It's Good to be Home

Kai is back home and without a ventilator!  He is borderline needing a vent and the doctor was fairly certain that he will need one in the future.  He was particularly worried about the upcoming winter season.  We are still taking things one day at a time when it comes to Kai.

Traveling in the car is not easy with Kai.  We usually have to pull over at least twice to suction and/or replace his oxygen because he has managed to pull it off.  He was so tuckered out from the car ride and his stay in the hospital, that he slept soundly when he got home.  I think he is glad to be back as well.

And So it Begins

One would think that after having left Kai every night in the hospital for six weeks that I would be used to it.  Not so.  Tonight was very hard to say goodbye, even if it was just for the night.  You see, Kai's carbon dioxide levels have still continued to increase, which means they are going to put him on a ventilator.  Or are they?

It is up in the air right now.  Last night, the nurse noticed retractions while Kai was breathing--which means he was having a difficult time breathing.  It is one of the things we watch for with trachs. So, we called up his doctor and they revealed that his blood gast was at 62 and they wanted him to come in today to get set up on the ventilator.  It would be an overnight excursion because they need to see how well he does and the right levels.  When we arrived at Primary Childrens, however, they didn't put him on the vent right away.  They have taken two blood gasts so far and each has been better than the last.  In fact, the first one they took today, even though it was still a little higher than they would like, the doctor said that his body is compensating and that his blood ph is normal.  Which is a good thing.

Right now they are monitoring him without the ventilator, and if we are extremely lucky, he won't have to have it.  They brought in a new machine to monitor his CO2 levels so they won't have to keep drawing his blood.

It was very hard coming home without Kai.  I keep catching myself looking at his crib to check up on him--and it is so quiet without all the machines going.

It was a very stressful day, but I have learned a very important lesson.  This is just the beginning of many hospital trips and we need to be better prepared.  I had to scramble to get everything packed for tonight (Zuri is staying over at my mom's because children aren't allowed in the PICU).  I was originally going to stay up in Salt Lake as well, but at the last minute I decided I would rather make the drive home and sleep in my own bed.  We need to have overnight bags packed and ready to go so that we don't have to stress about packing.

To be honest, I spent the majority of the morning in tears.  Perhaps the at-home ventilator is better than the one he had in the NICU, but I just remember how restrictive it was and how hard it was to hold him.  He couldn't move and he was miserable on it.  The thought of Kai going back on the ventilator is heartbreaking to me. 

Well, we will know tomorrow.  It is not easy, and it is only the beginning, and I don't know how this will all work out, but it will...somehow.

The Job Hunt is Over

This will be my last post today.  I know I have done a marathon of posts, but I have been so busy the last week that I haven't had a chance to blog.  Part of the reason I have been so busy is that J got a job--hooray!  It has been a rough four months without an income.  I started back to work part-time August 1st and have been working nights from 4-9 pm Monday-Friday, and Saturdays from 8-10 am.  It has been a mixed blessing going back to work.  On one hand it has been nice to get out of the condo, and on another, it has been hard leaving everyone.

On the day Kimie came to visit, I got a call from my boss.  He wanted me to start working full-time from 12:30-9:00 pm.  Knowing part-time will not take care of us financially, I accepted on the conditional basis that once J gets a job that the hours I work will have to be readjusted.  Less than two hours later, J also got a call.  He got the job for which he had interviewed earlier that week!  Yay!  The only problem--it is up in Layton (for those of you not familiar with Utah geography, Layton is further north than Salt Lake; it is over an hour drive one way from Orem).  So, I had to let my boss know that not only would I not be working full-time, I was putting in my two week notice.  He was very disappointed and offered for me to work 8-5 on Fridays since Josh will be working four ten hour days.  J and I decided that for the time being, we will do that to help build our savings back up, since we have completely depleted it over the last few months.

In the meantime, we are very happy with the place we are living, but it looks like we will start looking for a place up north.  We aren't sure if we will go as far as Layton, we are thinking maybe Clearfield, which isn't too far from Layton.  We shall see.  It is really nice to be able to stop "dreaming" about the future and actually start planning and doing.

A Day to Celebrate

Thursday was our 5 year wedding anniversary.  We celebrated yesterday with a day out.  We went to Tucano's for lunch, and we were going to see the new X-Men movie but because there was an hour wait at Tucano's we ended up missing the showing and the next one wasn't until six-thirty, so we went and saw Rise of the Planet of the Apes instead.  It was pretty good--and that is coming from someone who has never seen the originals, and didn't like the remake with Mark Whalberg.  Interesting concept, and a little sad in many ways.  It makes you think about how we treat animals, that is for sure.  Anyhow, it was so nice to get out and spend time with just J.  We don't have much time together anymore and we are never able to get out together (see post below) because we have to care for Jeremy and people who are able to watch him are scarce.

I am so grateful for J in my life.  In some ways the five years has gone by so quickly, and in some ways it seems as though we have always been together.  He is my best friend.  We have been through so much and we just keep growing stronger together.  I am truly blessed to have such a wonderful man as my eternal companion. 

Why a "Simple" Matter of Leaving the House is Not so Simple

This is everything that we HAVE to bring with us when we take Kai out of the house.  The only place he is allowed to go right now is to his doctors appointments, but believe me, even if we could take him elsewhere, it is so difficult that it really isn't worth it.  Babies require a lot of stuff as it is, now mulitply it.  We have to bring his monitor, his oxygen, his suction machine, his feeding bag, emergency trach and g-tube bags, his medical documents, then there is Kai himself and the carrier, plus all the other baby essentials such as diapers, wipes, extra clothes, extra food, etc (and that is just the bare minimum).

It is very stressful taking Kai out of the house.  It is a process, and we always seem to have to pull over while we are driving to suction him.  He also has a knack of knocking the oxygen and HME (trach nose) off so he can't breathe and his oxygen saturation dips into the 70's (it needs to be 90 or higher).

I admit, there are times when I literally feel trapped in the condo.  Not only that, but trapped in the living room.  You see, with a normal, healthy baby, you can leave the baby's side and go into another room, but with Kai, he has to be within your line of sight at all times.  I can't even take take a shower.  For one, he can't cry or make sounds with a trach, so you have no idea if or when he is in distress.  Two, with the trach if he spits up (which he does, just like regular babies) the spit up has a high chance of going into his trach and getting into his lungs and he could aspirate and die.  Three, he has mucus build-up just like we do, but because of his trach, he can't just swallow it away (which is why we have to suction him), and so it builds up and can block the trach opening and again kill him because he can't breathe.  Trust me, it happens so fast.  We have had to do an emergency change of the trach a few times now and it is literally within seconds that things can go from being just fine to critical.  Four, we can't just leave him with a babysitter so we can go out.  We have to train someone who is willing to take on the responsibility of such a child.  There have been times when I have been super excited just to get out of the house and go to Wal-Mart. Work has been a welcome relief.  Five, when he wriggles and moves himself around, he often moves the trach mask (the blue tube that covers his trach) off and then his oxygen saturation levels drop below 90.  Six, he is not very portable, even in the house, so he can go as far as his tubing allows, which is less than six feet. 

To make things even worse, there is a real possibility that we won't have the night nurse anymore because Kai is doing so well.  In order to have the nursing, you have to have a certain number of points.  The more points you have the more need there is for a nurse.  Kai is fairly low maintenance where special needs kids are concerned.  He needs less than ten suctions per 24 hr period on average, whereas some kids need to be suctioned several times an hour.  He is on bolus feedings (where he is fed a certain amount, we are up to 75 ml) every three hours, whereas many kids with g-tubes are on continuous feedings (meaning that they always have food being pumped into them).  The list goes on.  Honestly, I don't know how we would do it without the nurse.  J and I have talked about taking shifts during the night.  We talked with Kai's primary nurse and she said that she doesn't know how we would do it either because there is too much to be done and watched for to have us do it on a 24 hour basis.  We need to be able to sleep. 

We are praying that we will be able to keep the nursing, at least for another 60 days (nursing is approved in 60 day cycles).  It is hard enough with the night respite hours, I don't know how we would be able to make it work without those eight hours.

Audiology

Monday Kai had the latest ABR done (advanced hearing test) so we can go forward with hearing aids.  His right ear has remained about the same, while his left ear has improved and is actually now better than his right ear.  The doctors believe it is because of the hydrocephalus decreasing.  Because of the increased pressure on the brain, it also increases the pressure on his ear canals, so when it drains, the pressure is relieved and he can hear better.  We have one more appointment on the 12th, where we will test both ears one more time and then get the mold done for his hearing aids.  We are hoping to get him to hear as well as spoken conversation.  That is the goal!

Friend from Afar

This last week has been extra busy, so I have not had time to post.  On Friday the 19th we were able to have a short visit with Kimie, who is a close friend from Japan.  Her purpose of coming to the U.S. this trip is because she was going to be sealed to her parents--which she did in the Sacramento temple.

She got to meet Kai, and see Zuri, who was all over the place and not interested in visiting.  The visit was brief, as J had to take Kai up to Primary Childrens for an appointment and Kimie had to get some temple work done in for the sealing on Tuesday.  We enjoyed the time that we had to visit, and hope to see her again soon.