Update July 31st

I am sad to report that the test results didn't come back as expected. Its taken me 2 days to find the words to try explain my dispair and extreme hurt in knowing my little  AJay isn't getting better. His results revealed that his Malaysia is severe. Both Brochial and Trachial Malaysia are in extreme state of disabling Ajay from ever being able to get off the ventillator at his current settings. His lung has not improved since July 12th, his vent settings are higher, his secretions are extreme and he is being suctioned every 30-60 min. and his feedings are intermittent because his bowel and intestines are not doing their job, which cause him extreme pain and discomfort.

At this time, we are trying to think about his quality of life, his life on a ventillator and trach and whether or not a trach would make his breathing any easier, preserving the trachea. We are more than devestated by this news we received late Friday night, and are doing everything in our power to get several opinions medically and spiritually for the next steps.

We met with the Palative Care team here at the hospital and are arranging a team meeting for Ajay and his continued care Monday and Tuesday.

This (as you can imagine) has been the most difficult time for both Paul and I.  We continue to believe that God will lead us and Ajay to a peaceful answer.

Update July 28th

Ajay had the CT scan today which revealed another mass on the SVC (subclavian artery) compressing it and making it more difficult for blood to pass through adaquately. As before with the large blood clot on his lung, they are unsure if its fluid or blood. We are scheduled for another bronchoscope Friday at 130pm, in which they will be able to take pictures and see up close the mass and what its made of. Its positioned near the aorta so the pulmonary team feels confident they will be able to tell us what this is. The test will also help remove mucous plugs in his lungs, tell us about his airway and possible improvements with steriod use, and be able to also tell us the condition of his airway (bronchial and trachial malasia).

I will be able to explain more tomorrow after the diagnosis has been made. At the initial test results were discussed, the doctor said he was pretty sure they wouldn't do surgery, and judging by the size, he felt it may be something that could be reabsorbed.

I will be sure to update the blog upon the findings of the test tomorrow.

Update July 27th

Well, I headed to Ajays room today and as I rounded the corner, I saw little brown eyes peering out :-)  Ajay had his eyes partially open and was somewhat aware that I had walked in. I was amazed that he was still and yet not thrashing about his bed. WHAT A WONDERFUL START TO MY DAY!!! He is still sedated but for the first time peeked through at sounds coming in from the surrounding areas. He quickly closed his eyes and has remained quiet all day.

There is still no progress on his lung but I can honestly say that seeing his eyes for a brief second made this mamas heart very happy. Its been 2 weeks and 2 days since admission, with 2 prior admissions with all the testing we had prior to surgery. We have only been in the USA a short 4 weeks and to see him this morning was the best ever.

Tomorrow we are scheduled for another CT scan to examine his lung and chest cavity to make sure there isnt any clotting hiding or hanging around his lung. And Friday,he will have another bronchoscope of his lung depending on the CT results. Since yesterday, they have increased and changed his meds for his lungs and added steriods. We are not only treating the lung that has collasped but the Malaysia and hopefully to strengthening the bronchi and airway.

Thank you again for all the prayers, gifts, emails, txt and letters of compassion and concern for our Ajay and family.

PS to everyone who has apologized for calling AJay, "Judah", its really okay because that is his middle name! No worries :-)

Update july 25th

I am sorry for the late update. I have lost my Internet here on my floor of the hospital, and had a terrible time trying to get the IT dept up here...at any rate, I apologize for the delay.

 

Yesterday was a tough day. Ajay had trouble with his jugular line, and they had to take him to the cath lab to inject dye to insure that it was placed again properly. When they injected the dye, they found the Subclavian artery

occluded on the right side of his heart.  When the blood flow was lessened, it reverted back to the path of least resistance and flowed the other direction. That being said, he was taken immediately to the operating room to have a stint placed to open up that artery.

 

Our little boy has had 3 surgeries in 2 weeks time. He is not yet responded any further in his lung capacity, or has shown any signs of it being inflated. All of the doctors and surgeon have tried all kinds of therapy, meds, respiratory meds and treatment,etc without any improvements. He is a very sick boy who needs continued prayers to continue to fight.

 

The plan for today is to meet with the pediatric physical therapy team to prevent further atrophy of his muscles, to meet with a pulmonary expert who specializes in pediatric lung diseases, and to keep him comfortable. The meds are tough on his body, keeping vital organs asleep too long is also a hardship. If we don't keep him sedated, he can be very fidgety and becomes angry. He was so angry yesterday, he pulled on his wrist restraints so hard, that the had to replace the IV and give him 2 stitches to keep it in place. Sedation is a must, but at the same time, it prevents his bowels to work, his stomach and intestines are asleep, and his breathing is shallow and slowed. Respiratory is "venting and conditioning him" with higher breathes to increase his volume 4 x a day. This is kind of like exercising his lungs to expand to help open the lungs and enable him to increase breath sounds.

 

It has been since his clot was removed on Friday that he has not made any progress on this lung. The doctor said that in his 17 years experience that he has NEVER had a child that didn't eventually open his/her lung...with time.

Rejoyce!!!!!

Its 220pm on Friday and the surgeon just came to tell me that Ajay definitely had a very large clot on top of is lung. He removed it and Ajays lung inflated and his oxygen levels jumped to 80%!!!! His levels were never that high even with oxygen, EVER!!!!

He will begin to let him rest, and start to ween off the vent immediately, but keep his pressures low for him slowly begin breathing on his own. We are definitely on our way to recovery!!! Let the healing begin!!!

Through this hurdle, I realized that his heart was not an issue ( directly. )The doctors have never once been overly concerned with his heart or recovery. His heart repair has been excepted and his body tried to heal...He was here for open heart surgery, and ended up with a lung condition as a result of his surgery. His heart keeps pumping through it all....its amazing how Ajay has yet overcome another hurdle.

Breathe everyone a sigh of relief!!!!! Praise the Lord for watching over Ajay!!!

I will post later on his progress and recovery tonight. He was just brought back to his room, so I should be able to see him very soon.

Thank you for all the prayers!!!!

Update Friday July 21, 2011

Ajay had an okay 24 hrs. His stats continue to fluctuate but appeared more stable at times. His fever continued for quite sometime, but was controlled by tylenol, no cultures were reported positive, so no real reason for the fever. The doctors keep reporting that is normal for the surgery he had.

The problem with all of this Ajay isn't getting better. He has been on the vent for 12 days without the ability to ween him off due to this lung issue. We had a CT scan, chest ray, ultrasound, blood gases,  etc. and found that the right lung was obviously still collapsed, but there were 2 options...if the fluid was in fact just fluid, they could tap the area and get it out.   The second option was if they felt it was a large blood clot they would have to do surgery. They did find one interesting piece of information, from all the tests and second bronchoscope, and that was the mass is outside the lung, but encapsulated on top of the lung, hence compressing it. After a long night, of prayers and deliberation, the nurse phoned me at 730am, and said the surgeon is going to operate on Ajay today at noon to remove the "mass" that has been lurking on his lung. This is good and bad news, as yes, he will be able to remove this mass and be on his way to recovery. The bad news is we are starting completely over with the healing and recovery process.

I am hopeful and confident that our surgeon is going to make the right choices today and Ajay will be on his way once again.

Update Wednesday July 20

Well, the day started off well, Ajay looked "Not so puffy" and his fever was gone! He had been struggling with a fever for 3 days above 102 range with meds. So it was to celebrate THIS morning without fever!

 

As the doctors started to make their rounds, they said that there was no change in Ajay's right lung and that they would be doing another bronchoscope today. I of course signed all the release forms to do the test, in hopes of finding out why his lung isnt responding to treatment.

 

The test was performed, and with amazement, he failed. The results were no different than last week when they did the same test. I believe they are puzzled by the fact that his lung isn't responding...and they are not sure how to pump it up. They increased the ventillator, are using RT meds, chest PT, and suctioning fluids every hour if not more, to increase the lung or "inflate it" so that we can start to ween off the vent. As doctors furthered their study, they found that he still had the bronchial malasia deep into his lungs, which again, is a spongey like airway capsules that expand and contract with normal breathing. Ajay has compromised airsacs making it difficult for him to breathe. But, they say that that is also congenital, so he had it before the surgery....that doesn't tell us why the lung won't inflate other than the bruising it took during surgery. They now say that since the chest xray is still cloudy, they feel that there may be a large clot encapsulated between the lung and chest wall/ rib cage making it difficult for the lung to inflate. This type of clot isn't like the typical clots...it is not the kind that travels and with risks of potential harm...this is the kind that holds itself together, like a bruised filled sac, which happens to be on top of Ajay's lung. This is all speculation of course, but the fact that we were not able to start weening from the ventillator all week because of the bacterial infection, and bruising, collasped lung, makes me angry. I feel like we are waiting for nothing! If this is indeed a clot, then the course of treatment would have been so different. So all in all, we are still not sure why this lung is not responding. The cardiologist, was trying to call Dr. Bove for consultation since he was the surgeon who performed the surgery. I should here today what the next step would be...possibly wait again for the clot to dissapate, run more tests, rest, wait, and wait some more...very frustrating...

 

In the mean time, settings on the vent were increased due to the increased sedation to perform the bronchoscope. That being said, we didn't make any progress. Back to square one. All the progress we had gained in the last day was erased. Again, very frustrating...and no infection was hanging out in the lung. The doctors said that it was a good sign that the infection is more then likely either deeper than they can reach from the scope, or its in between the bruising and swelling of the lung.

 

Ajay has been so sedated that he is not aware too much of what is going on. He has only opened his eyes for a second, then off to sleep again. I talk to him and let him know how much everyone is praying for him, and how many people love him. He looks peacefully sleeping as I left tonight. He is beginning to itch a lot from the morphine and other sedation meds. His tolerance has been building to these drugs, making me a little nervous, but I do understand the need for his safety. He has to be able to leave all the tubes and lines coming in and out of his body ALONE :) I don't think any 2 yr old could just lie there without a little help. We put mittens on his hands and his restraints are still in place so he doesn't itch or pull out any tubes or lines. They are giving him Benedryl for the itching and it seems to work some. I

 

As I left late last night, his fever spiked to 102 again. Cultures were taken from every line, drain and opening to see what is causing his fevers. Again, doctors say its normal to have some fever after a large surgery like this and not be to alarmed. Culture results have not been released.

--

Update Monday July 18th

I entered the room today and saw Ajay under cool towels, only to
imagine that he couldn't possibly have a fever, could he??? Well in
fact he did, 102 throughout the night. Quite confusing for the doctors
as he doesn't have any infections. At least not now, as every culture
has come back negitive. They have taken 2 and they are tested for a
series of bacteria. Nothing. Nothing has shown up in 48hrs. He had a
low grade yesterday of only 100 and didn't think much of it. They all
classified that as "normal" and disrigarded any insight about
infection in any of his lines. Any site is a probable cause, but yet
no alarms went off. Well, again this am when I appeared and saw the
cool towels on his body, I was alarmed. Again, they are still not sure
why he has a fever, but since it spiked to 102 they did start a
different more broad antibiotic. (He has been on antibiotics since
surgery but this one was specific for bacteria)

NO news is good news as they say, so I am hopeful that he will just
beat the heat on this one. They are managing with typical tylenol.

All stats are continuing to drastically change with any movement onto
his right side, the effected lung. Chest x-rays are unchanged and
results of the damage and bruising are not responding to respiratory
treatments. Everyone is saying that it takes time to heal. In the
meantime, little Ajay continues to be on the ventillator, and has to
be suctioned several times an hour to remove course secretions from
both lobes. The doctors are adamant that the fluid build up is common
with this type of heart/lung surgery.

Stats continue to be monitored closely as they fluctuate regularly. No
change here.

Until tomorrow...

--

Update sat July 16th

The last 24 hrs have been quite trying...stats flying into the high 186  range for heart rate, and lows of 40. The nurses struggled throughout the night to keep him stable with a variety of meds and IV fluids. It seems as though the magic combination of fluids, meds, pressure, heart rates, blood gases, etc are yet to be found.

Over the last 2 hrs, however, Ajay has maintained all levels and even started to improve ever so slightly by. 6 reaching 36 for blood gases and has raised his oxygen to high 60's low 70's. Vent was decreased to 55 which was operating at 100% just 24 hrs ago. This is a first! Small gains but he is moving in the right direction. The doctors keep saying to move at his pace. I'm glad they finally figured that out, that Ajay is not a typical kid. Therefore his numbers aren't going to be so typical. Low gases, O2 levels, etc are what he as lived with his whole life! They are finally realizing what is normal for him and what he tolerates best. I was happy. The doctors agreed not to push him, and when he is healed he will be ready to move forward.

Although it appears gains have been made, stability is key. These numbers can fluctuate soooo much, I was hesitant to post the readings. So take today with a grain of salt and a small victory to be recognized.

He is eating from a feeding tube and tolerated it nicely, with good bowel sounds. This is a good sign that he will be waking up inside organs to start functioning again. Another small gain. :-)

For my special friend in China....its a "no blood day!!!"  (Ajay didn't need any transfusions today!!!!  My special friend was praying for this last night)

Until tomorrow....

Tests results Thursday July 14, 2011

There is good and bad news today...the good news is his lung is just severely bruised and limited amount of drainage was present. So, he will need time to heal. On a not so good note, they found that he has Bronchial Trachial Malaysia, which is a softening of the airway. The doctors were not giving us too many options at this point except to let him rest. We do know that there are options from meds to a trach, as well as keeping him sedated can be hurting his other organs being in a sleep state for long periods of time, giving us fewer options to maintain his nutrition. If his organs are "sleeping" then there is greater risk for organs to take longer to respond and heal.

It appears that one thing relies on the other to function....we need his lung to get stronger, to be able to handle breathing on his own through a spongy airway, and it be able to handle eating after his stomach and intestines have been sleeping. Seems like a big circle. At this point, if the machines are breathing for him, to keep him alive, it limits his ability to use his airway independantly and he isnt able to compensate like he has for the last 2 yrs, keeping that airway strong. Its worked for him this long!

Hopefully we will be able to understand more tomorrow...I hope this makes sence. Any medical friends have any insight I would welcome any thoughts or opinions.

Thank you for all comments and prayers! I am not able to respond to your comments because I can't figure it out, so please bare with me :-)  I appreciate you!

Update for Thursday July 14th

Nothing has changed since last post. AJay remains on the vent and breathing for him, and his right lung is still in poor condition. The doctors are going to take a small scope, insert through his breathing tube, and scope and inflate his lung, all while they spray the lung with meds to loosen heavy secretions. They said it would happen around 1130am today, but at 1pm, nothing has been started.

He had another tough night which required more medication and sedation. I don't think he knows what's going on and is seemingly not in pain. The doctors feel that this is part of the process and not to be alarmed. The concern is his right lung. If the scope doesn't work, then they will try a different round of meds.We need to get the right lung inflated, so we can work towards removing the vent.

Ajay is peaceful today, resting quietly and not stirring about. Its the calmest I ve seen him since Tuesday. New drugs were introduced, although it seems they never run out of choices, to calm him after a hard night. He has responded well to them so far, but they can't be taken long term.

I will be sure to post the results of the bronchoscope (sp?) when notified.

Surgery update July 13, 2011

First I want to say that my husband and I are overwhelmed by all the prayers and notes of encouragement from both our US and China friends.

Our day began yesterday at 6am, checked in and they took us back to pre-op room for sedation, vitals, etc. They took Ajay back promptly at 730am. The procedure was sketchy in. Y mind but our surgeon, Dr. Above, had everything ready to go. Although risky and complex, he tried to assure us of the many possible outcomes of which were truthful yet hard to comprehend. We never thought we could lose him,  but knew it was reality.

The surgeon proceeded to explain the procedure...they were going to work on his right side first, making a partial pulmonary artery from the many collateral, measuring less then 2mm, but removing some and creating 2 gortex conduits to carry blood from his lungs to his heart. He said its like taking angel hair pasta and turning it into lingiuini.

In this process, we learned that he would need to be put on a heart lung bypass machine, that would breathe for him and keep blood stable through out his body. He felt that Ajay would not be able to sustain himself unless he did this.

He was going to make an incision on his left side, verses through his chest because of the placement of the collateral in his body. ( he couldn't reach the collateral, or vessels in the from because of the defect, everything was located in a different location) Also, the bypass machine in Ajay,'s case could not be utilized in any other way, then by entering his right side.

In doing so, the right lung had to be manipulated, moved and tossed around a bit throughout the morning, to be able to complete the procedure. Ajay's collaterals were positioned everywhere throughout his right lung, anteriorly, but more so posteriorly.

From start to finish, the entire procedure was about 6 hrs. He continued to be on the bypass and ventillater throughout the rest of the night.

Knowing how his lung was manipulated, it made sense why his lung has now collapsed. The nurse said it was from the work to create the pulmonary artery on the right side of his lung and heart, but nonetheless it is somewhat dangerous.

Today, Wednesday, I am told that AJay has fought them all night. He is not liking the meds to keep him calm and even had to restrain his arms from pulling at the equipment, IV and other tubes. He had lost a lot of blood and is having difficulty breathing in a normal rhythm, which effects his blood gases, pulse oxygen levels, respiration, etc. Meds are given continuously to help keep all acids and bases stable as well as heart and lung functions and of course keep him calm to heal.

We are grateful for the work our surgical team has done, and Ajay is alive. But we have a ways to go. We are not out of the woods yet.

Ajay is a fighter and all of you reading this already know he has overcome so much in his life at such a young age. We know that this is going to be a struggle for him but we also know that he will continue to heal in his time. He is fighting drugs that would keep adults in a coma for weeks, so that tells me he will continue to be fighting for his life. He refuses to let the vent breathe for him. He refuses to lie still He refuses to give up! I love him for that strength and courage and think that he is here to teach us all something more...

Many have asked specifically what to pray for, and felt that prayers would be needed in all areas, but thought that knowing the physical state may help everyone see how Ajay's condition right now is very unstable. I hope I was able to provide you with a better picture of what Ajay needs right now.

As of 10am today, we were told that since his lung has not yet recovered, he will continue to be on the vent and bypass machine and will also continue to receive red blood cells and platelets to keep him strong, and to help him replace the blood volume lost.

Today we will watch over our little boy sleep and continue to pray for Him to heal his heart.

Happiness

Happiness

One more video! Soooo easy to do too....even for a busy Mama :) Enjoy!

Outside fun

Outside fun

Trying my hand at making a small video to be able to share with friends in China and beyond! Hope you can view as the pics were taken on my cell phone, so its not the best quality, but you can see how wonderful Ajay is! :)

July 5th Surgery Update

With much surprise and emotional devistation, we were notified today at 1:20pm that our Ajay's surgery was completely cancelled. After a 3 hour wait in the waiting room and 5 hours of driving, with no food or drink for 15 hrs, Ajay still remained a champ. He played and walked up and down the stairs of the waiting room, gripping the hand rails, as if to prepare for a marathon. (he has never experienced steps with us yet) Although I was beyond upset and disappointed, there was another little person in the hands of our surgeon who needed prayers and dedication. Another little person's surgery was scheduled at 7:20am today, and was still in surgery when we were told ours was cancelled. He/She had serious complications and our surgeon made the decision to let us go and reschedule. But somewhere, someone else needed prayers today.

 

As of now, we are rescheduled for next Tuesday July 12th and will be the first surgery of the day. I am guessing 730am will be the operating room time, but needs to be confirmed.

 

Thank you for all prayers, txt and emails this morning!