Emotional Fire

Beautiful Lake Tahoe.  This picture was taken across the street from my dad's house.

As mentioned in the previous post, the weekend was full of emotions.  I was originally going to do one long post but felt two would be better.  The drive from our place to Lake Tahoe is almost ten hours.  I had lots of time to think during the drive since I went by myself.  J stayed home with Zuri and Kai during the three days I was gone.  J was able to rearrange some appointments and clients at work so I could leave Thursday.  We had had a full weekend planned but we were able to reschedule most appointments so that I could go.

One appointment we did keep was the one regarding the respite hours.  J put me on speakerphone so that I could participate.  Good thing, because when she first got here, she was set on giving us 30 extra respite hours, but after finding out about our situation she gave us 50 respite hours a month (which I am fairly certain is the maximum allowed)!  The clincher was when I told her that J doesn't come home twice a week and the nights he does come home it is around nine.  She also told us that we should be receiving ten hours a night instead of the eight we currently have with Kai being newly on a ventilator.  We have already made an appointment with our nursing program to get those additional two hours a night (which are separate from the respite hours).

When we officially got the approval for the respite hours, I literally cried.  I feel like I am getting some semblance of a life back.  I will be able to go grocery shopping.  Date night with J.  We can put Zuri in a dance class.  I will have someone to come with me to appointments so I don't have to do it alone--no more frantically pulling over to the side of the freeway to fix whatever is wrong with Kai's ventilator.  We can go to family functions together....

I cannot even express how liberating it feels knowing that we have the respite hours.  J has been busy planning our weekend getaway together.  We have not seen each other for more than a couple waking hours at a time in almost three weeks. 

That was the good news, which we received just a couple hours before the funeral.  Then, just before the funeral was about to start, I got a phone call with some bad news.  The geneticist called me and wondered if I have heard from Dr. W (the neurosurgeon) on the results of Kai's MRI/CT scan.  I told her no, I haven't heard anything yet.  She said that I will hear from him soon, he said he was going to call, and I will have to get more information from him, but that they had gone over the results and there was abnormal findings on Kai's spine.  She said that the cervical spine is much narrower than it should be and also not as compressed as it should be.  She said that could effect everything from movement and joint pain to breathing.  They want to schedule another CT scan (at least he won't have to be put under anesthesia again) to look a little more thoroughly and be certain, but if things are as bad as they think, the course of action would be spinal surgery.  I tried to ask more questions, but she didn't know the answers--I need to talk with Dr. W for more information (she works under Dr. V who is our main geneticist). 

Receiving the news was heartbreaking.  How much more can our little guy go through?  When does the cost outweigh the benefit?  I don't have all the details, and the surgery may not even be necessary, but the fact that it was mentioned brings us back to the same argument: how much is too much?  Will it improve his quality of life?  Is it really necessary--will it make a difference, or will we be putting him through unnecessary pain?  Kai's syndrome is so rare and he falls on the more severe end--we are in uncharted territory here.  We just don't know so much.

The weekend wasn't all emotional, and ended on a pretty good note.  I was able to spend time with another one of my best friends, Jaimie, for a short time Saturday night.  She has been amazing over the last year.  Her love and support has helped me through some rough patches.  Sometimes it hasn't been much other than a text or a message that just lets me know that she is thinking of me or wants to know how I am doing.  Just a small gesture that really means so much.

I was also able to spend time with Dad and Emily, which was a lot of fun.  It has been a long time since the three of us have been able to spend time together like that.  Although I was ready to leave Tahoe and get back to J and the kids, it was also a little hard leaving.  It would have been really nice if J and Zuri would have been able to come out with me (there is no way it would have worked with Kai).  Luckily, our next trip will be in May for Shin and Heather's wedding, and we are planning on (hopefully) going out for the 4th of July this year.  With the respite hours, we will be able to resume our tradition!

Today also marks Kai's nine month birthday.  Hooray!

Cheryllyn

The weekend was filled with emotions.  On Wednesday I learned that my best friend, Chantal's mother passed away unexpectedly, and by Thursday afternoon I was on my way to my home town of Lake Tahoe, California to support and help any way I could.  Unfortunately, this was the second tragic loss the family had encountered in the last 11 months; Chantal's grandpa passed away last March due to an automobile accident.  

Chantal's mother (Cheryllyn) and I were not close, however, I do have some fond memories of her.  One that Chantal and I like to reminisce about is the first time I went over to Chantal's house in ninth grade.  Chantal's family had just moved to Tahoe and they were still in the process of unpacking.  Chantal and I had gotten into a water fight and we thought that we had been so clever in cleaning up all the evidence (and missing all the boxes) but when Cheryllyn came home she went into the bathroom and discovered a place we hadn't thought to check.  We heard her call out "who peed on the toilet seat!"  We couldn't stop laughing...um, that's not pee!

Cheryllyn also loved to be "one of the girls."  She loved to join in on slumber parties and always had a funny story to tell.  She relished telling the story about Chantal's first experience seeing a bear in Tahoe.  She would keep you entertained with her dramatic re-enactment of stories. 

Unfortunately, the last time I saw her was three years ago when she spent some time with us for the 4th of July.  Her passing has been especially hard because it was so unexpected and no one had a chance to say goodbye.  She was full of zest and life and will be missed.

Back Under

Life with us is never dull.  Today we spent at Primary Childrens, and poor Kai had to be put back under anesthesia for an MRI to check up on his hydrocephalus and a few other things.  He also had a CT scan done beforehand and I got to be in the room for that one!  I even got a picture (the people at the hospital must think I am crazy because I am constantly pulling out my camera).  Kai was a trooper during the CT scan.  He just looked around and was completely content.  


After the CT scan and the MRI (to which we didn't find out the results as of yet--hopefully soon), Kai had trach/vent clinic, which consists of us staying in a room while four or five specialists (ie pulonmonlolgy, respiratory, genetics, etc) come to see how Kai is doing.  I have to tell you, trach/vent clinic is the best thing ever.  Trach/vent clinic takes care of the need to see all the specialists in one visit instead of having to have all the separate appointments (and the struggle to get Kai out of the house).

As for today's trach/vent clinic, all went well.  They said that Kai seems to be doing great, and no changes to his vent settings (yet).  The put the CO2 monitor on him and his carbon dioxide levels were in the 40's and 50's.  SO much better than they were even when he was discharged from the hospital in January, but even still, they took a blood gast (poor guy, another poke) to verify.

Kai is now over 18 pounds!  He has done some amazing growth this last month.  Whether it is because of the vent (and not having to work so hard to breathe) or the change in formula, or both, he has gotten so much bigger!  He is now at 22% on the growth charts and 98% of where he should be--meaning he is right on track, which is fantastic!  The RT was so funny when she saw him because she was so excited about his baby fat rolls!

The pediatrician talked about *gasp* wheelchairs.  Okay, that has been a hard one to wrap my head around.  Our OT brought up the dreaded word a couple months ago and we completely dismissed it.  Kai is still too young to consider it, right?  After all, our stroller is (was) working just fine.  She was completely amazed that we have been able to make it work with a regular stroller thus far.  In fact, she said that we can get an "adjusted" stroller that has room for all his equipment, including his vent and oxygen.  YAY!  Then she started talking wheelchairs.  Here's the kicker: insurance will only pay for one adjusted stroller OR wheelchair every five years.  Ah stink.  So, we need to think long-term; what would be most beneficial for Kai.  Surprisingly, the answer may not be the dreaded wheelchair (hooray).  The doctor said that with Kai needing the head support and reclining position that he requires, an adjusted stroller would be less bulky and easier than a wheelchair with the same features.  Sweet.  I don't know why, but getting a wheelchair in essence makes it feel as though we are giving up on him being able to walk, and trust me, we aren't.  We have an appointment set up in March to check out all our options and choose the right fit for our family.

In other potentially good news: our number is up!  When Kai came home on the trach we were put on a waiting list for a program that would give us additional nursing (respite) hours.  When Kai was put on the ventilator, we were "bumped" up on the list, but were told it could still be a year or more before we could actually receive those additional hours.  On Monday, I spoke to the Coordinator of our nursing and asked more about how to get the additional respite hours and she gave me some information.  Kai had a follow-up eye appointment so I didn't have a chance to call the number she gave me, but it didn't matter because I got a call from them!  She wants to meet with us Friday to talk about a possible 30-40 more respite hours a month (starting later this month or in March)!  We are dancing in the clouds.  Date night!  Family events together...someone to help me when I go to appointments...being able to go grocery shopping...an extra hour of sleep...a weekend away...all now possibilities if we get the hours.

It is amazing how much something as simple as going to the grocery store is appreciated when you are unable to get out and do it.  Additionally, it isn't simply a matter of "when J gets home I can go" because he doesn't come home two nights a week and on the other two days that he works that he does come home, he doesn't get home until after eight.

We are praying that we get those additional hours!  Just the thought of having the additional nursing has raised our spirits so much.  We love our little guy to pieces, but we definitely need breaks to help recharge our batteries!
  I finally got a picture without his fingers in his mouth!  I had him sitting in his stroller and he was intently looking out the window as I folded laundry.  He was chomping on his fingers and I got some great shots of that as well, but he lowered his hands for a second and I was able to capture the moment!

Little Miss Zuri

I know the posts have been very Jeremy oriented the last few months so I wanted to write a quick post on how Little Miss Z is doing.  She is full of spunk and life.  She is a little bundle full of energy.  She also gave her first talk in Primary on Sunday!  She spoke on Noah and how he was blessed by following God's commandments.  She was fabulous!  No stage fright; she was very articulate and enunciated her words well.  She loved all the praise she received afterward.  She thrives with positive feedback.  She is very much in the 3 year old silly mode these days.  Everything is silly, and she loves to say "Mommy, look!  I made a silly face!"  She is my cute Little Miss.

Post-Op Craziness

   Before Surgery; I couldn't resist adding these two photos, even though they really don't have anything to do with the post.  I just think he is so stinking cute!



We have never had same-day surgery with Kai before, and they had us put him in cute little baby scrub/gowns!

 Surgery went well for Kai yesterday.  Dr. K said that they were able to examine both eyes thoroughly, and his right eye still looks great.  His left eye was actually better than they originally thought, still bad, but not in immediate danger of perforating.  There is 12 mm of tissue protecting the cornea, and Kai's ulcer is 9 mm deep.  Dr. K put an amniotic membrane over the left eye to protect it and then sewed it closed.  He didn't sew the eye completely from side to side, just in the middle.  There is a plastic piece that reminds me of the end of a sales tag to help keep his eye closed without pulling too much on the eyelid itself.  The eye will remain shut for about a month.

Kai handled the anesthetic well, tolerated food, and was only slightly grumpy afterward.  He was more sleepy than anything, but couldn't seem to get comfortable unless I had my hand on him.  The RT who took care of Kai during the surgery is a favorite of ours, and when we saw him, we knew Kai was in good hands.
        I love little baby hands!  This was taken when he finally settled down after the surgery.

The trouble didn't happen until we got home and tried to give Kai his first eye drop.   We were trying oh-so carefully to lift the corner of his eyelid up to get the drop in (as we had been instructed) and out pops the amniotic membrane.  You can see the picture  here  (I didn't include it in the post for those who are squeamish).  Disheartened doesn't even begin to describe how we felt.  It had been a long day and neither of us had slept well the previous night.  It was almost ten at night and had just gotten home.  The last thing we wanted was to have to turn around and drive back up to Primary Childrens (it is almost an hour drive one way).  We were just grateful that we hadn't put any of Kai's stuff away.

J got right on the phone to the on-call doctor and I started getting his vent circuit ready for travel (when Kai is in his crib--or the surrounding area--he is attached to a humidifier; when he is on the go, he wears a paper substitute called an HME to help with humidification).  The on-call doctor contacted Dr. K who said for us to come in the next day but we didn't need to go up that night.  As long as the stitches didn't come out we are good.  Whew.

Today we packed up, went back up to Salt Lake to the Moran Eye Center, which is located right next door to Primary Childrens, and saw Dr. K again.  We had saved the amniotic membrane to show the doctor.  He confirmed that it is indeed the membrane.  He looked at Kai's eye and said he is encouraged that the eye is already healing around the stitches.  He said since Kai isn't as close to perforating as they originally thought, he feels comfortable enough to leave the membrane off and not put Kai back into surgery.  Good news.  The amniotic membrane had been basically like neosporin for the eye.  It was there to help protect and promote healing, but not completely necessary for the healing to happen.  If Kai's eye had been a bit more worse then it would have been vital to get it back on.

Dr. K said that what must have happened is that because Kai's eyes protrude out so far, he had to pull the eyelid quite tight to get it closed all the way; the resulting pressure made it like a shaken soda, when the slightest opening came, the membrane shot out.  We had him show us how to insert the drops.  He pulled on the eyelid and opened it much more and further than we had (he also did it the same way we had).  Double whew.  It hadn't been due to incompetence on our part--it would have happened regardless.

On our way home Kai's heart rate skyrocketed and his oxygen saturation levels plummeted.  It was reminiscent to how he was before the ventilator.  Suctioning, increasing oxygen, checking cords and hoses to make sure nothing was kinked or popped off, none of it worked.  We are still unsure what caused this latest "blue" episode.  Even now, several hours later, his heart rate is still higher than normal.  We have been able to turn his oxygen down but it is still higher than normal. 


Today was J's sisters wedding.  We were able to get back home in time for J to make it.  Unfortunately, with Kai just having had surgery, we felt it was best that I stayed home with him.  I am sad to have missed it, but I told J to take lots of pictures for me! 

With having to take Kai back to the doctor today, J didn't think that he would be able to make it because the wedding was 2 1/2 hours south of Salt Lake.  We went to the appointment over an hour early in hopes that we could get in and out in sooner.  It worked!  We were also the first ones there (only on-call or emergency situations are looked at on the weekends).  We had been told to expect a long wait time because another family was coming in from Wyoming, but we didn't see them there at all.

Aren't they a cute couple?  We wish them lots of happiness!

Special Spotlight

Kai has been featured in a Special Needs spotlight! This Little Miggy Stayed Home features a special needs child every Friday.  It is a very inspirational blog and has been a source of comfort (and laughs) for me.  Miggy herself has a special needs child and has reached out to so many with her blog.  When Kai was first born, we felt very alone and isolated in our situation.  It has been so comforting to see other parents out there who have special needs children, and to learn of their story.  Even though our stories may all be different, they all ring with similar qualities.  I am continually amazed at the strength and optimism of the parents and the children themselves.  It helps to know we are not alone, and gives me hope for the future.

To see the spotlight, go here: This Little Miggy Stayed Home

Ophthalmology

   The area of concern is that clearish spot on the bottom part of the ulcer

Yesterday did not go as planned at all.  We went to Kai's eye appointment first thing and heard the news we were expecting.  "The ulcer is looking great...shrinking...just keep up with the drops and the lubricant..."  Then we heard some news that we weren't expecting: "I am concerned about the bump, though.  It could be his iris being pushed out of his eye."

What? Is that even possible?  But wait, he has had that little bump since the beginning of this whole fiasco--why is it so concerning now?  So, we were sent up to Salt Lake to see a cornea expert--right away.  I had to call up and cancel Kai's OT because we wouldn't make it home in time for the appointment.

Two doctors ended up looking at Kai's eye.  The first doctor had a hard time getting a good look at the eye because he was awake and having none of it.  The doctor confirmed that there is not a perforation at this time, but the layers of tissue protecting the cornea are extra thin on the bump.  He briefly mentioned the possibility of having Kai's eye sewn shut for a short time to help promote healing and retain moisture.  He then said he doesn't think that is the case with Kai because with his eye shut we wouldn't know if the eye does perforate (which it could even sewn shut).  He said that he wanted a second opinion, but most likely we would just increase the eye drops back to every hour and make sure we are keeping his eye lubricated.  The doctor said that we would be going up two to three times a week for follow-up appointments.

When the second doctor came in, Kai had fallen into a good sleep and allowed a better eye exam.  The second doctor said that the eye is so close to perforating that it could be within days if not hours.  He said that because Kai is unable to close the eye all the way due to the bump, even with lubrication, it is still a fine line to walk.  He said that the best course of action right now is to get Kai into surgery.  They are going to put a film of amniotic fluid on his eye (which will create a film barrier) and sew his eye closed.  It could be for a couple weeks or a couple months.  We are not sure at this point in time.

The surgery is scheduled for Friday afternoon.  They wanted it sooner, but because of Kai's medical needs, they have to do it at Primary Childrens, which works out better for us because J will be able to be there without having to take work off.  Right now we are trying to save the eye, and so  much information was thrown at me at once that I forgot to ask about the long-term effect this all has on his vision (or if he will even have vision in his left eye).

I was able to find out some useful information though.  One of the readers of this blog mentioned the possibility of herpes (caused by a cold sore or something).  Neither J or I get cold sores, and those who do haven't been around Kai recently, but it was a good lead to follow, so I asked about it.  The doctor said that although herpes can present similar issues as Kai's eye, it is not what is going on in this case.  He said that due to the early hardening of his skull, Kai's eye sockets fused, which meant that his eyes had nowhere to grow but out, which is why his eyes are so protuberant.  The doctor mentioned some reconstructive surgery when he is older.  Additionally, because of the protuberance, his eyelids don't always close all the way (which is why he will often sleep with his eyes open).  The dryness that results can literally melt the cornea.  Kai's natural defense are the tears that his eyes produce (if you have spent any time with him, you will see that his eyes tear frequently, even when he is content and happy).  He thinks what has happened is that for some reason, Kai's eye got dryer than normal and then some bacteria got in it and this is the result of the two.

That hypothesis is the best that I have heard.  It  makes more sense than some negligent staff at the hospital causing some trauma and not reporting it.  Even so, the state Kai was in when we walked into his room Friday morning was unacceptable.  He was dirty--gross.  Eye all swollen and pussy.  G-tube had crusties all around; his hair was matted and he just looked miserable.  We should have insisted he stay longer to have his eye addressed at the time, but he had been at the hospital for nearly three weeks.  We were appalled at the state he was in and more than ready for him to be home.  We took at face value that he had conjunctivitis and the medicine they gave us would work.

We can't play the what-if game, though.  It doesn't do any good.  Hopefully, even though it sounds awful and cruel, hopefully sewing Kai's eye shut for a time will promote the healing and moisture that his eye requires.  Hopefully doing so will keep his eye from perforating.  Hopefully the damage will be minimal.  Yesterday, receiving the news was hard.  I admit, I broke down and cried--but today, today I am feeling a lot better and more optimistic.  Something is being done.  Kai is being treated by specialists in the field, and I trust in their expertise.  This is for the best.