Monday, May 6, 2013

Hope for a possibly trach free Luke

It seems I update only when I have nights with no nurses.  Probably it is the only time I feel I can squeeze it in.  I should probably be working on my meal plan and shopping list right now but there are still hours to do that (more about that later).

So wow, it has been awhile.  I though at one point I would do weekly updates, even to just get myself to record what is going on in my kids lives once in awhile.  So maybe this could be the start.

On March 6-7 we went down to Mott's Children's Hospital to get a sleep study with their team and to see their Pulmonology team about their thoughts on Luke and the possibility of getting a phrenic nerve pacemaker.  What is that you ask?  Basically it is a pacemaker that stimulates the diaphragm and thus make the lungs inhale and exhale.  It acts as a ventilator internally.  This would be awesome for us as the vent and hopefully his trach would go away.

So how did it go.   Well we got to a room and it was huge!!!!  This was awesome as usually we don't have enough room for our stuff and to move.  Since we would need to be in the room with Luke this was great.  Luke explored by walking around his crib (yep we had the rails way up) until we got him tied down with all the electrodes and things.  He fought getting it all on in true Luke, what I am supposed to have low muscle tone but can push a grown man away, fashion.  We finally got him hooked up and it took him forever to fall asleep.  And then he was leaking which we had been worrying about (and found out that he was just fine with the leak) and would not keep his CO2 monitor on.  He was so greasy from the stuff they used to put the electrodes on that we had a tough time getting the stickers to stick.  We finally cleaned off the largest portion of his forhead we could and hoped for the best.  Shortly after this my shift was over and I got to get some sleep.

Luke started with no oxygen, no vent, nothing.  His CO2 started climbing and between 45 and 50 we put him on the vent.  I was hoping that the CO2 climb was due to his maddness about getting the electrodes on and that he would fall asleep and it would go down but it did not :(  He was on the vent but no oxygen for the rest of the night.  I got back to a ready for the day Luke and we pack muled Luke's stuff (with a wagon too) back to our hotel room so that I could get a bit more sleep before our first appointment.

We saw the jaw surgery resident who said things were looking good.  We saw the dentist who said things were looking good and she was able to get in with much much less fuss that last time.  Good job Luke and dentist lady!

We then went to pulmonolgy.  I was pretty nervous.  Luke has had the same pulmonlogy team from his 2nd month of life.  The doctor and I have learned about each other and were doing well.  I didn't love them but had no qualms with them either (expect for the nutritionist which I am sure I have mentioned before).  I was nervous that they would say he wasn't a pacemaker candidate, that they would say he needed a vent for life. Yeah I know kids amaze us but hearing it still wouldn't be fun.  And then there was a new nutritionist to talk to and most likely get in a heated conversation with due to our "unconventional", we like to feed our kid real food, ways.  And I had not had that much sleep.

However, things went great!!!!!!!!!!!!

In these visits Kevin handles Luke and I handle the talking and taking notes.  I forget things if I have to handle Luke too.  And Luke needs a lot of watching as he is bored and nervous and on an exam table that he likes to lean and look over the edge but doesn't get that he can fall.

The pulmonologist came with with the neurologist that read and analyzed the sleep study.  Yes I said that right the neurologist came too!  The pulmonlogist gave us the results (the neurologist seemed the quiet like to be analyzing data on her own type) and they were positive.  Luke is a candidate for the pacemaker.  They would like to wait a year to do it so that his airway gets bigger and stronger.  The pacemaker stimulates the diaphram and the pressure that it creates as it pulls down can cause the trachea to suck in and become to small for sufficient air to go through.  This would make it necessary for Luke to always have a trach as a trach would hold the airway open.  This was a shock to me and I hope and pray that this will not happen to Luke.  As much as I didn't want to wait a year, I tell myself that waiting a year will help Luke get the trach out.  I am not thinking much about it never coming out.  When I am having a rough day with Luke I think about him being trach free in 2 years.  Yes just 2 years!!!

They confirmed Luke has hypoventilation and central sleep apnea.  They said it is unlikely that he has congentital central hypoventilation syndrome (CCHS) because of how his hypoventilation presented.  Luke's hypoventilation is not severe enough and his CO2 is lower than in CCHS.  Also CCHS patients don't respond like Luke did to interventions.  However, either way it doesn't change the management of Luke's breathing.

Then the nutritionist came in and I had my paper with Luke's diet ready to give her.  I was pretty nervous and I think there was tension as Kevin knew this could be very frustrating to me and I knew it as well.  She asked what Luke ate and I handed her the paper and told her he eats a blenderized diet and was waiting for the backlash.  And then she said that it was great that I was doing a blenderized diet and they were working to get more of their patients on them as there are benefits to reflux and all sorts of things.  I am glad I was sitting down.  Wow!  Awesome!  She asked if I wanted her to run the numbers of my food, not demanded, and I said sure because they hadn't been run in awhile.  I even e-mailed her the info I had on blenderized diets and our experience and some links that she could pass on to others.  Awesome visit!

So all in all I am very happy to be with the team at UofM.  We are still pursing getting an opinion from a hypoventilation expert in Chicago.  They don't have an opening till February.   

So how is Luke otherwise.  He still likes school.  There have been changes and some increased loudness with some other kids that have caused Luke to be more agitated and upset at school but he still likes to go.  He is progressing well.  He is walking with his walker and with us holding his hands better and I am hoping that he will walk by himself this year.  He is also been working on standing up by himself and has been doing it for up to 10 seconds well.  He loves to get the praise of others when he does.

Luke still is enthralled with books and will spend a lot of time reading.  As for toys he probably likes the cars the best.  The parking garage, road mat and cars are his favorite toys to play with.  He does still play with blocks and likes to play with all the furniture in the dollhouse.  He is noticing little spots or marks or pieces of dust on the floor, wall, anything.  So I guess his eyes are doing okay.  We pulled up to the library the other day and I was just going to drop some books off and take the kids to the park.  Oh no, we had to go in.  Luke was signing library as soon as the building came in view and was pointing to the building.  I asked if he wanted to go in or to the park and he wanted to go into the library.  So did Hannah as she likes to play with the toys they have.

Luke has an awesome new wheelchair. We are really excited for it as it sits him up nice and makes him not look so much a baby in a stroller.  He has the ability to move the wheels himself and had moved them a couple of times but is happy to have you push him.  Getting him into the wheelchair for fitting was not a good experience.  It was a hard 5 minutes as he was bent on pulling his trach out to tell us how unhappy he was.  I was almost in tears.  I realized afterwards that he needed to be introduced in the right situation.  We tried to put him in it when he wouldn't have been put in a stroller.  It was at the end of the school day and he usually walks with his walker to the door.  Also I was there and a new person, the guy who ordered and fit the chair for us.  So a couple of days later when we were going for a walk I left Hannah in her seat and took him out and put him in it.  There were some tense moments and him trying to pull the trach but he settled down after a couple of minutes.  It was a beautiful day and with Hannah on my back we went into the library and then for a walk.  The next time I put him in was when were getting out for some air on our trip to Chicago for a wedding and he didn't fuss a bit.  I guess I just need to get smarter about how I introduce things.  I would probably be unhappy too if someone came and interrupted my schedule to put me in a new kind of chair and someone I didn't know came to look at my feet and my legs and how they fit into it.  Even if the wheeles had cool lights on them.  Which they don't anymore as we had to get bigger wheels because I am not one to stay on pavement with Luke.

Luke is also getting more adventurous outside.  The other day he was crawling in the grass which he wouldn't do last summer. And our grass is wet and can be picky.  He was all over and was going down slopes both crawling and scooting down on his but.  He was a typical dirty boy when he was done.  I pointed out a small spider on the shed wall and he was tapping behind it to make it move.  He was pointing out stray garbage in the yard and crawling over and pointing right to it so that I would clean it up.  He crawled over to investigate a tree and got stuck as it was near a slope and asked for help to get out.  He was the explorer of the day.

Wow Hannah is a bundle of energy.  She is running, climbing stairs and other things, she can navigate an iPhone, likes to eat, likes to help me clean, likes to help dad cook, and does not like clothes.  Her favorite thing to do is color and write with crayons, markers, pens, whatever she can get a hold of.  And she needs some direction about what is appropriate to write on.

Hannah loves to go outside.  We got her some rain boots that are really cute and she wore them for a couple of days strait (except for sleeping).  Our backyard is a swamp and so there were plenty of puddles to splash in.  She loves to swing and for as much running as she does in general she will spend most of her time at the park in a swing.

She likes tools and was all involved in "helping" Kevin take screws out of wood to burn as he was cleaning out the shed.  She is interested in everything.  One of her other favorite things is to look at "Hannah pictures" on our iPhones.  If we have them out she wants to see pictures and videos.  She has her own iPod, my old one, but it isn't compatible with the videos I take on my phone so I can't transfer them.

She is not fond of clothes and especially dresses.  She looks adorable but they go on with a fight and this morning she was trying to pull one off her before church.  She is starting to pick out and put on her own clothes although this usually end up with some interesting outfits worn in some interesting ways.  Right now I really just make her put clothes on when we go out.  She has even been taking her pjs off.  Thankfully she likes to keep her diapers on.  She is becoming interested in the potty and likes to tell you when she farted.

She sleeps like a dream though.  I sometimes take her sleep for granted and I really shouldn't.  Days with her can be rough.  She is whiny as she knows what she wants, when she wants it.  She does not understand that changing shoes every five minutes and getting this and that for her will make it take longer to get out the door which causes more distress as anytime she sees that we are going out she wants her coat on (in her memory she has not know life without a coat) and to go out NOW.

Thankfully she does talk well (and a lot) so that even if you can't give it to her you usually know what she wants.  The is quite the commentator of everything going on especially what is going on with Luke.  She is working on figuring out how to feed him herself, much to my dismay as it creates quite a mess.

But wow is she cute.  And she can be very cuddly and sweet.  She is a typical toddler and we love her.

So what am I up to, besides kids?
I am still a Thirty-One consultant and I really like having all the great bags around to use.  It makes life with Luke and kids in general easier.

I recently discovered Norwex, a company that sells microfiber cloths that you use to clean.  You can clean with just the cloth and water (I tested it with raw chicken and yes its true) which I think is very "green" and awesome as it is easier.  We are using them a lot and I can't wait till I get the stuff from the party I had.  I like them so much I am thinking about becoming a consultant for Norwex too (if you are interested in it let me know ;) as I love to talk about what I love).

I have been thinking about essential oils for awhile now but have been overwhelmed at all the knowledge and info there is out there but have finally decided to take the plunge.  We have been using a few that my aunt sent me.  Thanks a bunch Aunt Sue!  But I have dove in with Young Living and am getting my first set this week.  I have been reading up on what they can do and their references in the Bible.  Lately I have been using Lavender to help Luke calm down and sleep (I am waiting for my Peace and Calm) and it has cut down his fighting sleep time at least in half and it is helping get him back to sleep in the night as well.  Yeah!!  Another Moebius mom has used them with her trached, and possibly some vent time, son and had great results keeping him healthy this winter.  I can't wait for Theives and what it can do for my peace of mind with germs and Luke.  I have used some Theives products (from my awesome aunt) and loved them and just feel better all around when I smell them but haven't used them in ways yet that my scientific mind can quantify.

Oh and I am also working on keeping our family (other than Luke who eats great, one plus about eating by g-tube, you can eat all the healthy stuff without tasting it and you don't miss the sweets) eating healthier.  And also having meals planned so that there isn't the "what's for dinner" dance and we end up eating something soso.  It is taking a bit of work.  I haven't got a system down yet and I like to plan for a month so that I can get as much as possible on my 10% off day at my local co-op natural and organic foods store (The Grain Train).  I have finally decided to dive full force into Kevin's wiki he made for us to keep all our recipes that we keep a copy on dropbox.  I am using Ziplist for my grocery list as it organizes things by category.  There are others out there and I don't keep my recipes on there because for some reason I don't like my recipes on someone elses' server in their format..  I know I am weird, I have tried it and it is just not for me.  Some of the other apps like Evernote and Springpad and Cozi are just slow and I am not one that likes to wait on an on-line based app.  I have recently heard about another order by mail co-op group that I am going to check out as well.

I can't wait for my farm share, not in season till the middle of June, as I will have fresh veggies all the time that I won't have to go to the store for.  We have found a new closer to home farm, Bluestem Farm, that I love.  They have meat shares and I love their farming practices.  They just started in the area and have a little one too.

We are still trying to sell our house.  I have high hopes that it will sell this spring.  I would love to be moved by the time my parents move July 1st and with God's help it can happen.  I am confident that he has a plan for us I just don't want to wait any longer for it.

Okay so that was a lot and here are the pictures that I am sure you were waiting for...
(there are more but my computer won't upload at this time)


  1. You are amazing! It will be great for Luke and Hannah to have this history and follow all the changes in their lives from such an early age. Even though I am not near, I love reading your updates. You and Kevin are awesome parents and your children are so blessed to be yours.

  2. Wow, great post! I am also a Thirty One and Young Living consultant. I am curious how you have incorporated oils in your trach care, if at all? I have a group of about 6-10 trach moms needing some guidance and I'd love to help give them some encouragement about successful oil use to prevent and treat! Blessings to your family!