In Memory of Lucas Weindorf

It has been a while since I have posted, and I would much rather not be posting under these circumstances. Lucas Weindorf lost his battle against Pulmonary Hypertension today. He was almost 17 months old. Rob and I are both so very saddened by his loss. Lucas and his family mean a lot to us. I thought our boys would grow up together. Even though we live far apart, this wonderful age of technology allows us to make friends and share experiences with people we never would have met before. Lucas' mother, MK, has been a great support to us as we have shared this journey through CHARGEland. If you would like to read more about Lucas or leave a message for his family, please visit their blog at http://mkweindorf.blogspot.com/


Lucas was such a beautiful, sweet boy. We will miss him so much.

G-tube update

Luke did get his g-tube on the 21st like we expected. It almost didn't happen since surgery had left him off their list, but a terrific nurse got it sorted out right at the end of the day on the 20th. Luke also had his second orchiopexy in which brought down his right testicle. He still has to have one more surgery where they bring down the left testicle which will probably happen in February or March next year. This surgery seems to have been Luke's most difficult so far. He stayed in the hospital for 4 days and had a good bit of pain, transitioning to OTC pain medicine (Tylenol) only on the last day.

Getting Luke up to speed on his g-tube feedings has happened more slowly than we expected. His goal is 5 bolus feedings of 6 ozs. each over the course of the day. This puts the feedings at about every 3 to 3.5 hours. He is currently at 1 feeding of 6 ozs. and 4 of 5 ozs. and they aren't bolus yet, but given by a pump over 45 minutes to an hour. At first Luke was throwing up anything over 4 ozs. like his stomach was just too full. We put him back on Reglan to help speed up his digestion and the throwing up has gotten much less. Unfortunately he got a cold in the last week and some of his hard coughing is making him throw up, which happened a lot in the past with his bottle feeding. The good news is that Luke already seems to have gained a few ounces going from 17 lbs. 6 ozs., when he was admitted on the 21st, to 18lbs. 1 oz., yesterday, or from 7.9 to 8.19 kg (both with clothes on). So if his weight gain is good, the nutritionists aren't as worried about getting his feeding up to goal.

With the exception of what is lost through throwing up, Luke's feeding is finally really consistent. The pump is wonderful for that. It is so easy to use and taking Luke out while he is eating is a breeze. The pump has a little back pack and it just comes right along with us. Now Luke can eat in the car and the stroller and, the best part, even when he is asleep! Another benefit of the g-tube that we have noticed is that Luke is finally well hydrated and actually producing several wet diapers a day. And the strangest thing of all is that Luke's constantly draining ears have almost totally cleared up. His left ear (the one that was cleaned out) has nothing draining, and the right can only be seen when we clean out his ear with vinegar water each night. Now, so far, we aren't seeing a big difference with his hearing, but I would have to think that there is at least some improvement. Luke did make a new sound yesterday - a very brief buh, buh, buh. When he has another booth test next week, we'll see if they can tell a difference.

The other news is that Luke finally got into VitalStim. He starts next Monday, so I will keep you all updated about his progress there.

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!