The Only Way

For the last several weeks Kai has been in a steady decline. We have tried again and again to get him seen by the pulmonologist but they kept putting us off. Finally just before Christmas he took a nosedive and it was hard to keep his oxygen saturation levels above 90. In fact, it was hard to keep them above 80. We thought that after Christmas we would try again, but then we were told that no pulmonologist would be available all week, so we finally resorted to our last option--we brought him into the ER. Good thing we did because they converged on him and did some serious work to get him breathing again.

When we walked into the ER at Primary Childrens they led us straight to a Resus room and there was a team of six working to get his oxygen levels back up. They took a blood gast and it came out over 130 (if you remember it is supposed to be below 40)! They bagged him (meaning they used a bag to help keep his airway open), they realized that he would need ventilator support, so they attempted to put him on the ventilator, but Kai decided he didn't want that, and fought against it to the point where they had to sedate him before he would accept the ventilator. Once he was stable and they had a room prepared, they transferred Jeremy to the PICU.

  In the ER waiting for the transfer to the PICU

The rest of Tuesday was spent simply monitoring his condition and they refused to allow him any food until Wednesday afternoon. They kept him on an IV so he wouldn't dehydrate during that time. Honestly, I am not satisfied with their answers as to why they wouldn't let him eat, and I am more than a little irritated about it. However, that is really the least of my frustrations. I will get to those in a minute. Wednesday was spent making decisions. What kind of support does he need? What ventilator would be best? There is a new model out that would only require one day of training (versus the normal three) and is much more compact and user friendly, however, Kai is too small for it, so we were back to the drawing board. They decided on an LTV which mimics a bypap and we set training for Friday, Saturday, and Sunday. After that we have to do a 24 hour room-in, which puts us home Monday or Tuesday if Kai cooperates.

  Wednesday morning--feeling much better and more like himself.

Wednesday afternoon and evening were very rough for Kai. He kept de-satting as he slept (what we have been calling his apnea periods) and so they kept increasing his oxygen. I told them over and over that increasing his oxygen doesn't help.   Too much oxygen is just as lethal as too little oxygen.

The nurse on the night shift and I got off to a pretty rocky start.  I consider myself a pretty easy going person, and I am definitely not confrontational.  However, I am not a pushover either, but I do tend to let things slide that perhaps I shouldn't at times.  Wednesday evening was not one of those times.  The nurse, we will call her S, came on shift.  She seemed nice enough, and since Kai had settled into a good sleep rhythm I turned back to reading.  S left the room without a word (for those of you who have had any experience with ICU then you know that they are supposed to let you know where they are going and who/where the nurse is who is to be contacted if you need anything).  After about ten minutes I saw her through the glass in the next room.  Kai's ventilator alarmed for a moment.  Five minutes later he de-satted (oxygen saturation levels dipped below 90).  I went over and did the now standard of rousing him and he popped back up to where he was supposed to be.  S is still in the other room--remember, this is right next door with a glass wall--and she hasn't so much as glanced over.  I settle back into reading and S goes to the nurses desks right outside the room.  She spends some time on the computer, twirled in the chair, chatted with a few other employees, and finally takes a quick glance into our room.  It was such a quick glance that she didn't notice that he had previously desatted (the monitor shows when it has alarmed until it is reset).  Then she meanders back into the other room.  Kai then desatted again and I got him back up pretty quickly, but he still alarmed.  Five minutes later he desatted again, and I decided to wait a bit to see if she will come.  By that time I was getting pretty annoyed that she was not responding to his alarms.  She should be in the room checking once the alarm goes off--especially the ventilator alarm, but three alarms went off and she had yet to respond.  So, I waited until he dove into the 60's and she still hadn't showed.  I got him breathing and back up in the 90's, but it only lasted about seven minutes before he went down again.  I decided that I would not intervene at that point and see how long it took for aid to come.  It was after ten at night and I was due to go soon and I needed to be certain that my son would be cared for.  As his saturation levels dropped for the fourth time, I stood by his bedside and waited...and waited...he was into the 50's before three other nurses/techs came in trying to resuscitate Kai.  As a fourth one came in I demanded to know Kai's nurses full name (she was still within eyeshot right next door) and that fourth nurse went and got S.  Kai had dipped into the 40's by then and was a deep purple and frantic.  As he started to return to normal color I laid into the nurse.  In fact, I was so upset and scared (with how low Kai had gotten) that I was shaking.  Five alarms and no response from her--or anyone for four of the alarms.  How am I supposed to feel safe with having my child there?  There is no reason he should have gotten that low, and then we spent the next forty minutes trying to calm him down.  Their solution was to sedate him.  I said no.  The hardest part?  I couldn't even hold him.  I had to do a modified hold with him in the bed to calm him down. 

To her credit, S was very apologetic and said that she would be more attentive.  She said that she would bring Kai's monitor up in the other room (they do that so they can monitor both patients--and she should have had that up from the beginning).  After I calmed down and Kai calmed down I apologized for yelling.  S left me a note in the morning that told me how the rest of the night went and once again apologized for what happened and wished us well.  I think that we left on decent terms at least.

Thursday was a day of discovery.  He was still fighting his ventilator and still desatting.  He had an echo cardiogram done on his heart to check for pulmonary hypertension.  There is evidence of slight, but overall his heart remains strong and healthy.

They also did a second chest x-ray because they couldn't determine how his lungs really looked.  The second chest x-ray didn't give us any more conclusions than the first.  We could tell that he has had some lung collapse on his left side, but beyond that, it was inconclusive.  The pulmonologist was worried about secretion plugs in the lungs and possible pneumonia because his CO2 levels were once again climbing.  Wednesday morning it was 59, but by Thursday morning it was back up to 70, which shouldn't be happening on the ventilator. 

Kai also had a pretty big leak with his trach (meaning that the pressure/air from the ventilator is escaping from around his trach and not going into his lungs) so they increased his trach from a neo to a pediatric.  When that didn't fix the problem, they changed to a cuffed trach, which has helped with the leak.  Blood gasts were taken again and CO2 levels were still way to high, in the 60's, so they decided to do a bronchioscopy.  The purpose of that was two-fold: to see if there were any mucous plugs and flush them out, and also to check for pneumonia.  We found very little mucous/secretions and no plugs.

  During the bronch--they had to stop because Kai decided to wake up!  He was alert and just staring at the doctor as if to ask what he was doing!  They had to get another round of sedatives into him and even then it took quite some time for him to finally go out.  Funny thing is, he had been asleep all day until that point!

What we discovered was so much more.  We have been absolutely blessed not to have a dead child on our hands.  Nothing less than divine intervention has been keeping Kai alive.  The bronch showed that Kai has both trachialmalasia and bronchialmalasia.  What that means is when he coughs or gets agitated his airway collapses.  Completely.  Trachiamalasia is usually solved by placing a trach, only Kai's is so severe that it extends past his trach tube.  For the bronchialmalasia, his right airway collapses completely and the left narrows to the point where it is almost all the way collapsed.  All those times that I have been panicked in the car (and at home) because he was turning blue and his sats were dropping were real causes for concern.  The doctors have even commented on how amazing it is (and what a testament to our care) that Kai is still with us. 

Before the bronch, there was talk about having Kai on the ventilator full time until he gets over his cold, then only having him on it at night.  With this discovery, we are looking at 24/7 ventilator support.  There is the possibility that his condition might slightly improve with age and size, and there might be surgeries that we could do as he gets older that may help, but only time will tell.  The outlook does not seem promising on that end, but we will know more as time goes on.

Friday, we began our ventilator training class, and Kai slept the day away.  The only real changes are to get Kai to the point where he is comfortable with the settings so he will stop fighting the ventilator.  They also hooked up a machine that would measure his CO2 output so they wouldn't have to keep drawing blood from him.  His CO2 levels were still in the 60-70 range.  Since Kai was sleeping, we decided to take a much needed break and had a date night for ourselves.  The first we have had in several months.  We went out to dinner and went to see the new Sherlock Holmes movie.  Definitely worth seeing!

The CO2 monitor.  The reading on the far left is his CO2 level, which should be under 40.   It was 70 when this picture was taken Friday afternoon.
  Fast asleep.  He will often sleep with his eyes open.

We are missing Zuri during this time.  She has been staying with J's parents for the week.  They offered to have her over for a couple days before this mayhem started, and it has been a huge blessing for us because we haven't needed to worry about her.  Thursday, Zuri and I did Facetime on the IPad and she and J talked on the phone.  She was so excited to tell me all about the dog and show me all the toys that she was playing with.  She is having fun at her grandparents house and playing with her cousins.

It is now Saturday.  New Years eve.  We will spend the day at the hospital, learning how to care for our son with the ventilator.  We will spend New Years day doing the same.  2011 was a very rough year and I am glad to see it end.  Hopefully 2012 will be better.  I have been looking forward to the start of a new year-- new beginnings.  I was hoping as all this started that we would be able to have Kai home at least for New Years day, but that is not going to happen.  We will weather this storm and look to a brighter day to come.

Merry Christmas!!

From our Family to Yours

Up All Night

Most of the nurses that come in and take care of Kai are wonderful.  However, there are a certain few that for one reason or another, we don't like.  There is one is particular that we really dislike.  That nurse was supposed to come Saturday night.  For the third time in the last month, she called in sick.  We received a phone call from the nursing agency about eight that night.  The nurse called in sick and no one else was available....so....we went without a nurse Saturday night.

It wouldn't have been too bad, except we went to bed really late Friday night (as in after 2 in the morning) and we were up by 7.  It was my dad's last night and we stayed up late watching A Christmas Carol (a family tradition for Christmas). 

I stayed up until 2:30 with Kai, who was restless and fussy all night.  He would drift off to sleep only to jerk himself awake and fuss all over again.  Finally, at 2 he settled into a decent sleep.  Going from constant up and down to nothing caused me to to get drowsy, so although I had tried to make it until 3 so J could sleep longer, I gave in and woke him early.

J took over from 2:30 and said that Kai kept having apnea episodes so he was busy as well.  Although it was rough, we made due the best we could.  We feel it was a blessing that it happened on a weekend night instead of a weekday when J isn't home to help.

We are currently going through the reapplication process for the nursing.  60 days sure go by quickly.  We are still so borderline with "needing" a nurse.  I think the whole process is really stupid because it is all done on a grid system instead of looking at the child and the child's circumstances.  Simply because Kai doesn't need his thumb splints anymore we are now lower on the grid score which puts our "need" lower, even though his apnea and aspiration issues are more severe and  cause that we maintain 24 hour line of sight with him.  There is no sleeping when taking care of Kai--it is literally impossible with all the care that he requires, and yet, because he doesn't need the thumb splints (all they are are little pieces of fabric that wrap around his thumb and wrist to extend them--takes two seconds to put on and off, and they are not critical like many of the other things we have to do with him now) we may not get nursing.  Ridiculous.  We are at the point where we now need to get a letter from Kai's pediatrician on why we need a night nurse.  The sad thing is, Kai's condition is much worse than it was 60 days ago when we were approved with no problem.  He didn't have the apnea then.  He didn't have the cold and the increased secretions and the wheezing and the problems breathing.  It really is a sad commentary on our society--everything is about numbers.  A child may have a lot on the grid but they are little things like splints or medications will get nursing, while a child who doesn't have very much on the grid but is more severe such as apnea doesn't qualify.  Not right.

Onto better things.  It was great having my dad come out for the couple days he was here.  The weekend with my dad was really nice but way too short.  He was able to get some quality time in with both Zuri and Kai.  Zuri really enjoyed having Grandpa around.  She keeps asking for Grandpa and is missing him already!

7 Months

Seven months.  13 pounds.  Our little fighter has gotten so big!  With the holidays our appointments for the last month have slowed down somewhat.  Kai is still getting over his cold, but seems to be doing much better.  His bum is still red and raw so we are trying to find a different formula for him because nothing else seems to help.

Not too much has changed from last month.  Kai still needs head support, sucks on his fingers, and makes the cutest spitting/raspberry sound with his lips.  As mentioned previously, this month has been a little rough on him, so we have had to increase his oxygen support as well as an increase in suctioning.  He has developed sleep apnea, which is both good and bad.  Bad, because obviously not breathing or extremely shallow breathing while sleeping is not only not good for good sleep cycles, but is also scary.  Good, because sleep apnea will basically guarantee that we will keep the night nurse.

Kai is tolerating his hearing aids much better.  We have gotten him to wear them for good half hour periods before he gets fussy.  He is responding to sounds a little bit better with his hearing aids, but it is still unknown how much he actually processes.  He does not respond to his name (that is our hearing help goal this month). 

He is blowing bubbles in this picture. :-)

We are still continuing the sucking baby food from our finger and that is going well.  We have also added in a sucker for him.  The goal is for him to hold on to the sucker and bring it to his mouth on his own.  We have been somewhat successful.  He will hold on to it for a short time, occasionally bringing it to his mouth.  He does seem to like the sucker though!  Uh-oh, he already has a sugar tooth! ;-)



 Special moments with Daddy.  I love how tender J is with Kai.  This picture is to give some perspective on how big he is getting.  Hard to believe that we brought him home at just under five pounds.  He looks and feels like a baby now and not a little doll.  The picture also shows how Kai loves to be held.  He will mold right to you.  If you put your hand near his face, he will turn his face into your hand.  It is so sweet.

Busy December

As I mentioned in the previous post we have had a busy month starting with Thanksgiving, and it is not slowing down!  On top of all the normal appointments and the colds that have been going around, we have had lots of family events!

November 30th, J's younger brother, Cory, went into the MTC to serve his mission in Atlanta, Georgia.

We are so happy for him and we know that he will be blessed for spending the next two years serving the Lord.  We will miss him and we know that he will return with honor.

Next we had the birth of Jaxson to Amanda and Tyler.  It was a long 24 hour labor but mommy and baby are doing wonderfully.  Jaxson was born December 3rd, 7lbs 6oz, and 21 inches long, and looks just like his daddy!


We also had the wedding of my sister Shawnie.  She was a beautiful bride!  She and her husband are so perfect together and the wedding was absolutely wonderful.  We wish them much happiness for the future!

Fun little factoid: I now have two brothers-in-law with the same first name, very similar last names, and they are both from the same county, cities right near each other!  Crazy what a small world it is!

Finally, we had the engagement of my brother--Shin, and Heather.  No official date set for their wedding but it looks to be sometime in the late spring.  She is also from Lake Tahoe, so it is nice to have someone from home as part of the family!


Thursday, Dad is coming out to spend a couple days with us before Christmas, and then Saturday we have J's Family Christmas Party!  Then it's Christmas!  Wow, how fast this month (and year) has gone!  Hopefully 2012 will be a fabulous year!

A "Little" Cold

It has been a busy few weeks.   After Thanksgiving we all have been passing around a little cold, and even as careful as we have been, little Kai caught it as well.  It is his first cold, and it has been rough.  It is an upper respiratory cold which is a good thing, because it has stayed away from his chest and lungs.  However, he has had so much mucous in his nose and throat that he coughs.  He has deep rasping almost mucousy sounding coughs but when listening to his lungs, they are clear (after suctioning).  He is also wheezing as he breathes and he has slight retractions (indication that he is having to work harder to breathe than he should).  His yeast infection, which was almost completely cleared, has taken off again, so that his poor little bum is raw and bleeding. 

Our first indication that Kai wasn't feeling well happened Thursday, when I noticed that he had a slight runny nose and was coughing slightly more than usual.  Since we had also had a dramatic decrease in temperature at the same time, I thought it was just a sign that I finally needed to turn on the heater (Kai's machines generally keep the living room at a nice 68 degrees).  By Sunday his condition has worsened to the point where we were going to take him into an instacare, but he settled down by the time we were getting ready to go.  First thing Monday morning I took Kai to his doctor's and he was diagnosed with just a "little" cold.  He said that the only thing we can do is increase his oxygen and increase our suctioning.  Because his lungs sounded clear, there was nothing else we could do at that point.  If we give him antibiotics, it will make his bum worse. 

For his part, Kai has tried to rest, but about a  month ago, he developed sleep apnea.  He doesn't stop breathing, but his breathing either becomes extremely shallow or extremely slow.  Either way, it results in a dramatic decrease in his oxygen saturation levels.  When it first started happening, I thought it was just sensor malfunction.  So, I cleaned his sensor then a couple days later changed it.  The apnea happened so infrequently at first that when I would tell others about it they also just wrote it off as sensor malfunction and none of us were too worried.  Over the last few weeks, however, the apnea has become more consistent and even the nurses are noticing.  It happens when Kai falls into a deep sleep; his sats will slowly dip to 92, 88, 85, 83, 79, 77, 72...  There have been times when I have waited to see if he will pop back up, which rarely happens.  So, I do something to stimulate him.  Usually I rub his back or change his position.  Combine his apnea with coughing, and poor little Kai can't get into a good sleep.  Either he will drop his sats or start a coughing fit.  Then add in his raw bum, so every time he poops he cries because it hurts, and it hurts worse when we clean it.  The prescription we have to help it (one oral one topical) also stings when applied so he screams and writhes in pain whenever we change his bum.

It is so unfair that he has to go through so much with what he already has going on.  I cannot express how grateful I am for the gospel in my life and to know that there is a purpose to all of this--even if I can't see it clearly now.  I am grateful for the knowledge of the Plan of Salvation; I couldn't imagine going through all this without it.  I am grateful for J, who has been a source of strength and a rock to lean on.  This has not been easy for either of us, but together we can make it through.

Thanksgiving Weekend

Thanksgiving weekend was very busy for us this year.  My grandparents were unable to make it out, and they were missed.  We went over to Amanda and Tyler's house for Thanksgiving.  We went out in the canyon and took some family photos--since it will be the last before Cory leaves on his mission.  Then we had Thanksgiving dinner and spent the afternoon relaxing and looking at ads for Black Friday.

Kai did really well.  He was fussy when we first got there, but once we went downstairs and put him in the mini-crib Amanda and Tyler had set up, then he went right to sleep.  He slept nearly the entire afternoon, which was really nice.  Zuri ran around with her cousins and had lots of fun.  She even ate like a champ--if only she would do that every day!

Kai with his great-grandmother--he was mid-blink so he looks sleepy.


I had set Kai down on his back and went to get a blanket.  He rolled to his side and was asleep before I turned back around.

Friday was spent Black Friday shopping.  Oh yes, I braved the crowds, but I didn't get up super early to do so.  The crowds really weren't that bad, and I was able to get some really good deals.  I spent the morning shopping on my own and then met up with Josh's mom and sisters for the rest of the afternoon.

Saturday morning was spent finishing up shopping, then I worked on my talk (I gave a talk on gratitude at church today).  Once Zuri woke up from her nap, we did some Christmas decorating and got our tree up.  We don't have a tree topper yet, so the tree is not completely finished.  Zuri absolutely loved decorating the tree.  She has been enamored with Christmas trees ever since they started showing up in the stores at the end of October.   She kept saying, "oh so pretty!" every time she put an ornament on the tree. 

1st Haircut

Kai had his first haircut!  His hair was getting way too long and scraggly to ignore any longer, so we finally took him in and got his haircut.  He looks like a little boy now!  Kai really didn't like having his haircut, but with daddy holding him he did pretty well.

Overcoming Fear

For as long as I can remember, we have had this porcelain doll sleeping on the moon hanging on Zuri's mirror in her room.  Zuri hasn't really paid much attention to it, except lately, where she has started to become increasingly afraid of it.  I am not sure why she has become afraid, but it has gotten to the point where she will skirt around her dresser to avoid the doll, and even make me take her out of her room.  She wouldn't touch it even with me holding it and her.  Finally, today I took the doll down and I have been getting her "acclimated" to it.  After some time, I was able to get her to hold it and now she is telling me how nice the doll is and that it is not scary.
Hooray for overcoming fears! 

Six Months

 
The last two weeks have been rough.  Not only have we had the emergency room visit, but we have had a ton going on and appointments galore.  Kai has had three other incidents of respiratory distress, but they have been more mild and manageable than that first one.  I have had to do two emergency trach replacements--one by myself.  That was very nerve-wracking but went off without a hitch.

Kai also celebrated his six-month birthday.  Hooray!  Six month stats:  weight is 11 pounds 12 ounces, and he is 24 inches long.  He is in the 1% for height, weight and head circumference.  He still needs head support, and he can roll from one side to another, but he does so only sporadically.  He absolutely loves his fingers.  He will chomp on his fingers all day long, but still refuses a pacifier.  His OT said that he is probably too old now and will never take to the pacifier, but sucking on his fingers is a good sign.  

At his six month check-up, his pediatrician was impressed with his overall growth.  He did have concern over his head, however.  His soft spot is almost completely gone, but his head is slightly misshapen, and not in the cosmetically unpleasing way.  What that could mean in the long term is uneven growth, and even restricted brain growth.  He has recommended that we see a surgeon at Primary Childrens.  What they would do is break his skull and get it reformed.  To say that I am apprehensive about doing something so severe is an understatement.

The CCV Trach Clinic went well.  He saw six different specialists and they were full of praise at how well Kai is doing.  There was no mention of him going back on a ventilator or needing any sort of ventilator support.  Each specialist made a comment about how well I was doing with Kai and how good he is looking.  It was very refreshing to hear positive feedback and to know that my hard work has been paying off. 

We also had an appointment with the Geneticist this last week (why they didn't piggyback onto the CCV Trach Clinic, I don't know).  I left feeling extremely frustrated and angry with the way I was treated.  I am going to rant for just a second.  I understand that doctors are busy and their time is valuable, but so am I, and so is my time.  I make an effort to make it to my appointments on time, and with two children and all the crap I have to do with Kai it is extremely difficult.  It takes three times as long with Kai as it would a normal healthy child.  I just ask that my time is respected as well.  There is a reason an appointment is made.

Now, let me backtrack a bit.  I get to my appointment and we wait for about ten to fifteen minutes in the waiting room.  No big deal.  We go in, and Kai's height, weight, head circumference, and blood pressure are taken (same with every appointment we go).  Then we wait another ten to fifteen minutes. The genetics team comes in and we talk with them.  I will get to what they said in a moment.  After that, they say they are going to bring in the lead doctor (head of the genetics team)--what, my appointment is not over?  Okay...back to waiting.  Over forty-five minutes later the doctor comes in.  By this time Zuri has been telling me she needs to go potty and that she is hungry.  Kai has missed an entire feeding, and I am seething.  I had literally gotten the kids all put together and had put my hand on the door to leave when the doctor walked in and reiterated exactly what the genetics team had told me!  He saw that I was upset and had the gall to suggest that I needed a case manager to help with all my appointments.  I managed to keep my cool and be polite, but I wanted to say, "I am just fine making it to my appointments.  I don't need a case manager, I just need doctors to respect my time and show up."  Then he tells me that we could have met at the Riverton Clinic (which would save me over 30 minutes of drive time plus the gas)!  We have tried to get all our appointments moved to the Riverton clinic but they wouldn't cooperate!  It is just like with the pulmonology when the doctor told me he wanted to see Kai again in October, but when I called to make an appointment, they said nothing is available until December.  By the time I got home from the genetics appointment Kai had missed two feedings.  The worst part about it all is that it could have easily been done over the phone.

The whole escapade with the genetics appointment wouldn't have been so bad if it weren't a reoccurring theme.  Just the day before I had gone to an appointment that should have taken 30 minutes tops, but we were there for over two hours.  In fact, the office had closed down and locked its doors for lunch and was about to reopen for business when I left.  Ridiculous!

As for what the geneticists had to say:  they confirmed the diagnosis of Marshall Smith Syndrome.  They said that J, Zuri and I aren't carriers.  They said that it is a gene mutation that is dominant, so basically, if you have the mutation, you show it--hence Kai.  There is less than 1% chance that we could have another child with the mutation.  They said they can't say 0% because there is always a slight chance but the odds are even greater that we won't now that we have had one child with it (considering less than 50 people worldwide have had this syndrome in the last 40 years, you get the odds).

In a sense it is a relief to hear the news.  There is always something lurking in the back of my mind that wonders if something I did (or didn't) do caused this to happen to my sweet little boy.  There is nothing I can do about a gene mutation.  It happens naturally--part of life.  It is so hard to watch when pregnant women do things that could potentially harm their baby.  I tried to do everything I could so that my baby was healthy.  When my blood sugar came out a bit high, I stopped eating sugar.  Even when I was told I could eat sugar, I still abstained.  I see so many pregnant women doing unhealthy and even risky things and a part of me just cries out at the unfairness of it all.  They aren't taking care of themselves or the baby, why do they get healthy babies?

The other day I was grocery shopping and a woman walked by with a three or four month old.  The mom and the baby were cooing to each other.  I cried.  It seems such a little thing that people take for granted.  I will never hear Kai coo.  He doesn't even look at me and smile.  He doesn't reach for toys.  

I have talked with several specialists about his lack of smiling and head support.  None seem concerned.  They just say that with the trach and his head being so big that it will take longer for head support to come.  They don't want to "limit" him by his syndrome, but we also have to take it into account.  Will he be able to have head support?  Some do, some don't.  We don't know.  Will he smile?  The other children all seem to, so the answer is...yes?  Kai is more on the severe side of the spectrum as far as things go, so really, we don't know anything.

I digress, however.  I didn't intend this post to be melancholy; as I mentioned earlier, it has been a rough couple of weeks.  I am looking forward to Thanksgiving, however, and seeing family.  If the weather remains nice, my grandparents will come out from Sacramento and spend Thanksgiving with us.  We will all go over to Amanda and Tyler's house (providing Amanda hasn't had her baby) and enjoy.  It will be the last family get together before J's brother leaves for his mission to Atlanta.  It will also be the first family function which Kai gets to attend.  Here is hoping all goes well!

Veteran's Day

What a Day!

Today did not go at all as expected.  It started out pretty normally, with J going off to work, but it all went haywire just after nine.  Zuri's new favorite thing is the bath, and since it keeps her occupied for a time (that kid is full of energy), I thought it would be a good time to get some bills done while she was playing in the bath.  I had just gotten Kai's food going and he was sleeping, so I thought all was well as I sat down and started working on the bills for this month.

Shortly after I began, Kai started coughing, to which I immediately rose and went to his crib.  Coughing is often his precursor to spitting-up.  Suddenly, he started flailing around and turning purple.  I couldn't understand what was distressing him so, so I checked his diaper to see if he had pooped (his yeast infection is still really bad and when he poops it hurts him badly).  He hadn't.  Then I saw his formula shooting out of his stomach and the g-tube connector on the mattress next to him.  I couldn't understand how it had come off, but I quickly paused the pump and tried to put the connector back in, only it wouldn't go into the g-tube.  I tried to close the button but it kept popping open, spraying more of his stomach contents.  Somehow, a piece of the connector had come off.

Unfortunately, that wasn't my main concern.  I needed to get him calm and breathing, but he wasn't responding to anything.  Finally, in a panic, I flew over to my neighbor's and banged on their door.  My wonderful neighbor came right over.  Meanwhile, Zuri had gotten out of the tub and was running naked all over the place, not understanding that something big was going on.  My neighbor (whose husband works at home and she has two kids of her own) took Zuri over to her place and was kind enough to drive us over to the emergency room.  I was in such a panic that I couldn't find my keys, which ended up being in my purse.

By the time we reached the emergency room, Kai had calmed down and although still pale, not in the dire state he had been in ten minutes before.  He had even fallen asleep in the car.  We were seen right away at the ER at UVRMC, which is where J told me to go since they "know" about g-tubes, and are equipped to handle them .  Apparently, not the ER staff, because I had to explain several times what the problem was, and what we needed to do to fix it.  When the doctor came, I even explained step-by-step how to remove the old g-tube and insert the new one (which I had in one of the many bags I have to carry around and they had to use ours because they didn't have one).

Don't get me wrong, the doctor was very competent and he and the staff were all very nice and friendly.  In fact, I would definitely go the extra ten minutes there instead of Timpanogos, it is just that I could have replaced Kai's button at home and saved the ER trip (and money) if I had realized that I would be explaining to them how to do the procedure.  In fact, I had started to do it at home, but Kai had calmed down enough that I figured it would be best to do it at the hospital (which is what is recommended if possible).  It is just hard to realize that when it comes to emergencies with my son, I am often more knowledgeable than many of those who are supposed to treat him.  It is a scary prospect.

During our trach classes at Primary Childrens, the respiratory therapist said that when we get home we should call the local fire department and let them know we have an infant with a trach.  So, we did just that.  Their response?  "Well, you will be there in an emergency, right?"  Basically, they don't have the training to handle our son either.  Wow.  Just wow.
   Kai fell asleep in my arms just before the doctor came in and was asleep during the whole changing of the button.  I found some humor in the situation and thought this sprawled out look was funny.

I know that taking Kai to the ER was probably the best thing to do, but afterwards I felt as though I had over-reacted.  I still don't know why he went into respiratory distress, but if he hadn't, I definitely wouldn't have taken him.  I panicked.  Even on car rides (which he has been doing better with), I only have to pull him out of the car seat and hold him to have him calm down.  I have never seen Kai in such a state of panic--he was purple, wild-eyed, thrashing, soundlessly screaming, and sweating.  He wasn't junky either (trach speak for having a lot of mucous and needing to be suctioned), which makes it all the stranger.  His mask was on and covering his trach, the oxygen was set to the right level (I even increased his oxygen a little to get him breathing).  The part of the button that came off should not have effected him (especially his respiratory) so it remains a mystery.

Kai is quick to rebound, however, and by the time we got home, he was in a good mood, sucking on his finger and making farting noises (I think of it as his way of cooing).  The OT came about ten minutes after we got home.  Even though he had had an eventful morning, since he was in a good mood, she decided to try tasting some baby food!  Kai had his first baby food today and he did really well!  The big worry about food with a trach is aspiration.  Kai handled it all like a pro.  He really didn't seem to care about the food one way or another.  The OT said that it is really hard for him to taste it, that it is like eating with a stuffed nose.  You can tell the different texture and a tiny bit of taste.  We didn't even need to suction him after he had the food, which means that he swallowed it into his tummy and not into his lungs (which is common for kids with trachs). 
  After tasting the food.  Total look of indifference on his face.

After the scare of the morning, the rest of the day went fairly smoothly.  We have a long day coming up on Wednesday where we will spend the day at Primary Childrens.  It is for a trach clinic.  Basically, a day for all the specialists to see Kai and assess how he is doing.  It is nice because it takes care of several appointments in one sitting, but it is hard because it is literally all day.  Hopefully all will go well!

Flashback

Last night the nurse who came was the first nurse Kai had when he came home from the NICU at Primary Children's Hospital.  She hadn't seen him since that first night and she was completely amazed by how big Kai has become and how much he moves now.  Since I am with Kai every day, I don't see the changes as much as others, and I often forget how small and hypotonic he was when we first brought him home.
Then today I ran across this video from when Kai was in the NICU.  I had meant to post it way back then, but kept forgetting.  It was about a week before we were able to bring him home, while we were doing the trach mask trials.

I remember the little bit of movement that he was doing while I held him was so encouraging for us, because he would normally lie so completely still while on the ventilator.  With the trach mask he had more freedom to move and he took advantage of it.  I still remember how he showed his stubborn personality even then, by continually kicking out his foot from the swaddle they had him in to keep him warm.  He has come a long way in the few months he has been home.  We brought him home at less than five pounds.  We are so grateful for this little boy in our lives.

Halloween Weekend

 
Halloween this year was a weekend of fun.  My mom made a princess costume for Zuri, which she absolutely loved.  She kept saying "oh so pretty!" to the dress and twirling around.  We didn't have the hat done for the trunk-or-treat on Saturday, but it was ready for trick-or-treating Monday.  Zuri loved the hat for a short time, but was done before we actually made it out the door Monday night.  I don't think she liked the strap that held the hat on her, although she has been wearing the hat most of the morning today. 

Saturday, we went to my mom's house for trunk-or-treating out at the local firestation.  They had a chili cook-off and had a bubble show for the kids.  They did a really neat bubble trick with propane, a kazoo, bubbles, and a lighter. 

Zuri had fun at the trunk-or-treat.  She really started getting into it by the end.  She was only afraid of the people who wore masks.


She ran around with McKenzie, who was a witch this year.


She also had fun with Dallas.


Sunday, we carved pumpkins and made caramel apples.  Zuri has been so funny this Halloween; finally understanding the concept of "scary," everything scares her.  Even pumpkins.  We have to tell her that the pumpkins are "nice" and it is a "nice witch," or a "nice ghost."  She did better when we were carving the pumpkin though, and didn't think it was scary at all. 





On Halloween, Zuri actually went trick-or-treating twice.  I took her to the mall at six.  By the time we got back, J was home from work, so he took her out trick-or-treating around our complex.  We did not receive any trick-or-treaters!  Our neighbors hadn't had many either, which really surprises me.  I guess it is just in the areas with houses that trick-or-treaters are more likely to be.

Zuri really got into the spirit of trick-or-treating Monday.  She would run up and say "trick-or-treat!"  If someone allowed her to pick her candy, she would grab a huge handful.  So funny, especially since Zuri really doesn't like candy all that much.  She loves dum-dums, but other than that, she really doesn't eat candy.


Looking for her prince....

Lastly, we got some pictures of Zuri and Kai.  Even though we didn't take Kai out, we still got him all dressed up!

Love this look on his face....Mom, why are you taking my picture...again?

Just before we went out trick-or-treating!

I couldn't get a really good picture of the two of them together.  Kai was really hot in his costume and was fussy, so unfortunately he didn't stay in it very long.

It is fun to watch as Zuri grows and now is able to understand and enjoy holidays.  I am looking forward to Thanksgiving and Christmas.  There is something about seeing Holidays through the eyes of your children that just makes something fresh and revitalized.

In other news, we just received word today that we were approved for another term of nursing (a term is 60-day increments)!  We will have nursing until December 25th, when we have to reapply again.   We are so relieved!  I can't tell you how grateful I am when the nurse gets here and I can get some sleep!  Especially since J doesn't come home two days of the week.  Thank you all for your support and prayers!

Happy Halloween--hope yours was fun and candy-filled!

A Wonderful Weekend

One of the great things about living in Utah is that pretty much wherever you live, drive ten minutes and you are in the mountains.  Autumn is my favorite time of the year--when the weather is still nice but a little cooler, and the leaves change color.  I love Halloween and Thanksgiving.  I love corn mazes, pumpkin carving, apple cider, apple crisps, canning peaches, corn on the cob, and all the fall festivities.

Autumn in Utah is beautiful.  The canyons are awash in colors of green, red and gold, and Friday, we were able to get out and enjoy it!

Friday was a busy day for us.  We had to get a blood gast done for Kai to find out his CO2 levels.  He is at 44!  Yay--no ventilator for now!  I was so nervous for the blood gast because if it had come out way high again then we would have to put him back on the ventilator.  Although 44 is still high (normal is 29-40) his pH levels are in the normal range, so we can keep him off the ventilator for now!  Happy news!  He is also growing-- now up to 10 lbs 13 oz--he is getting to be a big boy!


After his blood gast, the OT (occupational therapist) came over.  She said that although Kai still hasn't had the swallow test (and that will be done only when he can better tolerate oral stimulation by us), she thinks that he can start to have very minute amounts of baby food!  We are going to start at her next visit this week!  I am so excited!  She was very encouraged to see how he was chewing on his fingers, so although he didn't tolerate when she was trying to get the pacifier in his mouth, she saw that he can tolerate things in his mouth on his terms.

Once the OT left, we had our first outing as a family since Kai  was born (to something other than the hospital).  We didn't want to do anything too taxing with Kai, and I have been dying to get up in the canyons to see the leaves changing, so we took a trip up Provo Canyon to Cascade Springs.  Kai did fairly well; he slept the majority of the time, and was only awake at the beginning when we took him out of the car.  The trail is paved, and is a very easy hike around the springs. It was so nice just to get out in the fresh air!  The day was beautiful--sunny, and not too warm or cold.  Unfortunately, Shin was unable to come due to work, but Heather came with us, which worked out really well.  J and I switched off with Kai, so we were both able to enjoy, and Heather kept Zuri occupied.

Zuri had so much fun--she kept looking for fish in the water.  I never saw any fish, but J said that he saw some.  I have never been to Cascade Springs so late in the year before, and I was pleasantly surprised at how much water was still there.

On our way home we went through Heber and stopped by Dairy Keen for some shakes.  Yummy.  It was a wonderful day, and it was so nice to get out.

Here are a few pictures from the trip!


Zuri being cute in the car on the way up.  I was trying to get a picture with the hat and her blue eyes, but she kept blinking or squinting or the picture would come out fuzzy.  This one turned out a lot better than I thought, even though you can't really see her eyes.

Zuri was being funny and not looking at the camera.  Such an odd look on her face, but here we all are together!

Finally got a smile!

J with Kai; he had been fussing and J calmed him down.  Once we got him back into his stroller he slept pretty much the rest of the trip!

Zuri and Heather looking for fish.

J actually got a shot with both of them looking at the camera and smiling, but I prefer natural pictures.  I thought this was a great picture of Heather and Zuri together.

Zuri helping J push the Kai in the stroller.  She loves to help with Kai.

Kai sleeping by the waterfall.  So serene.



I included this picture more for the irony of it than anything.  If you look behind the tree on the left, you can see a picnic basket, and on the right, a person's back.  Yep, that person was blatantly ignoring the sign.





On Saturday, I had a girl's day out with my mother-in-law, and sisters-in-law.  It was Amanda's birthday, so we spent the day at her house doing crafts.  We made these cute holiday decorations.  Everything was done by us.  Suzanne and Maria had cut the wood and sanded it before we got there.  We all painted and put the lettering and paper on together.  It was a lot of fun.  The wood was scrap wood from Maria and Nolan's house (they are remodeling).
  This picture is of Maria's Crafts.


Sunday, we watched 17 Miracles.  If you haven't seen it, I suggest you do--it is amazing, and a tear-jerker.  Afterwards we played Farkle, a dice game that Heather brought over.  We have decided to have Sunday night as family game night, and our Family Home Evening, since J stays at his Aunt and Uncle's house in Bountiful on Monday nights (he runs a group session late and to save on gas and not be home at midnight, he just stays up there). 


The weekend was just a wonderful weekend.  A much needed break from all the stress that we have had lately.  Our first outing with Kai was a success, and I am looking forward to many more in the future!