update aug 28th

Ajay is doing better and no longer on CPAP since Aug 25th and only on high flow O2 at 7 liters. Stats are in the high 70's low 80's. All IV's are out as well :) he's like a typical toddler now with more stubborn attitude and vigor! The next step will be to try food soon and wean tube feedings to more of a pediasure like formula. He's been on a special formula for certain proteins  called "portigen" (sp?) So hopefully the transition and his tummy adjusts to the new formula. I believe that he is still having some withdrawals because of intermittent vomitting and sweating. He has been on so many drugs over the last 2 months that it wouldn't surprise me in the least. He had a rough day today with vomitting and just plain stubborn. fidgety, etc. and no way to make him happy. He calmed some later in the morning, then back again to being upset and uncomfortable.

 

If all goes well with the xrays in the upcoming mornings, and the lung sounds are better and less diminished, we are projecting to be discharged from ICU and into moderate care by the end of the week.

 

Ajay has been sitting up more in his chair, and does participate with PT a couple times a week. I worked with him this weekend playing with bubbles, books and simple games in bed. He still tires easily but does seem to have fun with the nurses. They are always bringing us gifts and checking in with us, even on their days off. He's got them all under his finger!

 

Thanks again for all the notes and comments of encouragement, and most of all prayers from around the world!

 

 

Update Aug 22

I apologize for a couple days passing for an update. Ajay progress has been extremely slow and I feel strange posting without some news. He still has good and bad days, and rests in between, tolerating all continued meds and treatments without struggle. He isn't in any pain and is such a happy boy through and through...

 

 In the last couple days, Ajay has been participating in PT and continued used of CPAP machine, and high flow O2. The good news is he has been able to wean down a tiny bit, and is tolerating less pressure. Today we wait for results of xray to see if his lung is still inflated or has decreased again. It seems as though his lung does well with the help of machines but quickly deflates, unable to withstand the pressures needed to breathe on his own.

 

Ajay isn't vomitting anymore, so I believe we are over the withdrawal stages of recovery. Although it was never officially diagnosed, I think his body was showing signs in more ways...but he is better in that regard and we are thankful. He still has feeding tube and a tube suctioning his stomach for air ( the air could possibly be increasing the vomiting with extra air in his stomach), as he is not able to eat until the CPAP and O2 levels are much much lower. These machines blow a tremendous amount of air into his stomach which will make him vomit. So, we are hopeful once the CPAP is weaned down, that we can have an ENT and swallow study done to make sure he is able to eat and withhold food and liquids without being ill.

 

I also have switched roles with my husband, and have returned home. I returned to work this week, and my boys started school and other activities. So I will only get to see Ajay on the weekends. Its been a very hard transition, but I know in my heart its the best thing to do right now. I will do my best to continue to update everyone!!

 

I am attaching a picture of Ajay during PT. Please don't repost on Facebook or any other pages....thanks!

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Update wed Aug 18

Weaning off sedation can be a gruiling process, and its trying for Ajay. Although not too sick, meds inside a body without food can be difficult. With all the secretions, suctioning has become quite the chore for the nurses, because it causes lots of vomiting. He's also had loose stools, another sign of withdrawal, but doing better this am. He had started PT on Tuesday and actually stood with Max asst of 2, just to start bearing weight again. Although extremely weak, he tolerated a step and then asked to stop.

His treatments on the CPAP are good, then bad, then good again...today's xray showed improvement but seems to quickly disapate. He is not strong enough to maintain full lung function or withhold air within the lung for more than a few hours.  (It quickly deflates)With continued use of treatments, we are hopeful that he will be able to breathe more efficiently and without distress.

Goals for the next few weeks are to progress as tolerated in PT, increase lung function, move towards removing PIC line out as well as feeding tube later as his lung heals, and continue RT to break up and remove secretions.

Update Monday Aug 15

Ajay did very well throughout night, but had dome alarming news this afternoon. Although blood gases and O2 levels seemed typical, some of the gases were not...xray revealed his right lung showed "dense collapse" due to his Malaysia, secretions, bruising of lung from surgery and of course the damage from clot, to name a few. He is still struggling to breathe, even while on high pressure oxygen levels.

Many have asked how this could be happening, and why is his lung is not better if he was removed from the vent? The best way I know how to explain it, is the pressures required for vent use are much different then the pressure required to breathe. So if Ajay was "sprinted" and did well practicing breathing on his own with back up support of the vent, he may still struggle when having to breathe without the same pressures, and in fact try to breathe totally on his own. When the lung was trained to inhale and exhale, it did just that, but when you have to do it all on your own is quite a different ball game. I asked the doctors several questions, and with all Ajay has endured with procedures and surgeries, its difficult to start doing everything on his own. He is going to have lots of good and bad days, days of struggle and hard work with respiratory treatments to try to strengthen his lungs to breathe room air levels without respiratory distress. To avoid being reintubated, I have asked that they do everything possible to avoid any invasive procedures like a trach unless, there are no other options. I believe with time, Ajay will be able to heal and overcome these hurdles and live a normal life. Until then, we are going to try a treatment called CPAP, which involves a machine to blow forceful air into his lungs through a tightly sealed mask, to hopefully pop open his lung. Along with his regular meds, percussion treatments, etc they are hopeful and with time, Ajay will heal. I hope and pray he will tolerate the mask.

Sunday update Aug 14

Ajay had an amazing night, stable and no episodes of extreme drops in stats. :-)
I'm holding him and looking at a book, which he signed for....all while watching Thomas the Train in the background. Its a good day for Ajay!!!

He has alot of secretions yet to come out, so were working with respiratory aggressively and will continue to work on his recovery.

Update August 13 part 2

Ajay  has managed thus far to avoid the reintubation, however we came close several times late afternoon into early evening of losing him. Our doctor, has been very very patient full knowing we are avoiding the vent again. Today we have seen Ajay struggle with thick secretions that meds have not been able to break up, exhaustion through countless attempts at suctioning and discomfort throughout every breathe. Its hard to say how he will tolerate the night, but would appreciate any extra prayers you could send for a peaceful restful night.

It took over an hour to regain normal breathing and stats. He dropped to the low teens for oxygen levels, and respirations doubled, indicating his fight for each breathe. He has made it and for that we are grateful. However, its more than hard to see him fight for every breathe taken today.

Its almost 8pm here,and Ajay is sleeping, with elevated respiration and oxygen levels stable for the moment. His color looks good and he appears to be at peace without pain.

I will post again soon...

Update Aug 13

Quick update....Ajay has been extubated since 1150am, and holding his own with oxygen support only. His O2 levels have waivered between 65-75%, which may not sound good to most, but Ajay functioned around 60% most of his life in the USA prior to surgery. We and the doctors think anything in the 70's would be terrific.

He has been sleeping since the vent/tube was removed, so he is resting peacefully.

More later...

Update Aug 12

Ajay had a day filled with dramatic highs and lows, of various stats dipping and racing, yet still with the ability to be able to continue weaning from vent, in the hopes to extubating Saturday morning. Yes! This is the third attempt, so we NEED him to succeed! If he fails, he will be reintubated and we will need to discuss further trach and vent dependant options for him. Although we visited these types of scenerios 10 days ago, we had hoped and prayed it wouldn't come down to this.

With the last 4 sprints, he failed the first, tolerated the next two but failed, and barely passed the 4th. So, that being said, we still have hope that Ajay will continue to make small gains and move out of this vent stage soon. Early this evening, he sprinted for 2 hrs vs the standard one hr, and did much better. His lung has shown improvement since the diaphragm surgery on Wednesday. His upper right lobe is still surrounded by air, but is much better according to the xray.

The plan is to extubate Saturday around 10-11am. If he fails, we will keep him comfortable until our regular team can meet on Monday. ( weekends have a new team of docs) We will have to revisit and talk about a trach and vent dependency options. If he succeeds, then we work on keeping him off the vent with regular respiratory treatments and lung conditioning, and work on strength, chest tube drainage, g-tube, etc. We still will have a few more weeks here for rehab and various treatment plans.

I will update tomorrow asap :-)

Update Aug 11

Today is Ajays birthday! We celebrated with a few room decorations, cake and lots of gifts from friends here at the hospital :-)  today Ajay turned 3 yrs old. He had a good day, visiting briefly with his 4 brothers enjoying a short visit with lots of hugs and "high fives". Ajay was awake most of the morning, so by lunch, he was ready for a nap and wasn't that interested in presents or games. We had the doctor write an actual order for a tiny taste of frosting, barely a micrograms worth, just to say we had cake! Although it was his first birthday with his new family, we tried to celebrate as best we could. He had a peaceful day and did well on lower vent settings.

Last night was a bit scarier, as we were called at 2am for a small procedure. Ajays stats dropped dramatically for no apparent reason. After bagging him, and several people attempting to bring up his heart rate,BP and O2, they ordered a chest xray stat. They found he had air trapped in the lung cavity that had to be released. (Pneumothorax) The fellow and cardiac surgeon on call warned that they would need to release this air immediately with a very large needle, injecting him between the rib cage to extract the air. The xray also showed the the new chest tube inserted while performing the diaphragm surgery, was slightly shifted anteriorly.  The surgeon quickly pulled back slightly on the tube, and a rush of air came pouring from the chest tube. They (after calling us at 2 am) thought that they would not need to insert a needle after all. The nurse caring for Ajay positioned him on his side and more air released....Ajay rested the entire time, although looking quite blue and peeked, he rested quietly the rest of the night.

Just another Ajay miracle.....

Plan for tomorrow? Wean from vent as tolerated, and hope to extubate in day or two :-) All blood gases and other "sprints" off vent have been tolerated with ease. The doctors are really taking Ajay in stride and doing what HE wants and tolerates.
(In case anyone needs clarification, sprints are when the vent is only supporting his breathes, and Ajay is totally responsible for inhaling and exhaling but has the vent as back up.)

Update Aug 8th

The plan was to take Ajay off the vent today, and with success Ajay did it :-)  we had some scary moments, low stats, gas levels, etc but he pulled through at 1130am today. He was really happy to be off the vent, although he couldn't speak, he appeared relieved of the discomfort of the tube. Stats varied throughout the day, with extreme lows and mediocre levels.He slept most of the day with only oxygen asst. He always seems at peace even when the tests reveal distress.

He went through the night still without the vent, until this am when at 7am we received a call that Ajay was in too much distress and they intubated him. THe vent is back...his levels are higher and is fully supported once again.

We learned late yesterday, that his diaphragm is partially paralyzed due to prolonged vent use, possible nerve damage from his open heart surgery, and inactivity of right lung. We were devestated. We thought we were on the road to recovery, as Ajay was in fact breathing on his own. The doctors were going to discuss possibilities of surgery to tac up the diaphragm asap. They needed to get in contact with our surgeon and weigh in with him. We will do what he surgeon recommends. Ajay needs his diaphragm to help with his inhalation, and when its paralyzed, the diaphragm remains in the same position, not allowing sufficient airflow into he lungs. It was also discussed that his life would be lessened if we decided against surgery, as well as the constant struggle to breathe.

It was decided late afternoon today, that we would go ahead with surgery. Wednesday, Ajay will have his diaphragm tacked down, enabling him to use more air into his lungs sufficiently. We are not sure of the time, but surgery will be performed by our heart surgeon.

Please, continue to pray for Ajay  :-)

Update july 7th

Ajay has continued to get better over the last few days, with minimal improvements on the xrays of of his right lung. Ajay continues to defy the norm, and is able to make improvements in all other areas. The doctors have given him another week, and as God has provided, he has again beaten the odds with improved blood gases, less sedation required to keep him comfortable, increased interactions with all of us, and his ability to communicate his needs through sign language. He has all of the nurses at his beckon call and all are smitten! He had his arte line removed, and his chest tubes removed early this morning! Everything is improving with the ever so slowly to heal right lung. The doctors are more confident then ever to start "sprints" and wean further on the vent pressures and asst. Ajay completed his first sprint yesterday for one hr and tolerated it very well. (Sprints are when they lower the dependency of the vent with barely asst at all) He has passed each sprint attempt yesterday and continues to surprises all of the doctors. He is sleeping more regularly and is doing better with day and night times of sleeping patterns.

If all goes well, the doctors are going to try to take him off the vent in a day or two!!!!
They feel that Ajays lungs were most likely born with lung disease, and were damaged since birth, having the large clot on his lung (removed) as well as 3 surgeries in 12 days made healing of his lung last on the list for healing.

I believe once his vent is removed and is off all support, and he is able to sustain himself for 6 or more hours without dropping in stats, he will be able to move to moderate care or the general population floor. :-)  That is this weeks goals!!!

Update Aug 4th

Small changes today, although a tiny bit of improvement in Ajay's right lung shown yesterday in his chest xray. Doctors are being much more aggressive towards his lung treatments, and actually were able to decrease 2 settings to "make" Ajay breathe and use his lungs more independently. Blood flow tests today revealed that he has 70% use of right lung and 30% use of left lung and that the heart surgery was in fact a success. Dr. Bove (surgeon) did what he said, and it was complete! Ajay is now receiving adequate blood flow to his right lung. I often wonder how much blood flow he had before? I also know that there is some tissue damage from lack of blood flow to both lungs...but as Ajay has proven his whole life...he adapted and lived with what he had. It still amazes me to think that he used less than half of his lungs combined, had a diseased heart and still managed to play, eat, laugh, etc without too much distress considering all that the doctors are continuing to find. Its truly a blessing to be here with Ajay. :)

 

Today he was signing more to the nurse, who in fact has a hearing impaired son, and she was very familiar with sign language. Ajay took to her quickly! She was impressed by all that he knew, and how well he could communicate his needs. Some decreases in sedation allowed Ajay to communicate easier today, with the intent to try to wean off all these narcotics. He did fairly well. He is having some withdrawals to the medications but is tolerating the changes to his body. He remains a fighter!!

 

All in all, small changes are still GOOD changes and he is moving in the right direction.

 

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Update Aug. 2nd

The meeting today regarding Ajay's quality of life, the vent and other complications went very well. Since yesterday, his stats have improved and a slight improvement to his right lung. It actually inflated a small tiny bit!!!  All the doctors were amazed! The doctors (16 or so present during the meeting) were very very optimistic that he would NOT be vent dependant in his future. They felt secure that the aggressive treatment to the lung over the next week would surely provide him the best chance at getting off the vent, and NOTHING about a trach was mentioned. I was so scared on Friday night with such devestating news and despair. I was not ready to make any decisions about wether we could provide Ajay with a good quality of life on a vent for ever. SOOO that being said, we now have HOPE!! They are going to aggressively treat him this week and hope to take the vent off within a week. Yes, next week they are going to take him off and see how he does! They said he has lived with severe malacia his whole life, that isn't going to change, but we need to focus on his right lung. I was shocked and amazed to see the thrill in the doctors eyes and to see thier sudden change in attitude and optimism. I prayed and prayed and asked God to just give us hope....and so he did. Ajay is by far out of the woods, but we were given hope today, and I will take it! Ajay is taking very tiny steps in the right direction!!! Thank You God!!