Calm Week

As far as things go, it was a fairly uneventful week for us.  It was nice to have a quiet week for a change.  Kai is feeling better--the antibiotics helped with his ear infection.  He is still spitting up more than normal though. 

We had a little scare earlier in the week when J accidentally pulled out Jeremy's g-tube.  He went to pick Kai up to hold him, forgot that we were venting Kai (the g-tube equivalent of burping him), and as he lifted Kai, the g-tube got pulled and popped right out.  Luckily, there was no damage to Kai and we were able to put a new one in with no problem.  The old one looked as though it needed to be changed out anyway--it looked pretty corroded.

We got Kai laughing this week!  He loves to be bounced, and we got him laughing while bouncing.  It was awesome!  He sticks his tongue to the roof of his mouth when he laughs!  I haven't had a chance to get a good picture of it yet, but a picture will be forthcoming!

Speaking of pictures, I got a new camera!  My old camera was not working correctly.  The focus was out and I would have to hit the shutter button up to six times before it would finally take a picture, so I often missed the shot I wanted.  My new camera is still a compact one, but it is a Sony--the first Sony camera I have owned (I have always had Nikons), and I am loving it!  It is very speedy and takes some amazing pictures.  I just got it yesterday, so I haven't had too much opportunity to play with it, but I am looking forward to having some fun!  The picture above is taken with my new camera. :-)

J and Zuri had a daddy-daughter day yesterday, where J took Zuri swimming.  She had so much fun that she was mad when she got home because she didn't want to leave.

J and I also had a date night yesterday!  It was really nice, but a little chaotic.  We went and saw The Hunger Games.  The nurse was caught in traffic and was almost an hour late, which put us rushing to the theater and not having a chance to go to dinner beforehand.  Luckily, we had bought tickets at a theater which does the reserved seating (I love those!) so we didn't have to worry about our seats.  The movie was really good and stuck fairly closely to the book.  The only thing I really didn't like was the fact that the camera jiggled a lot and wasn't smooth.  A little bit is okay, but I think it was overdone to the point it was distracting.  Other than that, I was really impressed! 

After we got home from our date, J crashed, but our night nurse had brought over a movie and so Shin, Heather, the nurse and I all had a movie night (which we had been talking about doing for a while now) and watched Real Steel.  I hadn't seen it before and was pleasantly surprised.  It was fun and something we will have to do again.

This next week promises to be a busy week, so stay tuned!  Also, next weekend is Conference and my dad is coming in from Tahoe.  We are excited!

Can't Catch a Break

We have had a busy week and poor little Kai just can't catch a break!  On Tuesday evening he developed a fever.  Wednesday he received his shot for RSV and we found out that he has an ear infection.  For the last couple of weeks he has been spitting up a lot--and it has been projectile spit-up.  He hasn't appeared to be in pain but has been rubbing his right eye a lot and has been a little more lethargic than normal.  He has still been his happy self, blowing raspberries and sucking on his fingers.

Wednesday was a busy day for us.  We had three appointments that day.  Two for Kai and one for Zuri.  We had respite hours scheduled for that day and we had an extra nurse who was in training.  It was really nice to have the nurses along for the first appointment (Zuri and I went to her appointment on our own while the nurses took care of Kai at the house).  I didn't have to worry about Kai in the back at all and I had help getting around with both kids.  Having the nurses along (while it felt a little silly to have such an entourage) made the whole journey so much less stressful and easier.

                                                 Zuri just had to wear that outfit.  So styling!

The nurses had to leave before the last appointment, which was in Salt Lake, so I did that one on my own.  Luckily (sad to say), because of Kai's ear infection, he was just sleepy and did not have any incidents in the car.   He is loving his new car seat--so much more comfortable for him!

The appointment in Salt Lake was to get Kai's stitches out of his eye!  He now has the ability to open both eyes.  However, the corneal ulcer left a lot of scarring, and the thin spot is still there.  Because of the placement of the thin spot (and because it bubbles out) it looks as though it is his pupil, so his eyes don't appear to look in the same direction.  It is a little disconcerting, until you realize it isn't his pupil, which is hidden under the white of scar tissue.  You have to look in his right eye to know where he is really looking because he can't see anything (besides light) out of his left eye.

While I was trying to get a good picture of Kai with his eyes open, Zuri had to get into the shot!

At this point in time, the recommendation is not to have a cornea transplant.  The reasoning is because he is so young, they believe his body will just reject it, and we will just have to do another one in a year anyway.  The doctor also said that we have not fixed the underlying problem--the fact that his eyes protrude, so even with the best care, the chance of another corneal ulcer developing is almost 100%.  We are keeping his eyes lubricated and that is about all we can do.

Thursday, we woke early and took Kai in for his CT scan.  The results were not so good, and in order to figure out how to proceed, they want to do another MRI in a few weeks.  It will be his third MRI (it was also his third CT scan).  Poor little guy.

As stated, the results of yesterday's CT scan were not all good, but there was one tidbit of good news.  The good news is that while the fluid in his ventricles is still abnormal and a little high, it is not high enough for surgery, or even to be termed "hydrocephalus" anymore.  Yay!  The bad news: basically, they kept saying Kai's bone structure is abnormal (yes, we get that--it goes along with his syndrome).  The problem is that his spine is too compressed and too narrow at the area near his brain stem.  Our options are: to leave it be, to put Kai in a collar, but that would be extremely difficult because of his trach and vent, or the last option is to do surgery, remove a bone and fuse things together.  If we just leave Kai as is, any torque or sudden movement to his neck can cause irreversible spinal damage.  As if I wasn't already paranoid enough about his alignment--now I am doubly so!  The collar would be restrictive to Kai and hard because of his trach and vent.  The doctor was reluctant about the surgery because of Kai's age and size.  He said while it isn't unheard of to do the surgery on one so little, it is very unusual and he hesitates to do it.  That is where the MRI comes in.  If the MRI shows that there is alignment slipping/bone slipping out of place, or it shows that the surgery is needed based upon danger to Kai, they will.  Otherwise, we will go one of the two other routes.  He said that people with these kind of alignment issues tend to "fall apart."  At that point my mind was just on overload and I didn't think to ask what he meant by that.

Honestly, I don't know how to feel about the news.  Yesterday, I was pretty upset, but today it is just one more hurdle.  I was reading another blog yesterday while waiting for the doctor, and she was talking about only allowing herself the facts when it came to her daughter's limitations.  When she was ready to accept them she would let them in one by one.  I have come to realize that I do that with Kai.  Line upon line.  I get the facts, but until I am in a place to process them (not at the doctor's office), I try to keep my emotions out of it.  I don't think about what it all means on an emotional level.  Trach...g-tube, oxygen dependent, corneal ulcer, cranial reconstruction, abnormal bone structure....   These last ten months have been crazy, and have taught me so much.  I am a better person for them.  I am learning how to deal with things even beyond the physical nature of taking care of Kai, and because of it, I am able to take news like we received yesterday and be okay.  Disheartened, yes, but okay.

As for Kai?  He is still a happy little (I am going to need to stop using that term with him soon--he is not "little" anymore!) guy.  Despite everything, he has a curiosity for the world and is content to just be held while he sucks his fingers or blows raspberries.

 On a lighter note, Kai is going to be published in a medical journal!  It had been talked about when he was in the NICU, but I officially signed the release papers yesterday.  The doctor told me that it will take about three months to be published and she will send us a copy!  Pretty cool.

A Weekend Get-Away

Emily left us on Thursday; as much as we are excited for her to go to Japan for the next year (or so), it was hard to see her leave.  We had a blast with her the last two weeks and she will be missed.  Who knows, we may just have to save up our respite hours for a trip to Japan! ;-)

Friday, J and I took of to Steamboat Springs, Colorado.  We spent the weekend just relaxing, sleeping in, going to the hot springs, and catching a movie.  It was wonderful--and much needed.

When we got into our room, we noticed that it did not have a jetted tub, which we specifically paid extra to have, so we went to find out what was going on.  Turns out, there was a misprint on the website, so they upgraded us from a one-bedroom deluxe to a two-bedroom presidential suite!  Whoohoo!  Can't complain about that!

Friday night we went to a local Italian restaurant, which was SO good, and so much food!  We had originally gone to a steakhouse, but it turned out that it was the type of place where you cooked your own food.  Since we were on vacation and wanting to relax, we had no intention of paying $40 per plate and cooking our own meal, so we decided to go somewhere else.  The Italian place we went to was so much better, and there was so much food left over that we were able to make another meal out of it!

Saturday morning we slept in (heavenly!) and since J is a morning person, he was up before me.  He went out and bought some Martinelli's and dessert for that evening, and roses for me.  We went out to brunch then went to Strawberry Hot Springs, where we spent the afternoon.  The hot springs had several pools to soak in, and the river ran alongside on the right.  The river is runoff from the snow, so it was very cold.  J kept trying to get me to go in, so I told him I would go in if he did.  Sure enough, he did and swam to the other side, which meant that I had to go in as well.  It was SO cold, especially after being in the hot water of the hot springs!
 
The big muddy brown water is the river, not the springs.  The river is snow runoff and cold!
The weather was beautiful.  It was so warm that a jacket was not needed and we had beautiful sunny skies.  We had a blast at the hot springs and thought about staying past sunset, but then it becomes adults only and clothing optional, which we had no desire to be around for that! 
   
Yep, that is me with my back to the camera, dipping my legs into the springs
 
One of the upper pools.  We spent time in each pool--five or six in total.  So fun!

Saturday evening was spent in downtown Steamboat Springs.  We wandered the shops and just enjoyed the beautiful weather.

We forgot about daylight savings and were surprised when the alarm went off at "4:30" signaling that it was time to get up Sunday morning.  Luckily our phones changed and we were able to leave on time.  Unfortunately, even though we were ahead of schedule, we missed a turnoff and ended up losing 45 minutes, which put us getting home about 20 minutes late.  I have been wanting to get a GPS device ever since we borrowed J's parents while we were in Georgia (we didn't have cell signal in the area we missed the turn, so that wasn't an option), and now it is on my must-have list.  For those who know me, you know I get lost pretty easily, so I like to have directions on hand. 

Zuri spent the weekend with J's parents, who stayed at our place.  The nurses took care of Kai and all went well except his stitches are starting to come out of his eye.  I think he rubbed his eye and pulled on the stitches just right.  He has been fighting to get his eye open ever since they closed it, so it doesn't surprise me that he is finding a way.  He had an appointment this week to get the stitches out anyway so it isn't too bad.  I tried calling his optometrist today but he wasn't in.  Hopefully all is well with his eye.  From what I can see, there is quite a bit of scarring, but we will find out more (and our options) when we see the doctor this week. 

I got a picture of a smile--it was the tail-end of the smile, but I got it!

Nurse Who?

The weekend started off with a bang--we were finally able to start using our respite hours!  Friday afternoon the nurse showed up to relieve us, and we had the whole evening to ourselves!  Zuri had been asking for several days to spend some time with my mom, so my mom watched Zuri for us while we went out.  Because my mom lives in Salt Lake County, we spent our evening up north.  Emily came with us and we had a fun time!  We ran some errands first, and then bought J a new phone.  He is so excited for his new toy!  We rushed to our movie (luckily we had bought tickets ahead of time and the theater supports assigned seating--love that!).  The movie was great--we laughed so hard throughout.

We got home just before the change of shift for the nurse (we scheduled the respite hours to go right into the night-time nursing hours so we didn't need to worry about a 'curfew').  I must admit, it was really strange to leave the nurse at the house with Kai.  Although it was harder to adjust to having someone in the house while we slept.  :-)  It was so nice to be able to get out!  We felt so rejuvenated after just a few hours away!

On Saturday, Emily and I went out while J stayed home with the kids.  We bought a new chair for Kai!  Our OT actually recommended using a high chair, and it works great!  Kai loves it--he even fell asleep in it.  The chair allows room to grow and reclines.  Now Kai can get out of the crib more!


Kai has learned a new trick!  He pulls both legs up and thumps the bed with them.  He does it when he is excited, really upset, or just wants attention.  We have also continued to see instances where he smiles and laughs.  It is infrequent and inconsistent, but extremely encouraging.

Sunday morning I got up early so J could sleep in.  The nurse reported that Kai had slept mostly through the night and that she had gotten all his cares done.  Kai was still sleeping when she left, so I let him be.  When it was time for his next feeding, I changed his diaper (extremely wet, but not necessarily an uncommon thing), changed his sat probe, and then went to connect his feed.  That is when I saw it.  His g-tube cares hadn't been done, and at some point his g-tube had leaked stomach contents.  The gauze was stained yellow and had started to dry in some parts but was mostly wet.  When I took the gauze off, Kai's skin was extremely sore and rashy.  Needless to say, I was extremely upset.  It doesn't help that the nurse herself has shown increasingly poor performance over the last few months, even though when she first started with us, she was one of our favorite nurses.  She has had a lot of personal issues that I believe are effecting her work, and I should have known something was up Saturday night when she was annoyed that Kai was awake when she arrived.  She also seemed very exasperated when Kai got fussy shortly after her arrival--in fact, I stepped in to calm him down because she basically gave up.  By the time I went to bed, however, she had warmed up a bit so I didn't think anything of it.

This photo was taken several hours after the discovery, after I had cleaned and put ointment on to help it heal and it had a few hours of air time. 

The problem has been promptly addressed and taken care of through the nursing agency.  The nurse was very apologetic and has said she will be more diligent in the future; now, if only we could do something about nurses who call in sick leaving us without a nurse for the night...

Yep, that's right, it was another all-nighter for us again.  Sadly enough, we just lose the hours that the nurse would have been here.  Emily stayed up with me until I went to bed just after four.  She stayed up even longer until six, when J took over.  J then woke me up at eight-thirty so he could go to work and Emily slept until almost noon.  I was originally going to go to bed at three but I hit a second wind.

I am paying for it now, though, because I am very tired.  I know I will crash when the nurse gets here tonight.  I am very thankful that Emily was here to help keep me awake and entertained.  :-)  It will be sad to see her leave on Thursday; we have really enjoyed having her here.

Kai was awake with us until three, when he finally crashed.  So much for him sleeping all night long, which he has been doing with the nurses.  Go figure he would be up most of the night on my shift.  He is also wide awake and blowing bubbles now.  Hopefully he will have a good nap this afternoon.  :-)


Just a fun picture of Little Miss Z from yesterday.

On an extremely cute note, Zuri woke up from her nap today calling out: "I need a hug!"  When she came out from her room she gave me a great big hug.  

Moments like that are so precious.