Okay just to warn you this is a long post but is separated by month.
Luke went to GR for an EEG and MRI and some other appointments at the end of September. Luke started with an arm hug (blood pressure) at the Nephrology office. His blood pressure was fine and they decided to keep him off the medicine but still to closely monitor. Very good news!!
We checked into the hospital for the MRI because he needed to be up in the Peds ICU when he got his EEG because of his vent. Luke was put under general anesthesia for the MRI because he is on a vent. He was wheeled into the MRI on time and and it was one of the smoothest moving procedures that I have been witness to. We were busier than busy when we first got there because Luke needed a different trach to go into the MRI since the one he usually wears has metal in it (Neo Bivona Flextend). The new trach did not have a flex end (Shiley) and thus was right against his neck and in his neck rolls. It was hard to keep them vent on and when you put it back on you had to move his little neck rolls. Poor dude. They put his normal trach back in while he was still sedated and that was much better. The anesthesia and MRI went smoothly for Luke and he seemed fine. He was a little restless that night, but who can blame him with everything going on, and the doctors decided to start the EEG right after them MRI even though the sedation was still in him. We were supposed to wait until Tuesday morning to start the EEG. We started hearing we were leaving on Tuesday instead of Wednesday. I of course freaked because I had a pulmonology appointment on Wednesday afternoon that was very hard to get. And this would give us the problem of having to be in the Runcci house with Luke overnight again because we didn't want to go home and come back for the appointment, way to much driving (3.5 hours one way). So I called Kevin and he brought the crib and humidifier with him. On Tuesday morning when it seemed for sure we were leaving that afternoon I called pulmonology and God was working, we were able to get an appointment for Tuesday after the Cystic Fibrosis clinic. So we may have to wait awhile because the clinic usually runs late but we would get to head home on Tuesday evening!!!
Pulmonology said we were doing great! We are going change his rate to 8 (down from 20) during the day next week and then in two weeks we will call them and let them know how Luke is doing. Assuming Luke is doing well we will take him off the backup rate during the day all together! They said it is usually three months on the Pressure Control and CPAP before turning him down more. However, we will see them in two months and discuss our options then. I am thinking Luke man will be doing fine and we will continue lowering settings then. They also decreased his dose of the only medicine he is taking all the time! We will stay on this dose through flu and RSV season though.
And great news! No Grand Rapids trips in October! Our first month with no trips. We have two November appointment days where we fit all our appointments!
In late September Luke's MRI results came back as normal which is good. This means there is no evidence of seizure activity, the fluid collections he had as a newborn are gone and that the nerves are present they are just not functioning correctly. In early November we finally got word about the EEG which showed no seizures and everything as normal.
Luke has been doing lots better with his gross motor skills. He has never really been behind in fine motor skills especially with his hands. Luke now holds his head up and sits up with just a lit bit of help. And today he even sat on my lap facing me with no help. However, I can't get him to sit up by himself when he is not on my lap. He is now pushing up with his hands when on his tummy instead of lifting his head totally with his back muscles or however he was doing it. He has even rolled from his back to his stomach (with the bar braces still on his feet) except for one arm. He can't seem to get that bottom arm around by himself and he yelps for help when he gets too frustrated. He is also very good at moving around by bending his legs and pushing his bar on the ground and the lifting his but up and moving his upper body around. Luke is still getting help from physical, occupational and speech/feeding therapists which is good. He is still signing but isn't full tilt with it yet and some days is all about signing for things and other times not. He does babble with his hands like some babies babble with sound. Even with the trach Luke does make sounds that are really cute but he has now added frustrated grunting to the mix. He has so many things to be frustrated with I don't blame him. He does sign and vocalize when he is not being fed fast enough for him which we like because then we know what he wants. Luke is over 17 pounds and is 26 inches long. Sometimes I look at him and he just looks so big. All in all Luke is doing very well and is a fun cute little guy that seems to steal hearts wherever we go.
October – 8 months
October started with a trip to Grand Rapids of all things. Instead of getting a month off, we made a unplanned visit to get Luke's g-button replaced. The valve on Luke's g-button we use to feed him broke and he every time you put his feeding tube in our out he was loosing a lot of stomach fluid that contains important nutrients and this is very very messy. He now has a Mic-Key button (18Fr 1.7cm for those who want to know) that we can replace ourselves (and have replaced many times). This feeding tube on this button locks as well which is nice. However, the valve is open when you are feeding Luke so that instead of things only going in they can go in and out and out out out the top as we have found out lately. No leaking stomach juices though.
October also started a long couple months of sickness for Luke. :( Luke had been very "junky" (has lots of secretions out of his mouth and nose and from his trach) lately and the pulmonologist had us take him into the ER for an x-ray and culture. I thanked God that his lungs were clear clear clear and he only had an upper respiratory infection. No x-ray needed but a culture was taken from his trach secreations and in 48 hours we would know if he had something more serious. He was also put on increased Atrovent and Pulmicort, two medicines to help him keep his lungs clear. Luke seemed not to be too bothered by all this and was still fighting sleep at bedtime and naptimes.
As I wrote notes and updates about Luke on Luke's CarePage many people asked "How is Emily?" So this is what I wrote. “I am doing well. I thank God for the outlook he gives me and my ability to just roll with the flow more than I ever used to. There are so many parents I talk to who are really scared and worried about procedures and come ask me about them because Luke has had them. I don't remember feeling that scared or worried. I don't want to sound like bragging or like I am better than anyone else. I just think God (and thank him) has given me this peace about things. I am one of those who questions questions questions and I still do that. But there were a lot of things with Luke that I just accepted and accept and keep moving. His trach and g-button surgery were not huge worrysome events for me (Or maybe I am just forgetting my worry) but I just feel okay with things going on with Luke. I may wish they were different or hope things move faster with healing than they are but generally God has just let me be with who Luke is.
I am a little in your face about washing your hands before touching Luke and washing all his things. I am working in baby steps to be better about this. I am doing a lot of praying and handing over again and again my worries of Luke getting sick or really sick to God. My biggest struggle right now may be having people in my house all the time. I know I need them and they are great nurses but it wears on you to have someone in your house everyday.
So far I am not going stir crazy about getting out of the house. I think I may be a closet homebody. I struggle when I am away from Luke for any length of time and at the same time struggle to want more free time.”
Now, almost 2 years later, I am getting a lot better about the germaphobia things. I am lots better in our house but still am pretty careful with Luke when we are out in public.
November – 9 months
November started with Luke is doing better, not back to normal things were looking in the right direction. I had a tough first week mentally with Luke still being sick and earlier that week he didn't seem to be getting any better and all the doctors were telling me was to keep doing what we were doing and that it could take 8 weeks. Yes I said 8 weeks for Luke to get back to normal. I am not a patient person but dealing with Luke's medical issues has definitely helped me be more patient. However, by the end of the week I was better and Luke was getting better. He was sitting up really well and propping with his arms while sitting and on his tummy. Another sign he was getting better was that he was willing to do tummy time for the first time in a few weeks ago without throwing a fit. Luke is more alert to people and things and is exploring more of his environment. He even discovered that his vent tubes can be a toy when he had dropped all his other toys. He grabbed onto his vent tubes and was shaking them. It was a portion that was up higher and so he didn't actually pull them off but it was pretty funny. Also, during this time he started to pull his vent tubes off and hold them in his hand, sometimes making it so that the air coming out of the tubes was blowing on his face.
Luke's recovery was short lived and we were in the ER on Saturday and then again on Sunday night with Luke on 1.5L of oxygen (way high for him) and needing lots of suctioning. We ended up being transferred down to the Children's Hospital in Grand Rapids by ambulance on Monday morning. Our local hospital will not take pediatric vent patients so it wasn't even an option to stay and be admitted there. In the ambulance, for the first time Luke put his arms up for me to pick him up and it was very hard for me because I couldn't pick him up as we were driving down the road and he was all strapped in. Poor baby. This was our first major sickness outside the NICU and because of that we needed to be admitted. We found out Luke had tracheitis (an inflamed trachea), like bronchitis but up farther in the trachea instead of down in the bronchial tubes. Luke has had tracheitis since and we are able to treat it at home. While we were in the hospital our pulmonologist even told us that once we figure out how Luke responded to medicine then she was fine treating him at home. By Tuesday Luke was much better but the docs wanted to keep us in till Wednesday morning to make sure Luke stayed well on 24 hours of meds that we would go home on. This trip gained us a lot of Luke experience. We learned a lot about him and I learned that there needs to be two full time people down with Luke. My mom helped a lot but she worked during the day and I didn't sleep well enough in Luke's room at night to take care of him 24/7. I don't feel comfortable with Luke in the hosptial, even the PICU, and nurses who do not know him not in the room and monitoring only his stats by screen. Especially at that time Luke needed suctioning and other things usually before his stats really showed it. So I did not and will not leave him alone in the hospital. Luke also started making noise again and “talking” to us. He had not done this in awhile since his trachea was inflamed and we were happy about him being on the road to recovery for real this time.
As Luke got better he started rolling from his tummy to his back all by himself. We also saw the geneticist to make sure Luke didn't have anything in addition to Moebius. Our opthomologist still worried that we had something in addition since the Moebius people he had dealt with did not have the problems Luke did with breathing. Well the geneticist said he just had Moebius, that all his symptoms fit within the Moebius Spectrum. She also said she believed that we didn't have but may a 1-2% higher chance of having another Moebius child than the general public. Yeah! (We not have Hannah, who does not have Moebius.)
Luke has his first Thanksgiving over at my parents house with lot of family and friends to entertain and love on him. He had lots of fun and was very warn out by the end of the day.
I always planned on babywearing, carrying your baby in a wrap or sling, and I started putting Luke in the Moby wrap with the vent on my back or sitting next to me. He loved it and I loved having him close. It also helped him calm down and sleep during a lot of the holiday festivities when he was over stimulated.
December – 10 months
Luke took his first visit to the dentist, who actually got a look in his mouth! He told us to come back for a cleaning when Luke could open his mouth more and would allow him to get in. This hasn't happened yet and I he may need to be put under if someone really wants to clean his teeth. I am hoping that the oral motor and sensory therapy we are doing will allow us to take him to the dentist next year.
We had some problems with Luke's tummy this month. One day he became very lethargic and his button got tight. By the end of the day he was so bad that we took him to the ER. The ER docs called the surgeons who put the button in and they gave instructions through the ER doc and Kevin and I took his button out and a volcano of stomach juices and ickyness came out. We put the button back in and cleaned it up and Luke instantly became his normal self again. They said that sometimes with a Nissen (this makes it so food and liquids can't go up the esophagus easily) it is hard to remove air and pressure can build up especially if something irritated the stomach. So, once the pressure was relieved he was as good as normal. Here we had another Luke experience under our belts. Things never got this bad but many times in the following months we removed the button and released pressure and let things drain. We are not truly sure what caused this but after a few months it seemed to go away and it hasn't been a problem since.
Luke also started having these weird episodes at night where he would continually high pressure. Usually he was alseep but obviously uncomfortable. Holding him would help for maybe 30 seconds and nothing seemed to really make the high pressuring stop. Luke having a high pressure is like him breathing out really hard, or a big sigh may do it. In this case he was obviously not aware. We didn't know what was going on but his stats and everything else seemed fine. Very weird.
Luke saw the neurodevelopmental team again and they thought he was doing well and progressing along nicely. He was not where he needed to be for his age but he was always making progress which was really good they said.
Luke experienced his first Christmas with more family and friends. The whole Calhoon clan even came up for New Year's to meet Luke and of course they fell in love with him.
January – 11 months
A month with lots of doctor visits. At pulmonlogy (the lung doctor) we got answers and changes. Luke is weaning full force again. He had stopped weaning when he got sick in the fall and I was very anxious to get moving again. He was on a backup rate of 12 during the day (20 is where he started and he had to get to 8 to go to the next level of weaning) for 2 weeks and then we would do 8 for 2 weeks and then call to talk about the next step. Luke was teething and had a lot of secretions because he just doesn't swallow well enough and I was afraid that would slow things down but fortunately it did not.
Luke secretions were a bit thicker and a little on the yellow side so they did a trach culture to see what is growing and we will know the results Monday. My dad thought the thicker could just be all the dry car air that is blowing through as it super heats the frigid temps. Luke had been downstate 2 times the week before. As time has went on we have noticed that Luke's secretions are very sensitive to the weather and his environment (car vs. house).
Luke was still having some episodes at night where he couldn't catch his breath and more but we couldn't figure out what they were. The pulmonologist had an immediate answer for us... Reflux. Some stuff goes a little but up from his stomach (can't go far because he has a Nissian which doesn't let things go up from his stomach) and triggers the Vagus nerve which also has a branch by the lungs and triggers bronchial spasms (go nurse Keri who was right on about these) in preparation for the aspiration it thinks is coming, but does not. Luke was put on Zantac but we were told it could take up to 8 weeks to really be effective. This was a relief as these episodes were weird. However, looking back I am not sure it was really reflux. Whatever it was he seemed to just grow out of it because the Zantac didn't seem to really change anything.
We are also working on taking a feeding out and so Luke will be to 6 feedings a day. After that we started adding puree foods to Luke's diet, you can read more about this in my blogs about Luke's blenderized real food diet.
At the ophthalmologist office Luke got a lower prescription on his glasses and they thought he was doing really well. He does not have any corneal sensation which worries the doctor. This means things can touch and possible scratch his eye and he does not even know it.
When we went to pick up the glasses I had a momentary freak out moment as the optometrist put some alien green glasses on him. I said "no thank you" can you just put the new lenses in the frames he has. So thankfully we left with a cute Luke in white glasses.
Luke was quite the chunk. He was 21 lbs. 4 oz. and 27 inches.
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