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.