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!