Throwback Thursday: Kai's Eye

People are always inquiring about Kai's eye.  I find myself booting up the computer time and time again to show them the pictures of his time in the hospital, and explaining what happened.  There are pictures I never posted, and I thought it might be good to just have a post with the before and after pictures.

Background:
We took Kai into the ER at Primary Children's Hospital just after Christmas in 2011 due to respiratory distress.  He had had high CO2 levels previously, and we knew that a ventilator was in the near future.  He also had a severe diaper rash (so bad that it was continuously bleeding) which we thought was a bad yeast infection.  Turns out that he was not correctly absorbing some of the carbohydrates in his specialized formula, and it created very acidic poop, giving him the diaper rash.  He would poop, get upset because it hurt, turn blue, try to breathe, fail because of his airway collapse, get frantic, poop again, and the process would start over.  Sometimes it would literally take over 45 minutes to change one continuous round of diapers (I timed it).

After he was put on the ventilator and his formula changed to a regular formula, he began to rapidly put on weight, which you will see throughout the pictures.  He didn't have to use the calories trying to breathe, and he was able to digest the formula.  His diaper rash disappeared within several days after the formula switch.


These photos were taken the day before he was released from the hospital on the ventilator in January 2012.  As you can see, his eye looks perfectly fine.




That night we went home, thinking he would be in the hospital for several more days.  Early in the morning we received the phone call that he could come home that day.  We changed our plans for Zuri and took her with us to pick him up and bring him home.  We were really excited, but when we went into his room, we were greeted with this sight:





The staff told us he had conjunctivitis and sent us home with some antibiotic eye drops.  Neither J or I have had pink eye, so we didn't know that that is not what it was.  We were so anxious to get home, that we didn't demand to have a doctor come in and look at his eye.  Hindsight is 20/20. 

The next day at home.  The swelling is slightly better. 

The night nurse did some research and told us we needed to get him in to a doctor right away, that it looks like it is a corneal ulcer.  So, we made an appointment with the on-call ophthalmologist and sure enough, it was a corneal ulcer.  Due to his bulgy eyes, they are drier than normal, and all it took was a little trauma to his eye to cause it.

We tried to find out what happened at Primary Children's that night, but it was not recorded, and even though we put in a complaint, nothing ever came from it.  Whatever happened that night, we don't know--no one will fess up.  It still makes me mad.  However, I try to give the benefit of the doubt, and it is possible that a nurses badge caught his eye as he/she was taking care of him.  I have seen it almost happen enough times to think it a plausible explanation. 

For the next few weeks, we visited the corneal specialist and the ophthalmologist every few days or so to keep an eye on it.  We continued with the antibiotic drops just to make sure there wasn't an infection.  

In fact, it seemed to be getting better, and we thought it was clearing up.  In actuality, it was getting worse.  The spot near the bottom of the ulcer, where it looks as though you can see the iris of his eye again is the trouble spot.  It looks as though you can see his iris because you can--his eye had thinned out to the point that the iris was about to come out of his eye.





So, in order to save his eye, we had it sewn closed for three weeks with an amniotic membrane.  It created a thick layer over his eye (complete with blood vessels, which is why his eye now appears red).  We are no longer in danger of losing his eye, but the result is that he can't see out of that eye.  When he is older he may be a candidate for a cornea transplant, but at his age the chance of rejection is too high to make the risk worth it.



 

This is a current picture!  :-)

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.