Surgery, what surgery... oh wait yeah I have these posts sticking out of my chin

So to update on Luke's jaw distraction surgery...
(it is another long one)

Saturday afternoon Luke fell asleep asleep, no tossing, no turning, he was out.  We were thrilled.  He slept for around 4 hours and woke up to a couple of  hours of washing his body, stoma sites, post sites and then eating.  He actually went back to sleep!  He slept pretty good for quite a few hours before having some restless sleep.  Sunday morning he woke up his normal self.  It was awesome!  He woke up and pointed to all the things I needed to remove, his elbow immobilizers, his pulse ox, his Ponsetti shoes.  He knows what goes on the in morning and he was making sure I knew, very cute.  I was so excited that I scared my mom when I cried happy tears on the phone.  She thought something bad had happened and I tried quickly to control my tears and let her know all was very well.

Sunday was busy.  I slept in the morning a little bummed to be leaving sitting up fun, playing with his toys and books Luke.  But I did need sleep.  I got back to Luke and found out that all the doctors had come to see him and he was hopefully headed to the stable vent unit that afternoon.  Yeah!  So we packed up and waited for the go ahead.  We moved up 2 floors and thankfully still had our wonderful arboretum view and then some.  When we got settled I went and got a massage from Nancy's (grandma) friend Dawn.  Thank you Dawn!  I am very tight and I should work on this.  Wow have I come a long way from my hockey playing, dance company days in college.  However, my mom found out that Luke loves to exercise so when he has his pins out we will see if he likes "New York City Ballet Workout".  It is low impact and hopefully I can get loosened up.  I am sure my knees would appreciate some more muscle support as well (my knees have been giving me lots of trouble).

Sunday night my parents and Hannah arrived.  I was so happy to see her and she was so confused to see me at the end of a long car ride in a weird place that she didn't even smile at me.  She had also just woken up from a nap.  However, she was very vocal about leaving me and it was good to cuddle her.  She did give Kevin (and maybe Luke sitting next to him) a big smile when we walked into Luke's room.  It was really hard to have her in the room as she wanted to get down and go all over but then still be in my arms as she missed me.  She was also getting over tired and so my parents took her to my Uncle's to spend the night with them.  It was very hard to leave her again but I knew it was best as there was no way Kevin and I could take care of Luke and have Hannah with us in the hospital/hotel room.  On Monday when I saw here she gave me a huge smile and came right to me.  She was dressed in a cute strawberry outfit and oh so cute!

Luke was feeling good all day on Sunday, sitting up most of the day, reading and playing with toys.  Very nice to see.  Sunday night/Monday morning was also full of poo!  Two blowouts that night.  The poo has been bad.  Antibiotics are not nice to digestive systems.  Luke is taking the antibiotics to prevent infection at the pin sites and due to the internal device.  We are done in two days but the poo is awful.  However, he slept some that night and woke up a happy little guy, once his poo was removed and he had a fresh bed, on Monday.

The residents from oral surgery came down on Monday morning and turned the posts and thus started the actual jaw distraction and movement.  It seemed too easy.  We have a quite large, purple (my favorite color) screwdriver looking thing that fits over his posts and there are instructions on which way to turn and that 1 turn = 0.5 mm.  We were instructed to turn 2x per day and they estimate around 20 days.  We will follow up next Monday to check the progress.  They also said that he could go home.  What? Really?  We can go home!  We were ecstatic!  We had planned to send Hannah home with Nancy to watch her at my parents house until we came home but now we could all be home.  It was too good to be true but it was real!  We got our discharge papers and prescription and after lots of packing and a few trips to the car were ready to go.

Luke got really excited to be out and was a good car rider, even sleeping some.  However, he became really junky, needing lots of trach suctioning, as soon as we left the hospital.  This is a lot of work and we are still working on figuring it out but are hoping he is just adjusting back to the non-hospital humid air.  We had one poop blow out on the way home but fortunately the car seat was saved by the extra chuks (pads to absorb liquids that have plastic on the underside so they don't leak on things) from the hospital that we put down.

We got home and Luke all situated.  My parents brought Hannah back all ready for bed and we got to rock and nurse.  We don't have night nursing for Luke until Thursday night so Kevin and I are still switching back and forth.  Nancy came back up with us and is helping wrangle Luke and Hannah and keeping Luke from falling on or banging his posts and keeping the posts away from Hannah's exploring hands.

We are still running on little sleep at awkward times and will be very happy to see nurse Keri on Thursday.  We are still trying to figure out how to keep Luke's posts safe, give everyone enough sleep, keep Hannah happy, keep the house running and figure out how much of Nancy's help I will need.

Luke seems like his normal self, he is even letting me wash his pin sites and turn his pins sometimes without someone holding his hands to prevent him from pulling out his trach.  He has learned to sign "mama" and other sights at his chin up around his nose to avoid the pins.  I was a little concerned he would bother the pins with his very exuberant signing but that smart little guy figured it out.  I am going to keep him contained in his high chair or with someone right next to him till the pins come out because I am so worried he will fall on them hard and do some real damage.  The risk of damage is much higher than the displeasure I have at confining him.  He didn't seem to mind today but it was only day1.  Luke had really low muscle tone and will often fall over, lean on things and rub his face on things and I do not want him to do that with the pins sticking out.  If he wasn't such low tone maybe it wouldn't be an issue but then there is Hannah.  She loves to pull his hair, his trach, anything he has out of his hands and I fear that she would think the pins are cool and pull them as well.  We were told pulling does not harm them (lots of force pushing would) but I don't want to test it out on Luke.

Also, Luke has been leaking around his trach at night (some of the air his vent is pushing into his lungs is moving around his trach and up through his mouth and nose instead of into his lung) and he has been breathing faster and shallower breaths.  I don't like this as shallow night time breathing with low volumes recorded by the vent leads over time to Luke building up CO2 and not doing as well.  The ENT is ordering a larger trach (which nurse Mike has been thinking Luke may need for awhile).  I am a little bummed because Luke has been making noises over his vent again (for the first time since maybe a year old) and I was thinking that he may vocalize with his passy muir, or similar, valve now that he has more room around his trach and realized that he can do it.  The ENT said the bigger trach may still allow him the room to do it but it may not as well.

Oh and I had this waking nightmare thought that I may have turned Luke's distraction pins the wrong way this evening but his awesome doctors (which allow me to e-mail them, thus a lot of their awesomeness) got back to me right away and said nothing bad will happen if I accidentally did move them backwards.  Yeah for not worrying but I will be really sure I am turning with the arrow from now on.

Thanks for...
Luke's surgery going really well
Luke bouncing back from surgery
getting to leave the hospital days earlier than we expected
having Nancy able to come stay with us
my parents watching Hannah and Hannah have a really good time
good doctors


So prayers for...
a good full recovery for Luke
that the distraction goes well and works
for Hannah to readjust and get through her fear of us leaving her
for us to get sleep
for our nurses not to get sick and be able to show up for their days starting Thursday
resolving the vent leaking issue
that we keep Luke's pins safe from bumping and harm and Luke happy in the process

Thanks for all your continued prayers and support!

Luke in PICU right after surgery, before his cheeks started swelling like a chipmunk.

Luke sleeping on the car ride home with his swollen cheeks.

Kevin said that Luke looked like a Saber-toothed Chipmunk :)  I love his sense of humor.

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.

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.

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.