15 Minutes

Days like today are hard.  Days like today are tough for me not to feel discouraged.  Another week has flown by and it feels as though there has been no progress.  Kai had his assessment for his hearing/language yesterday, and his overall development today.  I wanted to cry.  No, I would answer to most questions, he doesn't do that.  When asked what our goals are for the next six months, my immediate response was that I want to see him smile.  A real smile--at me.  I want him to be able to hold his head up.  I want him to be able to sit up without having padding all around him to keep his head in place.  Even rolling-- if he would roll from his back to his side, that would be something.  We had been so encouraged because he would roll spontaneously a few months ago.  Now he doesn't roll at all.  In fact, he hasn't done anything new in months.

How do you have expectations for your child without having expectations?  How can I be so selfish as to want him to do these things?  Do I want it for me or for him?  Shouldn't I be content with where he is now?  On the other hand, wouldn't it be unfair to him not to strive for the next step, even if it seems out of reach right now?  How can we know his potential without pushing him?  How do I not get discouraged when it seems as though there is no progress? 

I don't always feel this way, but Assessment Day seems to drag it out of me because I see just how far the gap is widening in Kai's delays.  It is on days like today that I must remember days like yesterday.

Yesterday, I woke up with a sore throat and extremely tired.  Oh crap, was my first thought.  I have two appointments and the second puts us right in the middle of Zuri's nap time, which leaves Zuri without a nap; never a good thing.  Then Zuri woke up ten minutes after the nurse left, and she woke up whining and not in a good mood.  Double crap.  I said a silent prayer, asking for help with my patience, and to give me strength for the day.  Not even two minutes later, Kai uncharacteristically started fussing and wouldn't calm down.  This isn't what I meant when I asked for help today! 

Since nothing else worked, I picked Kai up and held him.  As soon as I sat down he stilled.  As soon as I sat down Zuri stopped throwing her tantrum and came over to us.  She crawled into the chair and patted Kai's leg.  "It's okay, baby Kai," she said softly, "it's okay."  My heart melted.  Nothing else mattered at that moment.  We snuggled and rocked for fifteen minutes without distraction--no TV, radio, alarms, or thought about what needed to be done next.  For fifteen minutes life was almost perfect as I held my two beautiful children in my arms.

My prayer had been answered.  Those fifteen minutes gave me strength, a renewed vigor for the day ahead.  They serve as a remembrance for a day like today when I am tired and struggling and discouraged.  So, now I am going to put the computer away and cuddle with my son.  I am going to hold him tight and forget about all the things that he doesn't do.  I am going to enjoy him right now, at this moment, for him and what he can do.  He will bury his head into my chest and either fall asleep or suck on his fingers and blow bubbles.  Either way, I know he is saying, I love you, Mommy. 

Special Times

We have had a busy week, but it has been a very good week.  Kai had two eye appointments and the consensus so far is that his eye is slowly getting better.  We are still putting in the antibiotic eye drops every two hours and we can see a tiny bit more of his iris.  Additionally, he is now reacting to light in that eye, which is a good indicator that there is still some sight available in the eye. 

The OT came by for the first time since Kai has been out of the hospital, and she did some new exercises with Kai.  He can touch his toes (I didn't know he was that flexible)!  He really seemed to enjoy it as well.


As you can imagine, having the ventilator makes life a little more complicated, especially in the transportation area.  We are looking into a bigger stroller to carry all of Kai's stuff when we leave the house.  Even giving him a bath has become more complicated, because we have to transport Kai, plus the oxygen and the ventilator with all the connecting tubes.  My solution is to implement the stroller in our excursions from the crib area.  Thus far, when we have had Kai in the stroller, it has been solely in his infant car seat, which attaches to the stroller.  For transportation around the house, I have been putting him in the stroller seat, and to our delight, he loves it (and fits quite nicely)!   I attach the ventilator on top and put the oxygen tank in the basket underneath.  Voila!  We have a transportable baby! 


On Monday, my mom, my sisters Breanna and McKenzie, and my brother Dallas came to visit.  It was a fun visit and my mom got to spend some time with Kai.  The two of them have a special bond.

McKenzie and Zuri kept checking up on Kai.  When Zuri was certain he was okay, she went off playing again, but one time McKenzie stood by the crib just watching him.  I asked if she wanted to hold him and she said she did.  When it was time for them to leave she didn't want to put him down.  It was so sweet.  


During their visit, Kai did the funniest thing--he found his nose!  He kept sticking his finger in his nose, although he hasn't done it since.  We all had a good laugh and I was able to snap this hilarious picture!



Wednesday, my grandparents came in from Sacramento and spent a couple days with us.  They hadn't seen Kai since the end of June (when he was still only 4 pounds) and were amazed at how big he has gotten (he is now almost 17 pounds).
While Grandma was holding Kai, Grandpa kept Zuri occupied by reading to her.  Just before dinner she started to get really whiny and not feeling well--I attributed it to a missed nap that day, although she did have an elevated temperature and kept complaining about her head hurting.  Grandpa rubbed it for her and she fell fast asleep.   



After dinner, Grandpa spent a couple hours holding Kai.  Grandma even tried to steal Kai away but Grandpa wanted to hold him longer.  Priceless!


Thursday, Grandma started to not feel very well, so she didn't spend much time with Kai (just to be on the safe side).  Kai, for his part, slept most of the day, which gave Grandpa and I some time together (while Zuri napped).  It has been a long time since Grandpa and I have had the chance to spend some quality one-on-one time together and it was really nice.  We spent a good three nearly uninterrupted hours just talking, and had a chance to talk more Friday night as well.  I miss the long conversations that we used to have like that when I was younger.  I remember I would go into his computer room, usually early in the mornings before grandma got up, and I would watch and talk with him as he worked on the computer.  Those were special times with just the two of us.

We really enjoyed the time that we had with my grandparents.  They are up in Logan now visiting some family and will be returning to California in the next day or so.  We look forward to seeing them again in a few months!

8 Months

The other day I was playing with Kai and I walked away from his crib to get his food ready.  He had settled into calmly sucking his fingers and blowing bubbles.  As I approached his crib again, he looked up and me and started waving his arms and legs as though he was excited to see me.  It both melted and broke my heart.  Melted, because it was such a normal baby thing and for the first time he showed a real reaction to my presence other than watching me and blowing bubbles.  It broke my heart for the same reason, especially since I haven't had that reaction since. 

Much has happened in the last month.  Friday marked his eighth month birthday.  We spent the morning at the ophthalmologists office, trying to save his eye.  We saw a different doctor (the doctor that has been following Kai's eye thus far is moving to Iowa in a month, so he and the new doctor will both be following Kai until that time), and she was not overly optimistic about being able to do much for Kai's eye.  In fact, her exact words were "I am not optimistic about Kai ever being able to see well from this eye."  She talked a lot about making sure his right eye stays infection free and healthy, and also about tissue grafts once the infection has cleared.  The problem with tissue grafts in infants and young children is that the grafts are often rejected by their body.

We took the news hard.  Somehow, we had been (and to some degree, still do) holding on to hope that the infection wasn't as bad as it originally looked.  Considering that it hasn't changed much since Tuesday, our hope is fading fast.  We are trying to stay positive.

After the doctor appointment, we took Kai to get his hair cut.  While he didn't enjoy the process at all, I am loving the new look!




When we got home we gave Kai a bath.  Zuri had run into her room to get something and when she came out she noticed Kai was not in his crib.  She went looking for Kai and kept running back to his crib to check if he was there yet.  She had to make sure he was all right before she would start playing again.  She is very protective of Kai--even his stuff.  If something is Kai's, she will make sure that it stays with him or that it gets put back where it should go.  Such a sweet girl; she loves her little brother.


Maria came to visit Friday afternoon and we got to spend some good time with her.  

Saturday, J stayed home with the kids and I went to his sister, Alisia's bridal shower.  When I got home he had done the dishes, swept and mopped the floors, vacuumed, and cleaned Zuri's room.  It was so nice to come home to a clean place!  He is so amazing.  I was talking with the nurse last night and we had somehow gotten onto the subject of dads.  She said that out of all the families that she has worked with, J is the most involved father.  She said it is so awesome to see the way we work together.

This coming week is filled with appointments.  Monday he goes to his pediatrician for his next RSV shot, and Tuesday he has his next eye appointment.  We also have OT on Wednesday and Hearing Help on Thursday.  My grandparents are coming in from Sacramento on the 19th and will be here for the weekend.  We missed seeing them in November and we are looking forward to spending some time with them.

J's aunt gave us a book called One Tattered Angel, by Blaine M. Yorgason.  It is the true story about a girl named Charity who was born without a brain.  Even though the book takes place over twenty years ago, and I am not even half way through, I have seen many parallels between Charity and Kai.  They both survived past birth despite the odds; the prognosis is an early death--most likely from pnuemonia; they both had hydrocephalus.  They even share a common doctor (imagine my shock when I saw that!).

Charity's story comes from a family which had been preparing itself for years for her arrival, and they adopted her knowing her condition.  In a sense the difficulties we had with Zuri helped to prepare us for Kai, and in another sense we were completely blind-sighted.  Knowing what I know about the difficulties with a special needs child, I don't know that I would ever willingly adopt one.  It definitely takes special people to do so.

As with almost everything, the rewards of raising a special needs child are just as great (if not greater) as the hardships.  There is a love and a sweetness that comes from such a special spirit, and you really feel as though a touch of heaven has blessed your home.  You also become part of a community.  Parents with special needs children reach out to each other and help each other in ways I would never have imagined.  Maybe because of the selflessness that it takes to raise these little ones, but there is a kindness and a feeling of acceptance and love that is just not found elsewhere.

Corneal Ulcer

  Love this picture.  Kai was watching Zuri as she played with his foot.  So cute.

Conjunctivitis--that is what they said at the hospital on Friday when Kai was released.  Corneal ulcer is what the ophthalmologist said on Monday.  Good thing we didn't wait until Tuesday to get it checked out.  A single day could be the difference between minimal scarring and losing the eye because of how fast eye infections develop.  Over the weekend we were becoming increasingly worried about Kai's eye.  The white mucous film would not go away and it was covering his entire pupil and iris.  Sunday night the nurse did some research and found that it was most likely an ulcer, so first thing Monday morning we called and they originally told us to go to the emergency room.  It was that serious.  They were able to get us into Primary Children's Riverton clinic first thing, so we didn't have to make the drive all the way up to Salt Lake (and to the ER), which was a blessing.

The Dr took one look at Kai's eye and started to paint a pretty grim picture.  He said at worst Kai would lose the eye; at best he would have scarring and bent vision.  He said that there is the real possibility of having to have multiple surgeries and tissue grafts, but children so young usually reject the graft anyway so it may not do much good.  He did an ultrasound of Kai's eye and found that the back of the eye looked fine, no infection or leaking that he could see.  He was encouraged by that fact and gave us some drops to put in Kai's eye every hour and we set an appointment to see him the next day.

Tuesday was quite the busy day for us.  We had two appointments at Primary Childrens already, spaced several hours apart.  Luckily, the ophthalmologist was understanding and has a clinic in Orem.  He said to just come after our appointments and Kai would be the last patient he sees that day.   The two appointments we had were with neurosurgery for Kai's head and spine. 

Dr. S looked at Kai's head and was a little concerned that his fontanelles have closed so early, and also that his hydrocephalus hasn't been followed by anyone since birth.  He wanted to consult with Dr. W after he saw Kai later that day to see if Dr. W thought a CT scan would be warranted.  The doctors work in the same department, but for some reason we couldn't get just one doctor to look at Kai--or two doctors for the same appointment.  I had to fight just to get the appointments on the same day.  Dr. S also talked about surgery on Kai's face to bring his mid-face out more.  He said that that would be more when he was six or seven though.  As for his head shape, very little was mentioned other than wanting that CT scan done.

After our first appointment we went down to the cafeteria for lunch.  --It is pretty sad that we arrived for the appointment by ten, and it was twelve-thirty when we got out; especially considering we saw the doctor for less than ten minutes.  We ate and changed out Kai's oxygen tank and decided to head back to the clinic to see if we register early for the second appointment, if we might be able to get in sooner than our two o'clock designation.  Right when we were about to register/sign in, Kai's ventilator started alarming that it had low power.  We had a car charger but didn't bring the power cord for inside.  We asked them if we could borrow a cord from the hospitals units (since we knew they have the same ventilator as we do).  They wouldn't let us (they gave some lame excuse that didn't really make sense), but they did get Dr. W from another appointment and he saw us right away.  The appointment was rushed but the gist was that Dr. W wanted to do an MRI on Kai's spine to check things out.  He seemed more concerned than Dr. S about Jeremy, and would have scheduled the MRI and CT right away but because of the low battery on the ventilator, we set the date for early February (next available opening).  He also said that Kai seems to have some hyper-reflexivity, but thought it was due more to brain function.  He said that Kai's lower spine doesn't seem to be giving him any problems, so that is a plus.

We drove back to Orem for the next appointment with Dr. L, the ophthalmologist.  He was surprised (both good and bad) that Kai's eye had changed so much in just 24 hours.  Kai's eye had become more red and the mucous more of a yellow color instead of white.  He said the change could be a good thing because it means the eye is trying to heal itself.  Also visible was a little bit of the blue iris around the edge of the mucous film.  He tested the pressure of the eye and was a little concerned that it was slightly soft (an indication of leaking).  He thoroughly checked the eye and found no leak, which is reassuring.  He also checked Kai's right eye (his good eye) and pronounced that the right eye is just fine and healthy.  He debated whether to take Kai into surgery and try to remove the mucous film, but wanted to wait a few more days to see what the eye would do on its own.  Our next appointment is on Friday.  Until then we are continuing the drops every hour and praying for the best.

Poor Kai just can't seem to get a break!  We finally got his bum healed (the butt cream from Germany worked better than the stuff they used at the hospital), and now we have his eye.  Hopefully we took him in early enough that his eye can be saved.  Kai's eyes were one of the few things about him that we haven't been concerned about because they have been nice and healthy.  We will know more on Friday.

Coming Home

When I wrote the post Thursday, we were under the assumption that Kai would be in the hospital for at least three more days, if not longer.  ENT finally came and placed the new trach about four-thirty and then at six he was moved upstairs to the L-Pod.  Our plan had been to get Zuri Friday morning, I would spend the day with her while J spent the day at with Kai.  Then we would have Zuri spend the night with my mom while we did our 24 hour room in with Kai.  Sunday would be spent mostly at home with Zuri (and going to church).  Monday and Tuesday would be spent mostly at the hospital, and Zuri would spend that time with my mom.  We were hoping for Kai to come home by Tuesday at least.

It didn't happen that way.  Friday morning, as J was on his way to pick up Zuri, he called the hospital to see how Kai was doing.  They said that he was doing great and that he could go home by noon.  When J mentioned the 24 hour room-in, they said they thought we did that in the PICU.  J said no, and they said if we really wanted to do it, we could, but they feel comfortable with us going home today.  Of course we didn't argue with that!  So, J got Zuri, and we all got ready to bring Kai home. 

When we walked into Kai's room, the first thing we noticed was that his left eye was filled with pus and extremely swollen.  His eye had been fine when we left for the night.  Then we saw crusties around his g-tube site and his hair was all matted with goobers and sweat.  It was so gross.  In fact, unflappable Zuri (when it comes to stuff with Kai), took one look at Kai and got really scared.  She wouldn't go near him or look at him for the longest time, and when she did, it was only because we were able to show her that Kai isn't "scary."

The first thing we did when we got Kai home?  You guessed it, straight into the bath he went.  He loved it.  It was a lot harder and more awkward with the ventilator, and it definitely takes two people, but he was dirty on such a level that a sponge bath just would not cut it.  Trach cares are also much more difficult, requiring two people.  The custom trach is made out of a very flexible silicone, which makes threading the ties very awkward, and with the extra weight of the vent (not to mention the extra length of the trach and the long flexible neck) holding it in place while doing other stuff is very difficult.  With the normal trach, we had gotten to the point where it was actually easier to do cares by ourselves.  Hopefully we can get to that point with the custom trach.

We have our first "outing" with Kai on Tuesday, where we have appointments all day long.  One of the appointments is for his eye, which is slightly less swollen, but still pussy and red.  We have been doing what we can to help it, but I am really worried.  There is a really thick pus that is right over his pupil and iris that occludes his vision.  The nurses have no idea what happened to his eye.  Hopefully we will get some answers on Tuesday.  

The ventilator is heavy!  It weighs a good thirty pounds, if not more.  We have to figure out how to transport Kai now--especially as J will be working (he is taking Tuesday off to help with Kai and all the appointments) and I will be doing it all on my own.  There isn't enough room in the stroller to set the vent (if we hang it from the side or hand rail it will tip over) especially with all the other stuff we have to take as well.  The nice thing about the ventilator is that it produces a much more pleasant noise than the converter did (which we don't need anymore).  The closest way to describe it is an ultrasound machine--minus the heartbeat sound.  It could almost be an ocean sound as well.  The alarm on it is extremely annoying, but meant to be so; even on the quietest settings, the alarm can be heard at the back of our condo with the doors closed.  Another nice thing about having the ventilator is the extra care that Kai receives.  He is placed in a higher bracket, which entitles him to better care.  I know how awful that sounds, but the L-Pod is a perfect example.  With just a trach Kai would never have gone up there (trust me, it is a NICE place to be).  We are now guaranteed home night nursing and even given "respite" hours, where we can take a vacation and have the nurses watch Kai while we are gone.  The care goes all the way to our home health care supplies.  Instead of having to call up and order supplies each month, they have given us a sheet with the inventory of all the supplies and they will call us.  We now have an RT (respiratory therapist) on call 24/7 and he will come to our home once a month to check not only on Kai, but also on the ventilator and change out the filters (ventilator rentals are $2,000 a month!).  The hard thing about the ventilator, other than all the extra tubing and limited range of motion, is that Kai, whose sounds were virtually nonexistent before, can't be heard.  I can no longer hear when he coughs or when he needs suctioning.  Our "within eye sight" is even more true now in a big way, and in a smaller way it gives us a bit more freedom because now we have two alarms that blare at us if something is wrong: the ventilator and his pulse-oxygen monitor.  

Kai, for his part, seems much more content since coming home.  He has mostly just been sleeping, but during his awake periods he has been blowing bubbles and sucking on his fingers.  He is also not going into his apnea/desat periods while sleeping anymore, so he is getting some really good rest.  His eye doesn't seem to be bothering him too much, except he keeps turning his head more so he can see better.  His bum is looking so much better!  We have been using the cream from Germany and it has been wonderful.  I can't remember if I mentioned it before, so if I have, bear with me, but we had the GI (gastrointestinal) doctor look at Kai.  Their best thought was that he might have a carbohydrate absorption problem, and he might not be breaking down the sugars in the specialized formulas very well.  The recommendation is for Kai to go on "normal" formula and he how he does.  They took some of his stool to test.  They ruled out harmful bacteria in his gut, but didn't have enough of the sample to tell about the carbohydrate issue.  We had already switched formula's at the hospital when they told us they needed more, which voided the whole process because they needed the stool from the previous formula.  They also have been giving him the bacteria from yogurt to help normalize him from the course of antibiotics.  Yesterday was the first day we have seen some improvement in his stool (thicker and not so diarrhea-ish).  

Zuri is also happy to be home.  After greeting me on Friday, the first thing she did was to go to Kai's crib.  She kept asking where he was and became excited to go pick him up from the hospital.  It was the custest thing to see.  She doesn't bother his equipment at all (except his oxygen tank, she loves to play with the chain on it).  Other than her initial curiosity with a new machine, she hasn't paid any attention to the ventilator.

It is great to be home.  The ventilator makes things a little more complicated, but it is so good to see Kai not struggling to breathe and turning blue all the time.  We are still in adjustment mode, but it is so nice to be getting back to "normal."

  Sleeping.  In the picture it looks as though he has red-eye, but that is actually his swollen eye.
  Awake.  A better view of his eye as well.  Amazingly enough, it has improved quite a bit.  He can at least open his eye now, although the film of pus won't come off.

We would like to thank you all for your comments and support.  It means more than we can say to have so many people rally around us during this trial in our lives.  We feel the love and support and it is part of what has enabled us to get through these rough times.  We have been blessed to have family and friends such as you.  Thank you again from the bottom of our hearts.

The Days Go By

2012 is officially here.  We are still in a waiting pattern with Kai.  He was taken into the OR yesterday morning and they did another bronch, with Kai completely sedated.  Nothing more was really found except a small mucous cyst (normal) near the bottom of his trach tube.  They cauterized it and placed the longer temporary trach while we wait for the custom trach to come in, which arrived today, we are just waiting for ENT to come put it in.  From that point, Kai will be transferred back to the 3rd floor (aka the Childrens Surgical Unit--CSU, the L-Pod, and the Trach-Vent area).  He had been transferred there from the PICU two days ago, but since he has the temporary flexible trach in, he had to go back to the PICU until the custom trach arrives.  The L-Pod is a lower level of care--the next step before Kai gets to come home.

Yesterday, after being in the OR, he was surprisingly happy all day long, and awake.  He slept a good portion of the night and has been awake and on the fussy side today.  Even with the longer trach his CO2 levels are still high--from about 58-72 range.  Obviously, the more agitated he becomes, the higher his rates go.  The purpose behind the longer trach is not only to help with the trachialmalasia (by keeping the trach part of his airway open), but also to help with his CO2 levels.  The doctors were hoping that having the longer tube, the vent would push the air into his lungs (and out) more efficiently (and hopefully to avoid more collapse) so he would blow off more of the carbon dioxide.  So far, we have only seen a slight improvement, but we will take it!
The gray box next to his mouth is what measures his CO2 levels.  He gets that machine instead of constant needle pokes--an improvement in my view.


Kai has had some wonderful nurses the last couple of days.  What a difference a great nurse can make!  His nurse yesterday actually had two trach babies to care for, and she did an amazing job caring for both equally.  She was also attentive to me, making sure that I was comfortable and not in need of anything.  It was very apparent that she enjoyed her job, and loved taking care of the babies.  The nurse today only has Kai, and although she spends most of her time out of the room, she is constantly checking in, peeking over, and is right over if an alarm goes off, even if it alarms for just a moment.

At the hospital they have what they call "WOW" cards, where you can fill out a form about a staff member who has great or made your day in some way.  I think it is a great idea and I am going to fill out a couple WOW cards.  I think positive feedback is important. 

Speaking of amazing nurses.  One of Kai's night nurses, HK has been by to see Kai once already, and she is going to come again today.  I cannot say enough good things about her.  She has gone above and beyond.  On her own time she has researched things for us and even made a little contraption that would help with moving Kai around the house.  For his bum she ordered special cream from Germany because she researched that it was the best stuff.  She and I will spend hours talking--in fact, I stayed up talking with her until four-thirty in the morning one time!  When it is her shift, J will often go to bed without me because he knows that I will be up for quite some time with her.  She has helped me stay sane though this whole process, because she has been with us from the beginning.  She hasn't been afraid to speak up if she has a concern and has given us ideas on how we can improve things with Kai.  As I said, she is amazing.

The most common question that I am asked (other than when can we bring Kai home) is if I am doing okay.  Surprisingly, the answer is yes.  I am okay.  We are okay.  Yes, having Kai in the hospital is not ideal; yes, we miss Zuri, and she is missing us fiercely; yes, we are completely worn out and ready to get back to our lives and back to our home; but honestly, this has been really good.  We are getting things solved, and now we have a much greater knowledge of what is going on with Kai.  We are at peace with the situation.  It totally stinks, but it is for the best.  It needed to happen.