Aiden is back!

Aiden and Hannah finally came back home yesterday afternoon after 3 weeks at Boston Children’s Hospital. Aiden’s g-tube surgery went well on Friday, and although he did have a bad reaction to the anesthesia and a rough couple of days afterwards, he is now recovering and healing well. He continues to vomit multiple times a day, losing good portions of his feeds now that he is again being fed into his stomach. Although we have ruled out a number of possibilities, we still do not have the answers we had hoped to find.

There is a possibility that we may be able to try a special medication for him called Cisapride, which is only available through a limited access program in Boston. It is possible that this medication may help minimize some of his symptoms (we will not know unless we try it for approx. 2 mos.). We will not know if he is approved for it for several weeks, and then we would have to return to Boston to administer it. That is the only option that we have for possible treatment at this point, and of course, there is no guarantee that it will work for him. Please pray that Aiden will be able to keep more of his food down and that the persistent vomiting and increased volume will not cause any major respiratory issues as it has in the past.

We posted several images of Aiden’s journey to Boston as well as some of Ethan and Evan below.

Also, we are actively looking for a new babysitter/mother’s helper now that Dana has gone back to college. Please pray that we will find a good replacement ASAP (they will have big shoes to fill as Dana has been wonderful)!

The resp. therapist and Aiden had a date 30,000 feet in the air

People came to entertain Aiden with their music

Aiden and all his EEG probes (he looks like something from Star Wars)

What a colorful pony tail!

The little Sheik with his turban

Grandma came all the way from NY to play

Grandpa was there too!

Meanwhile, the twins battle over the phone (their favorite toy)

Here comes Evan

He loves to chew on everything

Ethan, what is up there?

And now its time to relax

Oh no, why the crying?

Because he wants to get out of ‘jail’

Evan looks ferocious!

Ethan invades the pantry (he decided it was time for a snack!)

Boo has such big eyes

Ethan is simply adorable…and the shoe is very tasty!

Learning to fetch :-)

Evan looks pensive

Ethan peruses the local stocks

So happy to hear that Aiden & Mommy are coming home!

Evan is learning to feed himself…sort of

Ethan too…

He is so happy to be back!

Evan curls up on the couch

Dana has been such a wonderful babysitter this summer….we will miss her as she goes back to college

One of Aiden’s many new faces

Such a happy little baby!

    Surgery (G-tube)

    Tomorrow (Friday) morning Aiden is scheduled for surgery to have a G-Tube inserted. It is a surgically implemented feeding tube used to provide nutrition into the stomach. We have gone back and forth as to whether or not to do this over the past few days. Per the advice of our pulmonologist and pediatrician, we decided to do it in hopes that it will help Aiden.

    Once the G-tube is in place, he will be fed primarily during the night when he is sleeping which will reduce the likelihood of him vomiting. During the day, we will try to feed him by mouth to help him overcome his oral aversion.

    This has been a tough decision and there seems to be no right answer. There are risks if we do it and risks if we don’t. Hopefully, removing the tube that is currently in his nose will make things better for him to where he will try eating again.

    If the vomiting does not stop, then the next step would be to administer a drug called Cisapride. It is known to be a very effective drug in assisting with gastrointestinal issues. However, due to safety concerns it is not FDA approved and can only be administered one place in the United States: Boston Children’s Hospital. This is because it has been known to be potentially lethal in certain cases and has to be administered in very small doses under the supervision of medical staff. So, if Aiden does not improve within the next few weeks, then there is a good chance we will have to go back to Boston and administer the drug over the course of a week. Even then, there is no guarantee that it will work.

    Please continue to keep him in your prayers…

      Still waiting…

      This has been a long week for Aiden (and Hannah). Yesterday morning, they did a high-resolution CT scan and today the pulmonary radiologist will review the scans. Hopefully, there will be some type of conclusive results. Right now, there is nothing definitive as everything looks good. In the meantime, they are working on trying to get him to eat without his feeding tube and see how he does.

      While the first week at Boston was great, this week was not as good. By that we mean that the level of care left something to be desired. The doctors that we specifically came to see have been great but the staff has not. The residents and fellows have minimal knowledge and little patient care and with the nurses it has been hit and miss. One nurse even turned off his oxygen by mistake in the middle of the night by mistake! Please continue to keep Aiden in your prayers.

      The plan was to have a family meeting early next week with us and the physicians and discuss what the next steps will be. Unfortunately, one of the primary doctors we came to see will be out of town (this we just found out yesterday). So please pray that someone would take a closer look at all this and try to put the pieces together and come up with a sensible solution and game plan. It has been frustrating these last couple of days. It is one thing if they try and try and can not come up with anything because then we can be confident that they did everything they possibly could. But right now, we don’t feel like that is the case.

      As far as Ethan and Evan, they are doing great. The only exception being, they seem to be getting up during the night lately. Not sure why (maybe they miss their mommy and little Aiden). Some images are posted below.

      Also, we are looking for a new babysitter to help with the kids as Dana (our current) is leaving at the end of the month to go back to college. Dana has been outstanding and we will all miss her greatly! Please pray that we can find someone ASAP to replace her.

      Thanks!

      The twins in their little ship

      Little Pirates indeed!

      Uh oh, there is mutiny aboard!

      So, we moved over to the chair…Evan is making a phone call

      The boys want to go outside

      We always knew they were comic book characters

      Finally, they made it outside

      Evan thinks of all the possibilities

      Ethan seems disgruntled

      They check the area out

      Evan is loving this

      Ethan is not too sure about it

      Now he gets it

      And there he goes…

      Ethan liked his little walk

      But he hates being on the grass

      Evan is enjoying himself…

      …really enjoying himself

      So adorable

      Evan, you look mischievous

      Time to go back inside

      Evan has a milk goatee and is upset

      But Cheerios makes him happy

      Ethan likes his too

      And he loves his toys…

      Baby feet

      Evan is cranky and needs to go to sleep

        Aiden Update

        On Wednesday, they performed a triple scope which included a laryngoscopy, endoscopy and bronchoscopy and took biopsies and cell culture samples from the lungs, esophagus and stomach. They were successfully able to extubate him and he spent in the night in ICU as a precaution. He did develop some atelectasis (a collapse of lung tissue) in his right lung from the procedures. On Thursday, they did an EKG, echocardiogram, saliva gram, upper G.I. series with small bowel follow through, modified barium swallow study, abdominal ultrasound and a chest x-ray.

        So far, some of the results are pending but for the most part everything looks normal. The larynx does have a valley in it which could be a laryngeal cleft but this really depends on who is making the call (this can be quite subjective). Either way, they don’t think that this is causing all the problems. From the cell culture of the lungs, preliminary results showed iron laden macrophages which indicate there was slow bleeding into the lungs over the past couple of months. At this time, it can not yet be determined to what extent this could be causing his issues. They did also recommend a host of cardio consults given that he is still on oxygen and given that there is some blood in the lungs.

        Although they can not pin-point anything yet, they are extremely thorough in their thought process and execution which has been very encouraging. We are confident that he is in very good hands. Please continue to keep him in your prayers. Specifically, that he would continue to have good care, that the atelectasis would resolve and that they can properly diagnose and correct his issues within a short time.

        Ethan and Evan continue to grow, eat and dominate. There are some updated pictures below and a short video clip of Aiden having the time of his life. He is a happy boy and gets along with everyone. But no one can make him laugh like Evan. They seem to have a special bond. In our conversations, Hannah and I now refer to Aiden as “the head.” As shown in the video, he is all head! Some mornings, it literally looks like it has grown overnight.

        Thanks again for your prayers and thoughts!

        Three of a kind

        Ethan and Evan make an alliance in the kitchen

        Aiden, let’s play some football

        He is so adorable

        …and so handsome (and he knows it)

        Ethan likes to carry things in his mouth

        Boo!

        Hey Ethan!

        This looks like trouble

        Evan loves to stand and clap

        Mom has her hands full!

        We love you Aiden (even though you pulled your feeding tube out)!

        The ambulance came the day he went to Boston

          To Boston (note below)…

          NOTE: SOME OF YOU HAVE DIRECTLY LINKED TO THIS POST AND THIS IS PREVENTING YOU FROM SEEING THE OTHER UPDATES.
          PLEASE VISIT: VERITAZ.COM/JOURNAL/FAMILY TO SEE THE MOST RECENT UPDATES.

          On Monday (August 4th), Hannah will be taking Aiden to Boston Children’s Hospital. It has taken quite a while to get all this worked out, but our insurance company agreed to have him taken via air ambulance in a small commuter plane. The plan is for him to undergo multiple tests and procedures throughout the week to attempt to determine the cause for his recurrent vomiting. There is a great deal to do in preparation, so we are very busy trying to get everything ready!

          Everyone is doing well. Manish has been very busy with his new position at work and the boys are all growing so quickly. They have gotten to the point where they were moving the gate that confined them (breaking out of ‘jail’ ;-) , so we the entire living room has now become their “domain” and they have much more room to play in. In the video below, you can see Ethan and Evan rolling off the couch onto the mattress. They absolutely love this game!

          Also, you probably noticed our brand new blog. We decided to roll the triplet blog into a new one designed for Manish’s photography business (Veritaz Photography). Things are still under construction but it was time to switch. The images and video clips are larger with more detail and overall, it has a cleaner look and feel. This will also allow specific comments at the bottom of each post. By default, the link that sent you here will only show posts for the triplets but if you want to see wedding pictures, etc., then you can view them by navigating from ‘Categories’ at the top of the page.

          Well, it’s time to pack and get ready for the very busy week ahead. Please keep us in your prayers, particularly Aiden. Please pray that God will give him the right doctors, nurses and technicians, and that He will give them wisdom as they try to diagnose and treat Aiden. Pray also for safety during the procedures that Aiden will have on Wednesday (08/06), when he will have to be intubated and put under general anesthesia, that he will not have any adverse reactions or complications. We hope and pray that the doctors in Boston can figure out what the cause of this issue and take care of it once and for all.

          God Bless….

          Oh, and leave a comment!

          Ethan is driving already!

          Still driving

          Evan, are you stuck?

          Such big eyes

          The prisoners want to get out of jail

          Aiden, are you planning on helping them?

          The boys love when daddy throws the blanket on them

          Evan is completely out

          Ethan is so happy

          What a strange expression

          Evanly Boo

          Aiden, what happened to your hair?

          I guess he really likes it

          Evan likes to hold his leg in the air

          Ethan is contemplating a jail break