Some pics of the kidos

Hannah Growing (yes she is 4 months now so these are a bit old)

Hannah loves to smile and talk!

Luke got a new chair for eating and therapy.  Thanks to a great friend for the gift!

More happy Hannah.  She LOVES sitting in the Bubo seat

Luke even helps out with Hannah by swinging her (I ran the batteries out one night and haven't gotten around to replacing them)

My side of the family visiting for Hannah's baptism

Kevin's side of the family visiting for Hannah's baptism

Yes Luke got stitches again, same thing just opposite eye.  Who thought glasses could be so dangerous.  To make him feel better when it was over we went to the park to eat his lunch.  However, the car broke and so it wasn't as pleasant a trip as expected.  Thankfully Kevin was there with his car so we didn't have to call someone but getting Luke and his stuff and two carseats from one car to another smaller one is not an easy task.

Luke is now standing at the bookshelf, chairs, couch and anywhere he can find to stand.

Just my cute Luke.

The Hannah bug with daddy

Luke and his books.  Luke could be here all day reading if I didn't get him to play with other things.  I think it would be an understatement to say that Luke LOVES books.

Sick but no ER!

Luke, Hannah and I got sick after Thanksgiving.  Luke had it worst with a temperature, I had mainly a cough and sore throat and Hannah was just stuffy.  Luke rode out his temperature  as we gave him more fluids and tried to slow him down.  We carried him back and forth into his bedroom instead of having him crawl.  We tried to keep him interested in low key toys or books (with his love of books he was happy to oblige with that one).  After the fever broke his lungs were spewing a lot yellow and white thick secretions, a sign that there was an infections or virus in his lungs now.  We have noticed that this tends to happen with Luke.  He gets sick somewhere else in his body and his body fights it off but then the bacteria that is permanently colonized in his lungs is not been kept under control and so he gets a lung infection.  His secretions turned mostly white after only a few days and but he had been needing oxygen during the day, just a bit but oxygen none the less.  He also was not sleeping as well, probably because of all the secretions in his mouth, nose and lungs.   We watched and kept close track of him and he seemed to come out of it.  At one point I though of going in to just make sure there wasn't something more serious but then he seemed to pull out of things.  No more oxygen needed, the volume of air in his lungs while sleeping (his vent measures it) was back to normal, he had a couple of better nights sleeping and his secretions were all white and clear.  The increase in secretions that happened then we attributed to the weird weather, rain, snow, cold then warmer.

I am really excited to see that Luke's body can fight this stuff by itself.  His body seems to be doing what it should and with just a little help from us, extra oxygen and more fluids it can kick some of this stuff that "normal" kids get.  Go Luke go!

I on the other hand do not get enough sleep to have totally kicked my cough yet but I am feeling less run down and one of my weekly therapists said I looked a lot better than I did last week when she saw me.  So a couple of more days of some better sleep (Hannah you could help with this ;) ) and I may be back to normal.

Thanksgiving

What I am thankful for this year...

*family that supports and loves us - we are blessed to have a family full of people who understand that we no longer travel for more than day trips and have super weird rules about cleanliness.  They love Luke even know they will never see a smile, they have learned to read him and love to just love on him, as well as our new little bundle Hannah.

*that we live near enough to my parents to have help with Luke, as they are the only other ones that can care for Luke without us there

* that Luke has not seen been to the ER for a long time and not yet this fall, PRAISE THE LORD.  Although currently he has a slight fever and super junky, we are praying that this is just a normal kid sickness and he will be over it with no further outside care needed.

*a husband who is fully hands on - he can fully take care of Luke and all his needs, he give the kids all their baths, he reads to the kids when he gets home and I usually need a minute to catch a breath, he takes care of me to make sure I am doing well enough to breastfeed Hannah and care for Luke and when I feel like I have done nothing all day assures me I have been productive as I have kept the kids fed and diapered and cared for.


*our home health nurses. There…I said it! They may drive me crazy from time to time, and they are the family that I never wanted to have, but family they are, and I am so thankful for the way that they love my son. I am thankful for the sleep that I am able to get because of them. I am thankful that I rarely am without a nurse.  I am thankful that they are working the holidays this year.  I wish we didn’t need them, but we do, and I am thankful for their commitment to our family. (derived from another mother's post)

*a church family that supports us and even know we are weird and germaphobic so don't let people touch Luke on Sunday morning they still talk to him and have gotten to know him and now Hannah.

*all the people who pray for Luke and us and continue to pray even when we are not in crisis mode and thing are just normal, our normal

*for Hannah, even though she didn't come in the manner I wanted, is here and healthy and such a cutie and a joy.

*for a house, food, clothing, internet, heating, a comfy bed.

*a God who has gotten me through everything so far with Luke and will be there with me forever.

Trach out!!

Luke is at it again.  When he gets mad he is pulling on his trach and twice yesterday he pulled it out.  Someone was right there each time and I got the new trach in with Luke only getting a little blueish.  I explained to him afterwards why it is not good for him to pull on his trach.  I don't know if he understands but he seems to understand so much else I thought I would give it a try.  When he is tired and mad it's like he just doesn't think.  I see him many times reach up to pull and then stop or just touch the trach and then pull his hand away fast which makes me think that he does know that he isn't supposed to do it.  It is like he just gets too tired and upset and he doesn't have the self control.

On the outside it may not seem like this upsets me.  At the time it does me no good to break down and get all sad about it because my boy's life is at stake, I am in survival mode.  I try not to dwell on the life and death of it to often because I feel if I do I may go into a depression about it.  And then the most upsetting this was the last time he was pulling a bit, just after Hannah was born, my nursing company had the audacity to call me up and insinuate that I was being a bad mom and just letting him pull on his trach and not do anything about it.  HELLO!  Think about it, who wants to see their kid turn blue and come close to death right before their eyes.  No one.  The first 3 times his trach came out it was on a nurses shift and not caught as quickly two of the times.  When this happened I called my ENT, pulmonlogist and wrote on the trach boards to get ideas.  I got a longer trach from the ENT, a "he's just 2 and not much you can do" from pulmonoloy, and some two ideas for ways to put things at night from the trach boards that I implemented.  Was there any advice from the nursing company, no.  Sorry for the rant, it still makes me mad.

Last night trying to get Hannah to sleep I started thinking more about Luke and his trach coming out and I cried.  It don't like to have to watch my boy every second to make sure he doesn't pull his airway out.  I don't like that he is so fragile but it is what it is and Luke is an awesome little boy.  If I could change it I would but I can't so I don't dwell often but pray that it will never come out when we are not taking it out for a change again.

And a cute picture of Luke who makes it all worth it.

Moebius Syndrome Holiday Hero

Luke is today's Moebius Syndrome Holiday Hero on the Many Faces of Moebius Syndrome site.  You can check it out here http://www.manyfacesofmoebiussyndrome.com/

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.

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.

Hannah - one month

Hannah is a month old!  She is 11 lbs 10 oz and a bundle of joy.   She loves to be held and will very often fuss unless she is being held.  Some good jiggling will keep her happy as well.  She follows voices and faces with her eyes and makes some very cute face.  She is very strong and has been holding her head up from what seems like the beginning but is pretty good at it now.  She pushes off with her legs and her arms with more force than you would expect and wiggles a lot while she is awake.

Hannah - 2 days old

Oh and did I mention she was noisy.  Luke was our first and he can't talk and it took him awhile to learn how to make a good amount of noise with the vent and since the vent was taken off doesn't make noise at all, with his mouth that is, he is really good at noise making with toys.  So we generally were used to a quite baby that would could hear breathe all the time through the vent.  Well dear Miss Hannah has some good lungs and knows how to use them.  She can really squawk and wail as well as squeak and grunt.  She is very noisy and lately it seems she is doing more "talking" to us and calling for us as well as the rest of the fussing.  Luke is not bothered one bit by her wailing.  He will occasionally look at her now if she makes more talking type noises.

Hannah and Luke "playing" together

Hannah is now sleeping in large chunks at night.  Hooray!  She still has trouble getting to sleep about half the nights but once asleep she does great.

So one month into being parents of two kids we are doing pretty good.  We still don't have time for much of anything but we expected that with two small children.

Luke working on standing

A family picture.

Fall and Winter 2009 – 7 to 11 months

Okay just to warn you this is a long post but is separated by month.

September – 7 months


Luke went to GR for an EEG and MRI and some other appointments at the end of September. Luke started with an arm hug (blood pressure) at the Nephrology office. His blood pressure was fine and they decided to keep him off the medicine but still to closely monitor. Very good news!!

We checked into the hospital for the MRI because he needed to be up in the Peds ICU when he got his EEG because of his vent. Luke was put under general anesthesia for the MRI because he is on a vent. He was wheeled into the MRI on time and and it was one of the smoothest moving procedures that I have been witness to. We were busier than busy when we first got there because Luke needed a different trach to go into the MRI since the one he usually wears has metal in it (Neo Bivona Flextend). The new trach did not have a flex end (Shiley) and thus was right against his neck and in his neck rolls. It was hard to keep them vent on and when you put it back on you had to move his little neck rolls. Poor dude. They put his normal trach back in while he was still sedated and that was much better. The anesthesia and MRI went smoothly for Luke and he seemed fine. He was a little restless that night, but who can blame him with everything going on, and the doctors decided to start the EEG right after them MRI even though the sedation was still in him. We were supposed to wait until Tuesday morning to start the EEG. We started hearing we were leaving on Tuesday instead of Wednesday. I of course freaked because I had a pulmonology appointment on Wednesday afternoon that was very hard to get. And this would give us the problem of having to be in the Runcci house with Luke overnight again because we didn't want to go home and come back for the appointment, way to much driving (3.5 hours one way). So I called Kevin and he brought the crib and humidifier with him. On Tuesday morning when it seemed for sure we were leaving that afternoon I called pulmonology and God was working, we were able to get an appointment for Tuesday after the Cystic Fibrosis clinic. So we may have to wait awhile because the clinic usually runs late but we would get to head home on Tuesday evening!!!
Pulmonology said we were doing great! We are going change his rate to 8 (down from 20) during the day next week and then in two weeks we will call them and let them know how Luke is doing. Assuming Luke is doing well we will take him off the backup rate during the day all together! They said it is usually three months on the Pressure Control and CPAP before turning him down more. However, we will see them in two months and discuss our options then. I am thinking Luke man will be doing fine and we will continue lowering settings then. They also decreased his dose of the only medicine he is taking all the time! We will stay on this dose through flu and RSV season though.

And great news! No Grand Rapids trips in October! Our first month with no trips. We have two November appointment days where we fit all our appointments!

In late September Luke's MRI results came back as normal which is good. This means there is no evidence of seizure activity, the fluid collections he had as a newborn are gone and that the nerves are present they are just not functioning correctly. In early November we finally got word about the EEG which showed no seizures and everything as normal.

Luke has been doing lots better with his gross motor skills. He has never really been behind in fine motor skills especially with his hands. Luke now holds his head up and sits up with just a lit bit of help. And today he even sat on my lap facing me with no help. However, I can't get him to sit up by himself when he is not on my lap. He is now pushing up with his hands when on his tummy instead of lifting his head totally with his back muscles or however he was doing it. He has even rolled from his back to his stomach (with the bar braces still on his feet) except for one arm. He can't seem to get that bottom arm around by himself and he yelps for help when he gets too frustrated. He is also very good at moving around by bending his legs and pushing his bar on the ground and the lifting his but up and moving his upper body around. Luke is still getting help from physical, occupational and speech/feeding therapists which is good. He is still signing but isn't full tilt with it yet and some days is all about signing for things and other times not. He does babble with his hands like some babies babble with sound. Even with the trach Luke does make sounds that are really cute but he has now added frustrated grunting to the mix. He has so many things to be frustrated with I don't blame him. He does sign and vocalize when he is not being fed fast enough for him which we like because then we know what he wants. Luke is over 17 pounds and is 26 inches long. Sometimes I look at him and he just looks so big. All in all Luke is doing very well and is a fun cute little guy that seems to steal hearts wherever we go.

October – 8 months

October started with a trip to Grand Rapids of all things. Instead of getting a month off, we made a unplanned visit to get Luke's g-button replaced. The valve on Luke's g-button we use to feed him broke and he every time you put his feeding tube in our out he was loosing a lot of stomach fluid that contains important nutrients and this is very very messy. He now has a Mic-Key button (18Fr 1.7cm for those who want to know) that we can replace ourselves (and have replaced many times). This feeding tube on this button locks as well which is nice. However, the valve is open when you are feeding Luke so that instead of things only going in they can go in and out and out out out the top as we have found out lately. No leaking stomach juices though.

October also started a long couple months of sickness for Luke. :( Luke had been very "junky" (has lots of secretions out of his mouth and nose and from his trach) lately and the pulmonologist had us take him into the ER for an x-ray and culture. I thanked God that his lungs were clear clear clear and he only had an upper respiratory infection. No x-ray needed but a culture was taken from his trach secreations and in 48 hours we would know if he had something more serious. He was also put on increased Atrovent and Pulmicort, two medicines to help him keep his lungs clear. Luke seemed not to be too bothered by all this and was still fighting sleep at bedtime and naptimes.

As I wrote notes and updates about Luke on Luke's CarePage many people asked "How is Emily?" So this is what I wrote. “I am doing well. I thank God for the outlook he gives me and my ability to just roll with the flow more than I ever used to. There are so many parents I talk to who are really scared and worried about procedures and come ask me about them because Luke has had them. I don't remember feeling that scared or worried. I don't want to sound like bragging or like I am better than anyone else. I just think God (and thank him) has given me this peace about things. I am one of those who questions questions questions and I still do that. But there were a lot of things with Luke that I just accepted and accept and keep moving. His trach and g-button surgery were not huge worrysome events for me (Or maybe I am just forgetting my worry) but I just feel okay with things going on with Luke. I may wish they were different or hope things move faster with healing than they are but generally God has just let me be with who Luke is.

I am a little in your face about washing your hands before touching Luke and washing all his things. I am working in baby steps to be better about this. I am doing a lot of praying and handing over again and again my worries of Luke getting sick or really sick to God. My biggest struggle right now may be having people in my house all the time. I know I need them and they are great nurses but it wears on you to have someone in your house everyday.

So far I am not going stir crazy about getting out of the house. I think I may be a closet homebody. I struggle when I am away from Luke for any length of time and at the same time struggle to want more free time.”

Now, almost 2 years later, I am getting a lot better about the germaphobia things. I am lots better in our house but still am pretty careful with Luke when we are out in public.

November – 9 months

November started with Luke is doing better, not back to normal things were looking in the right direction. I had a tough first week mentally with Luke still being sick and earlier that week he didn't seem to be getting any better and all the doctors were telling me was to keep doing what we were doing and that it could take 8 weeks. Yes I said 8 weeks for Luke to get back to normal. I am not a patient person but dealing with Luke's medical issues has definitely helped me be more patient. However, by the end of the week I was better and Luke was getting better. He was sitting up really well and propping with his arms while sitting and on his tummy. Another sign he was getting better was that he was willing to do tummy time for the first time in a few weeks ago without throwing a fit. Luke is more alert to people and things and is exploring more of his environment. He even discovered that his vent tubes can be a toy when he had dropped all his other toys. He grabbed onto his vent tubes and was shaking them. It was a portion that was up higher and so he didn't actually pull them off but it was pretty funny. Also, during this time he started to pull his vent tubes off and hold them in his hand, sometimes making it so that the air coming out of the tubes was blowing on his face.

This week Luke goes to the orthopedic doctor and his Ponsetti brace wearing hours went from 23 hours to 12 hours a day!! It was great to see his little feet at last, and he gained freedom he hadn’t seen in 6 months.


Luke's recovery was short lived and we were in the ER on Saturday and then again on Sunday night with Luke on 1.5L of oxygen (way high for him) and needing lots of suctioning. We ended up being transferred down to the Children's Hospital in Grand Rapids by ambulance on Monday morning. Our local hospital will not take pediatric vent patients so it wasn't even an option to stay and be admitted there. In the ambulance, for the first time Luke put his arms up for me to pick him up and it was very hard for me because I couldn't pick him up as we were driving down the road and he was all strapped in. Poor baby. This was our first major sickness outside the NICU and because of that we needed to be admitted. We found out Luke had tracheitis (an inflamed trachea), like bronchitis but up farther in the trachea instead of down in the bronchial tubes. Luke has had tracheitis since and we are able to treat it at home. While we were in the hospital our pulmonologist even told us that once we figure out how Luke responded to medicine then she was fine treating him at home. By Tuesday Luke was much better but the docs wanted to keep us in till Wednesday morning to make sure Luke stayed well on 24 hours of meds that we would go home on. This trip gained us a lot of Luke experience. We learned a lot about him and I learned that there needs to be two full time people down with Luke. My mom helped a lot but she worked during the day and I didn't sleep well enough in Luke's room at night to take care of him 24/7. I don't feel comfortable with Luke in the hosptial, even the PICU, and nurses who do not know him not in the room and monitoring only his stats by screen. Especially at that time Luke needed suctioning and other things usually before his stats really showed it. So I did not and will not leave him alone in the hospital. Luke also started making noise again and “talking” to us. He had not done this in awhile since his trachea was inflamed and we were happy about him being on the road to recovery for real this time.


As Luke got better he started rolling from his tummy to his back all by himself. We also saw the geneticist to make sure Luke didn't have anything in addition to Moebius. Our opthomologist still worried that we had something in addition since the Moebius people he had dealt with did not have the problems Luke did with breathing. Well the geneticist said he just had Moebius, that all his symptoms fit within the Moebius Spectrum. She also said she believed that we didn't have but may a 1-2% higher chance of having another Moebius child than the general public. Yeah! (We not have Hannah, who does not have Moebius.)


Luke has his first Thanksgiving over at my parents house with lot of family and friends to entertain and love on him. He had lots of fun and was very warn out by the end of the day.


I always planned on babywearing, carrying your baby in a wrap or sling, and I started putting Luke in the Moby wrap with the vent on my back or sitting next to me. He loved it and I loved having him close. It also helped him calm down and sleep during a lot of the holiday festivities when he was over stimulated.



December – 10 months

Luke took his first visit to the dentist, who actually got a look in his mouth! He told us to come back for a cleaning when Luke could open his mouth more and would allow him to get in. This hasn't happened yet and I he may need to be put under if someone really wants to clean his teeth. I am hoping that the oral motor and sensory therapy we are doing will allow us to take him to the dentist next year.


We had some problems with Luke's tummy this month. One day he became very lethargic and his button got tight. By the end of the day he was so bad that we took him to the ER. The ER docs called the surgeons who put the button in and they gave instructions through the ER doc and Kevin and I took his button out and a volcano of stomach juices and ickyness came out. We put the button back in and cleaned it up and Luke instantly became his normal self again. They said that sometimes with a Nissen (this makes it so food and liquids can't go up the esophagus easily) it is hard to remove air and pressure can build up especially if something irritated the stomach. So, once the pressure was relieved he was as good as normal. Here we had another Luke experience under our belts. Things never got this bad but many times in the following months we removed the button and released pressure and let things drain. We are not truly sure what caused this but after a few months it seemed to go away and it hasn't been a problem since.


Luke also started having these weird episodes at night where he would continually high pressure. Usually he was alseep but obviously uncomfortable. Holding him would help for maybe 30 seconds and nothing seemed to really make the high pressuring stop. Luke having a high pressure is like him breathing out really hard, or a big sigh may do it. In this case he was obviously not aware. We didn't know what was going on but his stats and everything else seemed fine. Very weird.


Luke saw the neurodevelopmental team again and they thought he was doing well and progressing along nicely. He was not where he needed to be for his age but he was always making progress which was really good they said.


Luke experienced his first Christmas with more family and friends. The whole Calhoon clan even came up for New Year's to meet Luke and of course they fell in love with him.



January – 11 months

A month with lots of doctor visits. At pulmonlogy (the lung doctor) we got answers and changes. Luke is weaning full force again. He had stopped weaning when he got sick in the fall and I was very anxious to get moving again. He was on a backup rate of 12 during the day (20 is where he started and he had to get to 8 to go to the next level of weaning) for 2 weeks and then we would do 8 for 2 weeks and then call to talk about the next step. Luke was teething and had a lot of secretions because he just doesn't swallow well enough and I was afraid that would slow things down but fortunately it did not.

Luke secretions were a bit thicker and a little on the yellow side so they did a trach culture to see what is growing and we will know the results Monday. My dad thought the thicker could just be all the dry car air that is blowing through as it super heats the frigid temps. Luke had been downstate 2 times the week before. As time has went on we have noticed that Luke's secretions are very sensitive to the weather and his environment (car vs. house).

Luke was still having some episodes at night where he couldn't catch his breath and more but we couldn't figure out what they were. The pulmonologist had an immediate answer for us... Reflux. Some stuff goes a little but up from his stomach (can't go far because he has a Nissian which doesn't let things go up from his stomach) and triggers the Vagus nerve which also has a branch by the lungs and triggers bronchial spasms (go nurse Keri who was right on about these) in preparation for the aspiration it thinks is coming, but does not. Luke was put on Zantac but we were told it could take up to 8 weeks to really be effective. This was a relief as these episodes were weird. However, looking back I am not sure it was really reflux. Whatever it was he seemed to just grow out of it because the Zantac didn't seem to really change anything.

We are also working on taking a feeding out and so Luke will be to 6 feedings a day. After that we started adding puree foods to Luke's diet, you can read more about this in my blogs about Luke's blenderized real food diet.

At the ophthalmologist office Luke got a lower prescription on his glasses and they thought he was doing really well. He does not have any corneal sensation which worries the doctor. This means things can touch and possible scratch his eye and he does not even know it.

When we went to pick up the glasses I had a momentary freak out moment as the optometrist put some alien green glasses on him. I said "no thank you" can you just put the new lenses in the frames he has. So thankfully we left with a cute Luke in white glasses.

Luke was quite the chunk. He was 21 lbs. 4 oz. and 27 inches.

Hannah and Luke

Until a few days ago Luke basically ignored Hannah, even her loud crying very near him.  But in the past few days he has been pointing to her and signing "baby" more.  When we were going through letters the other day he was telling me some things that start with the letter we were on and when we got to "H" he pointed to Hannah.  We have been telling him Hannah's name by signing and "H" and jiggling it like we sign an "L" for Luke and jiggle it.  

Today he took off his HME and threw it into the bassinet things she was sleeping in.  I am not sure if this was purposeful or by accident but pretty funny.  Things haven't been all good.  The changes in our household have been apparent in negative ways as Luke has pulled his trach out twice in since Hannah has come home.  We have also had some long trying periods of time outs due to trach pulling.

Generally things are going well.  I still have helpers to lift Luke so we will really see what happens when it becomes 1 adult/parent to 2 kids in a few weeks.

Luke's Story – 3 ½ to 7 months old – First Summer

Luke's first months home were busy and full of adjustments. Luke came home on May 20^th and we had a busy summer ahead of us. We loved being able to be in the same place as Luke all the time. We did have to get used to being confined to one area of the house with Luke because of all the machines he was attached to. At some point we got ourselves together and had a regular set up with his vent and suction in the living room and just moved the pulse ox and apnea monitor when we moved him. Still this only afforded us really two places to be with Luke. We did get him loaded up onto his Kid-kart (a stroller with a lot of carrying capacity for his vent, suction, vent battery and monitors) and took him outside a few times for a walk around the yard. He fell asleep the first time out but the next time he was awake and right away liked to touch trees and look at everything. We live in a swamp (a forested wetland) and there is lots of nature to see. Luke still loves to touch leaves, needles and bark and constantly signs for more when we are outside.

Between Luke's appointments for casting to correct his clubbed feet every week and seeing our other 9 specialists we were in Grand Rapids (GR) at least once a week and two months after being home we were there three times in seven days with a night of no nursing in the middle. It was a pretty crazy summer. Grand Rapids for us is 3.5 to 4 hours away depending on stops to change diapers and other things. Luke did great and was a pretty mellow go with the flow baby which was awesome! He did get fussy sometimes which worried me but then my mom reminded me that he is a baby and babies fuss.

We saw the pulmonologist for this first time about a month after coming home. I was pretty nervous because I had been having a hard time effectively communicating with her in the NICU and I was pretty set on starting to wean Luke off the vent as I thought he was doing wonderfully. The pulmonologist said they like to wait for two months of being home and stable before weaning but allowed Luke's PEEP to go from 6 to 5 on that first visit. We communicated wonderfully and I was feeling good about our future relationship with this pulmonologist.

In June Luke also saw the Neruodevelopment team which consisted of a physical therapist (PT), Occupational Therapist (OT), speech therapist, nurse, social worker, and a doctor. It was a long appointment but they gave us some good ideas about how to help Luke get strong enough to hold his head up on his own. (Luke was 4 ½ months at this point). We also were getting the process started to get into the Early On program with the school system and get a PT and OT to come into our house and do therapy with Luke. We were working off of the PT and OT suggestions from the NICU and were excited about the possibility of help on a regular basis. We ended up with an OT, who did some PT as well, coming about once a week. We had PT 1-2 times per month and speech therapy and vision therapy each once a month. I liked all the therapy because it helped Luke get used to other people, gave me new ideas for therapy and kept me more accountable to work with Luke.

At the end of June Luke had a GI bug and a possibility of some seizures that the nurses had been seeing. We had and still do have nursing 12 hours every night. Neruodevelopment scheduled an EEG for one of the next times when we were down in GR. He didn't have any more seizure activity before the EEG and the EEG came out normal. You don't always see seizures on the studies but the doctors still decided to wait and see if he had more before treating with medicine. The doctors were reluctant to use seizure medicine because it can be a long term medicine once a child is put on it. I was okay with this as I am not a medicine person and Luke had so much other medical intervention I hesitate to add more.

Luke is very “talkative” as he has learned to make noise over then vent. He really has only one or two tones but we love to hear it. It is very cute. It is also a way to judge how he feels because when he gets sick and doesn't feel as well he doesn't make as much noise. Since he doesn't have facial expression this was a good indicator for us when he was little. Since being taken off the vent during the day he doesn't make noise. With the vent he had something to push against to make the noise and with just the trach that isn't there. We miss the noise but not the vent.

Luke LOVES to look at his hands. He is amazed by them and he does all sorts of things with his fingers. He pinches his thumb and first finger together and is just really cute about it. He likes to play with and bat around his cloth blocks and other toys in his crib as well as his mobile.

At the beginning of July Luke had his first blue episode at home. I woke up when the nurse called me down. Luke had turned blue and she has used the ambu bag to bring him back. By the time I got there he was very pasty and pale but awake and alert. He fell asleep shortly afterwards for about 15 minutes and then woke up ready to go like nothing had happened. I called the pulmonologist to let them know and they wanted us to go the ER to have him checked out. They did x-rays and blood work and found nothing. I think Luke just got some water down his tubes. In the hospital he had a lot of episodes where he turned blue and his stats dropped but we got him back fast and easily. We couldn't conclusively prove it but were pretty sure there was too much water from the humidifier in his vent tubing that would build up and flow down into his lungs sometimes. In the hospital we had notes on his crib to keep his vent tubes flat with no places to collect water to try to prevent this. We also turned the temperature down on his humidifier so the difference between the air and tubes would be less and thus less condensation would happen.

Also, during this same time a nurse saw another seizure which we were going to talk to the neurologist about when we saw him a few days later. And Luke had a head cold as we were pulling yellow/green stuff out of his nose. Thankfully this stayed out of his lungs.

When we saw the Neurologist they wanted us to get a 24 EEG and a MRI to try to catch a seizure and see what was really going on. Getting an MRI would mean Luke would need to be sedated and a different trach would have to be put in because his current trach has metal in it. We would do the MRI and EEG in the same trip and spend a couple of days in the PICU at DeVoss Children's Hospital. We needed to be in the PICU (Pediatric ICU) because Luke is on a vent and thus considered fragile. These were scheduled for September.

By the middle of July we were in the normal swing of things again and got his third tooth! Luke is now able to sit up (with help) and hold his own head up. We are still working on the head control when he is on his tummy though. His hand control gets better and better all the time and he is really into shaking toys right now. He figured out that he can make his mobile move by shaking the rings we have dangling from a line across his crib and through the mobile. All this shaking and noise makes it easier to tell what he is doing when you are not right in the room with him. He has fallen asleep with his arm in the rings and was even moving them in his sleep.

A bad thing that happened was that we lost our 3 days a week nurse. This was a large portion of our nursing and took us totally off guard. It happened right before she had 3 out of 4 days on. There were a lot of not so nice phone calls and some lost sleep but a nurse already with our nursing company stepped up to fill in, temporarily at first but then she fell in love with Luke and decided to stay and is still with us :)

At the end of July Luke was finally done with his every week castings and his Achilles tendons were clipped and casts were put on for a final three weeks of casts. During his castings Luke had started with plain plaster casts, which is normal for castings to correct clubbed feet. However, Luke spent his days banging his casts together and broke through them so had to get them reinforced with fiberglass. The fun thing about this was that he got to get a different color cast every time. The tendon clipping was met with lots of crying and as much soothing by me as I could do and still have them be able to do the procedure. After all the fuss he was asleep before they were done casting. After three weeks the casts were cut off for the final time and Luke was free. Well almost free, he now had sandals attached with a bar that turned his feet out. He will wear the sandals and bar 23 hours a day with only an hour break for at least three months. The first day with theses on was very trying and I have never had Luke cry so much. It was very hard for me to go through but fortunately I had my mom to help me out that day and she helped a LOT.

The casts came off just in time for his baptism which was his first trip to church. We had Luke on a look but don't touch plan at church, and he still is. Yeah maybe I am a little crazy but there are a lot of people handshaking, eating, coughing, ect... at church and then exchanging it with everyone else. Luke was serenaded with a baptism song by my mom's drum group and he was baptized by my dad and our pastor.

Luke's July visit to the pulmonologist went really well. I was prepared to have to ask to have him start weaning and the doctor came in with a plan in place to start weaning Luke the next day! We were going to start by lowering his back up breath rate by two every two weeks. Also the nutritionist, who I thought should have increased Luke's food at the last visit came in with an increase of food at this visit. So good all the way around! Through all this I was pumping breastmilk for Luke. So some days all I felt like I dealt with was food, either pumping it or feeding Luke.

Luke's first visit to the ophthalmologist gained him a pair of glasses at just 6 months old. His Moebius Syndrome lends him to have crossed eyes which is compounded by finding out he is far-sighted and far-sightedness lends itself to having crossed eyes as well. The far-sightedness is not from Moebius Syndrome but is genetic and from my mother, who had glasses at 11 months. Luke got the cutest little white framed glasses. Thankfully they were made out of a silicon with polycarbonate lenses so basically baby proof. And he looks so cute in them. He doesn't pull them off his face and in time he started putting them back on his face correctly when they accidentally came off. However, when upset he will grab at them and pull them off, but he usually tries to put them back on soon afterwards.

Our first summer with Luke was quite eventful and at the end Luke was down to 10 on his breath rate, had new glasses, done with casting and onto the Ponsetti brace (bar and sandals), holding his head up, and just being an all around cute baby.

So I just remembered some more things about that time for Luke.  First, he started signing!!  I think his first sign was "milk" and he did "diaper" and "suction" pretty soon thereafter.  We started teaching Luke sign since he can't talk and between the trach and Moebius Syndrome facial paresis we were pretty sure it would be awhile.  Currently Luke is very talkative with his sign and he babbles and makes up his own signs.

Also, after Luke was done with all his surgeries they found he had high blood pressure.  The Nephrologist's working theory was that the high blood pressure was due to some acute damage to the kidneys from his umbilical catheter that was places at birth and in for a few days.  He was put on high blood pressure medication and his blood pressures were monitored at home by nurses and every time we could get to their office when we were in GR we got a blood pressure.

Luke is a big brother

Hannah was born on August 3rd making Luke a big brother.  Here Luke is pointing to her nose.  He has done fairly well with her so far but is mainly ignoring her I think.  He does like to count her fingers though.

Latest Sleep Study Results

Luke had another sleep study in July that showed he had significant central sleep apnea.  Central sleep apnea is usually found in people with neurological conditions, which Moebius Syndrome is and it doesn't really sound like it can be "cured" per say like obstructive sleep apnea can  by just removing tonsils or adenoids or something.  So this means Luke needs to be on the ventilator while sleeping for the foreseeable future.  Disappointing to hear but it is the best for Luke.  We did change his vent and oxygen settings, not better or worse just different.  He is now on a breath rate of 20 with a pressure control of 20 (we have been at 10-12 here in the past).  We didn't change the PEEP at 6 and the pressure support at 10.  He is on less oxygen, 0.3L instead of 0.6L.  Right now we are waiting for the results of a over night pulse ox download and a venus blood gas (to look at CO2 levels) and if they turn out good we will repeat the sleep study in 3-4 months and see if things are improving with age.   The new vent settings are doing really good things for Luke right now as the volumes of air going in and out of his lungs has doubled, a very good thing.  So I pray that Luke would grow out of this, if that is possible or God would heal him of it and he could get off the vent.  My feeling right now is that we have the vent and thus trach right now to take care of the sleep apnea.  I don't know all that much about central sleep apnea and all the ins and outs and what is really means for Luke but I am sure I am going to learn more over the next couple of months.

Pictures!

So everyone wants to see pictures of the little guy, so here he is.

Luke at 2 years old

I originally started this blog to start with Luke's story from the beginning.  However, I think I may always be catching up, so I decided to start posting more up to date info. 

So what is Luke up to right now...

Breathing:
Luke is currently vent and oxygen free while he is awake.  He is using the vent while taking naps and sleeping.  We have been weaning off the vent during the day since Fall of 2009 with time off the vent starting in July 2010.  (I am thinking to do a separate post of how we have been weaning).   In October or November 2010 Luke was off the vent all day and starting to try being off the vent for one nap a day.  We scheduled a sleep study for the end of January 2011 to determine if Luke was ready and how fast if he was we could wean him off the vent at night.  Well the sleep study did not go so well.  Luke had been needing oxygen during the day for quite a few months (1/8 to 1/4) and it seemed like in the last month it was increasing.  The sleep study showed that he wasn't blowing off his CO2 at night (his CO2 levels should be 35-45 and they were in the 60s to 80s) and so his vent settings while sleeping were increased and he was on mandatory 0.6 L of oxygen while sleeping as well as being put on the vent for all naps.  His breath support was raised to 26, his pressure control to 12 and his PEEP to 6.  This was disapointing as we wanted to wean but he was obviously not ready.  The good thing out of this was that Luke started the day fresh and was able to come off oxygen during the day within days after the nighttime and nap vent changes and was being suctioned less as well.  Yeah!  We went back a month later, in February, to make sure the new settings were working (we also had blood gases done) and ended up turning up the backup rate to 30 breaths per minute which took his nighttime CO2 readings down into the high 40s and low 50s for the night.  They decided to keep him there and so far so good.  We got back in July for another sleep study to see how well Luke does at night without his vent support and then how much vent/oxygen support will he need at night. 

He does like to pull on his trach and vent tubes which is not good at all.  He has decannulated himself (pulled out his trach) three times since November and two times he was totally unresponsive and it took awhile to bring him back.  He is not so bad during the day but at night and with the vent on his is not good at all.  So we are trying some methods, two sets of socks on his hands right now and we have elbow immobilizers ordered.  This is not something I like to do to him but it is LOTS better than seeing him not breathing and blue.  His alarm settings on his vent and O2 monitor are turned up now and everyone seems to be more alert with him at night.

Moving:
Luke is now scooting and crawling!!!  He started scotting at the begining of this month and just in the past week has started crawling on his hands and both knees.  It is great to have him more mobile and he defeinly enjoys it.  He hasn't gotten into too much yet but I am having to back off with my super cleanlieness, which is a good thing.

Communicating:
Luke knows over 50 signs and likes to sign.  However, he is not really good at actually requesting things.  So we are on a mission with him to make him request the things he wants.  This has been going good with a relatively small amount of tantrums.  He has been requesting me to sing wheels on the bus a lot lately which right now I say yes most of the time but if he keeps it up I may be saying no more often.

Eating:
Luke is still eating through his g-tube.  We have had to backoff on his calories a bit since he was gaining too much weight but he is evening out now.  We will be starting a Talk Tools Oral Motor Study for Moebius Kids in June.  I am really excited for Luke.  This program is great and the evaluation gave me so much hope for Luke being able to swallow and eat and talk hopefully in the next couple of years.  He has a lot of strengthening and teaching of how to move everything but being in this study and using these methods are going to take him far. :)

In general:
Luke is a pretty happy guy and loves to look outside, soon it will be warm enough to go for walks on a regular basis.  He LOVES books.  He is now able to flip pages by himself and so can read them even if mom and dad do not have time to read to him.  He will look at books all day if you let him.  He knows his letters, colors, numbers, and shapes.  He is addicted to "Baby Signing Time" and "Signing Time" and is really good at requesting the videos or music to be played.  He is going to be a big brother at the beginning of August and I am hoping things go well as he will not be the king of the house anymore and I do not think he will like that.

So there is what Luke is up to as a 2 year old little boy.

Luke's story - g-tube to going home

I get nervous and concerned about things that really aren't that big of a deal compared to other stuff going on at the time. And for me the things that I was most concerned about for his g-tube surgery was that they would put an actual tube in and not the button like I had discussed with the doctor. I didn't think I would see the surgeon before the surgery and I considered putting a note on Luke to put the button in. I did not end up putting the note on him but made sure that it was specified when I signed the release for surgery. Kevin was not with me before the surgery, or he would have probably put a stop to my weird worries way before I did myself. He arrived just before Luke got out of surgery which was nice to be there together to see the little guy. During the surgery a fellow NICU family who I had gotten to know a little and I knew their brother from college let me be part of their little lunch and friend gathering while I waited. I was very thankful for this as they are a great family and have some fun friends.

So Luke came out of surgery looking very out of it and not so great and was very wiggly which seemed to me like he was uncomfortable and in pain, which any mother hates to see. Although, in the pictures we have it almost looks like he is smiling (although he can't really smile with his facial paresis). He was very uncomfortable and with me not wanting Versed for sedation after the bad blue episodes that happened after his trach surgery he was only on pain meds. We ended up having to cover his incubator, which we never do and put him in a “cave” to help him settle down and rest. Kevin and the nurses pried me away saying he would be resting for awhile and Kevin and I went to dinner.

They say a little issue with his large interesting while they were doing the surgery which they are watching. They are thinking maybe the antibiotics for the infection are messing with his gut flora and causing a little issue. This turned out to be nothing and I didn't even remember it until I had went back and read my notes.

Also, Luke was not not peeing after the surgery and so they may have to give him something to help him get rid of the fluid.

Two days after surgery the doctors said he was ready to try CPAP again and were allowing him an hour at least once a day but it could have been more. Well he had a bad breathing episode on his hour on CPAP. Just when we had visitors and Luke was in my arms he started turning blue. Ahhhh! We got him back in bed and back to normal oxygen levels and soon after he was his wiggly self and seemed normal which was good but still a little disconcerning that he would have a random episode.

Three days after surgery Luke was up to full feedings of breastmilk which seems to be going through the g-button and through his system well and all is good there. Yeah!

However, at this point Luke's time on CPAP was not going well and I was getting discouraged and praying that he would figure the breathing thing out well enough to get off the ventilator.

About a week after Luke's g-tube surgery was started really talking about going home and getting things lined up for Luke in terms of nursing, medical supplies ordered and all sorts of stuff. I was also be encouraged to take a trip back home (3.5 hours away). I was very uneasy about leaving Luke for 48 hours or any more than over night and was not handling it well. I knew I did need to get home and start working on getting things ready for Luke to come home but to leave him was pretty unthinkable.

Luke has been recovering well from his two surgeries and infection that all happened in less than two weeks. The big concentration was to get Luke weaned down to the least amount of breathing help possible. Things were not going great. His trial times on CPAP were going well some times and not so great other times. I don't remember excatly but I think we started with 1 hr on CPAP a 2-3 times a day, evenly spaced and then 2 or 3 hours on CPAP twice a day was next then 4 hours. We wanted to go home without the vent as things were a lot easier without the vent but things were not looking that great for that to happen.

About 10 days after surgery Luke was not gaining enough weight and so a dietician came and wanted to fortify my milk so Luke would be getting more calories. They would basically put some high calorie formula in with my breastmilk. And they said if after a few days this wasn't enough to help him gain weight then they would add more. I was really not liking this but I didn't know what else to do because I saw the numbers and he was not gaining weight, so I agreed. Luke started gaining weight well after he was put on this fortifier and 14 days later he was taken off. And you will read later, it was actually that it was taking him so much energy to breathe that he was not gaining weight. Once he vent settings were changed he started gaining tons of weight and was able to be taken off the formula. There is more about this in Luke's g-tube and feeding history so that is all I will say about this here.

Luke is on CPAP for 3 hours twice a day about 2 weeks after his g-tube surgery (March 18^th) and he moved to 4 hours on CPAP twice a day on March 19^th and on March 21^st he is moved to 6 hours on the CPAP twice a day (that's half the day!!!!). They were closely monitoring his CO2 levels because they seem to be his biggest problem. Luke is not on oxygen and keeps his oxygen levels up very nicely. However, he breaths fast and shallow and does not blow off the CO2 that he need to . We are thinking this is due to the low muscle tone which is caused by his having Moebius Syndrome. His CO2 levels were staying in acceptable levels during this time, they were stellar but they were okay especially for weaning. He seemed to be working a little harder to breath during when he was on CPAP but it didn't seem to phase him in his actions. Our prayers were, and still are, for him to take deeper and slower breaths.

There is still no real improvement on his secretions and we are not sure if he is swallowing that much, we know he does a little but we keep hoping for more. More swallowing would mean less secretions and suctioning for Luke. We are still suctioning him from his trach as well. We hope he will be able to manage his lung secretions better as his lungs get stronger. However, the vent itself creates secretions by blowing air into his airways and irritating the airways a bit.

Luke is a lot more active at this point and playing with some cloth blocks, a mirror and some other toys we have in his crib. It is nice to see him more active and without all the tubes in his face I think it really helps.

On March 23^rd Luke moved to CPAP all the time. He is on a PEEP of 8 and needs to get down to a PEEP of 5 before he can be taken of CPAP. He is still not gaining weight as much as we would like and this is still concerning so a couple of days later he is put back on the ventilator at night. The doctors are thinking he is using too much energy to breathe on CPAP and so putting him on the ventilator at night will help him to retain more calories and thus gain weight. The pulmonologist instigated this and were going to come again to see if they could figure out why Luke is breathing so fast (but as I mentioned before the only thing they come up with is his low tone).

During this time Luke moved to a new, and hopefully quieter, nursery. The last nursery he was in had a lot of loud ventilating units and since Luke has a big boy crib you can't just shut the lid of the incubator and drown out the noise like the other babies. The new room seems quieter and the noisiest thing is a full term baby who actually cries. However, during the next month the nosier ventilator units follow us and the room gets nosier again. Thankfully Luke is is a corner bed though. This was a big step because it did mean leaving the nurses we knew as nurses here usually work in one or two nurseries and we moved to a nursery not connected to the one we were in.

On March 25^th Luke was moved to new vent settings (I wish I had written them down) and I saw an immediate change in his breathing. He was breathing slower for longer periods of time and slower than I had maybe ever seen him breathe. The pulmonologist said we still had a ways to go before he was on vent settings he could go home on but as he gets bigger his lungs will get stronger and the vent settings can be turned down. As Luke started gaining weight when put back on the vent it is a good sign that he was just using too much energy to breathe and that things are going better for him with the new settings. We don't like to see settings go up but I do like to see my baby doing better.

During this time Kevin, my parents and I are being trained on how to take care of Luke and his trach. We practiced changing a trach on a doll (that we all suggested had the wrong sized trach for the size of its opening) and Kevin as the calmest one was the one who got to change Luke's trach first. I was next up and was glad to have it over and have one under my belt. It is scary but 2 years later and many many trach changes later it is not scary but just routine. I must say that are trainer was not stellar and actually gave us the wrong trach to put in Luke. We learned our lesson and always check now. Learn from the nurses you have, I think they were the greatest teachers for me. They were more than willing to show me how to do things and let me jump in where I felt comfortable and talked me through new things very well. The nurses do this all the time and the trainer we had just trains to the nurses know the tricks and tips for all the care.

Luke started received Albuterol which is a common medicine given to vent kids to help keep things good in his airways. I forget exactly what they do right now but I think this one helps to keep his airways open and keep the secretions down a bit. Well Albuterol did not sit well with Luke. He got all red and extremely agitated. I knew something wasn't right and so called the resident. Unfortunately the resident on call was new and didn't know Luke very well and was being busy with other things going on in the NICU so things were not getting done fast. However, my nurse was great and kept calling her to at least get some orders to do blood work. Finally she got the orders and nothing looked amiss. Kevin arrived that weekend and figured out that it was the Albuterol. So they moved him to Atrovent, which he still uses today.

March 25^th the pulmonologist seemed to think he probably had a long way to go before getting to vent settings that he could go home on. However, on March 29^th Luke was on vent settings that he could go home on. Yeah! We were still praying that God will heal his lungs miraculously and Luke would not need to vent to go home. However, not that Luke was on stable vent settings we could start the going home process with the ventilator. They were still activlty weaning Luke but at some point they would stop so we could make sure all was good with his settings before he went home. Luke needed to be stable for 2 weeks or thereabouts on the same vent settings and then he could move onto the vent he would use at home. He would then need to be stable for 2 weeks on the home vent to be cleared to go home. And while it looked good on this front there were still a lot of obstacles to overcome to go home. We needed to find nursing care that could take care of Luke while we slept, need to be trained on Luke's vents, get all our medical supplies ordered and to the house, as well as putting in new electrical circuits so that all Luke's equipment would not blow a fuse or something. On a vent and trach Luke would need 24 supervision. We were told we were getting 12 hours per day and advised to take it at night. I agreed with that recommendation as I wanted to be awake when Luke was awake and enjoy my baby. However, I was warned that this was the hardest step and for us it was.

Also by the end of March Luke was gaining enough weight to be able to come off the formula supplement. Another yeah!

So April seemed to be about getting Luke on the lowest but stable vent settings and there were many changes. April 1^st he moved from a PIP (the pressure he gets when he takes a breath) of 20 down to 17. He was put on 20 previously because his CO2 had be raising from 39-40 to 46. The goal is to keep his CO2 levels between 35 and 45. During the night his CO2 was in the 20s and his pH was high so they put him on 17. He seemed to be breathing at the same rate on both so it didin't seem to phase him to move to less help.

Luke was put on PIP of 16 from 17 early the next morning because he his blood gas had a high pH and low CO2. At 9 am blood gas had a higher pH still but in the normal of the CO2 (35). The 3am gas April 3^rd was normal for both pH and CO2 (43) and is still holding strong. We were thinking that theses were probably be the vent settings he would go home on.

On April 6^th they moved Luke to lower vent settings, the lowest they would go before CPAP. I think it was something like a PIP of 16, a PEEP of 6 and a backup rate of around 20. By April 10^th Luke was moved to a vent settings where he was doing even more of the work although I am not sure what this was but he was doing okay. He had been losing some weight and so we asked for a food increase and moved him up to 85 ml (around 3 oz) of breastmilk every 3 hours. The next day Luke was put on higher vent settings because he was working so hard and he was going to stay on those for 24 hours or so and then be put back on the vent settings we were going to plan to go home with. Which were a backup rate of 20 with pressure control for the backup rate breaths at 16 (the PIP, pressure control10 plus a PEEP of 6 for 16 total) and a pressure support for his other breaths at 17 (pressure support 11 plus the PEEP of 6) and a PEEP of 6. The backup rate breaths also control his insipitratory time at 0.4. I know this is more settings than I usually mention but I thought since I knew these all from the orders I would write them out. Oh and his home vent is an LTV 1150. And at this point, no oxygen.

During all this Luke is still trying to be a little baby. We worked on tummy time and are working to get him moving his head side to side while he is on his tummy. He is getting there but sometimes gets stuck in the middle. He is also trying to roll over. He gets up on his side and really looks like he is trying but just can't figure it out. He plays with some cloth blocks and other baby ring type toys and loves to look at himself in the mirror. He will even bring the mirror up really close to his face. He is able to reach for and grab toys and the therapist were pleased that he kept making progress. And towards the end of April he started batting at his mobile. The physical therapist even gave us a list of activities to do on our own and at home. This was great as I love concrete lists. We finally brought his swing to the NICU and he LOVES it. He gets mad when you take him out to feed him or diaper him.

We are still working on setting up home nursing which is really slow. At the NICU there are discharge nurses which will set up your home nursing, getting supplies and your initial doctor appointments. However, maybe its just my control freak or maybe because things were just going too slow and I really wanted to go home but I took over calling the nursing companies myself. After that I realized that even if it was going faster it made sense to talk to these companies and people myself since I was the one who had to deal with them for the foreseeable future and, at least for me, I don't do well with middle men. So I started making calls and trying to get things going in a good direction which finally happened after talking to a number of companies. I would like to write a separate blog about how to go home from the NICU so look for that in the future.

Then we had a vent mixup which taught me very clearly to go with my instincts. I had been home for a few days and when Kevin and I got back to the NICU Luke had a old style ventilator. We were told that they vents were in short supply and the vent Luke was on was one that did a lot of complex things and since Luke was using simple settings he would be fine with an older style and the other vent went to a different baby. I didn't like it one bit and freaked out. Kevin worked on calming me down. That weekend I did notice that Luke seemed to be working harder to breathe and it was just feeding my displeasure. Well when talking to a respitory therapist that I trusted and really liked (they are not all created equal so get to know the good ones) about Luke's vent settings, old and new (I wanted more info even if this didn't happen), we discovered that the new vent Luke was on was not giving him the same support but giving him much less. This vent was giving him pressure support (PIP) only with the 20 breaths of the backup rate. When he breathes over the backup rate which Luke does it just matches the 20 breaths up with 20 of Luke's own. However, the vent settings Luke was stable on were giving him support with EVERY breath. This may not be a big leap for someone breathing at a normal rate, under 40 breaths per minute (bpm), but Luke breathed at that time from 70-100 bpm. So there was a lot less support. I was very worried about leaving him for any length of time again and had a new heightened awareness to know all the details about Luke, more than I already did. I was also scared that this could set us back, but fortunately it did not. So since they were out of ventilators and Luke was planning on going home they brought up one of the hospital’s home vents for him to be on. I thought this was a good plan since it would help to establish that Luke is stable on a home vent.

During April Luke started to switch his days and nights a bit and seemed to be up almost all night and sleep for much of the morning. I wasn't a fan and hoped that he would figure things out but figured if not in the NICU we could at home where night was quieter and less eventful.

And then Luke started to have these weird desaturations and some turning pale and blue. We tried suctioning and changing his trach and usually had to end up bagging him and giving him some oxygen to get him back to normal oxygen saturations. We were really racking our brains to think of what it could be as we couldn’t figure out a trigger. One nurse thought it could be the new vent and the way it was ventilating Luke but thought to wait a few more days and see but it didn't really make sense to me. However, I started to notice a pattern that it usually happened when Luke was being moved. What we figured out (with doctors not really wanted to say for sure) was that the humidifier that is attached to Luke's vent to keep his airways hot and moist, something our noses would so but since Luke's air is going directly into his lungs he needs help with that, was producing too much water, or rainout, and it was sitting in his vent tubes. When Luke was moved the water was sloshing into his lungs and basically he was aspirating. Ahhhh, scary. And with all that water in there it is harder to move air through the tubes and thus harder for him to breathe and would explain the oxygen levels not being as good. So we put notes on Luke's crib to always keep his vent tubes flat, with not valleys for water to collect. This helped a lot. However, he did have an episode at home that I think was because of too much water in his tubes as well. But he hasn't had one of these episodes in over a year. We are very vigilant about emptying the vent tubes of water and we purposely leave a loop at the end farthest from Luke to collect the water so we can drain it without getting near Luke's lungs.

Luke broke his first tooth in April, yes that is right he got a tooth at 2 ½ months old. So maybe some of his fussiness could be attributed to that.

I had my first vent discharge meeting in the middle of April. This is basically a meeting with my doctors and coordinators at the NICU and the nursing company, medical supply company, and respiratory therapist (RT) back home. I got frustrated because the RT/suppy company wanted me to come home to do vent training but seemed like it would be a day her and a day there. I don't like to travel home and leave my baby and no one seemed to understand that it wasn't just a 30 minute drive and that I would have to leave my baby for days each time and I didn't even have a car with me and so would need to coordinate that. The social worker even asked if I didn't trust the nurses in the NICU and I was like no I just don't want to leave my baby. What mother wants to leave their 2 month old baby for days at a time. Hello people! Well we did get it arranged and ended up doing the vent training in one chunk I think over two days.



Luke was put on a multivitamin because his Hemoglobin was on the low end and they didn't want him to become anemic. Not my favorite option as normal breast fed babies don't get multivitamins but I decided to choose my battles and leave this one alone.

At the end of April we finally got nursing set up. We had 6, 12 hour days covered and they company said that they would take turns covering the 7^th day until someone was found. So our go home date was set for May 13^th!!!!!!

After being gone for a few days for vent training I came back to Luke moving and doing even more with his hands and legs. He was even starting to put his thumb in his mouth and lifted his head just a bit for me during tummy time. It was a great day back!

Things were on track to leave on Wednesday, May 13^th (they like to discharge you in the middle of the week so they give you a few days until the weekend in-case something happens) and then 15 minutes before the final discharge meeting the Friday before I got a call from the nursing company to tell me their 3 day a week nurse had dropped out and taken another job. I was stunned and numb and I went back to the nursery where my parents were and cried. I managed to pull myself together for the discharge meeting but things were not looking good and I was desperate to find another nurse and go home. In talking with the nursing company early the next week they had someone set up to interview in the middle of the week and at that point they could get me 4 days a week with who they had. I knew it would be hard to work with only 4 days. I figured that if the 3 days were on the weekends and one weekday then we could handle it. It would mean sleeping when Kevin was home in the afternoons, evenings and on the weekends and having my parents help me out one day a week. But even with that schedule I would most likely still be seeing Kevin more that I was not and on a regular basis and we would be home!!!! So my campaign started to convince the doctors to discharge me. Luke had 4 trained caregivers, which is unheard of, and all my nurses could testify that I was fully capable of Luke's care and so were Kevin and my parents. We were there a lot and could handle it between the 4 of us. This ended up dividing the neonatologist but on Friday, May 15^th the head neonatologist (who was on my side) came in the to nursery and grilled me on who was going to help and how much nursing I did have and my comfort level and then told me they had okayed me to be discharged. I was estatic!!! I then went to call Kevin and my parents and tell them the good news. We were going home the next Wednesday, May 20^th!!!! And God blessed us by providing full 7 day a week nursing later that morning. I was on cloud nine! But then so many things had to actually happen and Luke had to not have any weirdness in the next few days.

Luke has clubbed feet and a pediatric orthopedic doctor had been coming to see Luke and was going to use the Ponsetti method (which my mom had of course researched and found to be the best) to correct his clubbed feet. This method involved a series of castings that would hold his feet a little more turned out with new casts every week for around 6 weeks and then if needed the Achilles tendons would be clipped and Luke would be in casts for three weeks strait and then he would get shoes and a bar to wear starting with 23 hours a day and moving to 12 hours a day till he was around three. They started casting in the NICU just before Luke was scheduled to go home. They don't do it while in the NICU usually because the heels are used to draw blood gases from and so need to be exposed. However, with our false go home Luke got a week of casts and then a week with no casts and then the casts were put on again right before we went home. (His feet look really good now.)

Things went well and we went home on May 20^th, 2009. It is an anniversary I still remember and have marked on my calendar. I think the whole day was surreal to me. I was pretty tense and nervous and was a little snippy, sorry Kevin. We probably looked like stooges trying to get Luke's things on his KidKart, (I would recommend a KidKart to anyone with vents and trachs and special needs. We love ours, it fit in our sedans, it puts together easily and is very adjustable, and it holds a lot of things that normal strollers can not handle.) getting Luke in the car (it took us two attempts) and getting him in the house. I think of it now and I just want to laugh and say what were you thinking. But it is kind of an experience thing when you figure out where things go best in the car and on the kart and how to move from car to building. Also, being so nervous about always having Luke hooked up at the beginning we were always trying to move with all the monitors connected so it was a juggling act to move two monitors, a vent and a baby in casts all in one movement. But we figured it out and it is very streamlined now, and he doesn't have so many monitors. More on this in another blog I want to write about going home and traveling.

So all of that in just 3 ½ months of Luke's life. Whew. It does settle down a bit after this, thankfully.