Feeling better

Ben is starting to feel better and his nights have improved dramatically. Seems like all the little Chargers are sick right now too (and some of their families).

We got a call from Ben's urologist on Friday and we don't know if Ben will be having surgery on June 8. He is suppose to have two ENT doctors do some airway scopes and ear cleaning and urology do two deflux injections (one on each kidney canal). Our urologist isn't in surgery that day after all (he was so certain he was). So now we are waiting to see if he wants to do it on another day or if he wants a colleague of his to do it instead since we already have to doc's scheduled. I'll keep you posted.

Definitely Sick

Ben is definitely sick. He has a cold of some sorts and he is handling it pretty well during the day, but at night - it really sends him for a loop. He has tons of secretions and they are thick and yellow. He has having trouble bringing them up himself and just coughs and coughs. Sometimes this hard coughing causes him to vomit. We are giving him regular breathing treatments, lots of saline and cool mist. The one thing that really concerns me with this cold, is that his heart rate is dramatically higher than normal. At night when we hook him up to his oximeter, his normal hr reads between 38 and 60 (very low, but Ben has an arrhythmia and skips many beats). The last two nights, his hr has been between 90 and 140. Once it gets up to 100, he starts panting - even while he is sleeping. I have a call into his cardiologist to make sure he doesn't want to run any tests while he is at the hospital today for a GI appointment. Guess there is still lots of things going around right now.

Something new to cheer Ben up!

Ben hasn't been acting like himself (we are wondering if it is allergies or if he isn't feeling well). It just happens to be a warm and beautiful day out today, so I decided to try something new to cheer Ben up. I took him outside and put him in his swing but instead of a regular old swing ride, I mixed it up... I started the sprinkler and let it soak him while riding in his swing. I couldn't tell if Ben loved it or hated it (Ben's scared expression and his laugh tend to look the same due to his facial palsy). After about 10 minutes of scared/happy, I decided to call it quits because we were both cold. This is when I knew Ben loved it! He was ALL wound up when I put him down. He was rolling around everywhere SUPER FAST and was playing in his exersaucer like it was a jumparoo! I must say, I felt like a kid again getting soaked by the sprinkler and it was quite refreshing! I've left the sprinkler out so we can try it again tomorrow - weather permitted.

(In the last picture, the lines above his eyes are from his sunglasses)

Visit with Aunt Theresa

This past weekend, Ben's aunt Theresa came to visit. I know Mike really enjoyed having his sister around (and I did too). I sometimes take for granted that my family is all within an hour (except for my grandparents) and is here so much. Mike's family lives in Northern Ohio (4 hours away) and they aren't able to visit as often. Mike's mom will be visiting this coming weekend. I'm sure she will be shocked with how different Ben is now compared to how he was before the holidays last year. It is amazing how curious Ben has become and how he can get anywhere quickly, by rolling. Just yesterday, he rolled into the kitchen and found his way to one of our lower kitchen cabinets. Within a few minutes, he opened one and was knocking stuff out. He doesn't miss a beat!

Ben is becoming a little monster though... he is OBSESSED with pulling on his trach and his cochlear implant. He does it for the attention (and when he is bored) and we are trying everything to break him of these bad habits. We put a hat on Ben to stop him pulling on his implant and that seems to help, but we aren't making any headway with the trach pulling (and this is the dangerous habit). He doesn't quite understand (or care) about the sign for "no". Small slaps on his hands don't work either because they don't hurt him (very high threshold for pain) and he then thinks it is game. We have tried putting arm restraints on for 2 minutes when he starts pulling, but he just sits there and patiently waits for the 2 minutes to be over and then starts all over again. Anybody have any tips for us!

This is the hat Ben spends most of the day wearing to keep his little quick fingers from snatching off the implant on his head. I find it appropiate because the hat has a "grabby" lobster on it.

Cutie Patoodie

I just had to share some new pictures of Ben. He still "hams" it up for the camera.

This is what I do when I want someone to pick me up. I even know the sign for "up" and do this too! (Notice my outfit says "super charged"... isn't that fitting for many reasons?)

I like Grandma Deb's new car! Will this be mine some day Grandma?

Decided to go with the Deflux Injection

After talking with Ben's urologist on Friday, we have decided to go with the Deflux injection. Ben does have some scarring on his left kidney (the side that showed no reflux - kind of contradicts his other test that showed his left side reflux was gone), but it was very minimal. The right side didn't have any scarring. Now we know that there isn't any huge time crunch to get the open procedure done, so I wanted to try the less invasive route first. We are trying to get that added on to Ben's surgery on June 8. His doc didn't seem to think it would be a problem. Ben should still be able to come home the day of his surgery. We won't know until three months after the injection if it worked. If not, Ben would get another round of Deflux. Ben can get up to three rounds. There is also a one year relapse period. This would be so wonderful if it worked. I'm hoping for the best!

What a Nightmare!

Today has turned out to be quite a nightmare. Ben had part two of his urology testing today (part one went well -- as well as a catheter in the who-ha can go). Today they had to see if his kidneys had any scarring. That involved starting an IV. This is normally a pretty easy procedure for most, but not for Ben. He is SO difficult to get IV started when he is under for surgery, let alone awake. He has just been stuck so many times in the past, his veins are forever fragile. I knew this IV was going to be tricky, so I scheduled Interveinous to start the IV (a department that starts IV's by using ultrasound). We were fortunate enough to get the attending radiologist as the person to attempt. Well to make a VERY long and bloody story a little shorter... he wasn't successful after TWO HOURS of sticking. The PIC Line nurse (another kind of IV) was also unsuccessful. The Urologist was called and we were told that he still needed this test, even if we had to come back. Since Ben went without eating for 8 hours before this test (this was also something he didn't need to do because we were informed once we got there that they would NOT sedate Ben due to his complications and anesthesia wasn't there to administer anesthesia so he couldn't get that either) and we were already there and invested in finishing this, we decided to try one last way. This involved sticking a butterfly needle in his arm and just quickly pumping in the nuclear med by hand. I could have just hugged the radiologist who gave us this idea because it finally worked! And I learned to just ask for this first next time.

Ben then had to wait 90 minutes - which was fine because it gave him time to forget about what he just went through. However, every time he looked at the band aid on his finger, he would start to cry all over again. When the time came for the scans, he laid completely still for the 30 minutes and just watched the light show (I had to beg and plead for this light show, I was starting to sound like a crazy person. I could tell they didn't quite understand how this light show is better than any drug you can give Ben. I wouldn't give up and I finally got a doctor who agreed to borrow it from another department - he was probably tired of hearing me. Once they saw how much Ben LOVED it and didn't move for the entire time, they understood and was asking their manager for one).

Ben is doing well now and has pretty much forgotten about the whole ordeal. What a day! This test better give them the answers they need. Anyway, tomorrow Ben has an appointment with the Urologist to discuss all the results. I should know then what the plan is with surgery.


Here are some pictures of our cute little band aid bandit! After the forth band aid, they stopped putting them on. I think they stopped because it was drawing too much attention to the number of times Ben was being stuck and they didn't want to scare any kids who ran into us during the 90 minute waiting period. Either that or they didn't have enough band aids to endure the long hall of Ben's stick-a-thon.

Nebulizer Treatments

Ben has been trying to kick this cold for the past week. He feels pretty good, just has this cough and runny nose that won't go away (that was how my cold drug on too). His doctor wanted him brought in ASAP last Thursday after a 6 hour coughing fit that wouldn't improve with anything (CPT, nebulizer treatments, cool mist, etc.). They were mainly concerned that he might have pneumonia. So we drove Ben on in and thank goodness... he didn't. They just said to continue to give him regular nebulizer treatments and hopefully soon he will get over the bump (although now I think I've caught the cold back again from Ben because I'm congested and feel a little under the weather - it is just so hard to not pass it back and forth when you spend so much time with someone and you are constantly suctioning and dealing with their secretions). Our nurse is also feeling under the weather and she called off last night (now I have plenty of time to update Ben's blog).

But we are doing these nebulizer treatments every 3-5 hours around the clock and Ben is such a stellar patient! I've tried to make the treatments like a little relaxation therapy for Ben and he has really taken to them. I prop him in the boppy and put on his taped show of Handy Mandy. He holds the tube for me, relaxes and watches his show (he does this about five times a day when he's up). He is just so sweet!

Flying Pig

This past weekend was the Flying Pig Marathon and a handful of other Flying Pig Races all in Cincinnati. Mike ran in the 10k race on Saturday (with Ryan, Rachel and Katie). They all did a great job! The money Ryan and Rachel made was donated to the CHARGE Syndrome Foundation. Thanks guys!! Luckily, the weather held out and we didn't get the rain the forecast was calling for. My mom and I took Ben downtown bright and early to watch. Ben looked so festive in his flying pig hat.

NOTE: Mike is the one in the red shirt. He's so fast, we could hardly get a picture!!

Urology Appointment

Ben had his follow-up with his Urologist this week. After Ben's last renal ultrasound, he wanted us to come in to discuss surgery plans (surgery to fix Ben's urinary trach reflux was canceled after we found out Ben wouldn't be getting off his trach soon - we decided to wait until he was older and stronger since this surgery is so involved). We found out that Ben's kidneys haven't grown since his last ultrasound. They are now two levels smaller than they should be for his age. Because of this, the doctor needs to find out if his kidneys have any scarring from the urinary trach reflux. If they do, then the open surgery needs to be done ASAP.

A test called DMSA will be performed to find out if he has scarring. They start an IV and inject radioactive fluid into his veins. They allow 90 minutes for it to circulate then take about 60 minutes worth of cat scans. They are also going to do a VCUG test to see if his urinary reflux has improved (unlikely, but we are still hoping fro some improvement). Both of these and some blood work will all be done next week, along with his cardiology follow-up and some heart tests to make sure Ben's little ticker is still doing well.

If the urology tests show no kidney scarring, then we are going to try the reflux injection to fix his reflux. Hopefully that can be done when Ben is under on June 8 (he is getting his airway scopes and his ears cleaned out).