Happy Birthday!!!!

Today we celebrate the gift of life! Ajay is 4 yrs old today and we can hardly believe this last year. In retrospect, he has overcome more than any human being Ive ever met, and is still filled with laughter and smiles. He is one amazing boy who triumphs each and every day being himself without any misconceptions. He is our little boy!

 

We have a celebration planned with family on Sunday doing what Ajay likes best, (aside from Angry Birds) playing skee ball  and bowling at a local pizza and  bowling/gaming center with Thomas the Train decor! We are hoping his day is filled with joy and feels the love we have for him on this special day!

 

Its been a quite the challenge being home with Ajay, now 3 weeks. Hes had some problems with medications, feeding, ,vomiting and the like. He has been to all his specialists and they have said that his heart and lungs are worse. He is on increased doses and more maintenance medications to keep his heart and lungs operating "normally".  Its scary to think that his time with us is more limited, but we are also aware that only God knows....and His timing is always perfect. We are devestated to know that Ajay isn't getting better, but also happy that we are together as a family (vs the hospital) for as long as Ajay has with us. His condition and medical problems won't go away but we can still live, love him and create memories along the way.

 

He won't be going to preschool this year because of infection risks, but home school is definitely in his future. PT, OT, ST will be coming to our home, to help facilitate his strength and improve his skills. His decline since arriving home was sudden but giving him the benefit of the doubt, he can do it! He tries so hard, and with feeding weight issues, water weight, and little growth, Ajay has found it hard to move around as much, and lays down most of the day. I am hopeful this too shall pass and we will be able to see Ajay slowly improve his motor skills with work and guidance. His brothers are his biggest cheerleaders and motivators.

 

Please pray for continued peace and strength for Ajay.

 

Home at last

Although Michigan has been my home away from home since April 10, I was looking forward to sleeping in my own bed :-)  Ajay has done well with the drive home, and actually clapped when I turned into the driveway. His smile was priceless.

Since arriving, he has been vomiting again and rather frequently. Every few minutes and then every 30 min. I couldn't figure it out and felt so bad. He has had less episodes in the hospital and wondered why he was vomiting again. Only this time, I knew it was different. I didn't know how or why but it was different.

I checked over the zillion meds he's on, and looked thoroughly at dose, solution, etc. And there it was. One of the meds we were giving him in the hospital was diluted in his feeds, only to see that it was not written like that on the bottle. I called the pharmacy and she phoned the hospital and got it straightened out. Only then to find the vomiting wasn't ceasing. The only other thing I noticed was the antibiotic was changed the day we left the hospital. He got cellulitis around his gtube site on Tuesday and was taking an antibiotic. On Wednesday he received 4 vaccinations, which the site of injection became infected as well. So they changed the antibiotic from one to another so Ajay wouldn't have to take 2 more meds.

I phoned my pharmacist on Sunday and she immediately called me back to say she thought it was indeed the antibiotic making him sick. Unfortunately the half life of this particular drug is quite lengthy, and would take a other 2 days to get out of his system. I was able to get him some anti nausea medication, but it only helped for an hour. Then he went right back to wretching and vomiting.

Its Monday 430 am, and have since stopped antibiotic and Ajay has stopped wretching/vomiting. I'm pretty confident he will just need a day or two to recover.

Discharge planning

I had the discharge meeting and were on track to arrange discharge planning. Lots of things to order , arrange and prepare, but excited to say we are tentatively scheduled to go home next week on either Wed. or Thurs. (If all goes well til then)

Ajay got up for PT yesterday and walked towards the door, and kept going! The nurses all clapped and honored him as he continued down the hall. :-)  lots of tears :-)  but happy ones as most of us here didn't think he would be able to walk out of the hospital. He did so well as he held on to his fisherprice shopping cart.

He will need lots of equipment and medical care at home, and will still need a wheelchair when going places like doc appts and hopefully school in the future.

update July 6, 2012

Ajay has made progress in the right direction over the last 2 weeks
and is on track for discharge soon! We are now at 3 liters of regualr
oxygen and Bipap (full ventillation for support with a mask) at night
for 12 hours for complete life support. We are having the discharge
meeting on Monday and will discuss a new plan. In the meantime, RT
will be providing gear this next Thurs for me to learn and become
familiar with so that I can take home the exact equipment when we are
released. It will give me a few days over the weekend to study it and
be 100% comfortable before leaving the hospital. Since the last post,
Ajay had a sleep study because I noticed he wasn't breathing when I
was here late at night. After bringing to the nurses attention on
several occasions, they decided to do an actual sleep study. The
results were more complex than I anticipated, in that he was diagnosed
with Obstructive Sleep Apnea. The amount of support he now needs is
more crucial then ever to keep him breathing at night when in full
restorative sleep cycles. His respiration's dropped to zero 3x during
the study. So, although he is doing well in the day, he can breathe
regular oxygen in the daytime with bipap close by if he starts to drop
in his oxygen levels and respiration's. Even though its one more thing
to add to the list of Ajay's needs, I am glad we discovered it while
here at the hospital.

If everything continues to go well, our meeting will be Monday the
9th, RT will deliver equipment on Thursday the 12th, trial run over
weekend and continue thru Monday the 17th, with hopes to go home
either Wed or Thursday July 18-19th. We have tons to prepare for but
we are both thrilled that home is now coming to fruition.

I will update further details after Mondays meeting with the team.

June 22, 2012

I had a meeting with the docs on Wednesday June 19th and care team and
it was decided through the last week that there is not much else we
can do to treat Ajay medically. He will continue to be monitored with
cpap and high flow oxygen, and hopefully be able to wean off high flow
in the next 2 weeks. At that point we are looking to take him home "as
is". We have had Ajay one full year now, and in that time have spent
the last 6 months combined in this hospital. At this point, we are not
sure how much longer he has with us. He won't be able to tolerate any
other surgeries, so we are not going to tackle fixing his airway,
trach or diaphragm, hernia, or motility issues, and of course the
constant vomiting will also remain an issue. GI has investigated as
far as possible only to find that he has motility issues. If more
tests were completed with radioactive dye, and they did in fact find
the issue, they would not operate due to his weaknesses medically. The
team feels that he wouldn't tolerate another procedure with a positive
outcome.

So what does this all mean? We are going to live as normal as
possible, with certain limitations, but figure out our new normal.
Ajays life cannot be predicted nor changed. So we are going to live
one day at a time, and make the most of every day. The doctors gave
grim hope while others feel there is hope....either way, Paul and I
know that we have done everything in our power to give Ajay the very
best medical care. We feel Ajay is a strong boy who has overcome all
odds, and we also know what a fighter he is and always will be. No one
can say how long he has and as hurtful as it sounds, I am realistic.
Medically he remains a very fragile little boy on the inside but on
the outside, he laughs, plays, and signs new signs daily with love and
affection and attitude like most 3 year old toddlers. Those are the
things we are focusing on now. He is happy, loved and well cared for.
We're going to continue to love him to pieces :)

The plan looks like this...
week of june 19th high flow of 4, week of june 28th high flow of 3,
then 2 over 4th of July and simular levels then to room air at normal
home levels. With weans and gains in strength we will head for home
after that, if all goes well and Ajay can tolerate the weans. If not,
our last resort will have to be a tracheostomy. We will definitely
have another team meeting to discuss further options if needed.

June 11, 2012

Sorry for the delay in updating all of you. Lots of setbacks day in and out as Ajay has not been able to wean further off the vent settings. this last week, he has only been able to wean by 2 points since last Thursday, and today is back one setting to increase his oxygen flow. (variances occur between oxygen rate, flow and pressures) One night is good, and they push to wean another notch which results in2-3 days of termoil for Ajay and recovering from wean. Not much else going on here but waiting and watching as his body continues to make adjustments to breathe, take in oxygen and be able to maintain good blood pressures, respirations, and heart rates. Aside from his breathing issues, he plays and watches Thomas the Train, plays with his ipad, is bossy and just a riot most of the time as he signs for his passion "water". (Because of the frequent vomitting we had to limit fluid intake) He looks so good and its hard to imagine how difficult it is for him to breathe without asst. or have adequate pressure to his lung. He still amazes me everyday. He loves his nurses and interacts with them using new signs for each of them. They are so special to Ajay (and me!) and love the abundance and patience, as well as continued support of our new friends. The odds are always against him, but he continues to amaze everyone.

We still have chronic vomitting issues and further tests revealed everything is "normal" from a GI standpoint. The wretching and vomitting occurs frequently throughout the day and no one can seems to make any sense of it. Day by day we make adjustments and try very hard to make sure he is comfortable.

The doctors are hopeful and feel that although a trach was discussed, they all feel that Ajay needs more time to adjust, heal, and become stronger on his own timetable.

So that's just what we'll do....

Wednesday May 30, 2012

 Ajay did very well with his minor procedure on Friday, and my apologies for a delayed update. Ajay although pulled through fine with the gtube conversion to gjtube, he has been continung to vomit. As some of you know, this has been an ongoing issue since the end of our last stay here at the hospital last Sept. Throughout all the trauma and surgeries, no one has ever really addressed this issue, because the issues at hand were always his heart and lungs. Now that we are in a position to wean on the vent for the next month or so, I felt it was time to address this as well as his hernia. He has very painful bowel movements, problems with constipation, regularity, etc. as well as intermittent vomitting at any time of the day. After a couple of days of "observation" by staff, it was finally decided that we would have a swallow study done. It was completed today at 3 pm, and did very well. This was only one of many phases of tests but the obvious test is out of the way. He aspirated only a tiny bit with water, and ate and tolerated the necter and honey thickened liquids, then a graham cracker without any problems. 

Moving forward, but as slow as can be. We have only been able to wean by 2 since over last few days on pressure, and rate has slowly decreased. Ajay didn't tolerate wean at first so we had to ride out the last 3 days to see how he would handle it. And like Ajay does, he comes back to fight :) He was able to keep breathing without going backwards, and was able to maintain his settings. So yesterday we were able to make the first wean on pressure support and did tolerate it without any issues. So although extremely slow, Ajay is holding his own. At this time, we are not doing anything about his diaphragm because of risks involved in intubation and sedation. If he can breathe and tolerate weans from the vent, then we are going to stay with that plan. If he shows signs of needing the diaphragm, then we will address it. Remarkably, he is plugging away not needing much support from the diaphragm. As usual the docs are amazed at what Ajay can tolerate and still remain with decent oxygen levels, heart rate and respirations. He does have his moments but is able to come back on his own without too much interventions. We often wonder how low his oxygen actually was in China, since he seems to be able to function here with low levels. His body has compensated for so long and now has to readjust to yet newer standards since loosing his left lung and diaphragm. Its still a mystery how he is able to self regulate. However it happens, its Ajay's way :)

Friday May 25, 2012

Ajay was able to make weans on his BIPAP over the last 3 days by 5. (started at rate of 20, then 15, etc. ) and yesterday was EXHAUSTED. His little heart and lung was working so hard to compensate for the pressure, that he slept the entire day and night, requiring more pressure to inflate lung. Its not great news....pointing to our first week of "trial" on high flow oxygen during the day and BiPAP at night. So we are through week one with not much progress in that we will need to either wean slower, or go back and start again and wean from there. When Ajay has a hard time breathing after trials, it tells us he requires more to breathe, in which he doesn't make progress moving off the vent. 

If Ajay doesn't make more progress in the next week, we may be looking at a trach. I am not in favor of that procedure, but will do whatever it takes to keep him alive and comfortable. The BiPAP doesn't provide long term pressure as Ajay would need to support his lung. Its used temporarily then weaned to high flow and then to a regular nasal cannula oxygen tank. I am hopeful that he can tolerate a week of progress, even if so small, to avoid another surgery. His diaphragm may be the cause of the ability to inhale and exhale with good breath sounds. If we decide to go back in to fix the diaphragm, it will be another 4 weeks to get him where he is today. The docs and surgeons don't want him intubated, and sedated and are avoiding it at all costs.

That being said, with all the pressure to keep his lung inflated, he has been fed through an nj tube going through his nose to his intestine. We decided that if we can go home, without a trach, we would require Ajay to live with BiPAP day and night. The device is less invasive, but also prevents him from eating through his stomach as he did prior to admission. 

So, we decided today that he would have his current gtube converted to "NJ" 9Through the jejunumn in his intestine bypassing his stomach) so that we can continue to feed him through his intestine with good nutrition. When he is on BiPAP and CPAP, its impossible to eat through his stomach without vomiting. We are still having trouble with vomiting even through feeds in his intestine, so we have not figured out why that is occurring. We started motility drugs to help move stomach secretions faster through his intestine to avoid or at least decrease vomiting bile. I am hoping that once the tube in his nose is removed, it will decrease the irritation and also decrease gagging and vomiting. The procedure only took 45 minutes to convert, with minimal anesthesia and no intubation. 

I will post later today to report how he tolerated the new feeds on a more permanent basis.

May 20, 2012

Its been a long week, not only waiting but praying for an answer. Ajay was not making progress this week, and we once again had to decide on several things. Do we fix his diaphragm that had come undone last week, fix his feeding issues from gtube to GJ (feeds from stomach to his intestine) long overdue inguinal hernia and tracheotomy. All procedures require sedation, intubation/vent and life altering decisions for Ajay and his overall quality of life. Because of his lack of progress on the vent settings, it was brought up on Thursday to possibly trach him. For me, it was such a last resort and that both Paul and I wanted to explore all other options first. A tracheotomy is such a long training process, invasive procedure for Ajay, sedation/recovery, and 3 more months of being in the ICU. It just seemed like we were there yet, and it was painful to think about....So the decision was to continue to wait was now coming to an end without a goal in site. Ajay although happy as could be, still required too much pressure support for his lung to be taken off the cpap and bipap/vent. It has been 5 weeks with no progress on current vent settings. ( A tracheotomy would enable Ajay to move around but also give him the pressure support he needed, eliminating the pressure to go through his airway, making it easier for him to breathe. )

After long discussion with all respiratory therapists, and the cardiology team, it was decided that we would give Ajay 2 more weeks to make "his" move and guide us through these next few weeks. Everyone was in agreement. We would wait for Ajay to tell us what he needed.

Early Friday morning, I came in to see that Ajay was on High Flow oxygen with a nasal cannula at 10Liters of Flow at 50% support. His oxygen was stable in the high 70's and he was playing again with his toys sitting up. I asked what was going on and the respiratory therapist said, "were going to push him" and giving this a try to see if Ajay can pull his own, and we can see quickly if his lung can handle the pressure in a different way AND to see if he really needs the support of the diaphragm. (through his nose vs wearing a huge face mask). I sat and watched history being made as our little Ajay TOLERATED the high flow oxygen! Time passed, tolerating 1 hr, then 2 hrs, then 3, and then I said lets give him a break. They went back to the mask soon after I voiced my concerns, fearful of pushing too much and too fast. (pushing the lung to work too fast on its own could cause collapse within the next 24 hours) He slept for 2 hrs, and back on the high flow settings. He tolerated another 3 hrs and was happy as could be being free from that mask. He was able to drink water from a cotton swab and didn't get sick from swallowing. (another small miracle) He rested well that night as he worked hard most of the day. I stayed with him 23 hours straight to see if his lung tolerated the high flow. At 545 am, his xray was clear!! I couldn't believe it! There was no evidence at all of collapse! (Talk about a hail mary pass!)

Since Friday, Ajay has been on high flow, and talk of a trach has not been brought up. As of now, we are not going to repair his diaphragm, feeds, or hernia, until its absolutely indicated. He is doing so well at this moment with the pressure being decreased, that we don't want to rock the boat. We are definitely not out of the woods, but are heading in the right direction. 

Ajay has once again proved docs wrong in their predictions....generally patients who are on such high settings of CPAP and BIPAP don't go directly to high flow without weaning several weeks in between,,,,Ajay basically jumped from one machine to the other without a bridge!

So where do we go from here? Super small weans from high flow pressure and oxygen and let the lung heal and continue to get stronger. It was asked if we should repair the other things, but we thought that we would see how Ajay handles things first. The surgeries can always be done, but there is no urgency at this moment. IF Ajay starts having trouble breathing, or shows signs of CHF or collapse, then we will have no other choice but to go ahead with the tracheotomy.

Ajay's brothers came today to visit, and when he saw them enter the room, he let out a pleasurable scream! It was priceless!!! He signed all of their names and "brothers." 

I believe Celion Dion said it best, "The Power of Love..."

We hope and pray that Ajay continues to tell us what he needs for his best quality of life and happiness.

May 13th Mother's Day

Long week, and not much progress on bipap and cpap settings. He had a rough Thursday and Friday but is recovering nicely and is back on track. He requires constant air pressure to maintain good breathe and lung sounds. We are trying to wean settings, but at this time he is unable to maintain breathing without the machines at lower settings.  He still communicates with us via sign language and is happy most of the time. All his brothers came to visit today, on Mother's Day, and he was so happy to see them! He played with them for about 20 minutes and then fell asleep. Hes sleeping more, and his days and nights are a tiny bit mixed up, but is tolerating all respirtory treatments. When he sleeps, we let him sleep. I feel that he gets the best healing when he is sleeping.

 

PT,OT and Speech are on board and are working with him as he tolerates. He continues to maintain good sitting balance, then rests, then tries again to sit up on his own. He has made progress in that area, and will work continuously on his breathing and maintain good oxygen levels while sitting up. Its very difficult... and its a very slow process. We will continue to be in ICU until he can breathe without the machines.

 

We have a long road ahead....

 

In the meantime, I have joined the YMCA and am preparing for the other boys to join me this summer for camp here at the hospital and surrounding city. The city offers many activities and funding is available for hospital families. I think they will enjoy the camps as well as the other various activities that the YMCA offers and of course seeing their brother will make them all very happy. I want to be able to try to make their summer as "normal" as possible.

 

Happy Mother's Day!!!

 

 

 

May 2, 2012

Sort of at a stand still...plateau....not much progress but Ajay is plugging along.. and not getting any worse. Respiratory Therapy, OT, and PT are actively involved in his care and are treating him as he can tolerate. Respiratory is in very frequently for breathing treatments and trials on CPAP and BIPAP. Its going to take time and lots of patience and healing. No one has any prognosis and are learning from Ajay everyday that sometimes, text books are just that...books and not people. So they are going with Ajay's speed of healing and continue to look forward since small tiny bits of progress are still in the right direction. So we will continue to pray that his partial lung can sustain him and he has the strength to make it happen. It could mean several more weeks but we are here for the fight, standing with Ajay, because if anyone can defy the odds, he sure can.

Many have asked what to pray for....

-continued ability to breathe with ease and without anxiety or fear

-strength 

-patience and guidance for the doctors, nurses and cardiac team

Thank you for the notes of encouragement. They mean so much to us!

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!!! :)

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