Tubefeeding book

A book was just published by a tube feeder for Tubefeeders and their families.  It is a guide on all things tubefeeding.  Check it out here https://www.createspace.com/3811540.  I have followed the author on his blogs and in forums and he is all about sharing knowledge and making things easier for tubbies.

I am researching AAC programs (communication programs) for Apple and Android mobile devices.  Watch for a review blog coming soon.

Oh and here are some pictures of the cuties: no super new ones but cute ones.

I will eat anything!

6 month shot

Gotta love a good tractor.

Luke and his flip up book.

Making a tower.

"Wow mom look how high"

Reading with daddy.

Luke's doctor visit x5

So we had a big day yesterday visiting doctors. We ended up doing a lot of extra things. The day originally had two appointments and when his g-tube site was looking really bad and not getting better by normal methods I added a trip to the surgeon to take a look at it. We also had an order to get some blood for some allergy testing. I really don't like taking Luke to get blood drawn. He is a really hard draw, it usually involves at least 3 pokes and Luke in tears and me close to tears. I had put it off for months and finally decided since we were going down to do it at the lab that I like the best, probably because they deal with a LOT of children. So we are up to 4 places to stop now. And then on stop 2 we got a script for AFOs, braces for Luke's feet, that we needed to get molds taken of his feet to make which I decided to schedule since we were down there. Wow it was a big day. Thankfully Spectrum Health and DeVoss have consolidated many of their specialties and we only had two actually locations to go to.

So here's how it went:

Pedatric Seurgeos - stop 1

Luke has some nanstly looking granulation tisse around his g-tube site that just won't go away. The doc decided to try to cut some off and cautarize it with silver nitrate. They don't have nerve endings so this doesn't hurt. It is just hard to hold him down espeically when he doesn't like people looking at him and touching him when he thinks it is going to hurt. He did so well though that the doc cleaned the whole site up and it looks great! Onward....

So now I have to go through this building and two hospitals and into another office building (without going outside which is very nice in the winter). However, since we didn't come in time to park at the other building where we would be spending the next 3+ hours I was walking the kids and Kevin was moving the car. I don't like to be far away from the car in case we need extra, clothes, diapers, oxygen... So I had Hannah in the Boba carrier on my front, a large tool bag stuffed with kids thing over my shoulder and I was pushing the double stroller with Luke in the front and the vent sitting in the 2nd seat with the suction hanging off the back and the oxygen, pulse ox and my purse shoved in the bottom. I am sure we were a site to see. But we made it with no incident and got to our next appointment at orthopedics....

Orthodicts - stop 2

When we were at neruodevelopment last they wanted to make sure someone looked at his hips since he wasn't walking yet to make sure they were okay. Our PT said he just needed to gain more strength in his hips. Since we were at ortho we asked the doc and she got his hips x-rayed and showed us that everything was doing well and since he has neuromuscular issues that it is probably just that and he needs some more time. She did prescribe AFOs which are braces to help him with stability in his ankles. When his ankles are more stable he will be able to work on getting his muscles strength and balancing in his upper legs, hips and core in order to stand better and walk.

Luke's clubbed feet are being corrected by the Ponsetti method and doing well. His left one is still way worse than the right. The right is I think about normal now. They left one has just the amount of range of motion that they want to see. Ponsetti (or his group because he has passed away) has changed their recommendations to keep the braces on at night until he is 4 years old and not just 3 years. Also, our doctor is changing practices and so we will get another doctor next time we go. Fortunately the new doctor does almost exclusively clubbed feet. Just the doctor for us.

I must say the new offices are great. They have couches!!!! and more room for our moving NICU to get in. We were comfortable and there we weren't moving the stroller around every time someone needed to move to a new place in the room.

Blood work - attempt #1

Kevin and I were not too hungry and so we decided to get the bloodwork done before his 1:00 p.m. appointment. Well I guess a lot of people thought this because we were there for 45 minutes and finally next in line and it was time to go to pulmonology. Pulmonology will not wait and since we were first after lunch were ready for us. Fortunalty the lab said they would put us back to the top of the cue when we came back.

Oh and during this time I had to feed Hannah. Looking around the room there were two empty seats and they had people leaning over the shared arm rests from other seats. Not a good place to nurse. So I decided to go to the pulmonlogy waiting room which is huge and was fairly empty. When I walked in and told the room coordination why I was there she offered me an empty office. Bonus! Hannah is VERY easily distracted while nursing and thus far had not nursed well in the car when we stopped to feed or change Luke because she was too busy watching Luke and Kevin. So I was happy for a quite, distraction free place to nurse.

Pulmonary - Stop 3

We had a good visit to pulmonlogy. We got a blood pressure for Luke for the first time in over a year I think. Luke HATES to have his blood pressure taken. He sees the machine and goes nuts. This kid is strong. He is flails so much the machine does not read and if it does get a reading he is usually so worked up that it is not accurate. He was sitting on my lap facing me which I thought was good. The nurse was going to annouce what she was doing and I shhed her and said to just slip it on. Kevin was great and brought Hannah over and we had Luke point out the ducks on Hannah's feet and her nose and all sorts of things. He made a little fuss when it squeezed but mainly we were good to go. Luke is growing well and now down on the 40% for weight and around the 11% for height which puts his height to weight ratio at a much better place, maybe around the 50%, I didn't look real close. But he used to be 98% or more. Yikes!

We are just keeping doing what we are doing lung wise for Luke. We will need to see a cardiologist to clear him for jaw surgery this summer and if his heart looks good we can think about weaning some of his oxygen at night. Right now he sits at 98-100% almost all night on the 0.3L of oxygen he is on. The doc is hesitant right now because they saw a dip to 86% oxygen which is not good and she said there are studies that show dips in oxygen being very hard on the heart. So I understood that and we will have to see.

Blood work - attempt #2 Stop 4

So after pulmonlogy we got right into the lab for blood work. Luke is a super hard poke and he really hadn't had a nap and it was after 2 p.m. and after all the visits I saw that this could not be good. Hannah was asleep in the carrier at this point and stayed asleep through the whole thing. Me moving around, leaning down, singing, all of it. We have found that Luke's feet are the best place to get blood from him but they always have to check arms first. Kevin was holding Luke his lab and another lady and I were working on holding him still. The lady who was taking blood we have seen before. She found what for Luke is a good vein in his right arm and as she was going in he jerked and we lost it. She dug around in that arm and tried the other and then went for the foot. She said next time she will only have to try one arm. Luke is super upset. I am trying to sing "Wheels on the Bus" the only acceptable song and the song that must be sung when something is going on that Luke does not like. He requests it if he knows something is coming. But we got it done. Allergy testing, CBC and blood gas. I forgot to call yesterday with the results and so I will have to do that today.

AFO fitting - Stop 5

Since we don't go down much and I didn't want an extra trip I squeezed our AFO fitting at 4 p.m. Luke was soooo not happy about it but the therapist doing the molds was great and fast. We will have to go back in a few weeks to pick them up and make sure they fit correctly.

The car ride home was pretty uneventful. Luke did not sleep, although he must have been exhausted, but he just sat and nicely looked out the window and was just a wonderful car rider. Hannah on the other had started to loose it. Her bedtime is around 7:30 p.m. and we were past that and she hadn't had any really good naps so she was really fussy. She was so tired and just wanted to sleep in her bed I think. Poor girl. She was also awake for most of the car ride back. Normally she is a good car sleeper but I think she was just too overtired to sleep.

We are recovering and Luke just played and played yesterday, I had a lot to do and a major poop incident from Hannah and so didn't have much time to play with him (and the time I did sit down to play he wanted to watch Signing Time). He was just fine playing by himself. I think he just wanted some time away from people after all the doctor visits.

So there you have it. A very long day but I getting a lot done.

Feeding Tube Awareness Week - Life with a feeding tube

Luke eats through a tube. He has never eaten orally and right now is not allowed to eat anything orally as we are not sure that his muscles and all the swallowing parts function. We do think he can swallow but as a three year old who has never practiced it would be dangerous to try as he could choke on his food or fluid could get all they way down into his lungs causing an infection and difficulty breathing. So we feed Luke through a tube. So what does that look like?

(click the pictures to see a bigger version)

Luke plays with toys while eating. We also encourage him to put an appropriate toy in his mouth to associate oral stimulation with eating.

This is a picture of the actual button that we feed him through.

We used to hold him and feed him. As babies are held to get nursed or bottle fed. We probably held him until he was 2 years old or so. Then we moved to the high chair. I have been trying to make his live as "normal" as possible within the limits of his medical issues. So he eats in a high chair. He usually doesn't eat when we do as it is hard to feed yourself and him at the same time, although it can be done. We are lucky that Luke doesn't have any digestive issues, he just isn't able to get food to his stomach so we help with that.

Luke is fed 5 meals a day. Right now I blend up his entire day's nutritional requirements and then divide it up in 5 equal parts. We have thought about making 3 bigger meals and 2 snacks but our lives our a little crazy and 5 equal meals is working right now. We feed Luke real food that you or I would eat (or maybe not, he eats beet and turnip greens, and is a very good disposal for nutritious veggies from our farm share that we don't really like or eat as much of). For more on his food go to these posts: Blenderized diets. I must say that the medical world of tube fed babies, children and adults in American seems to be centered on feeding tube fed people formula or some form of it. And yes some people have allergies or special requirements and they need this formula. But for the most part I really don't like that the medical professionals are so against feeding real food to tube fed kids. I have had my run ins with dietitians. I have found that it is easier for dietitians and others to calculate all their calories, fats, proteins, ect.. when they can just read it off a label and it is all neat and clean. I have had a conversation with a dietitian where I was asking a question about fluids and she basically told me that if I was using formula it would be she could give me an answer right away but she would have to have me submit to her Luke's blends of food so she could run them through her program. So I asked my pediatrician, which I should have in the first place, and he gave me an answer as he would for other kids. Luke is just another toddler. His food just arrives at his stomach a bit differently.

Okay so what does feeding with a feeding tube entail. Well you need to make sure you have enough supplies. If you don't have tubes that connect to the button that connects the outside world with his stomach then he can't eat. If you don't have a syringe to put on the tube, he can't eat. Also, you have to make sure the button that connects to his stomach is working and doesn't fall out. The hold the button is through is a constant open wound. Think about that, having a constant open wound. Before Luke was very mobile he had the best g-tube (even though it is a button that is what it is called) site the doctors had seen. Then he started crawling and standing and walking with his walker and it does not look good anymore. We are constantly watching it and it bleeds and oozes and there is a lot of extra skin growing. It can get infected so cleaning and constant care are a must.

One thing that is hard for us is that if you forget food, or are somewhere and aren't going to get back for dinner normally you would just pick up some food, either at a restaurant or grocery store. With Luke if you forget his food, you have to go back to get it, or get back to the house if you forgot it. We were on our way downstate and forgot it, thankfully my dad was able to go to our house, pick it up and then meet us halfway back home. We had left early thankfully so we were only a little late that day. There is a lot more planning ahead and awareness for meals for Luke.

Some pluses of eating with a tube...

you don't have to taste those icky nutritious things

you can eat while you sleep, although lately I am trying to not be feeding Luke when he sleeps

it's easy to eat a perfectly balanced diet

Kids are super curious which is good, I don't mind telling them about Luke and his tube and they usually think it is pretty interesting and sometimes cool. Parents get a little weird when their children stare or ask questions. To parents I would say if you see your child looking take that as a cue to ask questions yourself and you and your child will learn. I have heard other tubie parents say they have had some bad reactions from people. I haven't seen this and I am glad. It is a little odd and takes some explaining when someone wants to just give your child food (we are so protective and must look it because it has only happened once or twice to us) and you tell them they can't have it. You usually have to explain its not just you don't want them to have sweets it's that it is dangerous for them to have it.

Luke does get hungry, although not often, we feed him on a schedule and he really only complains and gets ansy when we are off the schedule by a lot. He knows his food and syringe and tube. He likes to watch the food move to go in.

Right now we expect Luke to eat one day. We are doing oral motor therapy to get his muscles working for when that day comes. We are also working on getting him tasting things off his finger and putting small amounts of food in the back of his mouth with a syringe to start training him to swallow it.

So there you have a little of life with Luke and his feeding tube. :)

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.

Luke's (breathing) story - post trach part 1

So here is more of Luke's story. I know it may not be grammatically correct but mom feel free to let me know and I can change things. I just wanted to get it out there.

Luke had his trach put in on February 23, 2009 at about three weeks of age. The night and day after his surgery he would stop breathing and turn blue and have to be brought back with an ambu bag. This happened a lot in a short period of time the day after the surgery in the afternoon. I finally figured out, after talking it through with the nurses, that it was probably the Versed which they were giving him to keep him still so he wouldn't knock anything lose. They gave him a dose just before the many episodes happened the afternoon after the surgery. They halved the last dose they gave him that evening and things got better. Luke has on his record now that Versed is something he is allergic to because I don't want to see my baby blue again. I remember not liking to see Luke turn blue and ambu bagged back but I don't remember being really super upset about it. I look back and notice a lot of things now that didn't rile me like I would have expected but I think it was God knowing we had a long journey ahead and to take things in stride. This is unusual for me so God was working pretty well with me through this. Oh I cried a lot through it all and had my breakdown moments but they were usually after the fact back in my room when I had time to think about things more.

A good thing was that we were seeing a lot of Luke's face which was really nice. The only tube he had now on his face was the feeding tube, which he learned to pull out very well in the next couple of weeks before his g-tube surgery. Luke also learned how to pull off his vent tubes just a couple of hours after surgery and could manage to get them off right in front of my eyes while I thought I was holding his hand and keeping things under control. Luke does have a personality and he seemed to be saying that he did NOT like this trach vent thing and they needed to go.

They started feeding him breastmilk again the day after surgery and by the 2^nd day after surgery he was back to his pre-surgery level of feedings. Luke has always been a great digester, I won't say eater because he doesn't “eat” things by mouth. The 2^nd day after surgery went much better all the way around for Luke as he was more himself, had no blue episodes and was moving all limbs around. I did get to hold him for his afternoon feeding which was awesome since I wasn't allowed to hold and cuddle him much as they were afraid that his trach would fall out. And my holdings were only for feedings and very supervised. They were nervous about us holding him because the trach can come out and since the tissue has not healed to accommodate the trach things could get bad and more surgery could be needed. There were two strings that were attached, I never did grasp exactly how, to pull things open and stable in case the trach did come out. Luke did loose one of the strings before the week was up. At a week the ENT comes to do the first trach change and make sure everything is okay.

So the thought was that once the trach was put in that Luke would be able to breathe unassisted. It seems that usually trachs are put in because of some issues with the airways and since our ENT didn't think he had any issues with his airways we didn't know what to expect but were hoping for the best and to be vent and CPAP free soon after the surgery. The 3^rd day out of surgery Luke tried CPAP and couldn't handle it so was put back on low vent settings (I don't remember what they were).

He also did a little spitting up so they decreased his feeds a little bit. I don't remember this but read it in my notes. I knew we were looking at a g-tube when he recovered from the trach surgery and don't really remember any feeding issues before that.

Luke was breathing short shallow breaths and fast if I remember correctly which is not so good. Slower deep breaths are the preferable way to breathe. Five days out of surgery Luke was on CPAP all day and breathing a little fast but holding his own. His trach stoma site was a little redder than it had been and the nurses said they would point it out the the ENT in the morning when he came.

So about a week after the trach surgery when I got to the NICU in the morning Luke was back on the vent and on antibiotics for an infection. A culture was out to the lab to see what the infection was. This was very disappointing and I was hoping for a fast recovery and back to CPAP and hopefully lower. However, little did I know, Luke would not be coming off the vent before going home and now, at 2 years old he is still on the vent at night and naps.

The culture turned out to be staff and they were already treating with the correct antibiotics so that was good. The antibiotics kicked in and Luke's vent settings were turned down twice in one day!

Luke first trach change went well and the ENT through things were going fine. They kept the trach size at 4.0 since Luke was on the vent. The ENT said a smaller trach could have leakage and then the vent would alarm unnecessarily and not be delivering its air efficiently. At this point we started things in motion for getting trained on all the care needed for a trach baby. I was now back to holding Luke whenever I wanted, which was mainly during feedings which was great.

And a new issue, high blood pressure. Luke has had high blood pressure it seems like always. The nurses comment on it but the doctors don't seem to concerned. The new resident mentioned it to the doctor and they ordered a kidney ultrasound for the next day. From what I gather, kidneys not functioning correctly can cause high blood pressure and they may not be functioning correctly due to the UVC line that was in his belly button when he was first born because they could not get an IV. The ultrasound didn't reveal any abnormalities in the kidneys so his high blood pressure was still a little bit of a mystery although they were still thinking the UVC line might have caused some damage afflicting the blood pressure.

So this turned out to be a busy day with the ENT and first trach change, high blood pressure issues, and the eye doctor. The pediatric eye doctor said Luke's eyes still had scratches but looked good enough to take him off his antibiotic for his eyes. Yeah!

A little over a week after trach surgery and after recovering a bit from a staff infection Luke started 3 hour trials on CPAP. He did well for most of his first few but started going downhill towards the end of them. It is a step in the right direction though.

Luke went for an upper GI to proceed the putting in of a g-tube the next day. Which is good because he took his feeding tube out twice during our trip to get the GI done. The upper GI revealed some aspiration and so the docs decided to do a Nissen Fundoplication as well. The Nissen keeps food from going up from Luke's stomach into his mouth and then down his airways. There is a lot of controversy around getting these done. I had no idea of the controversy at the time but Luke's seems to have turned out well and so far we have had no problems with it. I mentioned Luke's grabby hands to the surgeon and since Luke was a good sized baby he said he could put a button in right away and not a tube that hangs out. This was great new for me as I foresaw a lot less problems. Luke was also going to get a muscle biopsy done to rule out muscular dystrophy.

Around this time I had some down times about not being able to hold and cuddle my baby as much and a little about Luke's future. I didn't and still don't like to suction him and back then he really didn't like it. He has learned to deal somewhat now. I would rather be the one than some nurse that didn't care as much as I did though. What I didn't like is that with all the tubes and stuff it wasn't easy just to scoop Luke up and cuddle him when he cries. I do enjoy the ability to just scoop him up now and give him a good cuddle.

Luke's Story - Birth to Trach

Luke's breathing/respiratory story begins at Luke's beginning and as you will see things can and do change on a day to day and sometimes hour to hour basis.

Day 1: When Luke was born (by c-section) he squeaked a couple of times and then was not really breathing on his own. We knew something was most likely not right with Luke so there were neonatologists standing by. They intubated Luke and after a short look at him they whisked him away and put him on a ventilator. He was on “room air” which Kevin, my husband, told me was really good for being on a ventilator. Neither of us really knew what this meant but boy oh boy we would learn. Room air means that he is not on any supplemental oxygen, which is really good.

Day 2: Luke was doing well and they thought he was ready to breath without a ventilator the day after he was born but they wanted to give him an MRI first. Since you have to be still for an MRI they put babies under and they don't have the reflexes to breath on their own so he would need the vent for the MRI and they would take if off after the MRI was done. They wanted to do an MRI because they though he had a neurological disorder and they wanted to find out more and hopefully make a diagnosis with the help of the MRI. This was a huge time of unknowns. Remember this was in the first 48 hours of our experience with Luke and we had a full intervention birth after starting with a home birth plan. At this point they were not sure why he wasn't breathing on his own, Luke was a full term plus baby (41.5 weeks) and Luke was not sucking. Kevin and I do not remember if they had noticed the lack of facial expression yet.

Day 3: The MRI was scheduled for his second night and when we came to visit our sweet Luke in the morning he was on a nasal cannula (just oxygen through the nose). By the afternoon he was put on CPAP because he wasn’t breathing well enough on his own. CPAP for a baby entails putting a large prong thing in his nose that is attached to tubing which is attached to a setup that keeps Luke's airways open a little bit all the time and thus he doesn't have have to totally close and open his airways for every breath making it a little easier to breathe. I am not sure if he wasn't keeping his oxygen levels up or if it was that he had too high of CO2 levels. I am thinking CO2 because I don't remember Luke ever being on oxygen in the NICU (expect for right after surgeries and for a few brief moments here and there until he got sick in the fall of 2009). I don't remember what PEEP (positive something about airway pressure) he started on but I remember a lot of PEEP 6 and 5 for the time he was on CPAP. A PEEP of 5 is the lowest they will go on CPAP and the next step after a PEEP of 5 is a nasal cannula. Luke was getting breastmilk through a feeding tube in his mouth at this time and doing great with it.

Day 4: We got to hold Luke for the first time. Luke's ventilator and and umbilical catheter were removed and so Luke was ours for cuddling. The results of the MRI came back to say that all neurological parts where there but he did have two old subdermal (I think) hemorrhages from in the womb and that the blood would drain from those on its own. They didn't see these hemorrhages as explaining anything going on with Luke, breathing, sucking or anything. My note from this day said that Luke is getting better in not having so much mucus so they thought that he may be swallowing and that his motor functions were getting better. When Luke was born he was hypertonic or very stiff but sometime at some point he became hypotonic meaning he had really low tone and continues to have hypotonia. (We would later find that the servre low muscle tone is the most probable cause of his breathing issues.) The plan was to put Luke on nasal cannula the next day and we all expected great things out of him. We would then move from working on breathing issues to working on sucking and swallowing. (What was little known to us then was that Luke’s breathing would be and still is a long road to travel.) Luke is doing well digesting breastmilk and if he continues he will get his IV out. Luke was a good eater then and is still a good eater or should I say digester since food starts in his stomach.

Day 5: The doctors decided to wait one more day until trying Luke on nasal cannula. Not sure of the reason.

Day 6: Luke was doing well on the CPAP and so on Luke's 6^th day they put him on the nasal cannula around two in the afternoon, I am not sure how much oxygen though. He also got his IV out because he is doing well and getting all his nutrition from breastmilk. We had now seen the neurologist and geneticist and they said that we may never find a diagnosis for Luke but they would look because with a diagnosis you can plan and know what the future may hold. We actually figured out the diagnosis after our friend Leslie, who has Moebius, heard Luke's story and said she thought he had Moebius Syndrome, but more on this later.

Day 7: In the early morning of day 6 Luke was put back on CPAP because his CO2 levels were too high. This was Luke's problem throughout the process of weaning to nasal cannula and probably still is. He doesn't have much trouble keeping the oxygen up but he has a hard time keeping his CO2 levels down to the levels they should be at. At this point we have no diagnosis and if we had one it would give us a better idea of what is doing on with Luke. The doctors had a couple of ideas why he wasn't doing well on nasal cannula (I don't remember what they were just knew this from a note I wrote back then). We will try nasal cannula tomorrow and Luke will get a couple of more chances before they decide to put a trach in so that they can send him home. I remember them telling me at some point that staying on CPAP long term is not good for the structure and health of Luke's upper airway and so if he needs help long term they would need to put a trach in.

Day 8: (February 12, 2009) We gave him a day of rest and on his 7^th day in the morning of day 8 he was put back on nasal cannula. He lasted for a couple of hours till early afternoon when his CO2 levels were too high and then was back on CPAP. The ear, nose and throat doctor (ENT) was scheduled to come the next day and talk to us about how to help Luke breath and swallow. I am sure this was disappointing at the time for us as my note for that day started with “Today was a day of ups and downs”. I don't really remember much about my feelings then. I look back and it seems like I was taking this all so well and I would say I continue to take all of Luke's medical issues and ups and downs in stride and fairly well. I attribute this to God. There is no other way I could function and continue to be a mother, wife, daughter, friend through all of this. Our Pastor and his wife came to see us 3 ½ hours away from our home this day and it was one of the high points of the day. Luke has been with us for a week now and oh what a week it has been.

The next day, a Friday, the ENT said that Luke would get one more try to move to nasal cannula and if he didn't last then a tracheotomy was the next step. He said that if Luke could not make it on nasal cannula then he would likely need to be on CPAP long term and that it was bad for the nose and throat passages to have CPAP through his nose long term. Also Luke would not be able to go home on CPAP through the nose but would through a tracheotomy. He also said that the tracheotomy tube may bypass what is causing the problem and he may be able to breathe without the help of CPAP after the tracheotomy. I was thinking this was kind of fast and shouldn't we be doing more tests and I still sometimes think this. But back then there was a lot going on and I didn't have the energy or know to explore all of these things. The ENT did mention that he would put a scope down and look at the structure of everything involved in breathing when he did the tracheotomy. I didn't know what else to do at this point and this made sense. I was just hoping and praying my son would be able to breathe long term on the the nasal cannula.

On Sunday we were told that Luke would try his last chance at the nasal cannula on Monday. However, when Monday came they derided to wait because they heard some not so great lung sounds in the morning and instead turn him down from CPAP with a PEEP of 6 to a PEEP of 5. I was disappointed but figured his chances would be even better at making it the next day.

Luke did not last on nasal cannula on his last try. This was a hard thing for us to deal with. My son would be getting a tracheotomy. And not only a tracheotomy but most likely a g-button as well. Since no one had really seen him swallow, they didn't think with his neurological issues that he may ever swallow. They also thought that he may have aspiration issues and with the upcoming tracheotomy they decided a g-button would get food where it needed to go without the tubes down his throat or nose, which he was starting to pull out on a regular basis. During the nasal cannula trial Luke turned blue in my arms, very scary, and it was just after or during a feeding so the nurse had me lean him forward thinking he was aspiration and hoping leaning him forward would make it come out his mouth. I didn't write about this in my notes from back then but I think there was some milk or something that I saw filling up his mouth and then the turning blue. Well he got an x-ray to see if any got down in his lungs and thankfully it was clear. He would get an upper GI to make sure all his digestive track was physically there and in the right place but also see if he was aspirating so that if he was aspirating they would also give him a Nissen.

When looking at my notes it looked like they would explore his swallowing better after his trach was put in. They were thinking after the trach was in that he would not need ventilation and with no ventilation and no CPAP blowing air into his nose and mouth areas creating mucus from the irritation of the air constantly blowing that they could see what was really going on with normal secretions. This was huge, two major surgeries that were planned to happen within 7-10 days of each other. We would not be taking Luke home like a normal baby, but with a trach, g-tube and all the medical issues that come with it. And at this point I thought I would be going home a few weeks after the trach was put in (which would have been the case if not for the ventilator which you will hear about later). Luke slept most of the day after the failed nasal cannula trial which was good for me as I needed to try to regroup and take in all of this.

Luke has been alive for 14 days at this point and wow he has gone through a lot. I really see how much when I write it out like this. But there were good things going on in the mist of the disappointments with his breathing. He was moving more and it seemed that once food got into his stomach his digestive system worked very well, the proof was in the many many diapers.

I am not sure when it happened but I see in a note that on February 22, 2009 I wrote that our working diagnosis for Luke is Moebius Syndrome. In Luke's 2^nd week I know we had thought that Luke had Moebius and started asking doctors, who when we asked said they suspected but didn't know for sure. Once we mentioned the possibility of Moebius Syndrome they were supportive and I think the announcement in this note comes from us finally getting the neonationlogist to say it. The ophthalmologist suspected it first but didn't say anything till we did because he didn't want to tell us something before more doctors came to the same conclusions. I know that at least one of the doctors wanted to make sure it wasn't just birth trauma and would go away with time. What got us thinking was my parents talking to Leslie Dhaseleer, who has Moebius Syndrome. My parents had of course shared some of Luke's story with their churches so people generally knew what was going on. Leslie happened to be at church that first Sunday after Luke was born. She heard about Luke and came up to talk to my parents after church. She started asking them if Luke had certain symptoms and Luke had the symptoms she asked about but the congregation was not told about these things. My parents were blown away and asked how she knew this and she told them she thought Luke could have Moebius Syndrome. My parents talked to me and we started asking questions of the doctors and found out that it had been thought of, as I mentioned before, in some of the notes but nothing said to us yet. Having Moebius Syndrome was really not we wanted to hear but now we had a diagnosis, we had a place to start looking for solutions to some of Luke's issues, and a glimpse of what the future may hold. Leslie has become a great resource and friend and gotten us involved in the Moebius Syndrome Community. I feel blessed by God to have her in our lives and that we were able to figure out what Luke had and then have a immediate contact to a community of people who had Moebius or were parents of Moebius children.

On February 23, 2010, before he was a month old, Luke had a tracheotomy (to put a trach in) and broncosopy (to put a scope down Luke's airways to check their physical status). I am not sure how long we waited in the waiting room but it wasn't a short amount of time. The doctor came and talked to us as soon as it was over. He said that his airways looked good and clear and it did not look like Luke's tongue or any other part was interfering with his ability to move air. He did say that Luke's left vocal cord may be paralyzed. Luke was so little that the doctor did not want to give a for sure on the left vocal cord paralysis but said it was a possibility.

Luke looked pretty bad when we got to seen him. They had him on sedative and pain drugs and he was still pretty out of it for awhile. He had two strings that were attached to his trachea so that if his trach fell out they would be able to open his trachea up and stabilize his airways. He had these for a week before the tissue healed enough to be more stable. At this point he had an IV in his had with a splint on it to keep the IV in and laying right. This splint was a good club and throughout the time with the IV it was tough to keep Luke from clubbing himself with it. Luke was on IV fluids for two days before they put him on milk and took the IV out. They put the IV in his head for his next surgery and I liked it there much better. He has the use of his hands it was more out of the way and less in danger of coming out. Luke is a really hard poke and so putting the IV in again is not something anyone in the NICU wanted to do.

So that is Luke's story pre-trach. I will post more of his story later.

Luke's g-tube and feeding history Part 3 with a little bit of bloating and refulx

So in December some time Luke had a couple of things start to happen that we still don't really have explanations for but they are not happening anymore and didn't happen with that much frequency even when they were happening.

First, he would wake up at night high pressuring his vent by bronchial spams (his airways opening and closing or spasming).  When his vent high pressures it is because the vent is using more pressure that we would like to put air into Luke's lungs.  This usually happens when he is out of sync with the vent or crying, or purposely trying to get our attention by pushing air back against the vent.  Luke would not really be awake during the time.  His eyes may open but he was really really trying to be asleep and he was also arching his back and seemed to be very uncomfortable.  Holding him may help for a minute or two but that was all.  This first episode lasted hours.  It was not fun to watch as a mom who could do nothing.  The next night was fine though and I was hoping this was just a fluke.

A few days after this we also noticed that Luke's button got really tight and pretty quickly, it seemed like in the space of a couple of hours and the nurse didn't notice when she was feeding him in the morning but I noticed 3 hours later.  I just watched it but noticed that there was bright yellow bile coming up from his g-tube when we burped him before the feeding.  By that night there was some dark coffee grounds looks stuff coming out from around the stoma and sometimes in the feeding tube.  This was not too good but I didn't know what to do and at that point was hoping it would go away soon and I had just eaten something weird that had come through the breast milk to Luke.  Well the next day Luke was uncomfortable and lethargic.  By the time Kevin got home I was worried but we thought we would watch him for a bit more.  By this point lots of coffee grounds were coming from around the tube.  He was looking so uncomfortable and maybe it pain, it is hard to tell with a Moebius child who has no facial expression we decided to take him in.  His button was super tight and he seemed very bloated.  We called the surgeons who put the button in who agreed with taking him to the ER.  When we got there the ER doc ordered an x-ray to look at where things were and saw that there was some pocket of something by the tube.  He called the pediatric surgeons from DeVoss and over the phone they thought that the coffee grounds was dried blood and this would irritate the stomach and was likely what was bloating it and it is hard for Luke to get rid of excess air because he has a Nissen Fundoplication which pinches the top of his stomach so things can't go back up and possibly aspirate into his lungs.  They instructed us, Kevin and I, through the ER doc to take the button out and let things drain and then put the button back in.  I like to do as much as I can myself, some people don't want to be the bad guy but I would rather have someone who knows Luke and is comfortable with him and him with them to do stuff too him.  Also a lot of docs don't seem very comfortable with Luke because he is on a vent and they assume very fragile.  Also I am pretty go to and in your face.  So the ER doc was very happy to let us do it.  He was finally sleeping at this point which we liked because he wouldn't be so wiggly.  Well when we pulled that button out there was a mini volcano of coffee grounds and bile.  Luke's stomach immediately went back to a normal size and Luke woke up and started making noise and was his normal happy, playing self.  It was like we just turned a switch.  I was ecstatic that it was that easy and wished I could have done it from home.  The docs gave us a prescription for Zantac to help calm his stomach and sent us home with Malox, I think, until we could get the Zantac the next day.

I remember talking to maybe the pediatrician and I am not sure what other specialist about the night time episodes and the tummy bloating and not really getting any answers.   The next time we were at the pulmonologist (which may have been a month or two later) I ran the night episodes, as they were still happening, by the doc and she immediately said she thought it was reflux.  They thought that the food was coming up just enough to trigger the Vagus nerve which signaled reflux and protected the airways from aspiration by having bronchial spasms.  Even with the Nissen Fundoplication they thought that reflux just a little bit up could trigger the nerve.  I have also read a lot about Nissen Fundoplication that fail.  The episodes sometimes had a lot of suctioning and sometimes not.  The suctioning seemed to go more with the face that the spasms where creating the mucus than any food getting up there so I didn't think the Nissen Fundoplication had failed.  I also started making sure he was fed sitting up or at least with his trunk up and leaving him inclined for at least 20 minutes after each feeding.  We used towels to incline his crib since the nurses fed him in there twice a day. 

These reflux episodes can be minor to severe, I think all in all there were only 2-3 really sever episodes and maybe less than 10 minor ones.  However they usually lasted for an hour or more.  It was awful to watch and not be able to do anything.  Luke couldn't stop the spasms and they would wake him up and then the uncomfortableness of  reflux just sent him to a place where no person could sleep.

We continued to take Zantac and got an appointment to see the GI docs.  I was talking to the pediatrician about the reflux episodes, they weren't stopping and he offered to prescribe Prevacid.  I was wary and didn't want to because I had heard some. bad things about it from other blenderized diet parents.  However, when we saw the GI doc (which was in May and this all started around December) she could not say exactly what it was especially because the episodes were so few and far between.  She said reflux is difficult to concretely diagnose and she wondered if Luke just had a really sensitive stomach.  With all the big episodes, but I don't think so much of the small ones, I had been trying to find anything that could have triggered reflux or any of the reactions we were getting.   I had figured out that the big episodes were linked to him accidentally getting 30+ ml more in a feeding or being fed while laying flat.  The doc thought this supported the sensitive stomach but since we had recently had a bad episode she wanted to try Prevacid for a month and then no reflux meds and see how things went.  I agreed to the Prevacid after asking many questions and being assured that getting off it would be very easy if he did not have reflux but still not too hard with reflux (I had heard stories that once you started Prevacid it would be hard to wean a child off it).  Prevacid basically stops the acid production in your stomach which is a pretty major thing to do.  But for a month I would try it.  After a month we got off all medicine and we have not had any reflux or should I say "reflux" episodes in many months.  We will see the GI doctors in a month and hopefully that will be the last time.  I am hoping we were just blowing up out of proportion a normal baby digestive system getting used to the world thing. 

I was also trying to see if the stomach bloating/tight button episodes were correlated with the reflux episodes (I am a trained research scientist).  And for the reflux episodes I never wanted to test Luke by giving him way to much food or laying him flat to feed and seeing what happened because I didn't want to cause him hours of no sleep and pain at night.  It ended up that it didn't always happen after reflux episodes at night but also a couple days before a bad reflux episode so we determined that they were not directly tied together.

The bloating episodes were still going on through all of this.  Mainly in January and February I would say.  We pulled the button out and drained things once with good success.  We never got as much out but then we never let it get as far as the first time.  One time we pulled the g-tube out to drain in and then put it back in and two hours later he was bloated again.  After a couple of times in and out where it didn't make a difference we stopped taking it out when he was bloated, thinking we would only do it as a last resort.  We also worried that by taking it in and out often he would lose enzymes and nutrients he needed in his stomach.  The bloating episodes could come on in an hour or so and go away during a feeding or another time just as fast.  Sometimes they would be all day and sometimes just a few hours.  They were usually accompanied by bright yellow bile coming out of the g-tube when we were decompressing before feeding.  We never got answers to why this was happening.  Their best guess was that the button was irritating the inside of the stomach causing things to bleed and the blood was irritating the stomach which cause bloating. 

We are not on medicine for any of these issues and we haven't had a bloating or reflux night episode in months.  We thank God for this and continue on.  During this, in the middle of January I started introducing real food through Luke's g-tube.  By late February I stepped up the food big time and he has been doing great with the food.  I stopped pumping in June and ran out of breast milk in August and Luke has had no problem on all cow's milk.  I will do a separate post about Luke's blenderized diet even though this was going to be a feeding post, I realized it is a post all unto itself.