Da, Da, Da, Da, Da...

I don't know if I mentioned it before, but Luke has been making a lot more noise lately, even without his PMV. And now when you put his PMV on he usually starts to make sounds right away. His favorite seems to be da, da, da... I took a few videos in the hospital of him making sounds. He even seemed to be queing sounds from me sometimes. So we are going to keep working on that. I apologize for the general shakiness of the video. Luke has started reaching for the camera anytime I get it near him - how wonderfully typical!



The day Luke had his swallow study, he also wore the PMV for the speech therapist. And it was an awful day all around, because he did terribly with the PMV. He did breathe through his mouth, but it was a real strain and he cried. The speech therapist thought there was some kind of obstruction between the trach and Luke's mouth, and that he should not really wear the PMV much if at all. And to be fair to us, I have never left the PMV on when he has had that kind of reaction, which has not been very often. But since that day we have not been using the PMV much. So when Luke was in the hospital last week I took advantage of the fact that he had an oxygen saturation and heart rate monitor to see how he responded physically to the PMV. He didn't cry or get upset or even seem to mind at all that he had the PMV on - in short, nothing like the day of the swallow study. Luke had the PMV on for over an hour and he did great. His sats. stayed between 98 and 100 and his heart rate was in the 120's. It gives me more confidence to know that I can tell when he is distressed and can remove the PMV. But there are definitely times when he does well with it and he should keep using it.

We're home...

... with no NG tube. Even with the x-ray machine the doctors couldn't get a tube to go down Luke's nose. I knew his anatomy was odd, but not this odd. It makes sense now that Dr. Hill is having such a difficult time with the choanal atresia. The radiologist says that he can always get the tube down with the x-ray machine, so he was quite surprised when it wouldn't work.

So the plan now is to just keep feeding Luke orally until he gets his g-tube next Thursday. As far as we know there is no problem combining the g-tube surgery with the urology surgery. They said Luke will have to stay for 3-4 days after the surgery to get his feeding schedule worked out. The plan now is to work him up to about 8 ozs. 4 times a day. This would be perfect for us, so I hope it works out. Also, Luke could keep having some solids by mouth to keep his feeding skills, and any calories from that would be bonus. He was "officially" diagnosed as "failure to thrive" on his hospital discharge papers, meaning he is under the curve for his weight compared to his height. His weight is apparently average for a 6 month old and his height for a 9 month old. The nutritionist wants Luke to have 900 calories a day to start to catch-up and we are only getting 600-700 in him right now by mouth. So Rob and I are confident now that the g-tube is the best decision for Luke.

Luke has tons of appointments next week - Dr. Hill, the dentist for the first time, and his 18 month ped. visit. I will try to update on some of those things before Thursday. Sam and Gus also want to join the cub scouts, so we have School Night for Scouting on the 19th. I hope they enjoy it. At registration they were very excited about going fishing and camping.

Hospital update

Luke was admitted to Children's today and he is doing well. In true Luke fashion though, things don't always go like you would expect them to. Three different nurse tried to put in the NG tube and they can't get it to go passed his nose. So the next option is to put it in under x-ray. Since it is so late, they will probably do that tomorrow. We will let you know when there is more news.

GI Update - Children's here we come

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.

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!

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.

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.