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

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

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

Hot stuff!

Time to play outdoors

Evan, blow some bubbles

This would make a great advertisement for TruGreen

Here comes Ethan and he has his ‘wand’

Watching out for the doggies

Loving the wand

They used it to dig at the playground

Evan loves being pushed in the swing

Ethan still likes the baby swing

What do you see?

Daddy and his babies

Another picture with Grammie

Time to roam the neighborhood

As always, looking for things to pick up

A new find: sticks

Ethan, you can’t take the street sign with you

Evan was looking for the perfect acorn…and there it is

Got it!

Ethan wants to run away

He surveys the damage from the snow storm

Update: 2/27 3:30PM

After realizing how much food Aiden was losing though the J-tube, the medical staff felt it would be very difficult to discharge him as he will constantly need the IV. Fortunately, his lungs are doing even better and he is weaned down to a 1-liter oxygen flow. On Monday, the anesthesiologists will review his status to determine if/when he is ready for surgery.

His morphine doses have been increased and this has certainly made him more comfortable. However, at times he shakes. We are not sure if this is from the increased narcotics or something else. Additionally, the increased dosage keeps him awake and he is hardly getting any sleep.

A week ago, he was hungry, dehydrated and was not getting enough sleep because of the pain which led to the thrashing that resulted in his IVs coming out. Oddly enough one week later it is the same set of problems but for different reasons: he does not get enough nutrition because of the increased leakage from the J-tube site and his sleep is reduced from the side effects of the narcotics. Fortunately, at least his pain has decreased.

It has now been 33 days since Hannah and Aiden when to Boston. Last year, they were there for about 12 weeks in total (almost 25% of the year)! Even so, we are very grateful that we have the opportunity to ensure he gets the best medical treatment possible.

Update: 2/25 10:30PM

His lungs have improved so much that the doctor thought she had the wrong patients x-rays. Talk about an answer to prayer! The medical staff is amazed at how quickly his lungs are healing. We know that his can only be because of the prayers that have gone up on his behalf.

However, the problems with the J-tube site and open wound have increased. The leakage is so bad that he is losing nearly everything that goes into his stomach. This prevents him from not only getting food but fluids also. All day he has been asking for something to eat and is very hungry. As a result, he will be on IV all night to ensure he stays hydrated.

Please pray that the doctors would have wisdom in terms of how to handle this. He simply cannot continue to not be fed as he has already lost weight and his body desperately needs the nutrition.

Thanks again for all your prayers and encouraging words. Some of you have asked about sending Hannah a message, card, etc. and the fastest way to send a message is an e-mail (this is the 21st century after all!). Her e-mail is hannah@privt.veritaz.com.

Update: 2/24 11:30PM

He is certainly a little trooper. Fortunately, things have not gotten any worse. Unfortunately, things have not gotten too much better. While his lungs improve day to day, it will still take sometime before they are ready for the J-tube (removal) surgery. Other than that, no big changes today.

Update: 2/23 9:30PM

Thank you for your continued prayers for Aiden. The good news is that the pnuemonia and air in his chest have dramatically improved, much more rapidly than anyone expected, and I have no doubt that it is due to all of the prayers on Aiden’s behalf. Now if everything else could be figured out and be taken care of… 😉 The initial plan was to keep him at least another day in the ICU, but they needed beds late last night, and moved 3 other patients out as well, so it was a long night for everyone…

His physicians discussed the possibility of him leaving the hospital in the next few days and coming back in a couple of weeks to surgically remove the J-tube. Of course, this is under the assumption that his lungs are completely healthy by then and that we have a way to control the pain.

Fortunately, he is getting his full feeds into his stomach. Typically, this would cause him to vomit a great deal but since he is on morphine, there is not vomiting. For some reason, narcotics suppress his vomiting. In the past two years, every time he received narcotics the vomiting ceased. None of the physicians we mentioned this to can accurately determine why this is.

Today, he was still in quite a bit of pain and even angry. Of course, he was being a bit naughty and had a Dr. Jekyll/Mr. Hyde combo going. Nevertheless, it is good to see him come out of his lethargic state. His poor little arms and legs are bruised from all the IVs. He has probably been poked over 20 times in the last week and has had to be physically restrained multiple times. Below is a picture of him that describes his attitude. Also, there is a short video clip of him saying “brave boy…brave boy.” The video was from a couple days ago.

You will notice that he is in his stroller. This is because he refuses to leave it and will not stay in the bed. It seems that the stroller is his safety zone and he will not get out to walk or be held (unless he has nothing left to fight). The poor boy does not trust anyone and clings to his stroller no matter what.

Please continue to keep him in your prayers.

This image describes his day

Update: 2/22 10:30PM Although there is still pneumonia, his lungs have improved and the air in the chest cavity seems to be resolving. Unfortunately, the wound around the j-tube site has worsened and become infected so they are treating it with antibiotics (he has been on course of four different anti-biotics). Additionally, this evening they moved him down to the floor as there was a shortage of beds in the ICU.

For some unknown reason, his heart rate was quite high and he was breathing heavier than usual and this is one more thing to keep an eye on. He was able to tolerate his full feed through the stomach (g-tube) so he is finally getting nutrition after a week of no feeds. Overall, he is better but there are still many hurdles to cross. Please continue to pray for God’s healing power and also for Hannah’s strength as the constant care she provides is very exhausting.

Update: 2/21 9:00PM Thanks so much for all your prayers. So many people have asked for updates and told us they were praying for him.

His left lung is doing better. The air leakage and pneumonia have decreased and his breathing is better. However, the pain has sharply increased. In fact, it is so bad that one of the physicians said that he had never seen a child in so much pain. The problem is he can’t really tell us the specific point(s) of pain so helping him becomes a great challenge.

This has caused him to be very angry toward everyone. The combination of lack of sleep, pain and drugs are taking a toll on his demeanor to the point where he screeches and grunts anytime someone comes near him. His voice is gone from all the screaming and crying so his noises of frustration/anger are reduced to a raspy moan. Despite all his hardships, Aiden has always been such a happy, lively individual but the situation has really taken a toll on his spirit.

We are encouraged about the lungs but please pray that the source of pain would be determined so the medical staff can deal with it. Additionally, please pray that they would keep him in the ICU for now. The level of the care on the regular floor does not have the resources to handle him.

Update: 2/20 10:30AM A little rest and a lot of prayer goes along way. Aiden had a good night and was able to finally get some sleep. While the pain is still there, the ICU personnel are consistent with his morphine (as well as other meds) and are much better equipped to handle his overall care. He even smiled a little bit 🙂

Of course, the pain is still there and he still cannot pass anything. This prevents them from giving his regular feeds. Furthermore, they are very limited with the IV fluids as there are not many places left to poke him. Additionally, there are the lung issues and how to handle his long-term care. For the short-term, the plan is to nurse his left lung back to normal and then remove the intestinal feeding tube (J-tube). This is a surgical procedure and therefore cannot be done until his lung is healthy enough for him to be anesthetized.

Thanks so much for your prayers. They really do make all the difference!

Update: 2/19 9:30AM – Aiden is finally being admitted into the ICU. His lungs look worse and he is very dehydrated as they are unable to find a good place to provide an IV (they can’t find a good vein to poke). Hannah was up all night and is very tired. Please keep them in your prayers.

Update: 2/18 11:30PM: The situation has steadily deteriorated. On Tuesday, they tried desperately to get him to have a bowel movement with no success. He grunted and pushed but nothing moved. The pain was unbearable for him and he kept screaming and crying.

The doctors have limited solutions and cannot find any type of obstruction that would cause this. In addition to not being able to pass anything, there is a tremendous amount of bile pooring out of the J-tube sight. So much that it is rapidly breaking apart the skin and causing it to bleed.

His feeding has been stopped since Sunday and he is also getting dehydrated as his IV constantly keeps coming out from the thrashing he does because of the pain.

They cannot do any tests on him until he passes the contrast and barium that is in his digestive tract. Of course, the problem is that they cannot get him to pass anything because of the obstruction (which they cannot diagnose until he passes it). This is a vicious cycle.

And on top of all this his pneumonia in the left lung is causing several respiratory issues. Tonight’s chest X-ray showed that he developed a pneumathrax (air leaking into the space between the chest wall and the outer tissues of the lungs) and a pneumomediastinum (air leaking into the mediastinum-the space in the thoracic cavity behind the sternum and between the two pleural sacs containing the lungs). Although he is stable, if these leaks expand it could put him into a critical state. Given that his pneumonia has worsened, we have to keep a very watchful eye on him.

Perhaps, worst of all, his spirit seems so diminished. He seldom smiles or laughs. He does not even want to put his shoes on to go for a walk or be held. In fact, he won’t even sleep in his bed. He will only stay in the stroller as that seems to be his comfort zone. Hannah managed to get him out just long enough for a picture (see below).

Whenever he has to go through another procedure, he keeps saying over and over “brave boy…brave boy…brave boy.” It is heartbreaking to watch your child go through this.

We are trying to get him in the ICU as soon as possible. Based on his history, more than likely he is going be there so we are pushing to get him in immediately.

It has been said that “Man’s extremity is God’s opportunity.” We are praying to that end and ask that you would also.

Yesterday evening (Sunday), Aiden had to be rushed to Children’s Hospital Boston via ambulance. He had a very high fever, was in constant pain and soon thereafter had a seizure. He was admitted, received an I.V. and morphine to reduce the pain. The morphine did help a little but last night the pain was so intense that he screamed and screamed for hours.

There were several nurses in the room trying to calm him down but unable to do so. His retching was so uncontrollable, the I.V. came out. Of course, given the long holiday, Hannah had to deal with residents who simply did not have the experience to deal with this. To make things worse, the attending GI surgeon that came to see Aiden and did not look very well. About 5 minutes later, she was throwing up in the room Aiden was staying in. She had a stomach bug that has been going around the hospital. One more thing to be concerned about. Translation: nightmare.

Please pray that the right person would be there at the right time to correctly diagnose his issues.