she was climbing on and the tube got pulled out. The second time was pretty much the same. I was upstairs, Donny & the kids were downstairs, the tube got pulled out, and Raya walked around for a couple minutes leaking an orange mixture of formula and a smashed cracker she found in the bottom of her sister's lunch bag (gross, I know) before somebody finally noticed it. Then I put the tube back in with one hand while I used the other hand to try and keep Raya from sticking her finger in the hole. I'm sure it was quite the sight to see but my camera was upstairs and I was out of free hands anyway.

Today takes the cake though. This was the first time it's ever happened in a location other than our house. The kids got out of school early today so I had to wake the girls up from their naps (for cryin' out loud, WHY do they always take such good naps on early out days?!?) to go pick the kids up at the bus stop. Raya was connected to her feeding pump and I was in a hurry since I had waited until the last possible minute to wake them up, so I didn't bother to look and see if the pump was actually running or if it was between intervals. Since Kaida was still groggy and neither one of them had shoes on, I rolled the windows down & left them in the car (don't worry, it was 70 degrees and I was 20 yards away) while I rounded up the kids.
I was talking to a friend about some issues she's having with her insurance company (since I've spent so much time dealing with insurance crap) and Ashtyn asked me if she could get the girls out of the car. I told her not to, and not 2 minutes later, she yelled, "MOMMY! Something happened!" so I turned around and went to see what was going on. When I got to the car, Ashtyn had a panicked look on her face and Raya was standing on the sidewalk with formula GUSHING out of her stomach (she had JUST finished a 225ml feed about 10 minutes before). Ashtyn was babbling something about how she had accidentally gotten the tubing caught on the seat of the car and the tube got pulled out. (I restrained myself from getting upset with her for disobeying me since she was already freaking out anyway.)
It only took a few seconds for Raya's clothes to be soaked with whatever had been in her stomach. I didn't want my car to smell like that so I put her on Cole's jacket on the picnic table, took off her wet pants, and used them to soak up what was coming out while I dug around in my bag of medical supplies that was in my purse trying to find the right syringe. I knew it wasn't there though. It was in a plastic baggie with a spare G tube pinned to the bulletin board in the kitchen in case there's ever an emergency while she's at home with the respite provider. Since none of the other syringes I had were the right size to deflate & reinflate the balloon, I yelled to the kids to get in the car and tried in vain to tape gauze over the hole to keep the mess to a minimum on the way home. (now that I've done a whole big post about all the different types of medical tape we've ever used, the only kind I had was one that is useless when it gets wet). I'm sure it was a memorable trip to the bus stop for all the kids' friends and their parents.
The best I could do was to pick her up with Cole's jacket wrapped around her with the sleeves tied around the front of her to hold her pants against the hole which was still oozing like crazy. I strapped everybody in and crossed my fingers that the tube would go back in when we got home.
Since we had such a lovely view of the hole (aka stoma, if you're being technical), I decided to take a picture in between attempts to get the tube in:
And yep, there were multiple attempts. I tried once and the tube just bent over like I was trying to jam it into a solid surface. Suddenly the hole looked very tiny and the tube looked huge. Fortunately, when I took it a little bit at a time, it slowly went in and by some miracle Raya didn't move while I was doing it. She was kind of fascinated with the whole process but then it started hurting her a little and she started yelling at me and grabbing at it. I told her she'd better hold still because it would hurt a lot more if we had to go to the hospital to do it!
After that little ordeal, she started asking for sour cream again so I put her in the high chair with about 4T of sour cream. That turned out to be a mistake. Evidently she needs to have her sour cream 1T at a time or else she gets too distracted and paints her face, arms, hair, the table, and somehow the back of the chair that her high chair is strapped to. She ate about 2T of it and aside from a few pieces of dry cereal, that was it for the day. Nowhere near where she was yesterday, but that wasn't too surprising. She seems to have a pattern of having a really low calorie intake day right after a really good day.
We shall see what tomorrow brings. At least I can {almost} count on her eating a few bites of sour cream (since there will be Mexican food at our Thanksgiving) and maybe nibbling on a roll, and possibly plowing through any unattended plates and/or cups. I will be putting on my germophobia blinders and crossing my fingers that she has a good day. :)

Tuesday, November 22, 2011

Still eating sour cream

I'm not going to say that Raya likes sour cream because if I do, then tomorrow she'll hate it, but she's now been eating it for a little over 2 weeks. I haven't given it to her every day because I didn't want her to get tired of it, but she's been pretty consistent with wanting it when it's in front of her and she hasn't started spitting it out & saying that it's yucky yet. And that, my friends, is huge. :)
Tonight she was crying so I picked her up and asked her if she wanted some dinner. She said yes and then said, "Ah-dah BEEM!"  (translation: I want sour cream!) So of course, I indulged her. :)
I started her out with 2 tablespoons (which equals 1 ounce, by the way) and a few minutes later, she was asking for more "dah-beem". She makes me laugh so hard when she asks for it sometimes because she waves the spoon around in her hand and the way she says "dah-beem" reminds me of the part in Forrest Gump when they're in the hospital and Forrest asks Lt. Dan if he wants some ice cream. :) Anyway, she ate the first 2 tablespoons and asked for more, so I kept giving her more a tablespoon at a time until she started painting herself with it. When all was said and done, she ate a total of (hold on to your hats) 7 tablespoons! That was easily the most she's eaten of anything since she went off of a medication in September and got knocked for a loop. She ate other things today too. This morning, she mutilated a couple of slices of bread and when I pieced them back together, there was about 1/3 of one missing. She also ate about 5 crackers and some dry cereal. All together, she had almost 200 calories today, which is VERY encouraging. Her runny nose is getting a lot better so maybe the periactin is starting to work for her.
Speaking of crackers, the little stinker got a hold of the brand new box of wheat thins that was sitting on the counter (apparently still within her reach) yesterday afternoon:
She doesn't look sorry at all, does she. :)

Her physical therapist came this morning and we talked briefly about the results of Raya's recent assessment. There were 3 areas where she fell behind a little bit. It would be nice if I could remember them. :) There was one area where she was at a 22 month level, so that's close enough to normal that we're not really worried about it at all. In the other two areas, she was at a 17 month and 18 month level, so about a 6 month delay. That actually made me feel a little bit better because we're not around very many kids Raya's exact age so sometimes I start to doubt if there's really any delays and wonder if we're wasting our time continuing with PT, but hallelujah, abnormal test result, we're not wasting our time. :)
One of them had to do with object manipulation (ball skills, etc) and one had to do with being able to hold herself in certain positions or play in certain positions or something like that (there's a lot more to it but I can't remember now). One of them was a little bit skewed because of the way the test is written so it made her look a little more delayed than she really is but she's still not quite up to where she should be at this point on it. Overall, she was classified as "mild delay", which was pretty much what we expected.
I've definitely noticed now that we're doing PT every other week instead of every week, Raya's legs and feet start to get REALLY tight by the time her PT comes again. Today, she also had some tightness in her neck that hasn't really been an issue for a while. At the annual review with our support coordinator on Friday, she was asking me what our goals for PT need to be for the next 3 months and I had no idea what to put down so the doubts started to creep in again. After today though, I'm feeling better about things and I'm glad that we're still moving forward with PT because it IS still helping her. She sees the orthopedic specialist next week to see if there's any need for bracing or orthotics of any kind (which there won't be). I'm fully expecting it to be another one of those appointments where we walk in and the doctor looks at her and tells me how good she looks and scratches his head as to why we're even there. :) 

Thanksgiving is only 2 days away and it will be a far cry from the Thanksgiving we had last year. Kaida woke up sick that morning so she and Raya and I stayed home while Donny took the 2 older kids to the family gathering at his parents' house. As much as I would have liked to be there, I was a little relieved that I wouldn't have to wrestle with Raya at someone else's house, clean up her puke off of someone else's floor, try to remember to bring everything she'd need for the weekend, and try not to feel sad that my 1 year old was still on elemental formula and gagged at any attempts to feed her solid food. Holidays and events that revolve around food hurt when you have a tube fed child. It's hard to see everybody else's kids eating and not know when or even IF yours will be able to. Even though we still have a long way to go, this year will be MUCH better than last year and Raya might even take some bites. Since we'll be eating Mexican food and traditional Thanksgiving food, there should at least be some sour cream there. :)

Sunday, November 20, 2011

Thankful to be where we are

This evening, I got a text message from a friend asking me what kinds of things were helpful to me when Raya was in the hospital. When I asked her why, she said that her friend's daughter had just been diagnosed with leukemia and was in the hospital and she couldn't think of what to take her. I gave her a few suggestions (snacks, book/magazines, chapstick, shampoo & conditioner, a notebook & pen, etc.) and told her a few things that I wish I had known back at the beginning about being in the hospital with a child.
As I was thinking back trying to remember what helped me or what was nice to have at the hospital, I couldn't stop the tears from filling my eyes because although I have NO idea what this poor family is about to endure, I've seen enough to know that it will be a hard fight and they will never be the same. Memories of each of Raya's hospital stays have been flooding my mind and I'm realizing that there are still some things that I'm not completely "over" that will take time. I learned a LOT, both good and bad, from each hospital stay.
The first one was overwhelming, exhausting, scary, and I just felt like I was in a whole other world. I was trying to soak in all the new medical terminology I was hearing and remember everything that the doctors & nurses were teaching me about tube feeding and what might possibly have been wrong with my 2 month old baby, and I was doing it on very little sleep. On the bright side, I felt a huge relief just knowing that we were working towards finding out what was wrong with Raya and how to help her feel better & start growing. Even though a feeding tube can be a real beast in a lot of ways, that little yellow tube in her nose was like a big soft security blanket to me because I KNEW that no matter what, I could get her medicine and formula into her. (KEEPING it in was another story. :)
January 2010
 The second one caught me by surprise. I had been told to expect her to be in for 24 hours when she had her G tube placement surgery but after spiking a fever shortly after waking up from anesthesia, having difficulty with pain control, fevers off & on, and not tolerating feeds at all, 24 hours turned into 5 days. It was SLOWWWW. That was the hospitalization that taught me that nurses sometimes need to be reminded to give patients pain meds on time (and as long as it's done nicely, they don't mind being reminded) and that I should never let an overconfident resident screw up my kid's feeding schedule when I know that his plan of care will not work for her. In other words, hospital personnel need parents to be their child's healthcare advocate in order to ensure that all the patient's needs are met and nothing falls through the cracks. This means speaking up when you have a question or when something is bothering you but doing it in a respectful and considerate way, and making a concerted effort to learn how to take care of your child's needs once they go home.
August 2010
I think the second hospital stay helped prepare me for the third one. I really hadn't expected to go back that soon, and I had even packed an extra bag of clothes in the car thinking that since I had it, I wouldn't end up needing it.  Ha ha. And you know you're spending too much time there when the cleaning ladies and cafeteria people recognize you. :)
Her third stay was because of bleeding in her stomach, an increase in her vomiting, just an overall decline in her condition. Once again, the doctor had said she just wanted Raya to have gut rest for 24 hours on IV fluids and get a GJ tube placed, and once again we ended up being there longer. After 4 days, her doctor was talking discharge the next day but then things took a turn for the worse and we were there for 15 days.
The low points of that hospital stay are some of the lowest points of my life as a parent. At times, I literally felt like a prisoner with no idea how long the sentence would be. Dramatic, perhaps, but when you've been living in a 3 foot by 6 foot space and eating cafeteria food for days on end where you never get more than an hour or two of sleep without being interrupted by some machine beeping, EVERYTHING is dramatic! :)
I've mentioned before that we have always felt blessed that Raya has never been in an imminently life-threatening condition before, but during the 2 week hospital stay there were times where we doubted that the GJ tube was going to work for her. If the GJ had failed, the only thing left to try would have been TPN (IV nutrition), which is very invasive, complicated, and carries a lot more risks long term. Luckily, it never came to that.
There were times when we just plain had no idea how long we'd be there and it didn't look like we were leaving anytime soon. This was also the time when I lost all remaining naivety about infectious disease and hospital-bourne illnesses and became a complete and total germophobe. Let it be known that hand sanitizer does not kill ALL germs/bacteria/spores/etc. Again, not to be dramatic, but as soon as they told me that her test for c. diff came back positive, a switch flipped in me and I will never be the same. I suddenly couldn't look at any surface in our hospital room without imagining squirming bacteria crawling all over it (you know, like in the Lysol commercials) and it has taken me a long time to let go of some of that. Even though I knew that it had nothing to do with Raya getting c. diff, I was furious at the people that I had seen break protocols for working with the non-contact patient that had been put in Raya's room in the middle of the night (which I was also furious about) and frustrated that there was absolutely nothing I could do to take back what someone had done that passed c. diff to her.
During that hospital stay, I finally started to get over my feelings of responsibility to make everyone's jobs easier and be nice to everybody and I learned that sometimes in order to get the attention that is needed and deserved, it is completely OKAY to be the squeaky wheel, especially when your child's health is on the line. I do believe that most medical professionals have their patients' best interest at heart, but ultimately they have a lot of patients to attend to and nobody is as invested in my child's health as I am.
On a lighter note, I also finally realized that when the doctors & nurses aren't spending much time in your room anymore, that's a GOOD thing. :)

October 2010
The fourth one was completely different than the other 3. For starters, it required 2 very long airplane flights, catching vomit in a barf bag while reassuring onlookers that she really wasn't sick, and of course thorough pat-downs & examinations of all of the liquids & the feeding pump we were traveling with instead of a nice little 45 minute drive. :) Second, it was scheduled and we were excited to get the testing done because it meant that MAYBE we would get more answers about Raya's health. As important as the trip was, it didn't make me feel any less guilty about leaving my other 3 kids with other people yet again while I was at the hospital with Raya. This stay was the first one where we had a private room and I had mixed feelings about that. Some of the roommates we've had made me WISH we had a private room, but it was really dull and lonely being in the room all by ourselves. Since we were there for testing and not because of an illness, we were at the very bottom of anyone's priority list so if Raya needed anything at all, I HAD to call the nurses' station because it was rare for anybody to pop in right when we needed something. I didn't mind that at all though since we knew exactly how long we'd be there. :)
It was exhausting because of the 2 hour time difference, being there alone with Raya, and keeping her happy in a hospital, which by then she was smart enough to understand and hate. :) On the other hand, since there were very few unknowns except for what the test outcomes would be, I was much more relaxed and not nearly as stressed. (that could have had something to do with sleeping at the Ronald McDonald House instead of the hospital couch though. :) I left Ohio feeling relieved that it was over but disappointed that we didn't get any concrete answers or specific direction to go in. That was when it finally started to sink in that sometimes there are just no cut and dry answers and some things that you would like to be black and white will never be anything but a hundred shades of gray.
December 2010
Now here we are almost a year later. As turbulent as 2010 was for us, 2011 has been that calm. The people who spent almost as much time with my kids as I did in 2010 have hardly seen them at all in 2011. :) She hasn't thrown up since May (except for when I've fed her too fast) and my washing machine and I have appreciated the vacation from cleaning up vomit and other unmentionable bodily fluids. (it's no coincidence that "bile" rhymes with "vile") Our crazy schedule of doctor & therapy appointments has condensed down to 3 a week most weeks and 2 of her therapies are at home. We haven't been to the hospital since June when she had an endoscopy, it's been almost a year since she was admitted last, we've only had to do weight checks once a month and see the GI doctor every 2 months, we only see neuro once a year, we just decreased PT to every other week, and the girl can be in the presence of food without gagging now. :)
In other words, we're no longer in crisis mode doing damage control, we've settled into a routine, and we're used to life as we know it. We're used to it and dare I say that we're comfortable with it. Nobody is immune to challenges and all that could change in the blink of an eye, but rehashing some of the things that have happened in the last 2 years in light of hearing about this family who is facing leukemia has really reminded me how good things are now and I am SO thankful to be where we are now and so far ahead of where we were a year ago.
October 2011

Thursday, November 17, 2011

Boring update with no pictures

Well, in spite of my best efforts to quarantine Raya and keep her as germ-free as possible, she has been nothing but a fountain of nasty green snot for the last 3 days. The only places she went outside of the house last week were the fabric store and the pediatrician's office and I have my opinions about where she picked up whatever she's got. I absolutely dread taking Raya to the pediatrician's office. Nobody pays attention to the separate "sick" and "well" waiting rooms and they put well kids in the same exam rooms that the sick kids have been in, so it wouldn't matter if they did. It's that time of year when Crazy Mommy comes out and starts carrying a baggie of Clorox wipes to sanitize public places before I let anyone in my family touch anything. I'm only half joking, just ask them.
Aside from the nasty green snot, Raya's had some pretty good days lately. She had a really productive feeding therapy session on Tuesday and I probably learned more at that session than I have with any other that we've had in the 18 or 19 months we've had feeding therapy. Then the next day, Raya wouldn't eat a single thing until I let her chew on a pizza crust at dinner last night. One step forward and two steps back. We started her on Periactin/cyproheptadine last Saturday to hopefully stimulate appetite but so far, I'm not sure that it's done much for her. The timing of her gross runny nose didn't help, I'm sure. It might be helping though because normally I'd expect her to quit eating altogether while her nose is stuffy since that makes it harder, but she's still eating goldfish & sour cream. :)
Most of the time, I don't allow myself to dwell on the things that frustrate me with Raya. There are certain things that I will probably never understand about why things have gone the way they've gone with her. More specifically, I don't understand the reasons why her stomach that used to convulse at the mere sight of certain things and could only handle an ounce or two of formula per hour (not to mention the 9 1/2 months that we didn't feed her stomach at all) can suddenly handle a bolus feed of 7 or 8 ounces at a time with no problem. I'm trying to just be happy about it and embrace it without allowing myself to feel like I'm waiting for the bottom to fall out but it's human nature to want to know why. When you get SO used to things being a certain way it's hard to accept change, even positive change, especially when it comes on quickly with no explanation. (that applies to most facets of life, not just Raya's stomach! :)

At our last visit with GI, Raya's doctor and I set a goal for Raya to be getting 350 calories a day from real food, and ultimately for at least 180 calories of that to be food that she's eating. Some days I have to not think about that part or it makes me want to cry. You never realize how few calories are in certain foods until you're desperately trying to get your 2 year old to eat 180 calories' worth of SOMETHING. I have yet to hit 350 calories from food in one day and she's been nowhere near 180 by mouth but I've had some days where I've made it to 225, which replaced one of her 4 pump feeds on those days. It's really difficult to blend together real food that's liquid enough to go through a tiny little feeding tube, has enough calories, but is a low enough volume to not make her throw up. I really just need to sit down and figure out a few different options that fit Raya's food tolerances and meet the calorie & volume needs too. I was pretty excited yesterday that the concoction of kefir+avocado that I mixed up for her had enough calories and low enough volume to replace one of her pump feeds. She tasted a couple bites of it too and didn't seem to mind it so that one might be a keeper. :)
Now that we are putting some real food through the tube, I'm also starting to have concerns about possible delayed gastric emptying again. I hope we don't find ourselves going down that road again but for now I'm trying to keep an eye on things & periodically checking the residuals before I start another feed.
I've also had to resign myself to the fact that for now, the foods Raya does choose to eat might gross me out (like plain ol' sour cream) or they might not be very healthy (a little pile of goldfish crackers) but since she gets a minimum of 650ml of formula per day, she is still nutritionally complete so it's not a huge deal if the calories she chooses to eat aren't from nutritious sources. I have to keep reminding myself that toddlers who eat don't eat 100% nutritious food either and it's okay if her diet isn't perfect. It goes back to what I said before about when you get used to things being a certain way, it's difficult to change. I've gotten so used to everything about feeding Raya being so scientific and precise that it's hard for me to let go of that precision and perfection and let it be what it will be.
Hopefully the gross nose will clear up soon so that we can see what, if anything the periactin is doing for her. If it doesn't seem to be helping, we'll increase the frequency to 2 doses a day instead of 1 and see if that changes anything. In the mean time, we're going through Kleenex and hand sanitizer faster than we can say Gesundheit! :)

Monday, November 14, 2011

Adhesives Part 2: Adhesives & Taping Techniques for G and GJ tubes

As I mentioned in Part 1, when we started out on our feeding tube journey with Raya, we had never heard of things like Duoderm, Hypafix, Tegaderm, Mepilex, etc. etc. We had no idea that there were SO MANY different kinds of adhesives that could be used for every aspect of tube feeding, let alone which ones were better for what functions. (In case you missed it, ~here~ is the link for Adhesives Part 1: Adhesives & Taping Techniques for NG/ND/NJ tubes.)

Hypafix has been one of our favorite adhesives for Raya's G and GJ tubes. It's a fabric tape that is very soft and breathable, which is one of the reasons it's so great. It's thin and flexible, and has a strong adhesive but is still gentle on the skin. Being a cloth tape, it is also very strong and doesn't rip apart as quickly or easily as others, and because of that, it has to be cut with scissors.
When she got her first G tube (a non-balloon Bard button), we had the frustrating challenge of a button with no locking mechanism, and with a 9 month old who was on continuous feeds at the time, it wasn't pretty. For 2 months we floundered around with a couple of different options that more or less worked but weren't very kind to her skin. It wasn't until she was admitted to the hospital to get her GJ tube that we were finally reintroduced to Hypafix, and we've been using it ever since. Because GJ (gastrojejunal) tubes have the jejunal portion that goes through the stomach and into the small intestine, they have to be kept still and not rotate or the J portion may dislodge and coil back into the stomach. Hypafix worked well for us because it holds well for up to 4 or 5 days, is breathable so it minimizes skin breakdown, and it is much gentler on the skin than many other adhesives. Here's how we use it:

(In this picture the GJ had been changed and the G port was on top & J port on the bottom.)
When she had her GJ tube, we kept the extension tubes plugged in around the clock because she was being fed & drained around the clock, and because having the extensions taped on securely with Hypafix kept the tube from rotating. An added bonus of keeping the tube from being able to move was that she has not had a problem with granulation tissue in over a year. :)

Microfoam (by 3M) seems to be one of the lesser-known adhesives. It's a soft, thick, pliable foam tape that comes in different widths. (we used 2 and 3 inch) After Raya had gotten her G tube and before we rediscovered Hypafix, we were having a horrible time finding a tape that would stick to her well enough to hold the non-locking Bard extension tube on without ripping her skin off when it was removed. Here's another view where you can kind of see how thick it is:
Our wonderful GI nurse gave us a couple of partial rolls of Microfoam to try and wouldn't you know, it was fabulous. It held the extensions on but was gentle when we took it off. It could also be repositioned a little if I accidentally stuck it where I didn't want it, unlike many of the others. The down side of Microfoam was that it's not very breathable and evidently very difficult to come by. I made several calls back and forth to the insurance company and home health before finally being told once and for all that our insurance wouldn't cover it because it's considered a wound care product and apparently, a stomach wound in the form of a newly-placed G tube doesn't count. :) I really liked the microfoam though and if our insurance would have supplied it, we would have kept using it.

Micropore is the absolute hands-down winner of the Most Versatile & Useful Tape Award. If there was such a thing. :) It is a light, thin, breathable paper tape that holds well depending on what it's being used for and doesn't leave sticky residues like some of the others (durapore). It's also very easy to remove. If you soak it with water for a minute or two, it will come off without taking skin with it. Micropore is our go-to tape for just about everything, including the kids taping notes to each other's doors and Donny making the kids "boxing wraps" to protect their knuckles when they're punching the focus mitts (ask me how thrilled I was about that one :).

We started using it when Raya had gotten her first G tube and we couldn't get home health/insurance to provide us with the Microfoam tape. A good friend of mine had just gotten a G tube herself and suggested trying paper tape, so I bought a roll from the drugstore just to try it out. It worked like a charm!
Here's how we used it when she had her Bard non-balloon button with no locking mechanism to keep the extension tube in:
I'll explain. :) At that point (2-3 weeks post-op) Raya's stoma was leaking profusely because it wasn't healed yet and the Bard button was the wrong size, so in order to keep the leaking to a minimum, we had to keep 2 packets (4 pieces) of gauze around it which we taped down with Micropore. (the redness & irritation in the picture is because we had to change the gauze 2-3 times a day so she was constantly getting tape pulled off) She was fed for about 20 hours a day at that point so the extension had to stay in pretty much all the time, so we would put it in, bring it over to the side, put an X of tape across the tube directly over the button, and another X of tape on her side to keep the extension secured. (This is what we liked using the Microfoam for, and Hypafix would have worked great as well.) The Micropore definitely wasn't the strongest tape for holding the extension tube down to her side, so ultimately we stopped using that and started using Durapore, which I'll explain later. :)
Last but not least, one of our current favorite uses for Micropore is this:
(oops, that should say Micropore, not Medipore)
For a long time, we taped the gauze down with Micropore. Then I finally realized that if I just put the piece of tape across the opening on the gauze and folded it over the back, I wouldn't have to keep ripping tape off of her stomach every time I changed the gauze. She's glad I figured that out. :)

Durapore is a two-edged sword, in my opinion. If you need something to stick and stay put (and it's not going to get wet), then Durapore is your man, BUT if you want any of your outer layer of skin to remain intact when you remove it, Durapore is not your man. Durapore is a silky fabric tape that looks a lot like grosgrain ribbon, but it can be torn by hand easily and is fairly breathable. It is VERY sticky, but doesn't hold up well when it gets saturated.
The only times I have ever put Durapore on Raya's skin have been moments of desperation when I had run out of other options. It is NOT gentle on skin at all when it's removed and the adhesive leaves residue much more so than the other kinds of tape we've used. As I mentioned before, the Micropore wasn't working for keeping the extension tube securely on Raya's side during her continuous feeds so I NEEDED something stronger, couldn't get more Microfoam, and in desperation resorted to Durapore. The 2 inch wide Durapore was great for holding the extension down. It held great, didn't peel for a couple of days at a time (sometimes more, sometimes less) and kept things pretty stable. However, when it did start to peel or when I needed to take the tube off, the tape was SO rough on her skin and it was awful. The other drawback was the amount of sticky gunk it left on Raya and on the tubing.
Our favorite uses for Durapore are:
*Taping NG tubes to the back of clothing (see this post for more details)
*Mailing packages to cousins (I know, I'm wasteful)
*Stocking the first aid kits for emergencies
*Taping the medicine port on the Mic-Key extension tubes shut so it doesn't pop open and leak all over her bed!! (this is currently our ONLY use for Durapore)

Mepitac Silicone Tape

Mepitac (by Safetac Technology) is a fabric silicone tape that is both hypoallergenic and breathable. It is very gentle on skin and can get wet without losing its ability to stick. I was told by one mom that her son has to have the tape on around the clock every day and Mepitac is the only tape/adhesive they've found that works for him without irritating his skin.

We have tried a couple of alternatives for plain ol' tape as well. This summer, I was getting SO frustrated with how often I was having to peel tape off of Raya's poor, sore little tummy and replace it so I started looking around for other options. I found 3, tested 2, then life got crazy and we went on vacation and then went back to a G tube so I never tested the 3rd. Here they are:

Hollister Tube Attachment Device
When I first heard about it, I was excited to try it out. I emailed the company and they sent me a sample, which I greatly appreciated, but I was disappointed when I got it. First of all, it's HUGE. Second, the adhesive on it is basically a thick non-textured version of Duoderm so I wasn't sure how well it would stay on. Third, the "attachment" part of the device was basically a zip tie with a plastic part that you can squeeze to release the zip tie to take the tube off. Here's how it looked in action:
It pretty much did the job, but it was big. The plastic part stuck out almost as much as her Mic-key GJ tube, which is huge, and there was the tail of the zip tie that I felt was in the way. Anyway, long story short, I decided the Hollister Device wasn't worth the trouble and we went back to Hypafix tape. Then a family member who does trainings for Bard Stat-lock devices suggested looking into their line of products so that's what we did next.

Bard Stat-Lock Device
(somehow I managed to not take a picture of it when we were using it so this is the picture from their website)
This is VERY similar but not exactly the same as what the very nice Bard representative brought to my house. She came over one afternoon and showed me what they had available that might work for our purposes and gave me several samples. The Bard product is DEFINITELY a high-quality product. It comes with a specially formulated skin-prep wipe to help the adhesive adhere to the skin (can I use those words in a row like that??). It has a very soft, silky fabric and the adhesive is VERY strong. So strong, in fact, that it has warnings on the package not to attempt to remove it without rubbing alcohol. When you do use rubbing alcohol though, it comes off really well and with minimal skin irritation, if any.
The skin prep has some ingredient in it that forms a barrier and protects the skin, which is nice, but it also makes it very easy to slip the extension tube into the silicone grip. Once it's in and the little plastic clip has been closed, it stays securely in place.
The advantages of the Bard device were that we could unhook the extension tube from the GJ or G tube button without having to peel tape off of Raya's skin. The Bard made this MUCH easier than the Hollister.
The drawbacks. First, again this product is very large. We trimmed it down like we had with the Hollister device, but it was still really big. The actual plastic clip is pretty large too and stuck out almost as far as the GJ tube as well. Second, after 3 or 4 days, even though the adhesive was still securely fastened to Raya's skin, the plastic clip that was holding the extension tube in place started to peel away from the adhesive layer and once that came off, it was useless.
Once again, I decided that this type of device was not practical or necessary for what I wanted.

(this is the one we haven't tried so this is the picture from their website)
The third and final alternative attachment device that I've heard of is the Grip-Lok. It's made by Zefon International. According to their website, Grip-Loks are latex-free and made using hypoallergenic tape (which looks a lot like Hypafix to me) and are breathable and gentle on skin. They secure to the skin with the adhesive tape layer, and then have a self-sticking Velcro-type layer to secure the tube with. Another feeding tube mom told me that her son (who has severe eczema) uses Grip-Loks for both extensions on his GJ tube and that they are great for being able to remove the tubes but leave the adhesive in place.

Zefon Medical also makes a Grip-Lok for securing NG tubes. Here's what it looks like:

The Grip-Lok NG product is a hydrocolloid adhesive (like Duoderm) with a self-sticking layer to secure the tube. I wish I had known about this when Raya had her NG tube. It looks like a nice, tidy version of what I tried to do with the Duoderm & Tegaderm. :)

Other Adhesives
There are a few other miscellaneous adhesives that are commonly used with G and GJ tubes.

Mepilex AG
Mepilex AG is an anti-microbial foam wound dressing that releases silver into the open or raw tissue underneath it. In the case of G, GJ, or J tubes, it is cut into a small square (about 1.5x1.5) and fitted around the tube in order to absorb drainage and help to heal and protect granulation tissue. This is what granulation tissue looks like:
(This is when it had JUST started so it wasn't at its worst yet, and her tube was leaking horribly hence the wet stomach.)
Mepilex is a good alternative to treating granulation tissue with silver nitrate sticks, which I've heard is very painful. I've also been told by several people that they use Mepilex all the time around the tube instead of using gauze or any other type of pads since it does absorb wound exudate. Mepilex only adheres to dry tissue, so it won't stick to the granulation tissue, which is painful and bleeds easily.
We tried Mepilex with Raya's granulation tissue and it was helpful but there was SO much leakage from around her G tube that we had to go back to using just gauze in order to absorb everything. And once again, the insurance wouldn't cover it since it was considered a wound care product so we couldn't get more once we used the samples from the surgeon.

I really don't have anything good to say about Transpore. I only included it because I had it in the medical supply bench. It's plastic. I don't like it. I honestly can't think of a good use for it. I've only used it when I was desperately in need of a piece of tape and couldn't reach any other more suitable tape. That's all I have to say about that.

StatLock Foam Strips

StatLock foam strips are FABULOUS!!!! They hold strongly but then when you're ready to remove them, all you have to do is grab one end and stretch it out until the whole thing pops off (like the 3M adhesive hooks that they advertise for hanging Christmas decorations). When the nurse from Bard came to bring me some of the StatLock devices, she pulled these foam strips out and stuck one to my arm, which is rather hairy for a girl. :) Then she showed me how to remove it, and to my absolute delight, it didn't hurt!
The only down side to these fabulous little foam strips is that I have not yet figured out what a good use for them would be.

Okey dokey, that concludes my 10 page term paper on adhesives for feeding tubes. :) I hope someone finds this helpful!

Sunday, November 13, 2011

Raya's birthday "meal"

Raya's 2nd birthday was much easier for me than her first birthday. Last year was very bittersweet for me. I knew she wouldn't be eating or even tasting her birthday cake last year, but it was still hard for me when the day came and she would barely even touch it.

This year was MUCH different for us. We're still not where I would like to be at this point, but we're definitely ahead of where we were a year ago. This year, she actually had some birthday "breakfast" of little spoonfuls of her big sister's abandoned bowl of cereal milk:

And some birthday dinner:
Little sips of lemonade:
Sour Cream!

She had a couple little bites of her cake (which later dribbled out of her mouth in the form of chocolate slobber:)

It was a MUCH better birthday! :)

Thursday, November 10, 2011

Happy 2nd Birthday, Raya!

It's hard to believe that this little bitty girl:
Raya 1 day old, ready to go home from the hospital
 is now THIS:
She's saying, "Wah WEE-ah?" (Where's Raya?) Followed by...

I read a quote on this blog yesterday that described how I feel about my experiences so far as Raya's mother:

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.”
Orson F. Whitney

The challenges that we've faced with Raya pale in comparison to many people we have come to know over the past 2 years. I have always felt blessed that there has never been a point where we wondered whether or not Raya would survive. Fortunately, people can live without a fully-functioning stomach and Raya's is working fine now. Even though our trials have not been an immediate matter of life or death, they have been significant for me and have stretched me in ways that I didn't really want to be stretched. :) I have definitely had opportunities to develop patience, faith, fortitude and humility. There have been high points and very low points, and through all of it, I have felt my character being built, my heart being purified, my soul being expanded, and I feel like I am much more tender and understanding of others in similar situations. And of course I HOPE that I am becoming who my Father in Heaven wants me to become. This is definitely an education that I could never have gained in any other way but through the "sorrow and suffering, toil and tribulation" of the past 2 years  (although I feel like those words are all a little melodramatic for our situation :) and I am grateful for it. I have no doubt that Raya is destined for great things in her life and I am enjoying watching her grow and develop and overcome the obstacles in her life with a smile on her face. Happy birthday, Raya!

(ps for the emotional well-being of your mother, please at least have ONE bite of your cake this year. :)
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