Sick Boy

Poor Carter has been a sick boy lately- we has had a cold and cough basically for 3 weeks now.  A few days ago I thought he was getting better but then Friday his runny nose and cough came back even worse.  That night he coughed almost constantly and we tried to keep him upright.  We ran a warm humidifier, rubbed Vicks on him (feet, chest, back, neck), gave him some Tylenol, etc.  He did not sleep well and was very sick.  In the morning I noticed he was breathing rapidly so we took him into an InstaCare. 

They tested his oxygen which was normal, but he was still breathing apparently faster.  So then they ran a strep test- it came back positive immediately- and then they did a breathing treatment on him.  Even after that his oxygen stayed the same.  They did a chest x-ray and saw something in his lungs.  After a few hours there, the doctor recommended we go to Primary Children's since he could do nothing further at his clinic.  We went straight there and stayed in the ER another 3 hours or so.  They started him on oxygen since he was breathing so hard, and ran a bunch of labs.  Eventually we were admitted to the 3rd floor and given a room so he could be watched overnight.  His chest x-ray was not yet determined if it was pneumonia or aspiration, but they gave him antibiotics anyway to treat the strep as well as possible pneumonia.  They gave him fluids as well as oxygen to keep him comfortable.  Before we left that night, he seemed to be breathing harder again so they suctioned him out several times.  He hates it and gets so worn out after it, he usually falls asleep.  Since we knew he was in good hands, we went home to get some rest.

We ended up getting 4 different calls over the next few hours, so we didn't sleep as well as we had hoped.  They had decided to send Carter down to the PICU (intensive care unit) for more intensive oxygen and breathing therapy.  I guess while down there, he also was not responsive and was not waking up.  They seemed quite concerned about this, but I'm sure he was just exhausted.  When we came back in the morning, we were nervous about how he was doing.  By then, he was doing much better and was not breathing so hard.  They continued to wean him off the super high flow with humidity, and he tolerated it just fine.  The nurse there was great, but the room was kind of awkward and not comfortable.  My parents visited him and gave us a break so we could go eat.  At about 5 p.m. they finally transferred him back upstairs to the 3rd floor once again.  He did great with his meds and bolus feeds, and his breathing was much improved.  We left that night feeling much better, confident we would go home the next day.

In the morning we came back, and he was doing much better.  He was more active and awake and on a pretty low flow of oxygen.  We tried taking him off to just room air, but he dropped pretty fast in sats.  We decided rather than stay a few more days just waiting for him to get off, that we would come home with the oxygen.  They gave him a flu shot and a prescription before we left to further treat his strep.  While we had not expected a weekend stay at the hospital, I am glad he was well taken care of.  He is still really sleep and isn't awake for long, but he is in good moods when awake.  The docs said he should be feeling much better by mid to end of this week, and should only be on the oxygen at a week max.  We will follow up with his pediatrician to determine when we can take him off it.  In the meantime, to avoid spreading his cold and strep, we will be home and recovering.  I'm crossing my fingers that we both don't get it as well.  The docs determined that he probably doesn't handle colds as well because of his low muscle tone and aspiration issues; he really doesn't handle the mucus well at all.  Here's to hoping he doesn't get sick anymore this year.

Baby #2

8 weeks

We are happy to announce that Carter will have a sibling the end of April.  I am 12 weeks along and due April 29th- we find out soon the gender and are very excited.  While nervous at the prospect at having 2 children, I am excited for the close bond I am sure they will have.

St. George Trip

We had a fun girls & kids trip to St. George to see my sister Brooke (far left in the green) and her newest baby Bradyn.  We also went to see The Little Mermaid at the Tuacahn Theatre.  I drove up in the truck with my mom and Carter, and Amber drove up with Krystal and Brittlyn in my mom's Pontiac.  Carter was a gem during the ride, and most the trip as well.  We enjoyed going shopping at Krumpets a cute home decor shop, and the outlet malls.  Surprisingly with all the kids, we were able to do a lot of stuff.  We also went swimming, made a cute craft, went to the park, watched General Conference, went to the show, went on a nice walk in the canyons and got yogurt at Crave, and more.  My parents own a second home in St George, and my sister and her husband and 2 boys rent it out while attending school down there.  It's nice to have it so that we can vacation there as well.

It was fun watching the 4 cousins look at each other, and play together.  It was a nice way to get out and enjoy the scenery and some new things together as girls...and babies.  Peyton is almost 2 1/2 years old and he enjoyed playing a lot with Brittlyn who is 9 months-they even kissed a few times.  Carter is always content to chill on his own, so he spent a lot of time on the floor, in his swing, or a saucer toy my sister had.  Baby Bradyn is so adorable and I miss holding him already.  Next time girls-no babies!!

My Thoughts on Motherhood & The Journey

I have been thinking off and on about motherhood for the past while, and I thought I'd share some of my thoughts.  When I found out I was expecting Carter I was so excited, even though it was a surprise.  I spent the next 8 months reading books, talking to people and getting all excited.  Near the end of my pregnancy I had several things that got in the way of really enjoying my baby showers, which should be the funnest part of the pregnancy.  As the end approached, I remember getting nervous and finally a little scared.  I wasn't sure what to expect as he was my 1st, but I knew I was still excited.  I looked forward to cuddling my little boy all day long, and just knew for sure he would fill my heart to brimming with love and fulfillment.  My husband Chris was also excited, but I think he knew a little more than me what to expect the first while as he had 2 little sisters.  He knew about the crying, the lack of sleep, the diapers, etc.  I was just all goggle eyed thinking of this tiny warm person that would be all ours, and was sure I would just love it.

I was induced at exactly 40 weeks on my due date, December 8th 2009, because I had high blood pressure.  I checked in that Monday at 4 pm and my Mom took me in because Chris was at work still.  He came about an hour or so later when I was already hooked up to my IV and getting ready for labor.  I won't go into too many details about the birth, but it went smoothly for me and I felt pretty much nothing.  I had Carter at 4:12 a.m. and he looked a little bluish gray to me, but I guess that was normal.  While they were checking him out, I was trying to see what was going on but the doctor was still working on me.  I heard him cry a little as they tried to get him to pink up, then they said they would need to check him out further in the NICU and would call me later to tell me what was going on.  I remember I wasn't too concerned yet, and I asked if I could hold him quickly for a picture.

After the nurse took the picture, they whisked Carter away and Chris followed after.  The nurse cleaned me up and transported me with all our stuff (we had too much) to my room in the post delivery department.  I got a call that they would still need him for a bit, and Chris came to where I was and showed me some pictures he had taken of Carter.  He looked really skinny and had kind of reddish hair; he was 6 lbs 10 oz at birth and 20.5 inches long.  As we settled in, still not worrying, I talked to a few people including my mom on the phone and was still okay.  One of the main doctors up in the NICU came down and asked our permission to run an IV through his belly button to run some tests I think.  She said they had concerns and needed to keep him for awhile.  I went to see him in the NICU a few hours later, and he was all hooked up and so tiny.

As we talked to the doctor and nurses there, we realized that something was definitely wrong.  That sounds stupid now, but I didn't really get it for awhile.  He had an oxygen helmet on, as well as an IV through his little hand and belly button.  The doctor we had spoken with originally told us to plan on being here for 2 weeks, and that he had pneumonia and some fluid in his lungs.  My memories are still a little hazy of that time, probably from exhaustion and emotions, but it was quite a rollarcoaster.  He was indeed there for 15 days, we went home the day before Christmas Eve.  He came home on oxygen and we had to adjust to having a 2 week old that we still felt like we didn't know, as well as his oxygen needs.  I didn't get to hold him for a few days at the beginning, and even then it was only a few hours a day.  They needed to keep him as still as possible and not agitate him.  When we took our new little baby home, I was filled with dread not excitement.  What I had thought would be a normal and healthy experience, had already been so exhausting and draining in every way.  Carter was a good baby, and slept most the time except to eat.  I didn't hold him much at home because it seemed easier to keep him in his bassinet hooked up with his oxygen and such.

Christmas was kind of somber because we were home for awhile, and the postpartum started to settle in.  I struggled with depression for a few months, and it only got better with talking to people including my husband and by taking anti-depressants.  I found that I was resentful of Carter, because of what we had gone through with him.  I had a hard time bonding with him and holding him, and feeling love towards him.  I knew these feelings weren't quite normal and so it was good I sought help.  I won't go into too many details, but it was the hardest time I have ever gone through.  I can completely empathize with those that have had postpartum, the baby blues or whatever they call it now.  It can be very debilitating and scary.  With motherhood already off to a rocky start, I felt like I was behind in getting to know my baby.  As time went on I held him more and felt more connected.  But then we started noticing things along the way that weren't quite right.  Carter hated tummy time and never rolled over, and we noticed his head started getting flat.  I took him into a craniofacial doctor, but he thought it would round out as he rolled and sat up.  Well, months went on and Carter never rolled.

At around 8 months of age, we took Carter back in and insisted he get a helmet.  He had it for almost 3 months I believe, through the holidays and almost his 1st birthday.  We were consistent and kept it on him 23 hours a day, but it only grew out just a little.  At his 9 month pediatrician check up, the doctor was concerned he was quite behind and suggested we start early intervention.  Carter had started sitting up pretty good at about 8 1/2 months but was still very wobbly.  DDI came out and did an assessment on him and determined he qualified for services, because he was at about a 3 month old level.  I was kind of devastated at the news, thinking I had done something wrong.  It is real easy as a mother to feel guilty and blame yourself.  As we started therapy, I kept going back to the early days blaming myself thinking he needed therapy and his helmet because of me.  Maybe I didn't do enough tummy time, didn't hold him enough, I put him in his bouncer too much, etc etc.  At 10 1/2 months Carter suddenly had a seizure, and we met with Neurology and had an EEG done.  They diagnosed him with epilepsy and started him on Keppra.  Less than a week later, I had just come out of the shower to find Carter seizing horribly.  He was getting all stiff and had turned blue; I rushed him to the living room to lay him down and called 911.  He threw up during this time and I rolled him to his side.  The next 5 minutes or so were the worst of my life.  I was alone with him, screaming and sobbing on the phone to 911 as I tried to perform CPR on Carter, not really knowing what I was doing.

The EMT's rushed into the apartment and started working on him, as I rushed to get dressed as I had just showered before this happened.  They said it took them about 30 seconds to get him breathing again, and he was rushed in the ambulance with me to Primary Children's.  Chris rushed behind us from school, panicking I'm sure as I was.  Carter ended up being in the hospital for 3 nights (over Halloween), as we monitored his breathing, seizure activity and revved up his Keppra.  He slept most that first day, but seemed back to normal after that.  I was nervous bringing him back home, but thankfully he seemed seizure free for some time.  As time went on, we added another seizure medication, took him off the Keppra, and added another.  His seizures have been called generalized by the neurologist, and they suggested we meet with Genetics to find out what he had.  He had seizures almost daily, some times not, but never as bad as that one he had had.  Through several doctors and nurses, we were able to get rushed into Genetic Metabolic with Dr. Warnock.  After considering Mitochondrial disorder, we discovered end of April 2011 that he had 1p36 deletion syndrome. 

His life has been a bit of a rollarcoaster, full of doctors, medicines, appointments and therapy.  I have gotten very involved in his care as I am home with him all the time.  His seizures are still not controlled, and we will probably be doing the Ketogenic diet here in a few months time.  Through his therapy, he has made some small gains such as rolling both sides and playing with more toys and looking around more.  He has come a long way, but still has a ways to go.  It took a lot of time and work to find out what Carter had, but the diagnosis doesn't really change who he is.  He is still my adorable little boy who loved to spin toys, and now loves a lot of different toys.  Sometimes the seizures seem to take away his awareness and energy, but then he comes back and smiles at me in his sweet way.  I know I have told some of this story before in earlier posts, but I've been thinking alot about his journey and where he is today.  His G Tube was obviously a great decision, because he now weighs over 26 pounds when he was 23.  He is looking around more, grabbing more and seems more engaged in life.  Motherhood has been a struggle for me as I have not had a "normal" experience.  Sometimes I get mad at why it happened to me and Carter and Chris, and I get down on myself thinking I'm not doing enough to help him progress.

I know a lot of women enjoy motherhood, but for me I still really have to work at it.  Carter is a lot of work in the sense he is like 26 pounds of dead weight and I have to carry him around everywhere because he can't crawl or walk.  His feedings are now easier, but the equipment is cumbersome sometimes.  I have gotten more comfortable going out and about, but it isn't easy with having to carry him.  It is also hard with kids like him that are disabled, because a lot of days you don't get much back in the way of feedback.  I can read him books, play music, play with him and take him on walks and not get much of a response back.  It can be very frustrating and some days depressing; it makes it hard to keep him entertained.  Some days he does great and looks at me a lot and seems happy, but then he retreats back again into his shell.  I know it takes a lot of work for him to do anything, so I'm glad for the times he smiles and looks at me.  I have grown to love Carter so so much, but most days are still really hard.  I just want the best for him, to be seizure free and able to walk and run around and play.  I want him to be able to enjoy life and feel comfortable in his body.  Motherhood to me has been such a learning process, certainly not an easy or always enjoyable one.  A lot of days I find myself very bored, because Carter is quiet and can't talk or babble and is content to just sit and play with toys.  I've had many people say how jealous they are and that they'd trade kids with me for a day.  That can be hurtful, because I would give anything to have a kid that can run around and go crazy and have fun.  It's funny how when you don't know how it is, you always wish for the other side.  I wouldn't trade Carter for anything, but I can always hope for more for him.

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.