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.

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.

Luke's new voice...

Luke got his PMV on Friday. It is slow going, but we hope it won't take that long before he gets used to it. He usually doesn't seem distressed when he is wearing the PMV - he just keeps playing or doing whatever he was doing. But he is also not breathing effortlessly yet either. He seems to have to keep his mouth open and he drools a lot. Luke also makes noises that sound like a duck or a cat purring. He blows raspberries too. He has made a few small vocal noises, but he isn't making much sound yet. What we have heard has been wonderful though and makes us anxious for more to come.

Here are a few short clips of Luke using his PMV. The first half-second of the first video Luke is making a vocal noise. Otherwise they are all breathing noises.

Luke's 3rd CA dilation

Luke had his 3rd CA dilation last Friday. Everything went fine, but Dr. Hill is still not sure how long it is going to take to get Luke's nose open enough to get the trach out. He wants to dilate again in July (the 25th) and see where we are then. The good news is that he is finally going to let Luke try a PMV - passy-muir valve or speaking valve. This is an attachment for the end of the trach that lets air go in through the trach, but out through the mouth and nose. This means air passes the vocal cords, so making sound is possible. If Luke is able to do this then we would move on to capping and then decannulation. It can take quite a bit of adjustment to get used to the PMV, so we will have to start very slowly at first.

Gus is Student of the Month!

Well Gus was very surprised and excited last week when he got the Student of the Month award for May. Now both boys have lovely medals to keep. We also met with their Kindergarten teacher, Mrs. LaRota, and decided that the boys should be in class together again next year. They did really well being together this year. They were always there for each other, but they played with different kids and weren't in the same groups, so they weren't dependent on each other. Being in the same class helps us as a family since it allows Rob and I to attend class events for both of them and to work with them on the same homework. And it also helps Sam and Gus have a little extra security in knowing that their brother isn't far away.



The boys also had their end of the year party and received their Kindergarten certificates. Today is their last day of Kindergarten. I will be happy to have them home again with me for the summer. I feel like I hardly get to see them anymore. But what are we going to do for the next 2 and a half months... I am sure all 3 boys will manage to keep me busy as usual.

Happy Mother's Day!

I had a really nice Mother's Day yesterday. I was surprised in the morning with several sweet gifts that Sam & Gus made for me - lots of handprints, drawings and love. We went to Nonna and Papa's and spent the day, and we all had a really nice time. I even got to take a nap after lunch, which was wonderful. Before, that would have kept me up at night, but not anymore. It was a beautiful day, so we took some photos outside.

Another tooth...

Gus lost his second tooth yesterday. It won't be long before the top two come out too and he will have a big hole in the front of his mouth. He doesn't seem to mind a bit though.

Some of our friends commented this weekend about Gus looking like Rob now. I know he has my eyes, but in photos lately I can start to see what they mean. I actually think he looks like Auntie Marjo in the top photo below. Rob says he can see Craig. Rellies, what do you think?