My Favorite Nurse

I have to give some praise to my favorite nurse of all time...Beverly Krensky.  She works at Primary Children's Rehabilitation department, where she manages children with neurological conditions. At the University of Utah, Beverly Krensky manages the rehabilitation needs of adults with childhood onset disabilities. This clinic offers continuity between the pediatric and adult rehabilitation systems. She also specializes in spasticity management, offering treatment with oral medications, intramuscular injections of Botox and phenol, and baclofen pump management.

My mom was at the Festival of Trees last year, and talked to a mom with a child in a wheelchair and somehow the name of Dr. Gooch came up.  My mom suggested I go see her, so I did with some hesitation.  I just thought it would be yet another doctor to get confused about, and not get much help.  Beverly is Dr. Gooch's nurse practitioner, and she was so helpful from the get-go.  She is very encouraging, helpful, positive, and most importantly she gets me to the people I need to see.  With her help, Carter has been seen by OT, PT and feeding at the IHC Taylorsville Clinic.  Through that help, Carter has also gotten his very own stander.  She also helped us get in touch with the swimming specialist (who we are still a little iffy on), she facilitated the swallow study that in turn helped us to get the G Tube for Carter.  She also is helping us to get a sleep study done on Carter, among other things.  I love her help and contacts; without her I would be lost.

I will also be finally seeing a wonderful pediatrician thanks to her advice.  I have really struggled with our pediatrician because he is young and busy, and has no clue about Carter's syndrome.  Because of Beverly, Carter has gotten into the people he really needed to see and we got a lot done.  Since he has gotten his G Tube, he has already gained 2 pounds in less than a month.  At our appointment today I had some concerns about his diet, so she instantly had a dietitian come to talk to me.  She gets things done, gives you the information and numbers you need, while remaining informed and supportive.  I appreciate her hard work, her dedication and love.  I am sure she will be a part of Carter's life for some time now, and I'm so glad he has such a wonderful nurse to take care of him.  She helps keep us ahead of the game and prepared for what is to come.

I'm Not a Fan...

So Carter has had his G tube now for over a week, and I still don't like it.  Yes, I am more comfortable with it and how it works, but I don't like it.  I kept thinking that it would be such a great thing, and yes it is in ways, but it is so so gross.  I know that sounds immature, especially because I'm the mom, but it really is.  Carter has been getting a lot of gas and cries more, so we have to do what's called venting.  Basically you put a big syringe in his tube, unclamp, and then let the air bubbles come out.  You slowly pull back on the plunger to pull it out.  You do get some food/water with it (gross to me!) but you are basically trying to get out the air bubbles.  It's frustrating because I feel like how is it possible that he gets so much air during a feed?  I mean, it's going straight in his stomach right?  We also make sure the syringes are brimming with the formula before inserting, so I'm confused.  The nurse also made it sound like it shouldn't be that bad.  I guess I might need to start slowing his feeds down, or use the pump and let it do the work.

A bolus feed is what we do during the day, and it's where we control the flow and slowly push in the PediaSure.  We do 5 ounces in like 10 minutes, but usually he seems fine with it.  It's a little later that he'll cry and we get a lot of gas out.  I guess until his stomach stretches more we'll have to slow it down.  I feel bad for him because he is in so much pain sometimes.  It's hard to predict because some feeds he never has a problem, and others he does.  We do the same amount each time, and about the same time too.  Oh well.  I guess it's a learning progress.  My other issue is that the PediaSure smells so bad; I don't know why but the smell drives me up the wall.  So when I have to feed him, it's kind of hard for me.  We've tried the different flavors too (even though he can't taste it) and it's still gross to me.  Cleaning the syringes and stuff can be gross as well, but I'm sure eventually I'll get used to it.  We had a night where one of the ports opened up and the formula spilled out all over his bedding and clothes.  It was so gross, and I felt so bad for Carter that he was sleeping in that.  We had no idea it had spilled out.  The pump only alerts you if he has pulled something out, not if it isn't actually going anywhere.

We have been weighing Carter and he seems to be gaining weight, and we have noticed he is more alert and is more into touching things and grabbing.  It's a plus, but on the downside he gets super frustrated now with not being able to do everything he wants to.  If we take his toy away to take him somewhere, or move him he gets super mad.  It's cute, but interesting.  I know this G Tube is a good thing, I just wish he could go back to eating "normally".  I wonder if he knows we are feeding him, it's just a strange thing.  I use chap stick to help stimulate his mouth as well as brushing his teeth to keep it moist; we also feed him in the highchair so he can associate it with feedings.  I have tried feeding him some yogurt and pudding, but he isn't hungry and seems a little weirded out by it.  I'm worried he will lose what capabilities he had; I'm anxious to meet with his feeding specialist again to go over what we can do to keep working on his skills.  For those that have used a G Tube or been around one, this probably all makes more sense.  I guess I am a little resentful that we had to take this route, but I'm also thankful we have the technology to still feed him and get him what he needs.  I'm hoping with some more training, our parents will soon be comfortable enough that we can have a break again one day.

G Tube Surgery

The day was finally here, Carter was scheduled to have a PEG, which is a G Tube placement.  It is a simpler surgery and less invasive overall, so we opted for that.  We went in on Friday around 11am and they took his stats (23 lbs and over 33 inches long; 8% in weight).  Then we changed him into his pajamas and waited in the pre op waiting room for a while.  Then the anaesthesiologist came and explained how she would be putting him under with a gas mask and she would be with him the entire time.  Then the doctor and his assistant came and told us to follow them.  Carter had been napping on me and then sort of woke up a little when I handed him over to the anaesthesiologist.  I was quite nervous and also sad.  I know this was the best option to help him gain weight and not aspirate, I just didn't know what to expect afterward.  I hoped my little guy would still be the same.

We waited in the other waiting room for about an hour or so when they called our name to have one of us go back.  I went back through the blue then the yellow doors to see him.  He was still asleep but I guess had woken up a little.  The nurse was keeping track of his heart rate, oxygen etc while she waited for him to wake up enough to go to the RTU (rapid treatment unit).  While I was there, Carter woke up a little but seemed extremely agitated.  She had to give him quite a bit of medicine to calm him down.  He has this tendency to hold his breath and go blue when he is in pain before he will cry it out.  It can be scary to watch, and he kept doing it that the nurse had to put a mask on him, which he didn't like.  To take I break,  I then switched with Chris because it was hard for me to watch.  I went to eat something, and then we switched again.

Finally, after some prodding and waiting (about 2 hours overall) Carter was awake and mostly pain free.  So then the nurse wheeled his bed-crib as we followed her to the RTU.  We were in room 106 and they started to set us up.  Carter wanted to sit up and he seemed pretty cheerful at this point.

When I first looked at the site, where his hole was or stoma as the nurses call it, it wasn't as gross as I had pictured.  I won't show you here, but it wasn't too bad.  Things had gone well, the actual incision only takes 7 minutes or so.  He played a little with his favorite toy while lounging, and we met our nurse and tech for the night.  They came in every few hours or so to check his stats and such.  They had regular IV fluid going, but then switched to PediaLite at about 6 pm through the G Tube.  I set it up so I could learn, and it wasn't too bad.  Since he seemed to tolerate it well, they switched to PediaSure.  They ran it all night long for 12 hours, at about an ounce (30 cc or ml) an hour.  We are starting out low so his stomach can tolerate it.  They did his meds around 9 pm, and Chris helped with that.  One parent had to stay overnight, so I asked Chris if he could.  I hadn't been sleeping well recently anyway, so I wanted to go home and get a decent night of rest.  Chris's parents and 1 sister Angela brought us dinner and visited for a bit.  My parents have been in St George and Lake Powell for quite a while, so they weren't able to be there for him.  They did call me from Powell that night to see how he was doing.

I went home and slept quite well, and came back in the morning about 8 am.  Chris was still sleep, but Carter was in his crib wriggling around.  He had had some pain during the night, so they had given him Loritab and such.  He seemed happy to see me, and his night feeding went well they said.  At about 10 am, they came in to start a bolus feed, which just means they do a feeding in like 45 min or so.  I helped hook it up, but I didn't yet know how to work the pump.  He did well, and it went in in about 40 min it was 4 ounces.  Then the wound nurse came in and helped us change his dressing and clean him with sterile water and q tips.  You do this once a day for the 1st 8 weeks.  She gave us some more training, then gave us our emergency kits.  Then the nurse came in and gave us final instructions, paperwork, and formula to get us through until I can get to WIC.  We gathered everything, asked our questions, and went home around noon.

We got home and soon had to get ready for another bolus feed; he has to be fed every 3 hours during the day so a total of 4 bolus feeds.  Well, we didn't have our pump yet, so we had to do it with just the big syringe.  Needless to say, it did not go well at all.  We hadn't actually done it before, just seen it in pamphlets or shows.  It started pouring in way too fast, and Carter started screaming from the gas and pain.  Before we could clamp the tube, it all came pouring back out all over our couch and Chris.  Not very fun.  Carter screamed off and on for a while while we tried to figure out what to do.  We kept the tube unclamped so the gas could escape and the food, but it wasn't coming out super fast.  We tried to take some out with a syringe, but not much came out.  The nurse was on the phone with us trying to help us, while we were trying to stay calm (not really).  We gave Carter some Loritab and he finally calmed down a little.  He was given a priesthood blessing, and in the meantime, I was chewing out the home health company to get our pump there pronto.

The delivery came, but I guess you need a nurse to help set it up and tell you how to use it.  I was pretty mad at this point at the miscommunication.  We didn't dare try the syringe again, so we tried giving Carter yogurt but he didn't seem hungry.  The nurse finally came about 8pm, so Carter hadn't eaten since 10 that morning.  She set it up, showed us how it works, and helped us do his 3 meds, and then set up his night feed.  She said she would come back in the morning to help with his first bolus feed, and then gave us their 24/7 number and left.  Well, we heard his monitor beep an hour later, it had stopped.  We tried calling the number, and while waiting to hear back, Chris figured it out.  The nurse had set it to run for just an hour instead of all night.  Well, it took them 40 min to call us back.  Good customer service?  I think not.  Not a good thing if I really need to talk to them.  The machine ran smoothly the rest of the night, and we woke up in time to turn it off.  It will shut off automatically so no air goes into his stomach.

The whole night time process of getting his meds in him and all the flushing of water and clamping and un-clamping took almost an hour.  I was pretty exhausted by the end of it, and frustrated.  Since Chris works nights, I will be doing this night routine all by myself.  I know things will get easier over time, but I am pretty scared about the whole thing.  I am worried that if I forget to clamp the food will go everywhere.  I am worried he will pull it out during the night (yikes!) or something.  It's such a big change and I'm feeling overwhelmed and scared.  I can't really get help from family because they need training too.  I hope we can get the hang of this, and quick.  I don't foresee us ever being able to go on dates again.  They have a backpack you can take around with you, but honestly, who wants to set up a feed and have to flush and clamp and unclamp in public?  Or at someone else's home?  He has to be hooked up to everything by his bedtime which is 8....I'm just feeling pretty down about the whole thing.  My mom has been out of town for almost a month and I miss her.  She will be home soon, and hopefully once I train her she can help me at night for a while.  We also need to switch some of his meds from tablets to liquids so it will go much smoother.  If you don't see us on Facebook or church for a while...you'll know why.  I am tethered to my mini hospital at home.

WIC

WIC stands for Women, Infant & Children.  It is a program that helps provide food assistance for mothers who are pregnant, or children until the age of 3 I believe.  This has really helped us when Carter was on formula because it covered the cost of that entirely.  There is an income limit that you have to meet, and then you go into an office to qualify and go from there.  They usually give you enough vouchers for 3 months, and it basically includes:  milk, bread or rice or tortillas, some cereal, juice, canned or bagged beans, fruits & veggies, eggs and peanut butter.  If the mother is breastfeeding they will cover more of a variety of food.  If the baby is under 1 they cover formula if they need it, and then once they are 6 months they do cereal and jars of baby food, like 32 cans for a month.  My only problem was that they never seemed to give me enough jars of food, so I had to buy more on my own.  They also won't let you buy the mixed kinds, it just has to be 1 basic fruit or veggie.  They do not cover jars of meat so I had to buy that also on my own.  Once your child is 1, they switch to whole milk Vitamin D cow's milk, cereal, canned beans, fruits & veggies, bread, etc.

I have not always found the program helpful or necessary, especially when the appointments dragged on for about 2 hours.  Even though you only have to go in once every 3 months or so, it can be a bit of a pain.  The thing you also have to be careful with when doing WIC, is making sure before you sign the voucher at the cash register that the amount the cashier wrote in is correct.  If it is wrong, you will end up having to pay the difference.  Always make sure you double check the price before signing.  It can be embarrassing sometimes to have all these vouchers when going through a line, because it can hold up the line a bit, but you know what you need to do what you do for your family.  I figure it saves us about $55 a month depending how much I get.  If I don't think I will eat or use everything they give me, I don't get it because I don't want to abuse the system.  You also can't trade food to people or give it to anyone else except for the intended recipients.  So technically the Dad should not be eating or drinking any of that WIC food.  Just mom and baby.

If things are a little tight, it may be worth it to look into.  Like I said, it was most helpful when Carter was under 1 year of age because formula is super expensive as is baby food.  Now that he is older it really only gives us about $30 worth of food a month for him, but it's still something.  You can always freeze milk or process the fruits & veggies for easier eating.  Also, babies can get peanut butter you just have to ask.  If your baby needs a special formula, just have your doctor fill out a prescription and WIC should cover it.  They are huge into breastfeeding there, so if you need help with that they can also help.  They lent me a pump for 6 weeks when I had Carter, which was super nice because pumps are expensive.  It was free to use and very nice of them.  Just google for the number of your local WIC clinic; they accept Medicaid cards as proof of income and you would be automatically qualified.  Otherwise just take in pay stubs to see if you do.  They take weight, height and your iron level a few times a year to make sure you and baby are growing well.

California

We went to California over the weekend for a wedding.  We flew in late Thursday night and flew back Sunday evening.  Chris's cousin Ryan was getting married to Camille, here is their beautiful engagement photo.

We were glad that we were able to go for their wedding.  On Friday we went to Knotts Berry Farm theme park, and stayed most the day.  Carter was a trooper and was really cute.  That night we went to bed early at our hotel because we were so tired.  On Saturday we attended their wedding at the Newport Beach Temple at 9:00 am, it was beautiful.  The luncheon was around noon at a country club, they had Italian pastas.  Then we went to the beach for a few hours in between; we didn't have our swimsuits so I stayed with Carter on the beach under some shade.  That night was the reception at the Double Tree Hotel, and they had delicious finger foods and cake.

We wish them a beautiful and happy life together!  Carter was so good during the entire trip and our flights; he napped when he could, ate whatever I gave him, and wasn't grumpy even when it was hot.  I love my little guy so much!  Needless to say, after all that fun, I am so glad to be home.  It is always so nice and comfortable to be home.  Home sweet home!

Carter sleeping at the hotel and in his stroller.

Can I?

I think it has taken me a good few months after finding out Carter's diagnosis, to really feel the emotions.  I'm good at pushing things down or away so I can deal with the moment.  But lately, I've been a lot more emotional:  sad, angry and impatient.  I keep coming back to saying "It's not fair."  I know some optimist out there will say, "Nothing in life is fair."  Bite me...lol.  It's not fair that my little Carter won't have a normal life, that he won't be able to move on his own for a long time, who knows when.  That he has troubles eating and drinking, that he can't talk to me, maybe ever....that he won't be able to have friends, because he will be behind.  That he'll never be in a "normal" class, date, have a first kiss, go to Prom, go on an LDS mission, and ultimately get married and have children of his own.  I know this won't be a lighthearted post, but I feel that people should know just how hard it is.  Most days I can deal with things okay, because Carter is such a good baby...for the most part.  It's thinking ahead that terrifies me and makes me sad.

I know he is a special spirit, and his spot in Heaven is guaranteed.  I have a celestial being in my home, and I'm honored.  But I don't think I can do this, deal with all the emotions and knowing what he is missing out on.  I want more than anything to see my baby boy, 20 months now, to walk and be able to get his own toys.  To be able to hold my hand and walk beside me, to feed himself, to go to Nursery, to make friends, and to say "Mommy" or "daddy".  I'm not saying that I am limiting him in any way, because I know a lot is possible.  But the statistics, and reading other blogs, has prepared me for the future.  I will always have a baby, or at least a child that is emotionally far behind his real age.  I will have to keep doing therapy, even when I'm tired of it.  I will have to feed him, dress him, bathe him, bring him toys, entertain him, and carry him everywhere...for a long time.

I know Carter didn't ask for this, and it isn't fair to him above anyone else.  I try to do my best, to make him feel loved, wanted and well.  But when he is in bed, I feel defeated and so scared.  I know there are worse things out there, but I need to recognize that what I am going through is very hard, and I deserve to have a pity party now or then, to cry or get angry.  I know people don't understand because they don't have a child like this, but it is so tiring.  Not just because he doesn't sleep through the night most the time, but because I'm always berating myself for something I didn't get to that day, that could have helped him.  I feel like no matter how much therapy I do with him, that he'll take such a long time to progress.  It is frustrating.  I know I could do better, but sometimes just feeding him and making sure he is well, is enough.  I fortunately have a very supportive and caring husband, and parents.  I am blessed with a few special and close friends, but ones I don't see often. 

I know when you have a baby, you are already giving up a lot.  But I didn't know I signed up for this.  My dad believes Carter chose me before this life, and I don't know if that's true.  Trust me, after all that I have written, I love him with all my heart.  If I didn't, I wouldn't care like I do.  But some days I need to yell out "I've had enough!"  It may not be just because of today, but a long series of events.  I don't know if scriptures, quotes or inspiration will cheer me up right now.  I just need whoever is reading to know how hard this is..not for a pat on the back, but just to know.  I am a perfectionist, so when everyday doesn't go just right I get really frustrated with myself as a mother.  I know eventually some things will improve, but more will be added.  This is my little tantrum, thank you for reading.

Feeding Challenges

Carter has been quite difficult to feed lately, because he only eats pudding.  I know it sounds terrible, but it's true.  He coughed so much with applesauce that we stopped doing that.  He didn't like his yogurt or jars of baby foods anymore, so we stuck with what he liked.  I thought I was doing a pretty good job, because people kept telling me he has chunky legs and he isn't dehydrated.  We are waiting for his G Tube surgery on Sept 2nd and trying to keep him maintained until then.  Since he hasn't gained weight in about 5 months, I have been trying to get him to drink or eat as much as possible.  I went from feeding him 3 times a day, to feeding him 4 times a day and sometimes twice at night.  He isn't eating as much at each sitting, but it seems to be all he can handle.  His feeding specialist said this was quite normal.  The frustrating part is feeling like I work at it so many times a day, but overall he isn't getting much at all.  And the waking up at night part has been extremely frustrating and tiring.

His feeding specialist told me to go get a food processor and start making different foods.  Why am I so stressed out about this?  Well, because I don't like cooking at all, I am alone at nights for dinner because my hubby works, and I'm not creative with food.  I am also nervous about this change because Carter doesn't seem to like many foods, but I guess I need to at least try and introduce him to new kinds.  I know most Moms probably already do this, but since my baby isn't "normal", he provides a bit more of a challenge.  So I went and bought a food processor, a mini one, and I'm going to give it a shot.  I may not do meats because eww, that grosses me out.  She suggested making a cheese sauce and mixing it with veggies or meats.  Here is the recipe, she said it is delicious:
Melt 2 Tablespoons butter in a sauce pot over medium heat, then add 2 Tablespoons flour.  Mix until smooth.  Slowly add 1 Cup of milk to this and stir until it begins to get thick.  Add 1 Cup of cheese (cheddar, Swiss or Parmesan) to this and stir until melted.  Add salt, pepper and a pinch of nutmeg to taste.  Parmesan is great on broccoli, or if you add some pesto to this, it's great with chicken and pasta.  A combination of Swiss and Cheddar makes a really good sauce for mac and cheese. 

Sounds simple enough, and then she said to freeze in an ice tray and thaw the leftovers.  I think I'll try the cheese sauce with spinach first, then work my way to more creative things like possibly asparagus or mac & cheese.  Why cheese sauce?  Because it's high in fat, calories, calcium and more.  She said what little Carter will eat, we have to pack with as much as possible.  Any suggestions for simple things to try in my new food processor?  We are on a tight budget so I'm wondering what else to try.  I know he needs protein, so what should I try?

I know it might sound weird, but I'm having a hard time with this new change.  Some days I'm like, okay I am doing alright.  Then we have to add new things to his therapy routine, and then I get that down, and then something else comes up.  I don't complain much, but I've been getting really down about it lately.  I guess I'm nervous waiting for the next thing to happen.  Most families, not all, have healthy and normally developing kids.  Sure they have their own challenges, but it's not the same.  When I think of the future, I think that I am going to have to carry Carter around, help him dress and bathe and eat for so long...I am going to have a "baby" for a long time still and he is 20 months old.  Some days I cope well, and others like now I start to freak a little.