Luke's appointment today with GI went fine. It was what we expected - Luke needs a g-tube. The main reason is for the aspiration, but the doctor said even without that he would probably need it for hydration and weight gain. The good news is that Luke has gotten longer 29.5 inches, but he is still right around 17lbs. which means he is under the growth chart even for his height.
The part that was a bit surprising is that after waiting 2 weeks for an appointment with GI, they want Luke to go in the hospital right away and have an NG tube placed until the surgery for the g-tube can be done. For those that don't know, an NG tube goes from the nose down into the stomach and isn't surgical, the g-tube is placed in the stomach surgically. I have no idea how Luke is going to do with the NG tube. I will be surprised if he doesn't try to pull it out, but we will see... The doctor said Luke will probably be in until Friday. Rob and I need to be trained and we need to come up with a good feeding schedule. This will be a whole new world for us, hopefully it won't take too long to get adjusted.
Tomorrow morning Luke will have his last bottle. I am a bit sad about giving up this cuddling time. Of course it happens for all babies, but since he is my last I feel sentimental about it. Luke will be off all oral feedings for a while, but we hope that it won't be too long before he can start eating some foods again.
I will try to get Rob to update while we are away, but if he can't (work and wily twins take up a lot of time) I will write again after we get back home.
Monday, August 11, 2008
Friday, August 8, 2008
Sam and Gus start 1st grade!
Now a happy post! Yesterday was the first day of school and Sam and Gus' first day of first grade! We went to meet their teacher on Tuesday. And she seems lovely. The boys both raved about her yesterday afternoon. They are so excited to be back at school, they haven't even complained about having to get up early again. Here are a few photos from "meet the teacher" and the first day.
Sam at his new desk
Gus at his new desk
The boys with their first grade teacher
Their favorite pose
What cool new backpacks - everything has got to be Pokemon. I dressed them for the first day, but today they chose and they each picked out their new Pokemon shirt.
First grade!
First grade!
Sam at his new desk
Gus at his new desk
The boys with their first grade teacher
Their favorite pose
What cool new backpacks - everything has got to be Pokemon. I dressed them for the first day, but today they chose and they each picked out their new Pokemon shirt.
First grade!
First grade!Swallow study failure
On Tuesday the 29th (my birthday) Luke had a swallow study with a speech therapist at Children's to evaluate him for Vitalstim. Vitalstim is a swallowing therapy where electrodes are placed on the neck and the electrical stimulation from them strengthens the muscles used to swallow. Luke's last swallow study in April wasn't great, but he did pass and did not aspirate during the test. We know that he has been aspirating though because we see evidence of food coming out of his trach. It is only sometimes with solids, but has gotten to where it is most of the time with his bottles. We suction Luke a lot when he is eating and he has never gotten sick, but there is always the possibility, so Rob and I worry a lot about this.
Since we know about the aspiration it shouldn't have been a surprise to me when he failed the swallow study. Of course he fail on the first bite of the thickest liquid, so that makes just thickening his formula out of the question. So... it looks like after all this time Luke will have to get a feeding tube put in his tummy. It isn't a foregone conclusion because we haven't seen GI (the tummy docs) yet, but it is the recommendation of the therapist who did the study. And I could tell she felt very strongly that it isn't safe for Luke to keep drinking liquids at this point. Luke's GI appointment is at 1 on Monday. I forgot to say in my last post that Dr. Hill noticed some evidence of reflux too, so we have to have GI check out that as well.
While I was heartbroken at first to think that Luke has to have another surgery, another stoma, another piece of hardware. And that this means another step away from "typical" for Luke. Rob and I both see that there might be many advantages to the g-tube. We struggle all the time with getting Luke to eat enough and gain weight and a tube should help with both of those issues. Our biggest day to day challenge and stress is the worry over aspiration and calories, so it might make all our lives better if that stress is taken away. We tend to spend much of the day trying to get Luke to eat enough, so we might see relief from that. Also Luke seems to have more energy and make more advances in motor development when he is eating well (which doesn't happen often) and we would love to see an increase in that area. So Rob and I find ourselves in the position of realizing that something we so didn't want to have to do might be the best thing for everyone. At least the g-tube isn't all or nothing like the trach. Luke can still eat orally with it, but he doesn't have to. And with all the surgeries and sickness having a guaranteed way to feed Luke would be great.
Needless to say my birthday wasn't the best. But I was lucky to have one of Luke's therapists, Brooke, go with us for the test. She looked after Sam and Gus when I lost it and answered every question I could think of for an hour or so after the test was over. She has always been there for us with Luke's feeding challenges, and we are so lucky to have her in our lives. Luke has 2 wonderful sets of therapists, one with Shelby County ARC and the other at The Bell Center, and I think they are the only reason we make it through this medical maze most of the time. I hope they know how much we appreciate everything they do.
Since we know about the aspiration it shouldn't have been a surprise to me when he failed the swallow study. Of course he fail on the first bite of the thickest liquid, so that makes just thickening his formula out of the question. So... it looks like after all this time Luke will have to get a feeding tube put in his tummy. It isn't a foregone conclusion because we haven't seen GI (the tummy docs) yet, but it is the recommendation of the therapist who did the study. And I could tell she felt very strongly that it isn't safe for Luke to keep drinking liquids at this point. Luke's GI appointment is at 1 on Monday. I forgot to say in my last post that Dr. Hill noticed some evidence of reflux too, so we have to have GI check out that as well.
While I was heartbroken at first to think that Luke has to have another surgery, another stoma, another piece of hardware. And that this means another step away from "typical" for Luke. Rob and I both see that there might be many advantages to the g-tube. We struggle all the time with getting Luke to eat enough and gain weight and a tube should help with both of those issues. Our biggest day to day challenge and stress is the worry over aspiration and calories, so it might make all our lives better if that stress is taken away. We tend to spend much of the day trying to get Luke to eat enough, so we might see relief from that. Also Luke seems to have more energy and make more advances in motor development when he is eating well (which doesn't happen often) and we would love to see an increase in that area. So Rob and I find ourselves in the position of realizing that something we so didn't want to have to do might be the best thing for everyone. At least the g-tube isn't all or nothing like the trach. Luke can still eat orally with it, but he doesn't have to. And with all the surgeries and sickness having a guaranteed way to feed Luke would be great.
Needless to say my birthday wasn't the best. But I was lucky to have one of Luke's therapists, Brooke, go with us for the test. She looked after Sam and Gus when I lost it and answered every question I could think of for an hour or so after the test was over. She has always been there for us with Luke's feeding challenges, and we are so lucky to have her in our lives. Luke has 2 wonderful sets of therapists, one with Shelby County ARC and the other at The Bell Center, and I think they are the only reason we make it through this medical maze most of the time. I hope they know how much we appreciate everything they do.
Surgery results
Luke's surgery on the 25th went fine - read into that not bad, but not as well as we would have hoped either. Dr. Hill was only able to dilate one nostril, because there wasn't room on the other side to make it any larger. The bronchoscopy results were pretty normal. There is a small granuloma (bit of scar tissue around the trach opening) and a bit of collapse from having the trach. Dr. Hill didn't think either of these warranted any concern or should interfere with Luke's PMV use. That was the first part of surgery and took maybe a half-hour. Then it took two more hours for Dr. Hill to clean out Luke's left mastoid - a porous bone behind and below the ear. I knew they would drill back there, but I didn't realize the incision would be around the whole back of Luke's ear. They pulled the ear and ear drum forward and drilled out the mastoid to try to clean out infection and debris from all the fluid. Luke looked like he had a Frankenstein ear.
Because Luke was under for so long he needed a bit of oxygen after the surgery to keep his sats up in the high nineties. They were in the low nineties without the oxygen, which is apparently not good enough for the recovery room to release him. I thought we were going home, so I was a bit worried when the nurse told me Luke's room was ready and they were giving him a breathing treatment in recovery. Turns out we had to stay so Luke could be weaned off the oxygen. And the nurses in recovery didn't understand that Luke is always "junky" and sounded funny and raspy because he was dry and needed some saline. It was a long night with all the unnecessary alarms. But we got to come home on Saturday.
Because Luke was under for so long he needed a bit of oxygen after the surgery to keep his sats up in the high nineties. They were in the low nineties without the oxygen, which is apparently not good enough for the recovery room to release him. I thought we were going home, so I was a bit worried when the nurse told me Luke's room was ready and they were giving him a breathing treatment in recovery. Turns out we had to stay so Luke could be weaned off the oxygen. And the nurses in recovery didn't understand that Luke is always "junky" and sounded funny and raspy because he was dry and needed some saline. It was a long night with all the unnecessary alarms. But we got to come home on Saturday.
Thursday, July 24, 2008
Long overdue update
I need to post quite a bit about what has been going on with the boys this summer, but I only have time right now for a short update. Luke is having another nasal dilation tomorrow and Dr. Hill might clean out his left mastoid cavity (all the fluid in his left ear). The dilation in one day surgery, but we might have to spend the night for the ear. So, either Rob or I will update about the surgery as soon as we can afterwards. Luke is also having another swallow study done next week to determine if vital stim swallowing therapy would help him stop aspirating. Promise we will update after that as well.
Sam and Gus have just gotten back from their second trip to the beach with Nonna and Papa. They went to Vacation Bible School while they were there and had a great time. It was really quiet around here without them, so we are glad to have them home. They start 1st grade on August 7th and we get to meet their teacher on the 5th. Summer has just flown by. It will seem strange not having them home with me. But Sam and Gus are both ready to go back to school.
I will post photos soon, since I don't have time now. But I did want to show you all this short video I took of Luke today. He was making more noise this morning than usual, so I was trying to get a good video of that. It didn't work out, but I did get this of him crawling. This is the first time I have seen him crawl on his own. It is only a couple of paces, but I am so excited that Luke is finally interested in moving on his stomach. You can see too that he loves his beads.
Promise I will post more soon!
Sam and Gus have just gotten back from their second trip to the beach with Nonna and Papa. They went to Vacation Bible School while they were there and had a great time. It was really quiet around here without them, so we are glad to have them home. They start 1st grade on August 7th and we get to meet their teacher on the 5th. Summer has just flown by. It will seem strange not having them home with me. But Sam and Gus are both ready to go back to school.
I will post photos soon, since I don't have time now. But I did want to show you all this short video I took of Luke today. He was making more noise this morning than usual, so I was trying to get a good video of that. It didn't work out, but I did get this of him crawling. This is the first time I have seen him crawl on his own. It is only a couple of paces, but I am so excited that Luke is finally interested in moving on his stomach. You can see too that he loves his beads.
Promise I will post more soon!
Tuesday, June 24, 2008
Luke's port surgery
Today Luke had a CT scan and had his central line removed and a port put in. We would rather have nothing, but Luke is so hard to get an IV in that it will save him pain in the long run if he has IV access without having to try to find a vein each time. Before the central line they routinely had to stick him 10 to 20 times to get an IV. And since he is still getting surgery after surgery, we need to keep access as easy as possible. The port is really just another type of central line, but it is under the skin rather than hanging out. But it should be so much better for all of us than the line he has right now. After the site heals, the port will be under the skin and Luke won't need a bandage. He will actually be able to have his chest washed for the first time in 9 months. We will only have to do maintenance on the port once a month, rather than once a day like we are doing now. Right now we have to try and be so careful too not to pull the line or get it wet, and both things can be really difficult. Luke has been trying to learn how to commando crawl lately and the line has been right in the way. Needless to say we have been really looking forward to this surgery and are really excited to have it done. They put the port on the right side on the upper part of his chest. Luke is home safe now, but a little sore and groggy.
The CT scan is of his ears to check the fluid in his mastoid cavity. Since his ears have had more awful drainage than usual for the past couple of months, Dr. Hill might go ahead and clean out one of Luke's mastoid cavities during his next dilation surgery, July 25th. It would probably only be a short term procedure, but it could make a difference. Sometimes once an infection has begun the mastoid actually gets infected and becomes a new source of infection rather than just a conduit. Dr. Hill will be able to compare this CT to the one Luke had done in the fall and see if anything has changed. In the fall both mastoid cavities were full of fluid, so I would expect that they will see the same thing today. We will let you know when we get the results.
The CT scan is of his ears to check the fluid in his mastoid cavity. Since his ears have had more awful drainage than usual for the past couple of months, Dr. Hill might go ahead and clean out one of Luke's mastoid cavities during his next dilation surgery, July 25th. It would probably only be a short term procedure, but it could make a difference. Sometimes once an infection has begun the mastoid actually gets infected and becomes a new source of infection rather than just a conduit. Dr. Hill will be able to compare this CT to the one Luke had done in the fall and see if anything has changed. In the fall both mastoid cavities were full of fluid, so I would expect that they will see the same thing today. We will let you know when we get the results.
Unexpected surgery for Candi
I had a wonderful visit with my friend Jodi this weekend. I went down to her house in the middle of the day Saturday, spent the night, and then came home on Sunday. Sam and Gus were at the beach with Nonna last week having a vacation. So Rob took care of Luke and I spent my third night away from Luke since he was born. On Sunday morning my back hurt, but I thought that was just from sleeping in a bed that I wasn't used to. As the day went on my stomach hurt. I had to stop at Walmart on the way home and pick up a few groceries and by the time I left there it felt pretty unbearable. When I got home I told Rob I had to go to the doctor, and during the 5 minutes it took to drive to the doctor's office I decided not to stop and to head straight to the ER. By the time I got there I was hyperventilating and having a panic attack. The pain was really awful - kind of like labor, but persistent not in waves. At St. Vincent's they did a CT scan and discovered I had an 8mm kidney stone that was trying to pass. They gave me a shot, which worked for the pain and sent me home with a pain killer prescription. All the pharmacies were closed, but luckily I had some pain medicine left since I never take all that they give me of that. Sam and Gus got home about 10:15 because there had been a wreck on the interstate, so we got them settled in and to bed quite late. The pain pills were working some, but not really well. At about 1:30 or so I started throwing up. After that I kept throwing up every 15 or 30 minutes, sleeping a little in between. I took more pain meds, but couldn't keep them down. I also drank water, but that didn't stay in for long either. At 8 I called the urologist suggested by the ER and went right to his office. By the time I got back there the pain was full force again, so after waiting in the lobby for about an hour I saw the doctor. He immediately did an x-ray and said that the kidney stone was too big to come out on its own and he would have to remove it. They gave me pain meds again, so after that the worst of the pain was over. The doctor sent me over to St. Vincents and they did surgery in a couple of hours. Thankfully Mom was able to come get me at the doctor and be with me since Rob was at home with the boys. She and Gary went to get my car and took me home. And basically I slept the whole time after the surgery. I already feel much better today and think that by my follow-up appointment on Thursday I should be back to normal. Hopefully the doctor will be able to tell me what kind of kidney stone it was so I will know what to avoid in the future. It was right up there with labor as something I never want to experience again. I think it had been coming for a while, but since this hadn't happened to me before I didn't know what was happening. A few weeks ago I had a really bad night of stomach pain and vomiting that I thought might have been food poisoning, but I couldn't figure out from where - now I realize it was the stone moving, but the pain stopped, so I didn't think about it again.
I am still groggy from the anesthesia, but I realize that this is a good experience for me to see what it is like for Luke. I can understand now why he is not quite himself after surgery, and that it takes longer to recover than I would have thought. He actually does really well getting back to normal - better than I am.
I am still groggy from the anesthesia, but I realize that this is a good experience for me to see what it is like for Luke. I can understand now why he is not quite himself after surgery, and that it takes longer to recover than I would have thought. He actually does really well getting back to normal - better than I am.
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