April 12 - a turn for the worst

We had a great morning, as Ajay was signing, mama, asking for water, and asking "where's daddy"and even asking to play angry birds....when about 1pm, his oxygen levels started to drop significantly. He was in the low 40's when they had to bag him to keep him breathing. Blue in color, they immediately ordered an angio CT to see what was going on. ( less invasive than a heart cath so soon after open heart is not recommended )

It was found that the conduit and shunts that were placed on Wed are now occluded  or blocked, which means that his left lung isnt receiving adequate blood supply. One of two things is possible....the collapse is a direct result of the lung reinflating after surgery which is a good thing, but has also pushed on the shunt enough to create a blockage OR its collapsed solely by a complete blockage due to blood clots within the shunts or conduits which is his main pathway of blood supply to his left lung.

Ajay will be going back in for open heart surgery at noon Fri so they can see what's is causing his drop in oxygen levels.

This came as quite a shock as you can imagine, especially since he was doing soooooo much better than he did in July thru Sept 2011 with the same procedure on the right lung.

Please pray that the doctors are able to save his lung, and shunts can be rerouted or moved to give Ajay optimum oxygen levels, and further move towards a healthy recovery. Ajay needs his lung...he only has 2/3 of his right lung, and needs his left to fully function. He can live on 1 and 2/3 but not 2/3 alone.

I will post tomorrow as we are informed of post-op results.

April 11, 2012 - Surgery day

We were on schedule for Ajay's open heart surgery to actually be a
reality. After 3 cancellations and minor illnesses over the last 6
months, we are finally here! Ajay was waiting patiently for this day
as we all held our breaths to make this a success for him.

I was nervous to see him go down that long hallway in his little red
wagon, only to find my little boy turn around and smile gently, and
wave. He reassurance amazed me as I explained it was time for him to
have his heart fixed. He nodded as if he totally understood...then got
into the wagon. Its truly amazing how children react to things, and
sometimes I wonder if we instill that panic. I was calm and so was he.
He never cried and waved to everyone as he was driven off in his wagon
for the operating room.

The surgery start to finish was about 6 hrs. going in at 730am, and in
recovery at 145pm. He was prepped by nurses, attached to his many
medications, and was resting by 330pm when we were allowed to see him
at bedside in ICU.

We were greeted like celebrities and were amazed at how many people
remembered Ajay, saying how much they missed him and what a wonderous
miracle it was to have him with us. They kept reminding me how very
sick he was on our last visit, thus making it apparent that he was
doing much better this time around. It was very comforting to know
that these professionals had taken to heart how much he had been
through last time.

We don't know the outcome of the surgery yet, but these next few days
will be the tell tale...we continue to believe that Ajay will push
through the rehab struggles ahead and we will be right by his side to
make it as easy as possible.

That being said, the surgeon was very pleased with the procedure, but
as his disclaimer, said we will have to wait and see. He was much more
confident this time vs last and it was reassuring to see his smile
when he was speaking about Ajay.

Ajay is resting peacefully. Thank God.

More tomorrow,
Carrie

PS I don't have cell service in the ICU and have to go outside and
down 10 floors, so those who are txt, please be patient with
responses!!! :)

New Date

April 11, 2012 is the new surgery date...this time has got to be the one, right????

We are hopeful that Ajay will be able to continue to maintain his health and that no other issues will arise between now and then. So far, his cold is almost gone and breathing treatments have decreased. Hes been very happy the last 24 hrs...lets keep it that way!

I will continue to post as we get closer to April's date.

Carrie

 

March 9th - Surgery canceled

Well, as luck would have it, Ajay came down with a chest cold 24 hrs before the surgery with "crackling" in both lower lobes. We went to the hospital Wednesday for preliminary testing, as instructed only to be sent home hours later.Previously, I called the nurse to let them know earlier on Tuesday about his cough. No one seemed alarmed since he had no other symptoms, and related it to the change in weather. I followed up with chest xrays completed at our local hospital, to make sure it wasn't bronchitis or pneumonia. All came back negative. I called the nurse again to tell her the results, and the nurse said they would not cancel over the phone, and still needed to see Ajay on Wednesday am to make the final call. So off we went bright and early Wed. am as instructed. The docs said it was risky too have open heart surgery with a chest cold. (I knew that was coming) and that we would have to reschedule. 

In the meantime, we will continue with breathing meds every 4 hours as well as antibiotics, hoping he can shake whatever has got him down. Obviously, if its viral the antibiotics won't help, but if its bacterial, he should be on the mend sooner. 

I should be receiving a call today from the nurse to reschedule the surgery.

Thank you for all the prayers!

Carrie

 

Wednesday Jan. 25, 2012

Since arriving here at the hospital Sunday night, Ajay has has been treated for cellulitis infecion around the gtube site. There is extreme redness, swelling, and is very painful. However, there is no drainage, which makes the diagnosis of the infection becuase they are not able to culture it to see what antibiotics will work best. So, they started 2 different antibiotics to cover most skin infections. He has had some side effects but is doing pretty well overall.

The GI specialist noticed that the mickey button that was placed last Tuesday may be too tight, causing friction and room enough for infection to grow. So, Thursday,he will place a s-lightly larger button so that the skin under the button has some room to breathe.
Assuming all goes well, we should be released on Thursday pm.

So now we wait.....



New surgery date for Ajays open heart surgery is March 9, 2012.

Since Dec 6th, Ajay has put on 2# and with new setback, it will give us 5 more weeks to help him gain another pound or two. He doesnt really show too much interest in food nowdays, but is holding down 1100 calories which is a large accomplishment for us. He is not allowed to attend preschool, but hascompleted the IEP process, and will be able to receive services here at home.

Update Jan 22, 2012

We were settling in for a nice weekend with our family, our last before Ajay's surgery quickly approaching on Tuesday 24th, and i saw that since yesterday his gtube site was really red and swollen since the night before. I took him to the local ER todsy at noonand they sent us to the bigger hospital where all his specialists are, and also close to the surgeon. ( i felt as well as the docs for ajay to be closer to surgeon now vs transfer him later if there were complications)He has an infection, and needs antibiotics through an IV for several days. I will stay here with him, until the infection clears. Needless to say, the surgery for Tuesday is canceled (again). I will be sure to update soon when I know more.

Carrie

Today is the Day

Ajay awoke with a smile, not really since he hates mornings...,as I tried to explain today is the day were traveling to have his heart fixed. He looked at me and signed "car" as he does like to go for rides in the car. He quickly became a bit more pleasant, as I packed up the car with his last minute supplies. We traveled to the hospital for all the preliminary tests at 6 am this morning, which were needed prior to his open heart surgery tomorrow. 

The new hospital was amazing, state of the art and only opened 2 whole days!  We were there 6 hours, and were told surgery is canceled. Ajay has lost 6 lb. since October and has not gained an ounce since his g-tube surgery on the 11th of November. Although devastated, I am more frustrated beyond words... no one knows the planning involved in all of this....we moved Christmas and celebrated on Dec 3rd, planned and prepared meals, changed jobs schedules, lined up "help" for the other brothers, hotel/lodging reservations, informed so many people of the needed prayers, a plethora of doctors appts to ensure accuracy of the decision to operate sooner than originally planned, etc. and they assume its not a big deal to cancel...like I ordered a pizza or ordered flowers and will be back later to pick it up....PLUS, they insisted that we take every single test today, and didn't tell me until the end of the tests that surgery was canceled. I felt as though they had significantly wasted my time, and put Ajay through the ringer unnecessarily to only be sent home. These are the same exact tests that the cardiologist does every 2 weeks. So, they decided last night (yes LAST NIGHT) that Ajay's surgery would be risking his recovery time, and overall survival, and felt it was in his best interest to wait 6 weeks for Ajay to gain some weight. They said they wanted to see me in person to see if I had any of the same concerns. I told the doctor I would have appreciated a phone call...(The cardiologist I saw on Monday, approved the surgery and said nothing about his weight loss concerns, as well as the GI specialist on Wed, who also voiced no concerns....the ONLY one is who had voiced concern was the Pediatrician who said to me on Fridays appt, "they are all okay with the weight loss?" "and "they are still going ahead with the surgery?" I dismissed her concerns, after-all, the cardiologist was the specialist!!!)

We are at a catch 22 here...if Ajay doesn't gain weight, we will need to still have surgery because of the severity of his narrowing collaterals (that can't wait til summer) that can cause many many complications, on top of the fact that his entire right lung is alone circulating blood to his entire body. The left lung and side of his body was the area that they needed to concentrate on Wed. surgery. So even in 6 weeks we could still be at greater risk for his overall outcome if he doesn't gain weight (and it isn't just a feeding issue anymore it would become increasingly life threatening).

I hope and pray that Ajay will be able to gain the weight needed to heal for his up coming surgery, although no dates have been set. I just returned home and thought you all would be wondering how Ajay is doing.