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Category Archives: Family

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Lots of tests

April 18, 2010 – 11:18 pm

88th day away from home (April 18)

We went to the Orthopedist and there is some good news regarding Aiden’s arm. The latest x-rays looked good and it appears to be healing well. We no longer have to try to keep it immobilized (which was no longer very effective anyhow!). Aiden is very happy to have use of his arm again! On Tuesday he will go to the OR for the endoscopy, colonoscopy and manometry tests. It will be a long day for him but it will be good to finally have these tests done.

As far as the twins, basketball has become the latest craze (especially for Evan). He is quite good at dribbling it and wants to “own” the ball whenever he gets his hands on it. We are working with helping him learn how to share it

Below are a few recent images. Please keep Aiden in your prayers as this will be a big week for him!

Evan’s new favorite - playing basketball

Ethan preferred to play with the sticks

Slam it Evan!

Ethan’s turn

2 on 1

Someone get it

Evan plays the “drums”

Ethan, hang on tight!

They love this

Flying high

Enjoying himself

By Manish | Comments (0)

Upcoming tests

April 11, 2010 – 8:48 am

81 days away from home (April 11)

It has been a busy and hectic couple of weeks. Although Aiden is now outpatient, they have had to be back at the hospital nearly every day for something (follow-ups , dressing changes, x-rays, etc.). The j-tube site is now looking much better and is nearly healed, although there is still a bit of topical skin infection at the surgical site.

We finally have a specific date for the endoscopy, colonoscopy and (3 different types of) manometry testing. Provided we can wean him off of the pain meds by then, Aiden will go to the OR on April 20th for the scopes and placement of the manometry catheters. He will be inpatient for a couple of days while the testing is taking place, and to collect data.

He has already had MANY endoscopies, a partial colonoscopy, and two types of manometry testing previously; however, because of everything that has taken place in the past couple of months, the doctor want to repeat these tests in order to rule out certain diagnoses and obtain more information for comparison, to determine what has changed in Aiden’s body and tailor a more specific treatment plan for him. At this point, there is nothing else that they know to do to diagnose his issues. If these tests do not show something, they simply do not know what else to do for him at this point.

Because narcotics change the body’s motility and can skew the results of the testing, he must be completely off the pain meds prior to the tests. This is a huge challenge for his body and will have to take place in a fairly short period of time. He has been on strong pain meds such as morphine and oxycodone since early February, and is still in a significant amount of pain. In fact, he has yet to complain even once about the broken arm. Instead, he is constantly telling us that his “tummy hurts” (lower abdominal area), despite the fact that he is still on the pain meds. Please pray with us that the weaning of the pain meds will go well, with minimal withdrawal symptoms, and that the doctors will be able to find a way to adequately address the pain that Aiden continues to experience on a daily basis.

Due to the diagnosis and symptoms of pulmonary edema following the recent surgery and his continued long-term oxygen requirements, Aiden will also be undergoing some cardiac testing and follow-up in the next couple of weeks. Since his days in the NICU, despite his respiratory and other issues, he has always been very stable cardiac-wise. However, he has also never experienced pulmonary edema, and the doctors want to be cautious and rule out pulmonary hypertension, as well as any possible cardiac causes for these respiratory issues.

After discussing at length the possibility of using a capsule camera to try and diagnose the cause of Aiden’s pain and possible obstruction, the doctors have determined that he is still too small to attempt this procedure, as the camera could become lodged internally. To date, the smallest child they have performed this in is a 4-yr. old, and due to all of the various surgeries that Aiden has had in his lower abdominal area, there is also likely to be scar tissue that may interfere with the safe passage of the capsule camera.

The current plan is to perform the testing scheduled for 4/20. If they are still unable to identify anything through that testing, they hope to be able to keep him stable and growing for 3-6 months, at which time they may attempt to place a pseudo-capsule, which is the same size as the capsule camera. If the pseudo-capsule passes successfully, they would then attempt the procedure using the camera. If the pseudo-capsule does not pass, it should dissolve on its own within a few days.

After experiencing–and resolving–a number of issues with Aiden’s PICC line (which we were hoping to keep intact until after his next round of testing), it had to be pulled this past week when it developed a hole in the tubing. It will most likely have to be replaced when Aiden is taken to the OR in a couple of weeks.

The fractured humerus seems to be healing without any complications. Although the bone is ever so slightly displaced, they are hopeful that will correct itself due to his age, but have to monitor is closely as it heals. He will have another follow-up appointment and x-rays next week to continue to ensure that everything looks okay.

In the meantime, Aiden continues to be sad that his two comfort items and best friends, his blankie and his bear–both especially important when he is not feel good–have both gone missing in the past several weeks. Although we have tried several replacement blankies, none are quite the same, and have yet to find anything similar to replace the beloved Mr. Bear.

The twins have been doing fine and enjoying “school” three times a week at the learning center at Church. They attend Tuesday through Thursday for 7 hours a day. Translation: 3 mornings and early afternoons of quiet, peace and bliss for Manish (of course, he is at work but Hannah’s mom gets a nice break from the craziness).

Below is a video clip of the twins. (It is in HD so you will need a high speed connection to view it.)

By Manish | Comments (1)

Not the break we wanted

March 31, 2010 – 10:43 am

Day 71 (March 31, 10:30PM)
As if things weren’t bad enough, last night Aiden fell off the bed (while he was trying to get a toy that he dropped) and broke his left arm. His left humerus is fractured and will probably take a few weeks to heal. It was a clean break but it is so high up on the arm that they cannot put a cast on it. So, his arm is taped to his body (a sling would not work so this was the next best thing). So, add one more thing to pray for!

We never thought that Aiden would be the first to break a bone as the twins tend to run around a lot more as they do not have all the equipment, tubes, etc. Over the past several days, they have really enjoyed themselves at a kid’s place called Going Bonkers and then we took them back to the Dallas Arboretum. The weather is finally getting nice and yesterday was the first day to reach at least 80 degrees since 10/20/2009 making it the second longest number of consecutive days in which the temperature stayed below 80 in Dallas. They also got their haircuts and, for the most part, seemed to enjoy it.

They love cars

…and climbing…

…and crawling…

Ethan wanted to make sure the white car was still there

The “candy machine” was also fun

Here he comes

Dad went down the slide and caught a picture of the boys

They loved bouncing around

The arboretum was beautiful

…and creative…

The boys love flowers

And getting to touch them was a lot of fun

Boys, get off the dirt!

Grammie had to supervise

It was hard to get them to look and smile

Such brothers!

Evan’s look of determination

Taking a short rest

Evan smelled the flowers

Ethan was not interested

Aunt Aleta took them for a spin

Ethan, don’t eat that!

Despite all of the beauty around us, they chose to play with a dead branch

Daddy and his little bear

…and a kiss

Ethan wanted to fly

Here comes Evan…

My babies!

We got them to sit still by giving them pretzels

Grammie and her grandkids from Texas

Evan was a little scared to sit on the branch

So, we added Ethan

And then Kaylan

More pretzels

Time to relax

Back home and time to eat

Evan gets a haircut from Grammie

He is anxious to get it over with

Ethan is done with his haircut

And gave me a smile

By Manish | Comments (0)

Spring?

March 21, 2010 – 10:34 pm

Day 69 (March 29, 10:00PM)
He is still on IV antibiotics (through his PICC line) to cover a post-op infection in the surgical site. This surgery was to close the j-tube site, which had basically turned into an ostomy site. He is dealing with behavioral side-effects from the drugs but overall the pain is better controlled on the newer pain medicine. Tomorrow they are going to meet with his primary GI physician and we will have a better idea of what to expect next regarding tests, timeline, etc.

His newest thing is saying “oh yeah baby!” See the video below to watch him in action.

Day 61 (March 21, 10:30PM)
After being discharged, Aiden was readmitted back into the hospital shortly thereafter. There were issues with his PIC line as the medications were clotting and he had to go back to the hospital to get it resolved. He will be there atleast through tonight and maybe even tomorrow night.

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If April showers, bring May flowers, what does March snow bring? The boys loved watching it snow and couldn’t stop talking about it this morning.

Spring is certainly off to a strange start. It snowed. Aiden is still in the hospital. And our medical system and taxes are about to change thanks to Congress. I am starting to miss Winter

Here are some pictures from the last couple of weeks.

Spring?

This does not look good

Ethan, what are you up to?

Please don’t touch that!

Stop, you are scratching my car!

Yes. You!

So, I took the stick away

And the other one came along

Back to letting air out of the tire

He loves this

And now he succeeded

But Grandma fixes things

I licked my fingers and tried removing the scratches. Evan saw and tried to imitate.

There goes the ball

Boys, don’t even think about it

Evan loves the outdoors

Now he barks orders at Ethan

But Ethan knows that his bark is worse than his bite (although he does bite quite hard)

Time to play kickball

Action shot

Don’t pick it up!

Twins

The “oh my goodness” look

They love to clean

A yummy meal from McDonalds

Got Ketchup?

Grandma feeds her little bear

Ethan combs her hair

By Manish | Comments (0)

Out for a walk

March 17, 2010 – 11:00 am

Day 57 (March 17, 11:00PM)
Aiden is still at Boston Children’s Hospital. He had a rough day as he was in alot of pain. At one point, he had a fever of 103 degrees and it took quite a while to reduce it.

Additionally, he has pulmonary edema which is an abnormal build up of fluid in the air sacs of the lungs, which leads to shortness of breath. This is most likely a result from the surgery, the pain and other associated factors.

Please keep him and Hannah in your prayers. As you can imagine, she is quite tired and it will take him some time to fully recover.

Aiden Update: 3/16 10:30PM
Thank you all for your prayers! Aiden is such a little fighter, he never ceases to amaze us! He is so tough!

He had not one, but two trips to the Operating Room (OR) today. Initially, he came out of the OR earlier this afternoon, following the jejunostomy closure. That procedure went very well, and he has an amazing surgeon and awesome anesthesiologist (handpicked by the surgeon) who did a great job.

He ended up going back to the OR for placement of a PICC line (a type of central line). The second time around was definitely a little harder, but Aiden is such a champ! He eventually made it to the Recovery room and tonight he and Hannah are staying at the hospital. Hopefully, the wound will repair quickly and he will be back to “normal.”

Of course, the long-term remains unknown. Our hope and prayer is that he eventually stops vomiting. Please pray to this end. Thanks!

Aiden Update: 3/15 10:30PM
The surgery will take place tomorrow at 9AM. Please keep him in your prayers!

Aiden Update: 3/13 2:30PM
The surgery date is fast approaching (Tues., 03/16). This procedure will be to remove the j-tube and close up the jejunostomy site in hopes that it will help alleviate some of the pain and perhaps help with the intermittent obstructive events that Aiden continues to experience. The surgeon will also use a flexible scope to look around the intestines to see if he can find any other cause for Aiden’s symptoms.

Of course, the downside to that is the question of how we effectively feed him without the j-tube. Right now, as long as he is consistently on pain meds, he does not throw up. Once we start weaning the pain meds, the vomiting will return and it will be difficult to ensure that he is getting the proper nutrition, and also difficult to protect his lungs from aspiration.

Please continue to pray that the doctors will be able to identify and diagnose the problem before it causes further respiratory and other issues.

On a lighter note, last week Aiden and Hannah enjoyed a day out of the hospital to run some errands and get Aiden’s hair cut, thanks to another Dallas-area family that they have met at Children’s while in Boston. Carter is just a little bit older than Aiden and is a multvisceral organ transplant recipient. Aisen was thrilled to ride in their “truck” (big SUV), and Hannah and Chelle enjoyed the chance to get some fresh air and go to Walmart for diapers and other essentials!

This weekend is rainy and cold in Boston, but no snow. Aiden has been asking to see the sun, but it sounds like it will be some time before we are able to grant that request!

Aiden Update: 3/10 11:30PM
The J-tube surgery is scheduled for next Tuesday…finally! Other than that, there is not much else to report. He has good days and “not as good” days but has been more of his old self lately.

Aiden Update: 3/08 10:30PM
The surgeon informed us that he would rather wait till next week before performing surgery to remove the J-tube. He really wants Aiden to be back at his baseline and is being very cautions (even if it means being overly cautious). Hopefully, it will be early in the week.

Aiden did have a couple of good days and was his old, cheery self! Thanks again for all your prayers!

Aiden Update: 3/07 10:30PM
Hopefully, this coming Tuesday, Aiden will have the surgery to remove and J-tube. In the meantime, he has been enjoying his freedom away from the hospital. This weekend, he even got a haircut!

Loving it

Aiden Update: 3/05 8:30AM
Discharged! Yesterday afternoon, Aiden was released from the hospital. He was very happy once he realized what was happening and kept saying “go buh-bye…go buh-bye…”

Hopefully, the surgery will take place sometime next week but Aiden (and Hannah) are very happy to leave the hospital (at least for a little while). The pain is still an issue but regardless of whether he is in the hospital or not this is an issue. It is primarily a problem when he is trying to pass something.

Please pray for the pending surgery and that his issues would be sorted out.

Aiden Update: 3/02 11:00PM
It looks like it will be another week before the surgery The surgeon is concerned that the skin around the J-tube site is weak and needs some time to heal. Trying to remove the tube and then patch up the flesh would could cause a fistula (an abnormal connection between an organ, vessel, or intestine and another structure). He wants to move very cautiously with Aiden and also wants the lung to have a little more time to heal. They are considering releasing him from the hospital for a few days if they can figure out how to manage the pain.

Today, he was happier than usual. In fact, he even laughed a little (see the video below).

Aiden Update: 3/02 7:30AM
They did not make a decision yesterday (Monday) on whether or not Aiden was ready for the surgery. But, hopefully, they will follow through today and at least review his overall condition and make the assessment accordingly. Yesterday was a better day as he was more comfortable and even smiled a couple of times! Of course, Aiden not smiling is like water not being wet so he must have been absolutely miserable the last few days.

There is a short video clip below that shows his happy moments. Please pray that the medical staff would finally make a decision and that the J-tube surgery would take place this week!

Aiden Update: 2/28 10:30PM
(We will continue to post daily updates of Aiden at the top of the most recent post and the rest of it will be the regular triplets updates.)

Tomorrow is an important day as they will determine if Aiden’s lungs are strong enough for him to be anesthetized. Please pray that this is certainly the case because the J-tube wound is not going to get any better until the surgery. He is a bit of a basket-case as the narcotics make it difficult for him to get much sleep.

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Today is the last day of February and what a month it has been! There never seems to be a break when you have 3 two-year olds (one of which has chronic medical issues).

It has been quite a while since we had nice weather. This past weekend, it got up to 60 degrees and the boys were excited to finally get outdoors again.

Besides battling with allergies, they are both doing very well. They miss Hannah and Aiden but get to talk to them on the phone every day. The latest craze is the garbage truck. On Friday morning, their Grammie takes them in the car and follows the garbage truck. They love watching it dump trash; probably because they too like to dump things around the house. Of course, any mess they make is their responsibility (usually).

Grammie and her boys