Progress

An amazing thing happened yesterday.  After Kai's bath I must have forgotten to plug his oxygen back into the ventilator; either that or the RT may have inadvertently disconnected the oxygen cord when he was checking the ventilator.  When we transport Kai around the house, we use the portable tanks, but when he is in his crib area, he is connected to the concentrator, which pulls room air and converts it to pure oxygen.  I had his pulse/oxygen monitor connected and running, and Kai was in the mid-nineties for his oxygen level, so I didn't know anything was amiss.

The respiratory therapist came over about two hours after his bath to inspect the ventilator and make sure all was working correctly.  He messes with a lot of things and has to move the ventilator bag all around to get to the filters, so it is quite possible that the oxygen tubing could have come out then.  The ventilator won't alarm for a disconnected oxygen tube.  It was during his visit that J noticed the oxygen cord wasn't connected to the ventilator, so he hooked it in.  We aren't sure whether the cord got knocked out during inspection or if I really did forget to plug it in.

After the respiratory therapist left we decided to try an experiment and turned off his oxygen altogether.  He went over an hour and a half before the nurse came (we had a date night) and we turned the oxygen back on.  He averaged 94 (he just has to be at or above 90), and the lowest he has dropped to was 88 when he coughed, but he bounced right back up.  It would be SO exciting if we could get him off the oxygen completely!  We will have to see how he does sleeping, but this is wonderful progress!  Before his ventilator, Kai was needing three liters of oxygen a minute, but lately he has been below half a liter.

On Thursday we were able to pick up Kai's adapted stroller.  I love it, but Kai is not so certain.  He lasts about five minutes at a time in it before he gets fussy.  Hopefully, as he gets used to it a little more that he will like it better.


The adapted stroller has room for all his equipment, and even comes with an attachable canopy!  It is a lot heavier than his previous stroller, but collapses fairly easily, and is even designed so that we can transport Kai in the car while he is still in the stroller (we would have to make our vehicle safe for doing that, however, so we will be keeping him in the car seat).

This picture was taken right after his bath, so he is wrapped up in a towel and happy, but it gives you an idea of how nicely everything fits!

Another exciting thing has been happening--we have been hearing cooing sounds from Kai!  Just before his surgery we started hearing Kai making noises.  When we first started hearing the noises we thought something was wrong, but then we realized that he has managed to figure out how to make noise over his trach!  We were told that there will be a point when he will be strong enough to do so, but I guess we had given up on that possibility since when he is screaming we still can't hear anything.  There are certain adaptations that we can put on his trach for him make noises, but I don't know if there is something like that for the ventilator.

 We were able to get a video of him cooing before his surgery.  Of course, when we pulled out the camera he didn't coo as much, but we did manage to get a little of it.  Since Kai's surgery, we haven't heard him make any of the noises, but we are hopeful that he will start doing them again as he starts to feel better!

Laminectomy

Kai had his laminectomy (spinal surgery) done on Monday.  Overall things went really well and they were able to release him from the hospital Tuesday afternoon.  There weren't any complications and he handled the anesthesia really well.  Monday afternoon he was in a lot of pain, so they gave him some extra pain medication to help, but other than that, he has been a champ through the whole thing.

He managed to pull out his IV though, so they had to put another one in.  It was a bit nerve-wracking in the beginning because I was the one who noticed first, and the only reason I did was because there was a pool of blood on his pillow right after he had been moving around.  My first thought was that the incision had opened, but when I moved his hand out of the way, I saw the blood leaking from his hand and not the wound.  The nurse took right over and quickly got the tape off and staunched the flow of blood.  Even still, my hands had blood all over them and we had to change out all of Kai's bedding because there was blood on it all.  Crazy how fast one can bleed!

He has been a little more sleepy than usual, but that is to be expected.  The doctor said that he can resume activities as tolerated.  I am really surprised, but Kai seems to be handling movement really well.  He gets upset when anything gets near the incision but that is to be expected.  He can't have a bath for three weeks, just sponge baths, and those aren't nearly as fun and cleansing as a real bath.

When awake, Kai has been vacillating between very content and very upset, often within a matter of minutes.  He gets more irritable just before he falls asleep, and as the pain medication starts to wear off.  Hopefully we will see a return to his happy disposition in the next few days as he recovers.

The results of Kai's latest blood gast are encouraging as well--his CO2 level came out as a 44.  Yay!  The ventilator is doing its job and helping him blow off some of the extra carbon dioxide (as well as keeping his airway open).  

We had a good experience in the CSU this time around.  The day nurse who took care of Kai both Monday and Tuesday was fantastic.  We didn't see too much of the night nurse because we slept at J's aunt and uncle's house in Bountiful, but she also seemed great.  I was a little wary after our last encounter in the CSU (which is where Kai's corneal ulcer happened), but everything went smoothly and all the staff were very attentive.  

The incision--yes, he has a really hairy back

Sleeping.  Such a sweet picture.  The purple coband is where the IV had been before he pulled it out.

Getting ready to leave--I think he was happy about the prospect of going home as well (or maybe just to get all the extra wires off).

On the ride home.  You can see the difference in his demeanor.  Above he was looking very sleepy and drugged, less than five minutes later he had perked up and was very happy (below).



At home, sleeping on daddy.

Easter 2012

Easter this year was celebrated at home.  The Easter bunny came while Zuri was at church, so she had a surprise waiting for her when she got home.  We had also hidden eggs all over the house for her to find, which was the first thing she saw when she came in.  She was more excited about finding the eggs and opening them, than she was about her Easter basket.  We also dyed eggs and Zuri had so much fun that she got upset when all the eggs were decorated.  She wanted to decorate more!


   
Kai got something from the Easter bunny too!

We had set up a time to Skype with Emily before her first day of school began (Japan is about 15 hours ahead of us), but we got the times mixed up and we ended up missing each other.  We will try again this Sunday.  You can follow her adventures in Japan here. 

J's parents came up and had Easter dinner with us, and the newlyweds, Alisia and Rendall, came over a bit later, so we had a nice full house.  Kai loved all the attention and was in a good mood as long as he was being held.  He has been going through a stage where he has been wanting to be held constantly.  He will fuss until you pick him up, then will be instantly happy.  It is both endearing and frustrating. 



 Since Kai's surgery was this week, J's parents took Zuri back home with them.  They will keep her until they get back from St. George this weekend.  Every year J's family participates in the Green Valley Tennis tournament in St. George, but because of Kai's surgery, we decided it was best if we didn't go this year.  J (who usually participates) hasn't had the opportunity to practice, so he wasn't going to play this year anyway.   It is so quiet here without Zuri.  I keep expecting to hear her little voice at any moment. :-)

Little Miracles

This morning I woke up to snow--just a light dusting and a light snow falling.  I am feeling really blessed today.  How wonderful is this life that we have!  There are so many great and beautiful things in this world.  We live in such an age where distance really doesn't matter, and despite being across continents, we can communicate with each other with the touch of a button.

I am so grateful for technology.  I think of all we have gone through with Kai.  Technology has allowed this special person to still be with us today.  Technology has allowed me to communicate with you, and tell you of his story--of our story.

I am grateful to all of you who read this blog and who send out your love and support.  There are more people who read this blog than I realize.  I am constantly amazed as I talk to people and they tell me that they have been keeping up with the blog.  Your love and support has been a source of strength for us.

Although the experience with Kai was never one we would have chosen, as we have come to accept it and watch our little boy grow, we have been struck by the tender mercies of God.  As Kai approaches his year mark in a little over a month, I have been reflecting much on the last year.  From the frantic first days of his life when we weren't even certain he would make it through the day, to the "blue" periods of November and December, to now--spinal surgery in less than a week, Kai has proven that he is a fighter and he is here for a reason.  He has blessed our lives with his sweetness and love.

The road has been hard and we are not perfect, but we are learning.  We have become stronger and better people for it.  We are grateful for the daily gifts of life's little miracles.

Be a Little Better

Saturday was a beautiful, sunny day.  Almost eighty degrees, and would have been perfect except for strong winds which would burst through at unexpected times.  J stayed home with Kai while Dad, Zuri, Shin, Heather and I all went up to temple square in Salt Lake to watch General Conference.


For lunch we decided to walk the couple blocks to Gandolfos.  We went through the new City Creek Mall which has replaced where Crossroads Plaza used to be.  I must say that I am impressed.  It is beautiful.  The little creek runs through the center of the enclosed portion of the mall.  Outside there are several fountains which have water shows every twenty minutes.  They have a ground fountain for children to run through (like the Gateway).



After the Saturday afternoon session, Heather and I drove back home while the guys attended Priesthood session.  We were able to have a nurse come in from five o'clock on, so Zuri and I went to the park to play for a bit.  She was SO excited. 


Sunday, we had a nurse all day so J was able to come with us to Conference.  The day was cold, with rain and a little bit of snow.  Such a contrast from the day before, although the rain gave us some beautiful flower shots.  We had lunch in the cafeteria of the Joseph Smith Memorial Building.


Zuri did really well throughout Conference until the last session.  She couldn't seem to sit still and kept going up and down the stairs.  She would get mad because because she would try to elicit a reaction from J and we kept telling her to be quiet.  J ended up taking her out to the visitors center where she could run around.


All the talks were great, and I could easily go through each one, but the two which really stand out the most were by Elder Rasband and President Uchtdorf.  Elder Rasband talked about his special needs grandson, and about service and how parents of special needs children go through so much.  Shin wrote in his notes that we (J and I) are superheroes.  I had to laugh at that one.  :-)  I loved his analogy of the drowning man.  He said (now remember, I am paraphrasing), "if you see someone drowning, do you walk up to them and ask if they need help, or would you just jump in?"  I love it.  Perhaps because I have appreciated so much when people have just jumped in to help us with Kai and Zuri.  Oftentimes J and I try to do so much on our own because we don't want to be a burden on our friends and family.

Obviously, you can see why that talk stuck out to me so much.  President Uchtdorf's talk about forgiveness and not judging was another one that really hit me.  He said that we really don't know what is in people's hearts.  How true.  Oh, I also have to mention Elder Ballard's talk about our own spiritual GPS, and about prioritizing our lives.  I found it interesting that people who are educated and prosperous are more likely to have traditional family values. 

I came out of Conference wanting to try a little harder, and be a little better.  What were your thoughts on Conference?  Any talk in particular that struck you?

Here are a few flower pictures taken from the weekend.  I love my new camera!

MRI and More

It was another busy week for us.  My good friend Tresa came over and spent some time with us on Tuesday evening.  She hadn't seen Kai since September and she was surprised at how big he has gotten.  It was nice to spend time with her, just relaxing and catching up--and when J got home she and I went out for some frozen yogurt. :-)


On Wednesday, Kai went in for his MRI and had some x-rays done on his spine.  Thursday, we headed back up to Primary Children's for the results.  J took a couple hours off work for the visit so that we could talk to the doctor and figure out the best course of action.  Kai's cervical spine is narrow and compressed, meaning that too much movement (and growth) is damaging his spinal column.  We talked briefly about a custom collar for Kai, which would extend from just below his armpits to his chin.  The biggest problem with that (other than the fact that Kai would be miserable) is Kai's short neck and the trach/vent.  The doctor said the only reason a collar would even be a possible consideration at this point is because Kai is not yet crawling or walking.  However, because of the aforementioned issues, the doctor pretty much vetoed the collar as a possibility, which leaves spinal surgery.

The surgery will be next week and they will be removing part of a bone to allow more room in his spinal column and for spinal cord growth.  When he is older, they will do a procedure to fuse the bones together.  Strangely, I feel very peaceful about the surgery.  The surgery would be inevitable anyway, and this way his movement (hopefully) won't be damaging his spinal cord.  Poor little guy.

In the cafeteria at Primary Children's--chilling while we ate lunch after the appointment

 

My dad came in Friday for the weekend for General Conference.  We have been having fun with him and Zuri has been really cute--she wanted to sit next to him during the sessions.  I have tried to get some cute pictures of them but every time I pull out my camera she would turn away.  Zuri is going through the "pretend" camera-shy phase.  She doesn't want a picture taken, but when the picture is taken she always wants to see herself.  Too funny, but it is getting really hard to get a good picture.


I was fortunate enough to get this shot with Zuri playing dress-up.


This week Kai has been a little more fussy than normal.  He is fine as long as he is being held, but as soon as he is put down he gets fussy.  I am not sure why the sudden need for attention.  I included this shot because Kai was so tired but refusing to fall asleep.  I stood and just rocked him until he finally gave in--and I was able to get him back into his crib without waking him (quite a feat with all the cords and tubes we have to navigate around).  I took a picture of my victory!

Saturday, J's maternal grandpa came over and got to see Kai for the first time.  He and his wife spent some time with J and Kai (Zuri and I were in Salt Lake).  J's grandpa brought over tables he had made for Zuri and Kai, which are really nice.  Zuri loves her table and feels like a grown-up with it.  

CTR Hero

In Primary Zuri was chosen to bring home the CTR Hero.  The CTR Hero is to help kids remember and learn to choose the right.  The scripture to go along with it is Mosiah 18: 1-17.  We are supposed to take the CTR Hero along with Zuri for a week and take pictures of her choosing the right.  On Sunday, Zuri will be spotlighted and the pictures shown in primary.  Rather a fun idea to help little kids grasp the concept of choosing the right!

Zuri loves the laminate CTR Hero and was dragging it all over (including to bed), so we had to put it up so it wouldn't get ruined, but I still have some shots of her choosing the right this last week!  I decided to post a few to show how she is learning to choose the right!
    
Being reverent during prayer
   
Attending General Conference
   
Helping out her little brother