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**Disclaimer**

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


Wednesday, February 26, 2014

Our most eventful GI visit yet

Raya was supposed to have a GI follow-up on February 3rd but decided to get hospitalized instead so she could get out of it. (really I'm sure she would have preferred the 1 hour GI visit) We had to reschedule it but couldn't get in before baby sister was born so we had to wait until yesterday. I'm SO glad I scheduled it in the afternoon because I really haven't seen the hours between 9-noon since the baby was born. I just plain can't stay awake then and having a newborn gives me an excuse to sleep so I sleep. :) While I slept yesterday morning, Donny took Raya to her OT & feeding therapy appointments. I love that she gets therapy and I love her therapists but I was ready for a break. :)

Anyway, I figured that since Donny was off of work, it would be a good idea if he came with us since he's never really been able to go to GI appointments. Not to mention that 12 days post-baby, I wasn't sure how much I'd feel like wrestling Raya all by myself. She gets a little bit rowdy at these appointments because of her anxiety (and boredom) so we packed up the 2 little girls and headed to the appointment. As I was getting Raya out of her car seat, the pump tubing got caught on the same stupid little thing it always gets caught on but for whatever reason, this time it just yanked her G tube right out of her stomach. Followed by a gushing stream of baked potato that was left over from her feeding therapy appointment. Awesome. And of course this was the ONE day that I hadn't been able to find her emergency kit to toss it in the diaper bag on the way out the door. I even thought to myself, Oh, it will be fine, we won't need it. HA. That's what I get. 

I found a paper towel in the car and wiped the potato off her belly and then she and I hurried as fast as my aching body could go into the office. Normally we have to use the automated check-in kiosk to check in for appointments rather than go to the front desk but this time I walked right up to the guy at the front desk and asked him to call the nurse and ask her if she could find us a syringe to put the tube back in with. THEN I checked in on the little automated kiosk. Our favorite medical assistant (well, one of them, anyway) took us back to a room and I laid Raya on the table/bed thing. I heard the nurse coming and when she walked in, she said, "Oh, Raya, it's you!" Of course then Raya had to tell her that Mommy accidentally made her tubie come out in the car. 

Any other time & place, putting the tube back in is totally not a big deal for Raya. Sometimes she gets a little defensive but when we're at home, it's totally not a big deal. However, all the way to the doctor's office I had been telling her that no, they weren't going to do anything painful to her at this doctor's appointment and that it was just her GI doctor, etc. She hasn't recovered mentally from her trip to urgent care and the hospital earlier this month so going to the same building that the urgent care is in and then having to get her tube put back in at an actual doctor's office was a little more than she could handle. It took 2 other people to hold her still for me while I put the tube back in and she screamed and cried. Super fun. Lucky for her, everyone at that office loves her and once we were done, they took her to the "secret prize drawer" and let her pick out not one but TWO toys, AND they gave her a Dum-Dum. It's time for everyone to stop giving her prizes for a while because now she expects them from everyone that she thinks is a doctor.

Once that whole ordeal was over, she bounced off the walls in the exam room for a while (which gave Daddy an opportunity to see why Mommy is usually pretty tired when we get home from these appointments) and then the doctor came in. As far as actual GI visits go, this was pretty uneventful, as in we didn't make changes to anything except lowering the dose of one med from 3x/day to twice a day. Well, really we just made the change official since I've been forgetting to give it to her the 3rd time so she's pretty much been on the 2x/day dose anyway.

The bad news that I completely anticipated was that she lost weight. Not much, but she did lose weight. I think she went from 15.2kg to 15.0kg. I knew that she had probably lost weight based on how sick she was at the beginning of the month and how long it took her to get back to feeling like her usual self and start eating again so it wasn't a surprise and I'm not worried about it. Because of the weight loss, we're going to do a weight check in a month just to make sure she's back on track. If she is, then we'll carry on with business as usual but if she's not, we'll make some changes.

That was pretty much it. If it hadn't been for all the excitement of the tube getting pulled out, it would have been a very dull appointment. :)

Tuesday, February 25, 2014

Pot, meet Kettle

 Oh, this child. She is quite a piece of work, let me tell you. The things that have been coming out of her mouth lately have left us speechless on many occasions. All of a sudden, she is the grammar police. Half of her sentences start with things like, "By the way..." and "Um, Mommy, didn't you know..." Neither of those things have nearly the impact in print that they do when they roll off the tongue of a sassy little redhead. Of course all of this is to be expected from a child who insists on sleeping in kitty cat ears, right?

She has been pretty funny with her baby sister. People keep asking me what Raya thinks of her and if she likes her. Truth be told, Raya does like her, but she doesn't have a whole lot of time to give her attention because she's so busy with all of the important things that 4 year olds do, like blowing bubbles, watching the same 3 episodes of Jake and the Neverland Pirates for the millionth time each, and playing with toys. 

Every now and then she asks me if she can feed her a bottle. It lasts for about 5-10 seconds before she looks at me and says, "Um, Mommy, my hand is just getting too tired. Can you feed her the rest?" 

On Sunday afternoon, Raya happened to be standing next to me and saw Piper spit up. It was a NORMAL sized baby spit-up. MAYYYYYYBE a teaspoon or less, and it all landed on a burp rag. A look of disgust came over Raya's face and she said, "Eew!! Mommy, she puked!" I was speechless. Completely without words for the child who made 18 months of my life a vomit bath. I now regret not having taken pictures of the many, many, MANY vomit messes she made or videos of her puking just so that she could have seen how gross REAL puke is. I laughed and told her that she was the pot calling the kettle black. Of course that only confused her and she told me not to call her that. I told her that Piper just had a little spit-up, not puke, and that puke is what SHE used to do all the time. Then I told her the story about the day when she was about 7 or 8 months old and I turned around after hearing her vomit and saw that she had grabbed a burp rag and was smearing it around in the puddle on the kitchen floor in what I could only assume was an attempt to clean up after herself. I knew back then that she would be a smart little cookie if she was already learning to clean up her own puke by mimicking what she saw the rest of us do several times a day.


It has been a lot of fun having a newborn in the house again. It might be a smidge more fun once she learns to latch on so that I can stop pumping, but I'm SO not complaining because I'm thrilled to pieces that she is willing & able to drink from a bottle, albeit slowly and with a lot of stopping to clear the milk from her airway. We will take whatever successes we can get when it comes to feeding these baby girls of ours! I have been ignoring & neglecting pretty much everything that doesn't absolutely HAVE to be done because this little girl won't stay a newborn very long and I'm going to soak up every second of her that I can. Even if it means that I'm a zombie.
As much as I hate to admit it, I probably am as tired as I look in the picture. It's worth it though. :) 

Tuesday, February 18, 2014

Special needs moments and trying to remember "normal"

It's been really great having a new baby in the house again. {I'm so, so tired though...} She's only been here for 2 days but I ♥ her and I wish I could just lay around and snuggle her all day long every day. 

We've had some funny moments that pretty much just illustrate how having Raya has shifted the way we all think. For example, the first time that Kaida saw her umbilical cord stump, she stared at it for a while and then made some comment about her tube.  (i.e. she thought the cord was a G tube) 

Today, I was using the breast pump and Raya walked in and wanted to know what I was doing to my tummy. I told her I was using a pump to get milk for baby Piper. She got her confused face on and said, "Um, that is NOT the same as MY pump, is it?" Um, no, no it is not. :) 


I had to take Piper to her pediatrician appointment this afternoon and Raya had to come with us because there was nobody home to watch her. As I was getting Piper undressed, Raya said, "Mommy, are they gonna put something in her bum?" Since the medical assistant was standing right there, I figured I'd better clarify for her that Raya was referring to when she went to the urgent care and had to get cathed for a clean catch urine specimen. I told her that nobody was sticking anything in the baby's bum, we just needed to take off her clothes so we could see how much she weighed. Bless that girl's heart, I wish she didn't know what any of that was!

At the end of the appointment, another MA was doing the heel stick for the second newborn screen. Raya watched intently and jabbered away at the lady, telling her all about when SHE got poked at the hospital and got "surprises" because the ladies poked her arm lots of times (points to inner elbow). At first the lady was trying to reassure Raya that even though she was going to poke baby sister's foot and that baby sister would probably cry, it wouldn't hurt her very much and she'd be okay. I'm pretty sure Raya was listening to her and thinking, "Duh, lady! It's just one tiny little poke!" 


It's a very different experience for both Raya and me to go to a doctor's office and not have it be for Raya. It's also really weird to have the doctor say that the baby looks great, is gaining weight like she should be, and they'll see us again in 2-3 weeks. I haven't heard a doctor say that since baby #2 in 2004. She lost 9 ounces by the time we went home from the hospital and has already gained 4 back. That's pretty freakin amazing for one of our kids. He asked if I had any questions or concerns so I pulled out my list. Ha ha. I started with the feeding difficulties. Miss P has her own set of issues in that department. She gulps and swallows a LOT of air, won't latch on anymore, aspirates, and the amount that's coming back up keeps increasing. We've made progress with the air swallowing by feeding her breast milk from a bottle with a slow flow nipple. She still does it, just not quite as much. What it comes down to is that she hasn't quite gotten the suck-swallow-breathe coordination down yet and needs to be slowed down when she eats. My plan is to give her a little more time to figure things out before we try breastfeeding again. I'm definitely not giving up on her yet. It took her oldest sister a whole month to figure it out so when she's ready, she'll get there. 

The appointment went well and I think this new ped will be a good fit for us. He spent a good amount of time examining the things that I asked about (i.e. possible tongue tie and...um...crooked bum) and told me that he didn't think there was any cause for concern with either thing. I think he also tried to make me feel like it would be okay if I didn't want to try breastfeeding again or wasn't successful at it. I have no intention of switching to formula unless we run into severe food allergy/protein sensitivity issues and/or poor weight gain issues again, but I appreciated his tone about the subject. 

In other news, Gram E left this morning to go home. We're sad that she couldn't stay longer. Raya was having a really rough night last night and ended up snuggling in bed with Gram E instead of her own bed or the couch. We will miss her. 


Thankfully we have another grandma that only lives an hour away so she's coming tonight to stay for a couple of days and help out! We could survive without help but for the sake of my sanity and the kids, we're very glad they were willing & able to help.


Monday, February 17, 2014

Baby Sister

I had started working on a FTA Week blog post for Friday while Raya was at school. Then plans changed and we spent the afternoon doing this instead:

I left Raya with her grandma at therapy and went to my weekly check-up. Then I went back to therapy, left the car keys with Grandma, and Donny picked me up to head to the hospital. About 3 hours later, baby Piper made her arrival! So far, Raya and all the big kids absolutely adore her!



Thursday, February 13, 2014

FTA Week 2014--Day 5: Hopes for the future

Today's topic: What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on?

 To be honest, sometimes it's hard to feel like spending the energy thinking about hopes & dreams for the future with a medically complex, tube fed child. (and probably more so at 39 weeks +6 days pregnant...) It is also difficult to set expectations when you have no idea what to expect and so much of the situation is beyond your control. Early on, my only hope for her was for everything to be "normal." I wanted her to stop needing medications to help her be comfortable, and I wanted her to eat and drink orally so that she wouldn't need a feeding tube anymore. I thought that it was realistic to expect for that to happen within the first couple of months, but as time went by and things got worse despite everything we were doing to try and make it better, I had to come to terms with the fact that it was not. At least not then.

I think one of the most emotionally difficult aspects of parenting a medically complex child is getting your hopes up for one thing or another to happen and then realizing that it just isn't going to happen the way you want it to. It is incredibly difficult to find a balance between having a healthy level of hope and giving up. As much as I do want Raya to someday wean off of her feeding tube, there is a part of me that just gets tired of the struggle. There is so much about her to try and understand so that we can try and work through it all, and sometimes it just gets exhausting and I don't want to do it anymore. 

One thing that I have learned is that it is healthy for me to set goals, have hopes, and even expectations, but that I also have to be flexible when it comes to things that are beyond anyone's ability to control. For example, there was a point where it looked like we were on a really good course with Raya's eating. She was trying new foods, eating decent amounts of the things she liked, and really just doing awesome. Then we found out she was allergic to pretty much everything she was eating and we had to stop letting her eat all of it. It was frustrating, but at the same time, we had to recognize that it was not a total loss. Just because those foods were taken away did not mean that we had to give up the oral motor skills and the desire to eat that she had gained. We just had to shift our focus and redirect our goals, and I think that's what special needs parenting is all about. There is a lot of go-with-the-flow involved and once I let go of my need for control and embraced that concept, things got less stressful for me.

On a more positive note, it is pretty incredible to look back at how far Raya has come. She has made SO much progress over the last couple of years. We've gone from a child who couldn't handle sitting in a high chair for more than 10 minutes, would gag at the mere sight of a spoon pointed in her direction, couldn't swallow water without choking, and vomited if anyone tried to put food in her mouth (and also for no reason at all) to a girl who actually HAS some favorite foods. There was a time in her life where I wondered if she would EVER ask for food and eat it, and she DOES! Today, she wanted a baked potato with butter (aka non-dairy margarine) for dinner and she ate a few bites of it. She asked for applesauce for lunch and ate a few bites of that. She asked for 3 potato chips for breakfast and ate all 3 of them. (and don't judge me for feeding her potato chips for breakfast. seriously) She likes drinking water now and most of the time, she can swallow it without coughing. She is willing to taste things and she loves going to feeding therapy. All of that is very exciting! 

Building on where Raya has gotten to now, here are the hopes that I have for her for this year:

1. That we will find more foods that she can eat that will not make her sick and that she'll be willing to eat them. 
2. I would LOVE to get her potty trained this year.
3. That she will get back to the point where she was eating enough calories per day to skip one tube feeding.
4. That she will keep all of the good habits she's developed, like drinking water, and continue to grow at a healthy rate.
5. Most importantly, that she will be happy as she continues to work on the things that challenge her.

The hopes I have for myself for this year are:
1. That I can find a balance with taking care of the needs of all of my kids and not allow myself to be overly focused on Raya.
2. That I can find more ways to prepare the foods Raya can already have and help her break out of the ruts she gets in with the foods she wants to eat.
3. That we can find more ways to incorporate her "safe foods" into our family meals so that there are more opportunities for her to eat out of the same pan/dish/bowl as the rest of us.
4. That I can learn more about the way her body works and better learn how to work with it so that we're not working against it.
5. To not obsess over every detail of the new baby's health & eating habits. (probably easier said than done but we'll see when she gets here!)

Wednesday, February 12, 2014

FTAW 2014--Day 4: Coping

Today's topic: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Without a doubt, I can say that there are at least 5 things that have made life with a medically complex child do-able. 

1. Education
I can't say enough about how important it is to learn everything there is to know about whatever medical problems you or your loved one are facing. (and Wikipedia doesn't necessarily count as a reliable source) Knowledge empowers you to become an expert on your child's health. I have been a stay-at-home mom since our first child was born almost 11 years ago. I've spent more time with each of our kids than anybody else has. In Raya's case, I think I've spent more time with her alone than I was ever able to with any of the other kids just by virtue of the number of appointments & hospitalizations she's had. When you spend nearly every waking moment of your child's life with them for the first couple of years, you tend to know everything there is to know about your child. In a medical sense, you are the connection between every member of your child's medical team. The more you know about everything that is going on with your child medically, the better you will be able to understand and facilitate coordination of care between providers.

There is also a certain confidence that comes with knowledge. The more you know about your child's condition, treatments, medications, diet, medical equipment, etc., the more comfortable you will be with all of it. This is not to say that you will necessarily LIKE all of it, but you won't feel as overwhelmed and daunted by things once you understand them more fully.


2. Connecting with others
Connecting with other people who have similar circumstances is possibly the single most helpful thing that I have been able to do over the past 4 years. In the beginning of Raya's medical journey, I knew one person who had a child with a feeding tube and considered myself lucky to even have that one person to ask questions to. We had a great doctor and she had an amazing nurse that probably got really tired of seeing my name pop up on the caller ID, but there were a lot of things that they couldn't help me with just by virtue of the fact that they had never cared for a tube fed child at home before.

There are a lot of ways to connect with other people. Depending on where you live, there may be in-person support groups for various medical conditions. Often, hospitals and clinics sponsor these types of groups. It is also pretty likely that with as many medical appointments as your child will have, you will come across SOMEONE in a waiting room that you will be able to connect with. You'll spot that familiar feeding pump backpack from across the room or hear it beep and think it's yours. The internet and social media provide easy ways for parents to connect with each other as well. Of course I'm partial to Feeding Tube Awareness's facebook page but there are a lot of really helpful pages and groups on facebook for just about every condition under the sun. 


3. Support from family & friends
Donny and I have been blessed to have family and friends who have helped out in whatever ways they could when we have needed it. It can be difficult for family and friends to know what to do to help, especially when they don't understand the medical condition or why certain things (like feeding tubes) are necessary. It's difficult to ask for and accept help, but letting people provide service to you helps them feel connected to you. If your friends and family are not supportive, seek out people who will be.


4. Sharing our story
When we were first starting out with tube feeding, I knew there HAD to be more information out there than what I was finding on Wikipedia. (WORST source of feeding tube information) At the time, it seemed like everybody and their dog had blogs about their families, and I soon realized that some of the most helpful information I could find was what I came across on the blogs of mothers of kids with medical issues. Most of the blogs I started reading were heart moms since a lot of heart kiddos have feeding tubes. It was like a whole new world opened up to me when I started reading about what the process of tube feeding had been like for other people. I was SO incredibly appreciative to have found people that knew what I was going through and were willing to share their experiences.

Of course I was part of the multitude of mommy bloggers, so it was only natural to continue blogging about what was going on with Raya. For me, blogging has been the best form of therapy. In the beginning, I started a separate blog for Raya because there was so much going on with her medically that it started to feel like it was taking over our family blog (which has since been pretty much abandoned, sadly) and I really didn't expect anybody but my out-of-state family to read it. Over time, I realized that it was a good way for me to share the same kind of information that I had been so desperately searching for back in the beginning of all of this, so I started trying to do that. Putting my thoughts into words has helped me sort out and process my emotions as we've gone through the ups and downs. Of course not everyone feels comfortable sharing as much publicly as I have, but it is very therapeutic to find an outlet for the thoughts and emotions that come along with this life, whether public or private. You never know who your story might help.


5. A sense of humor!


 The night that I brought Raya home from the hospital last week, I was STARVING so we drove through Panda Express. I almost forgot about the fortune cookie and opened it just for kicks right before I went to bed. I couldn't help but laugh when I read it. "Your sense of humor will get you through difficult times." Oh, you mean like when you're less than 2 weeks away from your due date with your 5th baby and your 4 year old spikes a 106 degree fever and gets admitted to the hospital for 4 days? Yeah. There are so many times in the last 4 years especially that I would have gone out of my mind if I hadn't been able to laugh about things. Tube feeding can lend itself to some pretty amusing situations. :)

Tuesday, February 11, 2014

FTA Week 2014--Day 3: Overcoming Obstacles

Cue another long and rambly blog post. :) Today's topic is: Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!

Raya has overcome a lot in the past 4 years. Some of it is directly related to tube feeding and some of it is an indirect result of the complete nutrition, hydration, and helpful medications she's been able to get through her tube that she would not have otherwise gotten. Here are a few obstacles that come to mind:

Failure to Thrive
FTT: one of the ugliest medical terms to fall on a mother's ears, no matter how accurate it may be at the time. Raya did not take long to fall into the category of FTT/poor weight gain. When you're spitting up and throwing up more than you're keeping down, it's very difficult to gain weight. When you're not gaining adequate weight as a newborn or infant, it's very difficult for normal brain development and physical development to take place. Babies who remain in the FTT category begin to miss important developmental milestones. Thankfully, we had been down a similar road with Kaida as far as difficulty gaining weight so we knew that Raya needed help, and thankfully, Raya's pediatrician referred her to a gastroenterologist. We will forever be grateful for Raya's GI doctor (and her wonderful nurses) for recognizing that Raya needed the intervention of a feeding tube. Within a couple months of using the tube, Raya was steadily gaining weight and was a MUCH more content and comfortable child even in spite of continued vomiting.


Vomiting
 (skip this section if you don't want to read about vomit...)


If I had to pick one thing that was the biggest obstacle she's overcome so far, it would be vomiting. Oh, the vomiting. It started innocently enough with just your average (or at least average for one of our girls) spitting up after every feed. Then she took it to a whole new level and started forcefully vomiting. I vividly remember the day that I had a nice pile of clean laundry on one end of the couch and after feeding her at the other end of the couch, she projectile vomited no less than 4 feet and made a direct hit to the clean laundry pile. 

For well over a year, Raya's vomiting was a part of our everyday lives. We accumulated some pretty awesome vomit stories too, like the time that I stuck a rag in front of her face to catch vomit during a therapy appointment and got my hand too close to her mouth. Instead of soaking into the rag, the stream of vomit shot up into the air and landed directly on top of my head. (thank goodness Neocate has one of the least offensive formula smells!) Vomiting and retching episodes were such a frequent thing that most of the time, it wasn't a big deal at all. Even the kids got to where they could see it coming and would reflexively grab something and stick it in front of her face to try and minimize the mess. I couldn't help but laugh one day when Kaida, who was 2 1/2 at the time, yelled, "She gonna puke!" then grabbed a bucket and stuck it in front of Raya's face and caught the vomit. Other times, I would walk into a room and see little baby Raya playing in a puddle of vomit or even smearing it around with a blanket or towel in an attempt to mimic how the rest of us cleaned up after her. 

For the most part, we were used to it and it wasn't a big deal, but it still was not normal. It was not normal, not okay, not fair, and broke my heart time and time again. During the day, her vomiting wasn't usually as violent. She could hit a pretty good radius, but it was nothing like the night vomits. They were violent, debilitating, and scary. They went on for several minutes, during which her entire head would turn bright red with white splotches and she couldn't breathe. She vomited until her stomach was empty and then kept on retching, only able to catch small breaths in between heaves until her stomach would finally let up and her body could finally relax. I couldn't do anything to make it stop, and heaven knows we tried anything & everything we could. All I could do was sit with her, hold something in front of her face to catch the puke, rub her back, and wipe the sweat off of her face and hold her when she was done. It sucked. (she did have some pretty amazing abs as a result though)

Through MUCH trial and error with feeds & medications, some out-of-state testing, and the switch to a different type of feeding tube, she FINALLY stopped vomiting. It happened gradually over a couple of months, during which I repeatedly had to pinch myself to make sure I wasn't dreaming. It was so strange to realize that it was actually over. The best kind of strange, of course. :) Thankfully, Raya doesn't remember that time in her life.


Motor Skill Delays
 Although she didn't have any severe motor delays, she did have enough that they warranted working with a physical therapist. In her early days of NG tube feeding, it was absolutely necessary to keep socks on her hands in order to minimize the number of times that her tube got pulled out. Looking back, I realized that the socks on the hands probably contributed to some of her motor delays but they really were necessary.
 I realized at one point that she did not know she had 2 hands. She would look at one of her hands and use it to grab things, but the other hand spent a lot of time by her side and got ignored. Even if we pulled both hands in front of her, as soon as we let go, the one hand would move back down to her side. I mentioned it to her physical therapist and thankfully she had some good little tricks that worked really fast. I remember at one session, she stuck both of Raya's hands in the ends of a slinky. As I watched her wiggle her little hands around in the slinky, it was like a switch flipped in her brain and she all of a sudden realized that she DID have 2 hands. It was amazing!

Because of some muscle tone issues due to mild cerebral palsy, moving around has not always been as easy for Raya as it is for kids without those issues. She used to have trouble with tightness in her hips, outer thighs, calves, and feet.


Torticollis and Plagiocephaly
 These two conditions were things that she was born with. A lot of kids with plagiocephaly have "positional plagiocephaly," meaning that their heads become misshapen due to laying flat on their backs. Raya's plagio was congenital, meaning something she was born with due to her positioning in utero. Rather than having the back of her head flattened like most kids with positional plagiocephaly, she had one side of her head that was more flat and the other side had a ridge to it.

The torticollis was also congenital. Torticollis is when the head tilts to one side. For Raya, her head tilted to the left and rotated to the right. Physical therapy and stretching are usually all it takes to correct torticollis. What we did not know at the time was that Raya would later be diagnosed with mild cerebral palsy. The increased muscle tone from her CP made it much more difficult than it otherwise would have been to resolve her torticollis. This picture is a pretty good representation of both conditions.

Thankfully, we had good physical therapists that worked with her and also taught us different ways to position her and hold her to help stretch the tight muscles in her neck and shoulders.

The plagiocephaly was much more expensive to fix. We probably could have just let it be, but because of her torticollis, her plagiocephaly had the potential to get worse over time and cause permanent issues. Without a normal & typical head shape, it can be difficult to find glasses, hats, and helmets that fit properly. It can cause jaw alignment problems that can lead to chronic pain & other dental problems, as well as issues with vision, hand-eye coordination, and many other subtle but potentially significant things. We decided that it was worth the investment to do what we could to correct the condition. (insurance did not cover the cost of the orthotic helmet)
 Completely and totally worth every penny and every bit of the meticulous daily maintenance! (and putting up with the smell...) These two conditions may not seem entirely related to tube feeding but without the proper nutrition and hydration that she has gotten through her feeding tube, she would not have had the energy for her many, many therapy sessions it took to resolve them.


Sensory Issues
 This is one that she is still working on but she has come a long way. Sensory processing disorder is a condition where the brain misinterprets the signals it receives from the different senses of the body. Perceptions of sensory input are skewed to the point of making them either imperceptible at all or extremely exaggerated. Raya has a mixture of both, and this is one of the things that has made getting her to eat orally so incredibly difficult. 

For a child with sensory processing disorder, flavors or textures that most of us either find pleasant or don't particularly notice are highly pronounced. Raya has preferences for certain tastes & textures that are much stronger than a typical child's preferences, as well as aversions to other tastes & textures. Her sensory processing disorder has also made other things difficult, such as walking on certain surfaces. This video is a great example of that:
video
It took us many, many tries before she could walk across that sideways slope without panicking because of the difficulty her brain was having with processing where her body was in space. 

The correlation between tube feeding and Raya's sensory processing disorder is that without the feeding tube, her oral aversions to multiple flavors, textures, appearances, and temperatures of food would have severely limited what she accepted into her diet (assuming she actually ate anything). The tube has given her a way to get adequate nutrition while being allowed to work through those issues at her own pace, which I feel is important for a medically complex child who feels like so many aspects of life are under the control of someone else that would not otherwise be.


There are other obstacles that Raya has overcome and continues to work through, and whether or not they are directly related to the feeding tube, the fact of the matter is that had she not gotten the tube, she would have been too busy slowly starving to death to ever devote any energy toward working through these other obstacles. It sounds dramatic, but it is the honest truth.


Raya is not the only one that has overcome obstacles. As any parent of a child with medical needs can tell you, there are effects that reach far beyond that one child. Medical stresses affect the entire family, not just the child. As a family, we have worked hard to find a balance between caring for Raya's special medical needs while not coddling her and also attending to the needs of her 3 older siblings AND not neglecting our marriage. We are far from having it all figured out but we have all tried hard to share in household responsibilities as well as in caring for Raya. As the other kids have gotten older, they have stepped in to help in whatever ways they can to the point that we now have a very responsible 10 year old who knows how to mix formula, fill a pump bag, load it in the pump, connect everything, and start the feed, as well as how to put the tube back in when it gets pulled out and fix most pump errors. Our 9 year old is not far behind in a lot of those things, and even the 6 year old knows how to read what alarm is beeping on the pump and then pause it until someone can fix it so we don't have to listen to it beep.

I personally have overcome some degree of my fear & anxiety over having Raya under the care of someone other than myself or Donny. That is no small task! I have always been a bit of a control freak (which is not serving me well during what is hopefully my final week of pregnancy...) so it's really difficult for me to not know 100% of what is going on in Raya's life (or any of my kids, for that matter) and even more difficult to not be the one in control of what's going on in her life. I know that in the coming years I will have to surrender more of that control to the staff at school as she is there for more hours in the day and as her feeding regimen changes over time, but for now it's baby steps.


 Keep on working hard, Miss Raya! ♥



Monday, February 10, 2014

FTA Week 2014-- Day 2: Feeding on the Go

Today's topic: Share your tips for feeding on the go or in public! Where have you tube fed? Talk about the most unexpected places you've done tube feedings. 

One of the things that I was uncertain of in the very beginning before we left the hospital with the NG tube was how difficult it might be to leave the house with Raya attached to her feeding pump. Or if it would even be possible given that the pumps they'd been using at the hospital were large, clamped to IV poles, and didn't seem to hold much of a battery charge when they were unplugged from the outlets. (but we can talk about the crappy pumps hospitals use another day...) When the rep from our home health supplier came to drop off the feeding pump we'd be taking home, I realized that we would probably have some mobility due to the fact that the pump was smaller than the hospital pump and he brought a backpack along with it. That pump and backpack did make it possible for us to leave the house and be gone during times when Raya needed feeds. I remember the first time I left the house with her for an evening. She was probably about 2 1/2 or 3 months old and I desperately needed to get out, so I went to a little get-together with some ladies from church. I put formula in the pump, loaded the pump into the backpack, strapped Raya on in the Moby wrap, plugged her in to the pump, and away we went. It felt SO good to be out & about and doing something normal again after a few weeks of medical craziness!

That first pump (the Kangaroo Joey by Covidien) served us well. It worked. It was touchy, it was positional, it was a bit too easy to get air in the line or cause pump errors, but it worked. Until Raya started moving around more.
As nice as it was to have the option of putting the Joey pump into the backpack and leaving the house (or just not having it clamped to the IV pole), it was still fairly cumbersome and as we later learned, NOT the pump you need when you have a mobile infant or toddler! Thanks to an audiologist that did a hearing test on Raya during that summer, we learned about the Infinity pump and were able to switch.

What does all of this have to do with tips about feeding on the go? This is my biggest tip for feeding on the go: If you have a small child who is mobile or a school age child on continuous feeds, you want the Infinity, not the Joey. (sorry, Covidien...)

Raya started wearing the Moog Enteralite Infinity pump in the Super Mini backpack for short periods of time when she was only 7 months old. She's 4 now and I still can't imagine her wearing the Joey around all day, but that Infinity doesn't slow her down at all.
(this was during her phase where her tongue was hanging out most of the time and kind of off to one side)


That little bitty pump and little bitty backpack have made it possible for Raya to be just as mobile and busy as any other kid. Since she spent many, many months on around-the-clock continuous feeds, she has been fed anywhere and everywhere.


Tube feeding does not have to restrict a child (or adult) from enjoying the activities of life! Heck, Raya has even been tube fed while she was swimming! (talk about getting funny looks from people while I followed my toddler around the kiddie pool on a "leash"...) She can run and jump and play and do somersaults and go to school and ride horses and ride her tricycle, and pretty much anything that any other kid her age can do.

Sunday, February 9, 2014

Feeding Tube Awareness Week 2014- Day 1: Share your story

Feeding Tube Awareness Week (aka FTAW) is upon us again. It has been a bit of a whirlwind getting ready for it this year as pretty much the whole FTA staff has some kind of upheaval going on right now but we are very excited that it's here. As usual, there are daily topics to help bring light to different aspects of tube feeding. (topics can be found here) The official FTA video was just released last night and I absolutely LOVE it! My friend and colleague Hillary did all the hard work on it and the rest of us helped out where needed. It is a beautiful tribute to the small and simple device that keeps all of our children alive and well. Here it is:

 

Due to being in the hospital all week with Raya and trying to get ready for a baby that's due on Friday, I'm bummed that I didn't get a video made this year but I thought I'd share the last 2 that I made for previous FTAWs.
2012:


2013:

Raya FTAW 2013 from Brandis G on Vimeo.

Today's topic is: Why do I/does my child have a feeding tube? What positive benefits have come from tube feeding? 

Once upon a time, I had imagined that by this point in Raya's life, we'd have a quick little one or two word answer to the question of why Raya has a tube. "Oh, she has XYZ syndrome." That would be convenient. Instead, we still stumble through rattling off an abbreviated version of this:
She was born full-term and like her 2 older sisters, started spitting up right away once she started eating. The reflux got worse over the first couple of weeks and she did not like eating. She was a miserable baby and didn't gain much weight at all. By 6 weeks, she was projectile vomiting. At 2 months she was admitted to the hospital for testing and had to be switched to a low allergenic formula, which she refused to drink, which made the first NG tube necessary. The next year was filled with test after test, buckets of vomit, trials of different feed schedules and medications, more buckets of vomit, and a lot of stress trying to figure out what was wrong with her. She got a G tube, then got a GJ tube, then we flew across the country to do motility testing, then we came home and kept plugging away at therapies and fine-tuning feed schedules & formulas. Finally the vomiting slowed to a minimum, and then stopped completely. (and the washing machine rejoiced...)
 

We thought (and hoped) that once the vomiting stopped, the eating would start. It did, but not like we had hoped. She had SO much lost time to make up for and had problems with textures, temperatures, flavors, and a lack of efficient oral motor skills. She also just plain didn't care if she ate or not and had no comprehension whatsoever of the necessity of eating. As she started to work through those issues, it became apparent that she has multiple food allergies that have since drastically limited her dietary options. So basically now our challenge is finding food that she CAN eat, that she WILL eat, that has at least some nutritional value to it, and convincing her to eat more than just one food on a regular basis. Piece of cake, right? Oh, and I forgot to mention that she has gastroparesis, which means that her stomach doesn't function completely normally and it empties slowly, especially with solid food. So in addition to the above requirements, the food also has to be fairly low in fiber and has to be something that moves through the stomach pretty quickly in a person with a normal digestive tract.

So there you have it. We have a darling 4 year old girl whose body works against her in multiple ways and makes it necessary for her to get about 85% of her nutrition and fluids and 100% of her medications through the beautiful little feeding tube surgically implanted in her stomach. And yes, I really do think the tube is beautiful. Okay, well it can be pretty cruddy looking but figuratively, it's a beautiful thing because it's such a small and simple device that has kept my sweet girl alive, but also given her ample nutrition to help her grow and to help her body AND her brain develop beautifully. She is a smart little girl with a huge personality and we owe both of those things to her feeding tube. 

Happy Feeding Tube Awareness Week! Stay tuned for the rest of the week's posts! (and maybe baby sister will be joining us sometime this week too)




 
 

Saturday, February 8, 2014

The rest of the hospital stay

(I started this at the hospital but was too tired to finish it there and it's too much of a pain blogging from my phone & the iPad so I'm finishing it now that we're home and I've forgotten what happened when. :)


Today (Tuesday) was better than yesterday but we're still at the hospital. Aside from having to change wet bedding twice and having a lousy blood draw at 1am, we had a better night's sleep.
For some reason, nobody ever listens to me when I tell them that they won't be able to draw back enough blood from her IVs to use for labs. All they needed was 1ml but they couldn't get it from the IV. "But it flushes great! I don't understand..." Yep, they always flush great but you'll never get enough blood for labs from them. 


We had to get her up at 5 to change sopping wet bedding and realized she was running a fever of 103.6 again. That was really disappointing because I had expected her to be past the fevers by today and that was the highest it had been since we were at the urgent care. She went back to sleep and had another good stretch of much-needed sleep. A couple of volunteers came by with a different therapy dog. She was more in the mood for it today and the dog they brought today was much smaller and less intimidating. She liked him.
 

 Earlier in the morning, the resident had told me that the urine culture from urgent care had never been sent to a lab. That was extremely frustrating news since we needed to know what bacteria was growing so we'd know what would be best to treat it with. Later on the attending said she had tracked it down and that they knew what bacteria was growing but were still waiting for sensitivities before changing her meds. Her fever came back again in the evening, which again was really frustrating because A. she should be past that point now, and B. it means another 24 hours of being here.

Another very sweet friend was kind enough to go over to our house, get some clean clothes, and bring them to us along with some lunch for me. Having visitors makes the time go by so much faster and is very much appreciated. I also got to meet up in the cafeteria Monday night for a little snack with one of my local tubie momma friends that I hadn't gotten to meet in person yet. Her son has been here for about 2 weeks and it was really nice to get to take a break and chat with her. I feel so incredibly blessed to have so many "medical momma" friends in this area. I wish I had known more people when we were first starting out with all this but most of them hadn't been thrown into this medical world yet at that point.



Since Raya kept having fevers Tuesday too, the attending decided we needed to look into other possible reasons why, just in case we were missing something. The biggest item on that list was a renal ultrasound. They were starting to get concerned by the symptoms Raya was having (ongoing fevers so many hours after starting IV abx, back pain, belly pain, feed intolerance, etc.) that maybe she had an obstruction or pocket of infection in one of her kidneys. We also decided to do a viral swab to see if maybe she had a virus that we weren't catching. I really REALLY doubted that she had a virus because there was absolutely no sign of anything but still felt like we should look there anyway. I think the viral swab was probably the most traumatic thing she had done the whole time we were there. We did it in the treatment room because I didn't want them traumatizing her in her bed. To do it, they take what looks kind of like 2 long Q tips with the cotton ripped off, put one up each nostril, and rub them around for 10 seconds. I think it's pretty easy to imagine how good that would feel...  When they were done, she got to pick a prize from the prize bucket. She picked a light-up butterfly wand and was SO excited about it! A little while later, it was time to go downstairs for the renal ultrasound.


Unfortunately I forgot that just having tests like viral swabs run with results pending means that you're automatically on isolation, so she had to wear a mask all the way down and was not a fan. I sat in the wheelchair and she sat on my lap and we got a nice ride. Well, it was nice but by the time we got to radiology, we had heard the transport guy's entire life story, including details of his frustrating financial life.

The ultrasound experience was rather frustrating too. There were 2 people in the room and I didn't realize at first that the one doing the ultrasound was a student until the other one had jumped in a couple times and corrected her on certain things. She did fine on the ultrasound but it took FOREVER, and her bedside manner with children is not quite there yet. Raya was a little panicky at first because of how many times she'd been poked and had JUST finished having swabs shoved up her nose, so I think she and I both would have appreciated a faster ultrasound. Once the tech was done, the two ladies left the room and said they had to go show the radiologist the pictures and make sure they'd gotten all the views they needed. I expected them to be gone for 10-15 minutes but 45 minutes later, they FINALLY came back and called transport to come take us back to our room.

The ultrasound looked pretty good except for an area of dilation in her left kidney. The night attending told me that what that meant was the infection was creating higher-than-usual pressure below her kidney that was disrupting the normal drainage of her kidney, and that's what was creating the dilated area. In the grand scheme of things it was great news considering that they had been concerned about a possible kidney stone, blockage, or pocket of infection so nobody was worried about it.

Aside from the tests she had done Tuesday, she was feeling good enough to get out of her bed and play a little. She was also off of IV fluids (thank heavens) so she got some time where she wasn't tethered to anything. (because hospitals sometimes don't keep kids on their normal feed/med schedules like their parents do at home...) Child life had brought her a whole bunch of fun things after the viral swab so she sat on the bizarre specimen of a couch and did her new puzzle for a while. (seriously, weirdest couch EVER)

 We also snuggled in the chair and watched tv a little and texted a picture to Daddy and big sister.

 She felt pretty good most of the afternoon and then in the late afternoon/early evening, her fever came back again. They gave her Tylenol and it went away, then it came back again around 9:00. She's also back to sweating profusely every time she falls asleep, which I'm told is an autonomic issue.

 The night nurse said that she needed to draw labs at 11:30pm. I told her that we would need to draw them from somewhere other than her IV since it had gone so badly the night before when they tried to draw blood for labs from her IV. At that point, her IV was starting to not look so great anyway and they decided it was just as well that they placed a new IV while they were doing labs. I felt so bad pulling her out of bed at 11:30 at night just to take her down the hall and let them poke her.

It turned out to be as bad as I expected it to be. Raya has tiny veins. I told the nurse that we usually call IV team but she wanted to at least try first and get the blood for the lab work. I swear, I'm going to put my foot down next time somebody says that they don't need to call IV team. I get that they place a lot of IVs and they may be confident in their skills, but I'm so tired of watching my girl be their pin cushion. That nurse tried probably 2-3 times before deciding that she'd call IV team to place the IV and just do a finger poke to get the blood for the labs. That meant that she poked Raya's finger with a lancet and then for about 5-10 minutes, she squeezed out drop after drop into a vial until she had enough blood for the test they needed to run. The whole time, Raya laid there and cried and said, "Owie!" over and over. After that, they left her alone for about 20 minutes while they waited for someone from the NICU to come up and try placing a new IV.

I opted to stay in the treatment room and wait rather than tease her by taking her back to her room and then bringing her back to the treatment room. Even with a special vein finder light and the tiny catheters from the NICU, the NICU lady ended up blowing 2 veins in one hand, couldn't find any useable veins in either foot (thank goodness, foot IVs are awful!), and eventually settled on using the big vein in the bend of Raya's elbow (the one you'd use to donate blood from). That is not an ideal place to put an IV in a little kid either but it was the only vein big enough for them to be able to draw back from and it was also MUCH more comfortable for Raya when they flushed it. Until then, because the vein in her hand where the previous IV was had been so tiny, she screamed every time they flushed it. Almost 2 hours later, they finally had their 1cc of blood and a new IV in. Yes, almost 2 hours of helping hold my child still while she got poked no less than 7 times, had her finger squeezed until they'd gotten enough blood to run labs with, and had catheter after catheter dug around in her tiny veins which blew 2 veins. And yes, she screamed and cried and begged to go back to her room or go home the whole time. To her credit, even as much as she screamed and cried, she still didn't fight them and she held still while they poked her. At one point when she and I were alone in the room, she asked me when she could go back to her room. I told her that they needed to put in a new IV that wouldn't hurt her when they flushed it so she just needed to be tough for a little bit longer. Her eyes filled with tears again and her lip curled down and she said, "But Mommy, I don't WANT to be tough! I'm not THAT tough!" And THAT is the part that I hate the most. It's just not fair to ask so much from little kids but when it has to be done, it has to be done.

We did end on a funny note though. She had been talking the whole 2 hours about getting "surprises" when she got done from the "surprise box" like she'd gotten earlier in the day. One of the nurses got the box out while the other one finished taping her elbow so she couldn't bend it. They pulled out some Barbies and said, "Oooh, look at this one, she's so pretty! Do you want this Barbie or this Barbie?" Raya just stared at them, completely unimpressed. They seemed shocked that she wasn't interested in the Barbies so they started digging through the box. One of them moved something and Raya caught a glimpse of another butterfly wand like the one she'd gotten earlier. That was all she needed to see and she knew she wanted it. She had a smile on her splotchy, red face and hugged her new butterfly wand while I carried her back to her room. As we got her settled back into bed, we noticed that once again, she was running a fever. We waited half an hour and checked again just in case it was because of all the excitement but she was still too warm even after waiting.

Thankfully, Wednesday was a much less eventful day. We didn't have to leave the room for anything and only had vitals checked a few times and did normal stuff like meds & formula. That day, they did a fabulous job of doing everything on schedule too so that was nice. She's getting so big. I was proud of her for standing still while the tech did her vitals in spite of how traumatic things had been the night before with the labs & IV placement.

We also finally got a chance to give her a shower (hence the plastic bag taped around her IV) and she felt much better after that. The rest of the afternoon, she played and watched Jake & the Neverland Pirates on the iPad. (soooooooooo sick of that show!!!) She was pretty happy most of the afternoon.

Of course then her fever started to go back up right around 4:00, so that was frustrating and disappointing. Tylenol nipped it in the bud really fast but a fever is a fever and they had said she couldn't leave until she was 24 hours fever-free.

Her preschool teacher had emailed me earlier in the day and asked if she could pop in for a visit. I thought maybe she didn't realize how far away we were since there's another children's hospital closer to where we live, but she still came to visit even though we were a good 25 miles from home. She has been such a great teacher and has been so cautious and careful about Raya's medical needs and the needs of all the kids in her class. She is one of those teachers that you hope & pray your kids will get and I'm so, so thankful for her. Raya was thrilled to see her. :) It was super sweet of her to come too because not only was it a good 40 minute drive, but she hadn't even been home from work yet and it was after 7:00 at night when she came.


Thursday was also pretty uneventful. I spent most of the day watching the clock and feeling her forehead and reminding her to not get a fever so we could go home. We also did her puzzle about a dozen times.

She realized at one point that she could reach both bed rails at the same time with her feet and wanted me to take a picture:

She watched another couple dozen episodes of Jake & the Neverland Pirates (heaven help me) and then got her little heart broken when I took the iPad away and made her find something else to do:
(meanest mom EVER)
She got over it after a few minutes though and started playing with her toys again. She was definitely feeling better than she had all week by then. (and that was due in large part to the formula room getting several hours behind schedule. she always feels good when she's not getting fed.) The attending had come in late in the morning and we talked about going home. She said that they typically like to have kids tolerating full-strength formula and their regular feeds before leaving but when I reminded her that dysmotility has always been an issue and that I've been managing feed tolerance issues at home for the last 4 years, she was fine with sending us home. She said she'd get the discharge orders going but that she still wanted us to hang around until 4 or 5 to make sure the fever wasn't going to come back. I mentioned something to the nurse around 4:00 about going home, and she was surprised & said she hadn't seen any discharge orders. Ack. She came back a few minutes later and said that the orders HAD been active but that they were now on hold and she was going to do some checking and try to find out why.
We snuggled while we waited to leave. :) I do love all the snuggles and 1-on-1 time with her, even if it is at the hospital.

She came back a few minutes later and said that it was probably because Raya wasn't on full feeds and they don't like to send kids home unless they're tolerating full feeds. Ugh, seriously?! I told her I'd already had that discussion with the attending. A few minutes later the resident came in and I explained to her that we would be totally fine managing Raya's feed tolerance problems at home since it was very normal for her to have this problem after being sick, and that the attending had been fine with sending us home. She agreed that we could go and said she'd start getting things going again. After a major ordeal getting all the tape off her arm so we could get the IV out, we were finally out the door and on our way home at 6:45.

We stopped at the pharmacy on the way home to get her oral antibiotics and found out that the resident had marked "dispense as written" on the prescription. That was a problem. It means that the pharmacy can't substitute a generic drug for the name brand, but NOBODY carries the name brand of that drug because it's so much cheaper to get the generic. Not only that, but Raya's secondary insurance through the state would not pay for the name brand drug anyway. After several minutes of phone calls, the pharmacist was able to get a hold of someone at the hospital that could authorize substituting the generic. Whew. I dropped Raya off at home, came back to pick up the medicine, and then went home again to unpack so I could wash all my clothes and repack my hospital bag for when this baby decides to come. It was most definitely NOT how I planned on spending my week! We're glad to be home and I'm really, really glad Raya is feeling so much better. It was really lousy seeing her feel so awful. Now it's time to get ready for Feeding Tube Awareness Week, which starts tomorrow!



Thursday, February 6, 2014

The H word...

I'm not going to say the actual word, but it looks like we will not be sleeping in a plastic covered adjustable bed tonight. Yay!! We are more than ready!

Monday, February 3, 2014

Unexpected hospital admission

We've had a good, long run between unplanned hospital stays but all good things must come to an end. Last week I noticed that Raya's wet diapers had a strong and unusual stink to them. I chalked it up to a decrease in her oral fluid intake due to the cough she'd had. I increased her g tube fluids and her stinky pee went back to normal. Thursday she was laying around more than usual and in the afternoon I realized she had a low fever. It went away after she went to sleep but she had a fever again by the time she woke up on Friday. I kept her home from school and canceled therapy. Her temperate was up and down but for the most part she was still acting pretty normal. On Saturday afternoon her fever came back and seemed higher to me. Add the evening went on, she got hotter and hotter. Later that night we gave her Tylenol and a bath and that cooled her off a bit. At one point I had taken her temp with the exergen forehead thermometer and the stupid thing said her temp was 107.3. She was hot but not THAT hot. Even though I knew the thermometer was wrong, I was a bit concerned about how hot she felt. She really didn't have any symptoms that pointed to anything obvious and I thought about taking her to the ER but by then it was 2:30am and I was too tired. She was cooler in the morning and had a good morning Sunday. I was exhausted Fromm the lack of sleep the night before so I laid down to take a nap. I knee she was not feeling well when she came in my room and asked if she could lay down with me in the middle of the afternoon. When I woke up I could see her shivering and shaking even though she was wrapped up in a warm blanket. I took her temp again and it was over 104. Since it was the fourth day of fevers &I didn't know for sure what was causing them I decided to take her to urgent care. She got hotter on the way there. When they took her temperature, I was shocked to hear that it was 105.9. Never in 11 years of being a parent have I seen a temp that high in any of my 4 kids. She looked like she felt awful. She didn't have any obvious visible symptoms to explain such a high fever. We gave her Tylenol immediately and within probably half an hour she was starting to cool off. I could tell that she was already staring to feel a little better. I can't even imagine how awful it must feel to have a fever that high. We did a throat culture and cathed her for a clean urine specimen and then waited for results. While we waited, she felt good enough to dig through the toy drawer and sing. When the doctor came back in she said that without a doubt, Raya had a bad UTI. She said every single thing they look got in the urine was positive. I was relieved that it want something contagious, especially with me being less than 2 weeks from my due date. The typical treatment would have been to give her a shot of rocephin, but she is allergic to another drug in the same family so we can't risk using any cephalosporins with her. That eliminated rocephin and keflex. Bactrim was another option but it's not effective in a large percentage of children so with her fever being so high and my due date coming fast, we didn't want to risk giving her something that had a good chance of not working. The next option was augmentin, but because of her history of c. diff we have always avoided using antibiotics that have to be given for more than 5 days. With all things considered, the doctor and I both felt like the best option was to admit her for IV antibiotics. Because I'm extremely tired right now, I'm not going to waste my energy rehashing the while ER admitting experience. Suffice it to say the way the urgent care doctor told me it would go down was not at all how it happened and we spent WAYYYY too much time in the nasty, germy ER that made my skin crawl than we should have had to. Eventually they decoded on two different antibiotics and got them started. It took almost 4 hours from the time we got there until we we finally in a room. It was 3:00 this morning before we actually went to sleep. And of course the resident came in at 7:00 this morning on the dot. The plan for the day was to wait for results from the cultures, which usually takes 48 hours, give or take. In the mean time, she'd keep getting the two abx they started last night and hopefully not spike a fever again. Once the results were back, they would decide a more specific course of treatment that we could go home on. Unfortunately she has had fevers off & on today again so we won't be going home tomorrow for sure. On the bright side, the highest her fever got today was about 103 so that's much less scary than almost 106. She's had times today where she felt pretty good but she's also felt lousy. She's been shaky on her feet and sill looks like she just doesn't feel good. She watched shows on Netflix with the iPad for most of the afternoon. A therapy dog named Milo came to visit her. She was not at all impressed. He was huge. His handler/trainer/person did a silly trick with him. My sweet friend Dana brought me lunch and visited for the afternoon. At lunch time Raya felt good enough to order a baked potato for lunch but by the time it showed up, she was staring to feel yucky again. She had one or two bites and a nibble or two of the soggy French fries and that was it. It was a pretty uneventful day. Not a bad thing though, I needed to stop having contractions and sitting around all day diff the trick. Now we just keep waiting for the cultures and cross fingers that her temperate stays in the normal range.
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