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.

Kids Say (and Do) the Cutest Things

It is fun to watch as personalities develop in children.  Zuri is a little girl with a huge personality.  She has a ton of energy and is always on the move.  The other day she brought her blanket and pillow into the kitchen and put them on the floor in front of the fridge and laid down.  It was the oddest/funniest thing.  She decided that she was going to sleep there and could not be dissuaded.

Today in nursery, one of the nursery leaders said that she had a banana and was showing Zuri how to pretend it was a telephone, but Zuri wasn't so convinced.  Zuri told her it is a banana and that you are supposed to eat a banana.  She proceeded to show her how to eat the banana. Zuri then went over to the toys and got a phone, where she told the nursery leader that this is a phone and you talk on the phone, not a banana.  Hilarious!

Hogle Zoo

Last week J's family came up and he and Zuri joined them for a day at the zoo.  It was a cooler day so the animals were out and roaming around.  J took a lot of really great pictures of the animals, it was hard to choose from them all.  I chose a few of my favorites to post.


Everyone (minus J who was taking the picture).










I love the look on the owls face--it looks like he is smiling!

On the carousel with Grandma--Zuri was really excited. 


Sliding down the tunnel at the playground.  It was a big thing because she doesn't like enclosed slides.  Once she started sliding down, she loved it!

Three Months and Counting

He is now officially 3 months old. What a crazy three months it has been! He has exceeded expectations--clear back from pre-delivery when it was unclear whether he was going to even survive birth. He is a definite fighter. :-)

I still can't get over all of Kai's hair! He needs a haircut already! Kai is also going blonde--his roots are all blonde so he has natural highlights. He loves having his head rubbed and is tolerating touch pretty much anywhere now--even his feet, which he hated before. He is getting so big that he feels more like a baby and less like a fragile doll.

The Good, the Bad, and the Tantrums

We have had a busy couple of weeks!  We are successfully moved into our new place.  The move wasn't really that far, just on the other side of center street but the upgrade is undeniable.  I think my favorite thing about our new place is the jetted tubs.  Oh, so nice!

Everyone has been really nice and we are loving our new ward.  There are several families who have children with special needs and it is really great coming into a new place and not being such complete oddballs.  Our neighbors all have children right around Zuri's age and she has had fun interacting with them.

Zuri is not handling the move as well as she normally does.  We have never had any issues with her in any of our moves, but this time she isn't adjusting as well.  She has been more on edge and has had more tantrums than normal.  She is also having a hard time going to bed at night.  She is sleeping through the night though.  I am not sure what is going on with her--could be all the changes that have happened in the last few months.  We are trying to give her individual attention and include her in the things we do with Kai.  She loves to touch his head and hold his hands.  She will give us updates on how he is doing.  It is really fun to watch.

We received some news that is not so good today.  Yesterday, J spent the day with Kai up at Primary Childrens for follow-up appointments.  They took Kai's blood gast to see how his carbon dioxide levels are and a chest x-ray to view his lungs.  His carbon dioxide levels were a little on the high side and there is evidence of a small amount of lung collapse.  What it means is that his body is not taking in the oxygen as it should and if his levels continue to be high then he will have to go back on a ventilator.  Kai also had his trach size increased to accommodate his increased size.  We are hoping that with the increased trach that he will be able to breathe better and decrease his carbon dioxide levels and keep him off the ventilator, especially since he has been thriving in every other way since having come home.

News that is good is that he is now 7 lbs 9 oz and we had a meeting with Kids on the Move today (it is an early intervention program).  In the evaluation they said that as of right now, Kai is pretty much on track developmentally for his adjusted age (adjusted age is where he would be if he were born on his due date--it is something they do with all preemies).  :-)