Sunday April 29, 2012

Happy Sunday! My boys were able to come and visit Ajay, and he signed "brothers" and went to sleep.They stayed and we watched a movie here in the ICU and they went home later today. Pretty uneventful but not much parting aloud in the ICU these days...It was just nice to be with everyone under one roof even if for a short time.

 He has been having some withdrawals and 3 year old like behavior, which seems to be one and the same...at any rate he has plateaued in progress but stable. He has been craving water and it getting upset when his amounts of water are very limited. He is able to sort of drink from a pink swab from the nurse. But we have to be careful so he doesn't aspirate or choke. His blood gases continue to be strong within normal limits and his breathing sprints on BiPap and CPAP are going well. His biggest hurdle right now is his wean from narcotics. Slow but sure and we'll get there....more waiting....

Still praying for Ajay :)

update April 25, 2012

Ajay is moving along, although at a very slow rate, he is making small baby steps of improvements. He has tolerated feeds, thru his intestines, without vomitting. He has been tolerating the small weans from bipap, and has been able to tolerate weans from sedation and medication. Although uneventful in the last 24 hours, Ajay is in charge as usual :) and we will continue to pray he can make these small changes in order to get stronger. We have a long way to go, but we are definitely moving in the right direction.

April 22, 2012

Ajay had a rocky day, lots of ups and downs and trouble regulating a normal breathing pattern. He had change in CPAP and BiPAP machines all attempting to regulate his breathing. He was thoroughly exhausted and his body couldn't fight the machines anymore, so he finally gave in and let the machine help him take good breaths. It may not sound too stressful to most but to witness a small child struggle for each breathe is daunting.

They also had to place an NJ tube to start feeds again, but instead of using his gtube, they wanted to feed him directly to his intestines, which required placement of a thin tube through his nose  passing through his stomach and into intestine. Again, not an easy task. It took 4x to reach the exact spot and required 4 xrays to ensure placement or in this case to try again. Pulling on this tube in and out of his nose is very uncomfortable. He became distraught, causing irregularities in heart rhythms, and oxygen levels. After 4 attempts over a few hours, they decided to leave the tube in where it is and see if naturally moves towards the intestine from all the pressure from the bipap. The nurse did a wonderful job. However, they are going to continue TPN feeds one more day and start feeds in his intestine tomorrow. (Its safer for feeds to be inserted directly into intestine vs stomach because of the amount of pressure and air being forced from the BiPAP, which will induce vomiting. They obviously don't want that to occur.)

Respiratory treatments every 2-3 hrs and chest percussion...followed by suctioning....

Then he had a 2 hr echo and was bothered again , all while on the BiPAP machine. This mask on the BiPAP encompasses his entire nose and mouth with a seal so tight it can cause skin breakdown. (overtime)The amount of airflow in this mask is like driving down the highway at 60 miles per hrs and hanging your head out the window!!!

He ended his day much quieter than it began. He's resting now and I am grateful he is much more comfortable.

Its a Big Day for Ajay!! April 21, 2012

Ajay had a big day....his 2 chest tubes were removed, and he WAS weaned off the vent!  They sprinted him earlier today (kinda a trial run) and he passed!!! They decided that since he did so well, he could be extubated!!! They extubated him (took him off the vent) around 3 pm and although he struggled some, due to controlling his blood pressure and heart rate due to high blood pressures ( HR up to 175) and treated with meds so that his heart and lungs wouldn't have to work as hard. Being off the vent for the first time, he did well, but quickly was put on C-PAP for high pressure airflow to his lungs. I believe the left lung is only inflated partially on the upper lobe, and the right lung is working hard to inflate middle and lower lobes. He will be on this C-PAP device for a while, then weaned to high flow oxygen, then eventually weaned to regular oxygen. Not sure how long that takes, but if I remember correctly, it was about 2 weeks last time....at any rate, its fine. We (they) will wean as he needs it and won't reintubate unless he isn't doing well. So far his blood gases are coming back within normal ranges. Thank God!!!

The next few days will be filled with lots of percussion and suctioning to clear his lungs of the natural secretions that protect the body during trauma. Three open heart surgeries in 3 days is quite the "trauma" for such a little person AND who has one working lung with blood flow. 

Ajay will also start feeding again soon, but at an extremely slow rate of course.

Please pray for Ajay not to struggle to breathe. Breathing is something we all take for granted. Ajay's normal breathing is like you and I breathing through a straw....and his straw is smashed ( due to malasia). Try it...its quite hard :) Ajay is used to that rate which is amazing, but now he has only one lung to overcome his same breathing pattern. (which I can't even fathom!)

Thank you for all the prayers! They ARE working!!!

April 19th a set back

I was here with Ajay as he was resting and noticed about noon today that he was becoming discolored, looked much more blue and puffy. I said to the nurse that I felt he was "different" looking. His O2 was in a good range, his vent settings were good and they even started his feeds. When I alerted the nurse she saw what I saw, and called the doctor over to take a look. He agreed that it could be a possible blood clot at the svc, which was sutured during his latest surgery. He was presenting with only some of the classic svc symptoms, and still remained in good standings on blood draws and cardiac output. The doctor ordered an US and it wasn't able to detect any blockage. The medical team felt that they would not be comfortable with another open heart surgery, and felt we could treat it like a clot with medication. So, now we wait to see if his symptoms will improve overnight. ( decrease in swelling on right side and less blue)

The svc is so thin and already sutured, and repaired as best as they could and so very fragile, that they do not want to go back in too soon.  They feel that the artery could blow if manipulated anymore at this point. (Risks would be high for bleeding out, and inability to repair.)

I am not sure what tomorrow will bring, but today was a hard day. Ajay  struggled too much. We had to stop feeds, increase meds, and start new meds for possible clot.

I hope and pray we have a peaceful night. I will update tomorrow.....

Update wed April 18th after midnight

Technically its Thursday, but feels to me like Wednesday, just arriving at my hotel after spending a very long day with Ajay. He's wasn't doing so well Tuesday, and had relearned today that he has lost his entire left lung function due to the failed procedure last week. Enduring 3 open heart surgeries in 6 days, it amazes me, although cautiously optimistic, that he is strong and able to now be weaning down from vent settings. I watched him all day sleep, wake to only wave at me, give me a thumbs up and to fall into a deep sleep again. No complaints or unusual occurrences.

One minor bump, if you all remember, last summer, he had a stint place ed in his SVC ( super vena cava) ? Well, it was found early am today that it was twisted, or had been mangled during one of his surgeries recently, through an echo test. It showed he had limited blood flow through that vessel but was making its way to the other side of his body to compensate. (Ajay has one on each side of his heart, where typically people have only one svc, he has two. Having two ,the doc said, probably saved his life because the blood had somewhere to go) After pondering over an hour, all the doctors decided that it was best to let Ajay rest, since it was not causing him harm, irregular heart rhythms, etc. The blood has found another route to pass through for now, the second svc on left side of his neck, but we may have to have that stint reinserted in the catch lab at a later time. His blood pressure has been stable all day, oxygen levels stable, and all blood gases were also stable, indicating the choice to hold the catheter procedure prooved to be the correct decision for now.

All in all Ajay has yet again amazed the medical team here, and everyone has done an amazing job treating Ajay for his needs and even with his crazy anatomy, they continue looking at the patient vs just treating the condition or symptoms blindly.

I hesitated to write earlier because i needed to somehow be reassured he was going to be okay. He is doing exceptionally well, but is not out of the woods. I am confident though that he is definitely fighting a fight like never before :-)

Surgery #3 update Tues April 17

Just informed at 4pm that they are sewing Ajay up as I type this. The surgeon said , "he always gives us a run for our money". Dr. was pleased with the shunt revision  and is hopeful that Ajay will be to heal. Ajay has a long way to go before he's stable, but he made it over the first hurdle.

It will probably be another 2 hrs before we will be able to see him, but will update everyone as he progresses through the night.

Update April 16th

Our meeting was today at 4 pm and the cardiac docs and fellows were pleased with small gains made over last 24 hrs. Vent settings were weaned, meds were decreased and Ajay was a bit more alert. He came off paralytic drugs and kept him sedated comfortably, in which he could move around but wasn't struggling or in pain. He was able to sign freely
:-)

They (we) decided that Ajays best chance at pulmonary blood flow was to put in a larger shunt on the right side of his lung, which was originally inserted last year. Increasing the shunt would give Ajay the ability to compensate for loss of his left lung function. The risks are high as any open heart surgery, but they feel the risks are slightly less because the ground work has already been laid. The flow from the conduit, shunt and collaterals are working well, and have been since last summer. The docs feel that since the right lung is already functioning, inserting a larger shunt isn't as traumatic as starting from scratch as they attempted on the left lung on Wed.

Open heart surgery is scheduled for Tuesday at 9am.

I will update everyone as Ajay enters recovery.

Surgery update April 13,2012

Things are somewhat grim for Ajay. We spoke to the surgeon and he reluctantly told us there is nothing more he can do. Ajay, and his left lung have run into problems. He had to disconnect all the shunts and conduit that were placed Friday due to extreme clotting and blockage. The amount of blood traveling through the shut T's were too much for the very tiny vessels, or collaterals to handle, resulting in extreme clotting through the entire pathway. It left the surgeon no choice but to take it out. Ajay's collateral were few, and very tiny for the surgeon to work with. He said the collateral were at best, as big as a tip of an ink pen, at its widest point. He also said they were so weak, that it was the consistency of tissue paper. The amount of volume of blood needed to run through the shunts could not keep up with the tiny openings to flow adequately. So the blood clotted because it had no where to go.

So Ajay now has lost more left lung function then he came in with on Friday. Its no ones fault, its just that the surgeons had very little to work with from the start.

So where do we go from here? Ajay will only have an estimated 10% lung function on the left assuming he recovers and they can keep him stable. The surgeon suggested since we are here, to close him up for now, and meet with other team members to see if its possible to go back to the right lung, and make that opening better to be able to handle blood coming from the left side as well as maintain adequate pressure for both sides. The team will run more tests to see of Ajay can with stand another open heart procedure, loss of blood, extreme clotting issues, etc. And then be put on a heart lung machine to see if right lung will be able to handle the flow for both lungs. The left lung is no longer able to with stand normal lung function. Although he will still have a lung, it will only function at 10%. With that in mind, Ajay only has 2/3 of his right lung functioning, so this extra load from the left lung will definitely be extremely more difficult for Ajay to breathe.

At this point, we are not sure of the outcome, but know Ajay will give his best fight. Until the team makes a new plan, Ajay will be sleeping deeply to avoid any stimulation, so that he would be able to breathe peacefully.

I am sure that the team will make a decision after tests are completed and blood studies are taken into consideration. Lots of data will need to be gathered before a definite answer will be given. Our surgeon wants to be absolutely sure that we are giving him the best odds.

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!!! :)