Tuesday, October 25, 2011

Suctioning

So sometimes it seems to me that we suction Luke a lot and that we shouldn't be suctioning as much.  Like we could do something to make it better.  And when I go to pulmonology and they ask how many times he is suctioned a day on average, I always feel like it is too high of a number and I feel guilty or that maybe they are judging me or thinking Luke is sick or something when I say the number.  I should instead ask them what think of this number.

So what is Luke's normal...  when he is doing really well it can be an average of 12.  When he is sick it can be 20-25.  When the weather is changing, it is raining or just when he has a junky day it is more like 15-18.  This seems a lot to me, possibly becuase I have heard other moms say they suction only a few times a day.  That would be awesome.  We have been under 10 for days at a time but it has been a long while.

Today I was on the trach forums at Aaron's Tracheotomy Page and someone asked about the amount of suctioning.  Many parents that answered said they suction multiple times an hour and that is the normal.  Many said that it was a lot at first but things have gotten better and they are only suctioning a few times a day.  They mentioned medicines like Atrovent, Albuterol, Pulmicourt and Robinal to help and positioning but mostly humidification and getting it just right.  We live in Michigan and we go from humid summers to dry winters and everything in between.  Humidity on a day to day basis has a lot to do with Luke's amount and type of secretions.  Things get really different when we are in the car and doctor's offices all day than just a day at home.  The car has lots of hot dry air blowing around and it is very dry and so he secretions get thicker.  When the weather is wet he is loose and lots of suctioning.  I think Luke also may have allergies of some sort which factors in.

So I feel lucky that our normal is not suctioning multiple times an hour.  Because when Luke is really junky I get pretty fed up with suctioning so often and constantly hearing the secretions in his trach.  It one of those things that drives me nuts.  I feel bad then becuase it is not his fault and I do not get frustrated and upset with him.  It is the situation.  It is not a normal pet pieve and when I am in a good mood it can go okay, or put me in a bad mood in no time at all.  I get really snippy and on edge and just not fun to be around when I have to hear the secretions all day and have to suction a lot of times.  I don't like that it is like this and I am trying to take deep breaths, have more patience and just letting it go.  I try talking to God about having more fruits of the spirit, kindness, gentleness, self control (is that a fruit, I forget).  Luke is really helping me to practice being more patient and gentle.  When I get upset I do wish Luke could get better faster that he would be able to get rid of the trach and all this noisy breathing and suctioning.  But it looks like we are in for the long haul, more patience required.

So there are my thoughts on suctioning.

Friday, October 21, 2011

One long trip and some realizations

So I decided to take my 2 month old and my 2 1/2 year old on a state tour stopping to see doctors in Ann Arbor and Grand Rapids this past Wednesday.  My mom has already said "I told you so" in that this was not a good idea.  I in my logical, not dealing with small children in cars thought this would save us 4-5 hours of driving if we did it in two appointments.  I did not think about pouring rain, a very windy day, getting 3 1/2 hours of sleep becuase my baby didn't want to go to sleep, and what would happen when shutting a teething 2 month old and active 2 1/2 year old in a car most of the day would be like.  We made it and we are home.  My mom went with me and at one point only an hour from home we were not sure if we were going to make it.  But we did...I was sick the next day and my husband had to stay home from work to take care of the kids to top it all off.   So kudos to my mom for driving through crazy weather, construction, by accidents, a crying infant and with a Luke that needed suctioning often (mostly due to the weather and dry car air) and by the end was getting upset and pulling on his trach so I was turned around in my seat suctioning him.

So why did we go on this crazy adventure?  We went to a consultation with a doctor about jaw surgery for Luke.  Another Moebius girl we know in our state used this doctor for jaw surgery and our ENT (we share most of our doctors) recommended him.  I really like him and his resident and intern.  They were friendly informative and seemed full of action.  They are gathering some information from some of our other doctors and will be getting back to us with a full recommendation soon.  Luke did pretty good and the doctor got a good look in his mouth while he had his hands in it so we only had to hold Luke down for a very short time for a better look.  Luke does not like medical professionals in the office setting.   He does not care if they are only listening to his lungs or if they are trying to get blood.  It is all defenses up for it all.  And his mouth is one of the worst places you can try to look. 

Then we went to see our pulmonologist, for this first time since sleep study results from July were back.  She did not have full results from the October sleep study, only prelimiaries so we will hear more when they come back.  However, I was thinking that Luke was on the vent at night just for sleep apenea (possibly denial on my part) but our pulmonologist was clear that he still was not breathing adequately at night to be without the vent.  She said that during the day he does good because a different part of his brain (I can't remember which part) can help with breathing during awake time.  When Luke goes to sleep this part shuts off and leaves the breathing to the pons and medela or one or the other.  These two parts are not normal in Luke's brain and have been show in the literature to be abnormal in Moebius people.  She said that his breathing problems are in his brain and that there really isn't much we can do but wait and hope he grows out of them.  WOW, it really hit me that I am looking at Luke on the vent for sleeping long term, but not necessarily forever, and that the trach will be in long term as well.  I do believe God could work a miralcle and things could change shortly but we forge on ahead with long term ventilation for Luke.

It makes me sad as I don't want my baby boy hooked to machines when he sleep and have to breathe through his neck and all the extra care that goes with that.  I want him to be as normal as possible.  I am working on really coming to terms with that but I am not sure I am there yet. 

Luke however, is forging ahead.  He is now pulling himself to stand against furniture.  He walks along the furniture as well.  He is crawling fast all over and is trying to stand on his own.  He did have more stitches due to an accident with his walker, gravity and his glasses but seems no worse for the wear. 

Hannah is 2 months old and doing great.  She is teething (my family teeths early) and so has become a fussier baby.  She is sleeping through the night though, once she gets asleep.  She is smiling a lot and babbles and I think I have even heard her giggle.  She is generally a happy baby and loves to watch Luke do whatever Luke is doing.  She was baptized a couple of weeks ago and all sorts of family came to see her and Luke.  We had a great time.

Here are some not so current pics, but more current than the previous ones...

Our Family

Luke exploring his books in a new more accessible location.

Luke is playing on his hands and knees a lot.  Here is is checking out his letters, he loves letters and numbers.

Here is daddy with his kids :)

One of Hannah's many faces

Hannah holding her head up high.

 Luke signing "daddy"

Luke basking in the sun.

Luke coloring.