Today is the Day

Ajay awoke with a smile, not really since he hates mornings...,as I tried to explain today is the day were traveling to have his heart fixed. He looked at me and signed "car" as he does like to go for rides in the car. He quickly became a bit more pleasant, as I packed up the car with his last minute supplies. We traveled to the hospital for all the preliminary tests at 6 am this morning, which were needed prior to his open heart surgery tomorrow. 

The new hospital was amazing, state of the art and only opened 2 whole days!  We were there 6 hours, and were told surgery is canceled. Ajay has lost 6 lb. since October and has not gained an ounce since his g-tube surgery on the 11th of November. Although devastated, I am more frustrated beyond words... no one knows the planning involved in all of this....we moved Christmas and celebrated on Dec 3rd, planned and prepared meals, changed jobs schedules, lined up "help" for the other brothers, hotel/lodging reservations, informed so many people of the needed prayers, a plethora of doctors appts to ensure accuracy of the decision to operate sooner than originally planned, etc. and they assume its not a big deal to cancel...like I ordered a pizza or ordered flowers and will be back later to pick it up....PLUS, they insisted that we take every single test today, and didn't tell me until the end of the tests that surgery was canceled. I felt as though they had significantly wasted my time, and put Ajay through the ringer unnecessarily to only be sent home. These are the same exact tests that the cardiologist does every 2 weeks. So, they decided last night (yes LAST NIGHT) that Ajay's surgery would be risking his recovery time, and overall survival, and felt it was in his best interest to wait 6 weeks for Ajay to gain some weight. They said they wanted to see me in person to see if I had any of the same concerns. I told the doctor I would have appreciated a phone call...(The cardiologist I saw on Monday, approved the surgery and said nothing about his weight loss concerns, as well as the GI specialist on Wed, who also voiced no concerns....the ONLY one is who had voiced concern was the Pediatrician who said to me on Fridays appt, "they are all okay with the weight loss?" "and "they are still going ahead with the surgery?" I dismissed her concerns, after-all, the cardiologist was the specialist!!!)

We are at a catch 22 here...if Ajay doesn't gain weight, we will need to still have surgery because of the severity of his narrowing collaterals (that can't wait til summer) that can cause many many complications, on top of the fact that his entire right lung is alone circulating blood to his entire body. The left lung and side of his body was the area that they needed to concentrate on Wed. surgery. So even in 6 weeks we could still be at greater risk for his overall outcome if he doesn't gain weight (and it isn't just a feeding issue anymore it would become increasingly life threatening).

I hope and pray that Ajay will be able to gain the weight needed to heal for his up coming surgery, although no dates have been set. I just returned home and thought you all would be wondering how Ajay is doing. 

Update Nov. 4, 2011

Ajay's surgery will be Dec. 7th at Mott Children's Hospital, where he had his other open heart surgery. Only home just 4 weeks, and the cardiologist phoned me personally on Sunday afternoon to inform me that we couldn't wait for summer for the 2nd surgery needs to be completed. Although surprised and scared, thinking of not only Ajay's health, but worried about his ability to recover. We feel that he is stronger than 3 months ago, he still lacks physical strength and nutrition. He still refuses to eat, but does attempt to put food on his mouth, which is progress, but now where near 1300 calories "needed" according to all his doctors. Since my last post, therapies have ended due to insurance coverage, and we have started him on an appetite stimulant prescribed by his GI doctor. Its been only 2 days, but we are hoping to see more attempts at eating and drinking. He only drinks small amounts of juice and water, and refuses milk.

 

We will be celebrating Christmas on Dec. 3rd, so that we can have Christmas as a family... Santa has been informed via "Freddy the Elf" of the request for an early Christmas this year! ( in case some of you were wondering...) 

 

I will keep the blog going while in the hospital again. Please continue prayers for Ajay!

 

Carrie
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Update October 27th

Well, its been almost 3 1/2 weeks since our return home, and seems like an eternity with the days and nights all seemingly running together. We have so many appts to care for Ajay that it does all run together. :) I can say that we still have good and bad days, and even more bad sleepless nights but the Ajay we knew in China has emerged! He laughs, plays, signs happy and sad words, has fun with his therapists, hugs his brothers and kisses his mama and fills our days with happiness...even more impressive is he is finally eating as of 2 days ago! He has had the hardest time with food, showing no interest no matter the shape, form or consitency that I can muster up. He doesn't want to eat. We have Speech involved and GI specialist as well as our Pediatrician and Cardiologist close at hand for input and strategies. Nothing had worked. So, after much frustration and termoil, and the fear of nearing a Peg Tube permanently, he just started to eat. I always keep food in front of him as he sat with us at meal time, but he wouldn't show any interest. Then, one night over the weekend he began to hold a spoon, rub food on his lips, and drank even a small amount of broth. Its was heaven to see him attempt any signs of interest in food! Since then, he has tried very small amounts of food, ie meatloaf, noodles, rice, lots of broth and lots of water and apple juice. We are going in the right direction for sure! Now, the problem is that there are the 18 doeses of medicines that he takes daily...the docs all still think and are pushing for a Peg Tube. I am against it in the fact that its another procedure, but I do understand that amount of meds he does have to take for his heart, blood pressure, stomach issues, amoung others. Given that he isn't eating much, its very difficult to put food into any foods in fear of him not eating the food. Then we would lose the dosage. I have tried and he is smart enough to know that I "doctored" the rice. The meds are bitter and stinky. He detects it in an instant! Smart little guy, so that will continue to be a challange. I asked the doctors to give us 3 weeks, to increase food on our own, and attempt to let him start taking the meds a little at a time. I still have the ng tube for feedings so if he takes some meds, then I can use the tube for the rest. Maybe, just maybe he will learn to take the meds slowly, and by then, his appetitie will increase, and the volume of food will increase, and then I can mask some meds in his food.

 

With one of the many cardiologist appts, we had one test that came back negative. They were not able to see the stint that the surgeon placed in the SVC. Long story short, they did another heart cath on Oct 20th and ballooned the stink due to the pressure of the vein being unequal. It was a quick response to a failed test, so it was an obvious choice to have it done. Ajay came through like a champ and started eating that weekend in small bites. Who knew...I surely didn't think it would go as well as it did...thank God it was a success and Ajay was home within 24 hours.

 

So, on the therapy front, he is walking all over the house with decent speed, and does try to keep up with his brothers. He is turning pages in his books again, signing like crazy, ( still no speaking yet...beside mama, up, uh-oh) and is playful. For that I am grateful!

 

He is still ng fed but we have lessened the feeds at night in hopes that he will want food in the day. That being said, its a tough call on stimulating his appetite vs letting him become dehydrated. We weigh him daily to make sure he isn't loosing weight, and with all doctor appt they are also keeping a close eye. So far, he has remained within .5kg from arrival to the USA to date, including surgery. He has maintained all by himself.

 

We have started the IEP process for entering preschool in hopes to join a school after Thanksgiving. We know that the risks are great for sickness, but we also know we can't live in a bubble. I think Ajay would enjoy being around children and learning. Everyone who meets Ajay thinks he has made tremendous progress physically in a short 3 weeks of therapy. That is a blessing.

 

We are waiting now for the plan for surgery #2. Mixed emotions on that....ideally we would like to wait, and get through the holidays, but the doctors are moving towards a "sooner than later" attitude. I will definielty keep you posted.

 

 

one week home...

Ajay has been ill this first week home and continues to vomit several times a day. ( all docs say its because of his heart, lungs and compromised airway and GERD ) He came down with an upper respiratory cold within 2 days, which meant more doc visits and increased medications and respiratory distress during the night. He continues to have difficulty eating, and actually doesn't have any true interest in food. We eat as a family and he looks very much like we are wasting his time to try foods at all. But of course we encourage all meals and snacks as a way to hopefully engage him with something. His tube feedings have been increased due to the inability to eat on his own. I am hopeful that he will show signs of wanting to eat soon. I was hoping for the removal of the tube feeds, but I feel that he won't be rid of it anytime soon. With the frequent vomiting, we need to make sure he is hydrated. I learned at his pulmonary appt on Tuesday that Ajay also has an enlarged heart 2-3x normal size, which is boot shaped, and compressing on his airway. No one ever mentioned that while at the hospital.... Its amazing to see that this child can still breathe at all! With all the other breathing complications over the last 3 months, I wonder how he will continue to breathe as if nothing is wrong. He has the bronchial and tracheal malaysia, an enlarged heart compressing on his airway as well as the right lung is still collapsed. We are working with all therapies, and Ajay isn't impressed by their tactics or games. He's quite grumpy but when he is happy, he is truly happy. I think he is just tired of everyone coming and going already, even though these home therapies have just started their routine.  Ajay will continue to heal, but as always, will be slow and steady....in Ajay"s time.

The end of our first hospitalization...WERE COMING HOME!!!!

Well, its official...Paul is on his way home with Ajay! YES HOME!!! Its a miracle in itself considering we were facing the most devastating circumstances only one short month ago! He has been through it all and is now on his way home. We are all so thrilled and blessed to be a family again, today, after 74 longs days living in a hospital apart from one another. 

Ajay has a severe congenital heart defect and chronic lung disease and tracheal/bronchial malasia, and will come home with a feeding tube and oxygen, a wheelchair, and over a dozen medications and breathing treatments. He will be receiving Physical therapy, occupational therapy, speech therapy, respiratory therapy and home nursing care here at our house. And will have many appts with his cardiologist, pulmonary team, endocrinologist, and immunologist routinely. All appts will be a whirlwind to schedule here at first, but we are happy to say he is coming home. It doesn't matter what we have to do for him. God will continue to provide and guide us further through the tough times ahead. 

Although the physicians wanted to do Ajay's second heart surgery in 12 weeks, we have decided that we will rest, get used to each other as a family, and enjoy the upcoming holidays. As long as its not a detriment to Ajay's health conditions, we will hold his second heart surgery until spring. Paul and I both feel that its important to be together and let Ajay become familiar with us here at home vs just at the hospital.

I will continue to post updates weekly if anyone wants to check in with Ajay's progress. Feel free to post a message if you care to have my personal email and I will send it to you personally.

Thank you all from the bottom of my heart for the prayers, gifts, letters of hope and encouragement and love that you have filled our lives with over the last 3 months.

 

update sept 14th

I am pleased to finally announce that Ajay has been moved to the general floor as of Tuesday! I hesitated to say earlier, due to the always wavering uncertainties of modern medicine and Ajay's reaction to it! I had hoped Ajay would stay once moved, but there was some small set backs that might have kept us in moderate care longer...but as Ajay has proved time and time again, I need to trust Ajay more in his abilities and quit worrying. He moved to the general floor and stayed! He had a swallow study on Tuesday, as well as a barium study to see if his feeding tube could be moved from his intestine to his stomach, and to also see how he could tolerate varying degrees of food and textures. He passed both studies, only to aspirate on good ole American water! No big deal, we thickened it and he does fine. He is eating/drinking small amounts of pediasure with thickening flavor, as well as con gee which our Chinese American nurse so graciously made just for him! He loved it and knew exactly what it was when he saw it. It was such a precious moment! ( I had to taste it too as his mom of course to make sure it was "okay" to eat...it was fabulous! Just like China!! We miss China so much!) So for the last 2 days, he has finally stopped vomiting, and feeling miserable. (vomiting and feeling miserable was due to unknown causes but I think it was too much food too fast through the feeding tube and increased protein in his diet by 75% which is why I believe he was so sick since last Thursday...every medical test came back 100% perfect...but I am just a mom and they said I was wrong with my theory until I said turn the the whole thing off and go back to the original formula for 24-36 hours and see how he does...well again, this Mom was right :) He wasn't sick anymore when they took all that added protein out and decreased the flow of feeds...whew...only took one argument with one doctor, and I won that war....) Anyway, we are on our way, and Ajay is a different little boy. He is laughing, saying 'Mama' all the time, and even said "Daddy" on Monday. His voice is somewhat rough from the tubes and vent, but seems to have his vocal cords without damage. As all of you know, he doesn't say too much but Mama, but is now moved on to Daddy. We are behind in speech and language, if ever he will speak, we are unsure, but his signs are amazing and he is such an expressive child that we are not having any trouble with ASL.

 

Ajay has been very busy with Physical Therapy, Respiratory Therapy, Speech Therapy (swallow studies) as well as meeting with Dietitians for diet consultations and continued monitoring of his oxygen and blood gases/levels. He has amazed and fallen into the hearts of most everyone in the hospital. All of the doctors have come to see Ajay over the last 24 hours and are AMAZED at how well he is doing, and has truly beaten the odds. They admitted today, that they were "unsure of the outcome" many times....I respect the doctors here at UofM and their ICU team committed to Ajay, their honesty,love, knowledge has brought him thus far today. He is living proof that miracles still do exist, and the abundant blessings we feel with God's continued presence.

 

Doctors will continue to monitor his oxygen, which has been lowered to only set at 2 liters. He is off all pain meds, and they are watching for stomach profusion, and normal bowel sounds as he is eating small amounts of food. With prolonged use of the ventilator, medications, etc. the stomach will need some time to start working on its own again. So far, so good.....he is a happy camper!

 

We finally see the light at the end of the tunnel and although have no plans for discharge at this time, I am confident that it won't be too much longer with the progress Ajay has made in just a couple days. I will continue to update blog for those who are still checking in :)

 

 

Update Sept 7th

Slow slow slow progress since last post. Ajay has had some tough days, vomiting at least 3x daily of secretions from lungs regularly. Lung is not improved but somehow he manages to overcome any obstacles with his breaths. His O2 fluctuates in the low 70's or high 60's with the drastic lows in the 40's. Its been frustrating to re-teach everyone that enters our room about our Ajay and how he operates in his own way, now in moderate care since Labor Day weekend. Yes, a step down, but same problems and struggles. He is weening more from drugs and O2 but in extremely small increments. We are not able to start any further swallow or feedings until he gets off the high flow O2. So he is continuing to be fed through his g-tube in his intestine. He is much more active and expressive, but still not speaking other than an occasional "mama" which warms my heart. Speech will be involved to create a communication board, although his sign language is advanced, the nurses really don't take interest in him and his ways. Paul and I are fine with all the sign language, covering 68 signs...we think its terrific :) but like I said, not everyone does...he is 3 years old now, on Aug 11th. Hopefully his language will develop, but if not, we are steps ahead with American Sign Language! Thanks to the wonderful nannies in China! We couldn't be doing this without signs!! He loves to sign and I have added a few every day and has no trouble remembering.

 

Again, not much to report on the physical front, but is participating in PT regularly and is slowly taking on more playlike exercises. He stands with moderate asst and full upper extremity support, but loves the train table so much here, that he almost forgets hes actually working! He can only stand for seconds, but the weight bearing is great for him. RT is forever coming in with treatments as well. The vomiting is not alarming to anyone, but seems like its well worth the efforts by Ajay. It really gets the junk out of his lungs and says he's better when the episode is over.

 

Hope to be able to say more next time, but with progress so slow, its just nearly impossible to post more than weekly. Thank you for all your continued prayers, notes, and txts!
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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.

 

--

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!! 

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!

 

surgery

We have a date! Ajay's surgery is scheduled for July 5th ( not sure of time yet ), and all pre-op testing will be done this Friday, July 1st. I was on the phone all day with doctors, nurses, family planners for hotel stays, registration personnel, etc. Lots and lots of schedules to accommodate :) All of the labs done previously have come back okay, but the surgeon wants to run his own tests.

 

 Its my understanding that part of Ajay's procedures are diagnosed as Tetralogy of Fallot http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002534/

 (and several other heart defects on top). So, yes, its even more severe than we anticipated. However, we are doing the best we can to have only the best doctors see and treat Ajay. The doctor preforming the surgery is world renown. This doctor chooses his cases, and refers others...Ajay's case was chosen....because of the complexity. I was told that this procedure and the ones in the future could not be completed by any text book explanation or diagram, but solely on the skill, knowledge, experience and level of confidence of an astounding physician....lucky for little Ajay we have that doctor.

 

The procedure on the 5th will be "Pulmonary Artery Unifocalization" which is the first of the TOF procedure. You can read more via google if interested. Its very difficult to understand so I opted not to try to explain his procedure. Here is one helpful link for explanation http://jtcs.ctsnetjournals.org/cgi/content/abstract/138/6/1269

 

I will post news and events asap :) Please keep Ajay in your prayers!

 

 

 

 

 

 

Updates....

I wanted to be sure I updated everyone on Ajay's last 2 days! We were admitted Thursday night to be under "observation" during the Heart Catheterization and home on Friday. While under extremem sedation, due to him fighting the meds typical children are given, he slept for a very long time in recovery. He awoke to asking for a drink and something to eat. He ate 2 bowls of Cherrios and 4oz of apple juice at 2 am. Then, went back to sleep until 730am, which he awoke to eggs, cereal, muffin, juice and milk. He ate most of the eggs and cereal and drank another 3-4 oz of apple juice. He was given Tylenol throughout for pain, and took it like a champ. He never seems to complain much. He is very easy going little boy. He playes so well with all of us, like he has been here for years! He likes puzzles, card games, and all of the boy toys...trucks, cars, trains, etc.

 

Once home, he was elated to see and play with his brothers. He signed brothers over and over again at the hospital even with his splinted IV covering his right arm. He insisted he see them, signing in a demanding way. Luckily, I took some photos on my phone to show him while at the hospital. We called his brothers at breakfast and that seemed to ease him some. He really wanted to go home. He signed "go" and "shoes" several times...the nurses were smitten by him. :)

 

He has been eating fairly well, steamed rice and veggies (which he seems not to be a fan of veggies at all), yogurt, milk, apple juice, potatos, eggs, and bread. He does like to drink water, but doesn't drink as much as he should. We have an area in our kitchen where we keep water so all the boys can drink regularly.We had cheese ravoli last night
and garlic bread which he seemed to enjoy. We just keep trying different things, along with his rice so that he gets some nutrition while he is adjusting. He can be demanding at times, and will push food away without trying. Although we all encourage him, you can't make a child eat or drink. He has been dehydrated the last 2x in the hospital, so I worry about him not drinking enough. He is on liquid supplements to help with nutrients and vitamins to keep him strong.

 

We are now awaiting further review from the surgeons in Michigan, to give us the plan of care. We should hear this week sometime. I will post when the plan and other test results are given.

 

--

Carrie Reimer

Mary Kay Cosmetics

www.marykay.com/creimer6

419-348-0968

 

A Jay made it through his heart catheterizaion, for a total of 4 hrs exploration. He did wonderfully, with his strength shinning through. He and I are spending the night and should be released tomorrow. Next step, all the doctors and surgeon will examine all tests over last day, and will send files to surgeon. Then the team will come up with a plan, and schedule surgery asap.

Until then...

Sunday June 19th

We finally arrived home later Saturday night from the hospital. Ajay was thrilled to be out to see his brothers, as he continued to "sign" for them while at the hospital. He is doing much better. He is amazing me everyday with his strength. He is on oxygen now continuously, and hates the cannula as he was used to the full mask previously. The doctors all said that that was not an efficient way to give him oxygen, so I went with their word. He struggles with the nose version, as it does dry out the membranes much more and becomes irritating to him. He isn't used to it, so I have given him small breaks in between, which I cleared with the doctor.

 Ajay also loves being home! He sat right down and played with his brothers immediately as if he had never left. They of course have been so excited to be "big brother" to him which he loves all the attention. He has become quite attached to me, giving kisses and holding my hand countless times during the day. He is so cute when he puckers those little lips!!

His appetite was much better and is eating eggs, pancakes, yogurt, rice (my congee needs work but he ate it) and fried rice and noodles from our local Hong Kong native. It was Father's Day, and we sprung for Chinese. I have tried to keep his diet consistant with what he was used to in China, although Americans don't prepare food the same, at least he is somewhat familiar with the items he has tried. He doesn't eat much fruits but that was not surprising. He doesn't want to try it, so I can't complain.

He has small cold, but received IV antibiotics when at the hospital for a possible ear infection (both ears). They didn't feel he would get any pneumonia with the antibiotic, but I warned that he is very very prone to it based on notes from his foster home.

 Upon leaving the hospital, we were required to have an oxygen tank concentrator and several portable tanks in our home. So, we met the delivery man at 10pm Saturday night for the delivery. The respiratory therapist will be contacting me on Monday to arrange a visit asap so she can monitor Ajay closely. In the meantime, we are to schedule a Heart Catherization for Thursday this week. All tests performed on him over the last 2 days while admitted, were faxed to the surgeon at The University of Michigan for review and plan of care. We will be moving quickly for his first surgery. I will post dates when I know exactly the plan.

Until tomorrow...

In the USA!!!!!!

We had a rough flight from Guangzhou to Beijing, waiting on the runway for over 4 hrs. A Jay got really upset and threw up everywhere. I was initiated, then had to fly at 1130pm. We arrived at our hotel at 3 am. Needless to say, we were all beat and had to wake by 5am for our flight home. All went well and Ajay went willingly and slept for about 3 hours total and did well on the flight. He was antcy some, but I was as well. Its a long flight, followed by a 5 hr drive home. He did well until about 2 hrs on the road, where he omitted in the car. It seems that when he is really upset, he vomits quite easily. I couldn't drive any faster and I knew he had enough travels. We were also delayed. We had some traffic and construction delays, so we didnt arrive home until after 6pm Thursday night.

We arrived home and the other boys were so excited to see us and Ajay :-)  They were bringing out all of their toys one by one, to show him all the fun ahead. It was cute how they interacted without trouble. Ajay  was a little timid for the first hour, but soon realized that they weren't so bad. They played for a short while, and A Jay had a bath, his oxygen treatment, and fell asleep in my arms. He slept from10pm til almost 4am. I thought that was pretty good considering the travels, new home, environment, etc. He did sleep in his own bed which we placed in our room in case he awoke in the night. He never cried...just slept peacefully.

We prepared for our Monday morning appt with the pediatriian at 10am. A Jay woke signing "brothers" and didn't seem to understand why they were not up at 430am :-)  They all woke to eggs and toast, Ajay eating an egg but refused the toast, and did try some milk. We had a good morning.

We went to our appt and the pediatrician immediately told us to go to the hospital. A Jay,s oxygen levels were o ly at 64%, and his pulse was in the forties. He seemed okay like the day we met him. He was actually playing with Anthony when we were told to take him, and the hospital was waiting. So yes, I was a bit surprised. Paul and I drove to the hospital and we were admitted within minutes. We arrived s out 1230 in the afternoon, followed by a series of questions by the nurses, PA, and doctors on call. They soon four d too that he was very u stable, and was not able to let us go ho e,  ut in fact preparing us for a couple days stay. The needed to put in an IV to increase his fluids from dehydration and weak veins. He needed to be on oxygen continuously, to raise his oxygen levels, to 75 range, and to be able to get a CT scan and chest ray, echo, and other heart tests completed. One problem was his hemoglobing is too high, making it not possible to get the dye in for the CT scan. So fluids were given around 9pm this evening. They had a terrible time trying to get his IV started since his veins are so fragile, they blew 5 out from the start. Poor guy was in such pain, and I was not able to help him. He played there crying calling, mama. My heart broke as tears of exhaustion and fear shown in his eyes. They finally got a line I,  and slowly started some fluids. By morning, we are hoping that his veins and hemoglobin levels are improved to continue with the CT scan, which will provide the doctors with a better understanding of how his heart is functioning. I do know he will require oxygen constantly when we are released from the hospital. So i will be working on that process tomorrow.

All in all, it has been an overwhelming day. We are in the right place with the right resources in place. I will keep you all updated as I get knew information.

Please continue to keep little Ajay in your prayers as it will be a long road ahead.

Tuesday June 14, 2011

Ajay's leg appears to be a tiny bit better this am. He was up most of the night scratching, restlessly in the night. I couldn't seem to stop him from itching and I felt so bad. I massaged his legs, and tried to occupy his hands from the intensity he felt throughout his infected leg. The scratches were so intense that he looked like he was scratched by a cat. Deep enough to bleed and make him more miserable. I used lotions and Benedryl and nothing seemed to work. When morning came, he awoke with several scratches on his left foot and now right calf was now swollen and reddened just like the left one started 4 days ago. I looked into his eyes and not only saw an exhausted boy but also one with a swollen shut left eye. He apparently got bit on the cheek near his eye and it swelled shut. He looked worse than a rerun of Rocky IV. I felt so bad for him. He itched and itched not only his legs but his eye. Paul and I were amazed and confused by the mosquito bite again, as we have not once been bit during this trip. We saw one in the hallway and once in our room, but killed it immediately. We thought we were free of these pests. Unfortunately, Ajay is attracted to these like a magnet.

 

I gave him more Benedryll and went to breakfast. Poor little guy he looked miserable, but ate well as if nothing was really wrong. Bless his heart. He still had a pretty happy disposition for such a sleepless night.

 

Well, its the day we all have been waiting for...June 14, 2011....Consulate Appt. Today was the day we processed every last piece of adoption paperwork and submitted to the United States Immigration Dept here in China, applying for finalization and processing of the Chinese Visa allowing Ajay to be given permission to go home to the United States. Its the final step! All is well at the appt and went scheduled as planned, only taking about an hour from start to finish, allowing all 10 families to do the same.During the ceremony we are asked to swear and affirm that all the statements you have made and documents you have submitted to obtain our child's immigrant visa are true and correct. If all documentation is complete, the visa should be ready to pick up the next day, and in our case is 330pm on Wednesday June 15th. Ajay's passport containing the visa as well as prepared documents in a sealed envelope, will be returned. We will take the sealed envelope to the United States Customs representative upon arrival in Chicago, and they will open the sealed documents, and further check for accuracy. Then, Immigration will file for proof of Ajay's citizenship, which will be sent within 45 days. (although he is immediately a USA citizen upon boarding the United States airplane, the "proof" of citizenship helps tremedously in getting a US passport and SS card)

 

On Wednesday after receiving the visa, we will be taken to the Guangzhou airport to prepare for our 730pm departure to Beijing. We will stay at the Hilton within the Beijing airport until 6am in which we will depart towards the boarding gate, ticket counter, and luggage check, in preparation for our flight to take off at 750am Thursday morning. We are scheduled to arrive on Thursday 750am in Chicago (yes we lose a day, by leaving a day ahead from China and arriving on the same date in Ohio).

 

I will try to post if Internet is connected via a wireless site at the airport hotel, to let you all know of our safe arrival. If not, I will post again to let know we made it safely to Chicago, for a 5 hour drive home to Ohio.

 

Thank you for everyone support and prayers during this special journey to Ajay!

 

Until tomorrow...

bath time after Safari Park

Despite his sore leg he still has that winning smile!  He loves his bath time and asks for it several times a day!

 

 

more Safari photos

Safari Park June 12, 2011

Today was a free day and we decided to go see the Safari Park in Guangzhou. It was a very rainy day, with storms through the night and still very very humid. Ajay's leg looked about the same, but felt that the antibiotic needed time to work. If not better by Monday, I would take him back to see the physician.

 

The Safari Park here is just that. The humans are the cage and the animals run freely in their own habitat. There are safe guards such as wide trenched areas driven between the cars/buses and the animals. They keep their distances so the lions, tigers and bears (oh my) don't eat the people...the antelope, deer, chickens, etc run freely around people and look into cars. We were in a bus-like train with cable cars attached for traveling throughout the park. Many wonderful animals enjoying their habitat as if we had something to look at. See photos below.

 

After the Safari on train, we were able to see the rest of the park by foot. We walked through seeing the worlds first Koala twins. They were sheltered inside a large habitat of their own, eating and enjoying the high life. Ajay enjoyed seeing all of the animals especially the monkeys. He seems to really enjoy them! Signing "monkey" is really the enjoyable part for us :)

 

As said in the previous post, we left the zoo early and went home to soak his leg, apply meds, and rest for the remainder of the night. He never fussed over any pain, but was frustrated that his leg itched so badly. He did sleep the entire night, 11 hours with only one awakening at 1 am because he was wet. He signed for "mama" as Paul was changing him, and I rocked him to sleep in a matter of minutes. Precious precious boy...we are so lucky to be his parents. :)

 

 

Sunday June 11, 2011

Sunday June 11, 2011

 

Ajay had a good nights sleep, and awoke with a smile and appetite :) He continues to amaze me and gives us such a reason to be happy. He is such a good boy, communicating his every need with sign language. It really helps the frustration and language barrier as well as the ability to meet his needs. He loves being in the car, which is a good thing considering we drive alot of places when we are home. The doctors we will be visiting will be quite a drive as well.

 

Today is a big medical day. We have the medical evaluation, TB test as well as the processing of his papers to be filed within the govenment in preparation for his visa. We met the driver and guide who walked with us to the Medical Center a few blocks away. Its a nice day, very humid, around 95% at 830am. Paul and I are sweating like crazy, and the guide is telling us its a nice "cool" morning.

 

The medical doctor spoke English which was nice, and easy to communicate with during the medical exam. Ears, nose, throat, and TB test went well. He listened to his heart and said said he definitely could hear the irregular heart beating fast as well as the mumurs. I thought he would say more, but I wasn't sure he knew that we knew how bad his heart really is. We do know, so I guess it doesn't matter what the doctor said, I was just curious if he would say anything further. He didn't. He did, however, see a nickel sized bump on the back inner portion of his left calf. Ajay has had some mosquito bites since we met him in Beijing over a week ago, and seemed somewhat allergic to them. He had some previous bruising and swelling on his face and arms were reddened from scratching it, but nothing further. Well, this bite became infected with just  a clear liquid when the doctor squeezed and poked at it. He wasn't allarmed, but did prescribed some antibiotic ointment and anti-itch ointment. No big deal....we went on our way, walking around some other stores and restuarants, throughout the area and returned after lunch for a rest. (Ajay gets really tired easily, so we take naps :) or at least try to and take it easy.

 

We woke shortly early that evening and took a nice cool bath after dinner. (Ajay LOVES the bath by the way and we played for almost an hour!) I was drying him off when I noticed his left leg was really inflammed and swollen. We got his pj's on and the more I looked at his leg, the more swollen I realized it had become. He was complaining of not wanting his shoes on earlier in the day, and was not thinking that his foot may have been swollen...at any rate, his entire left leg from the knee down to his foot was double the size of his other leg. The area was more red and mottled in color and he was itching it like crazy. I told Paul to run down to the Medical Center to see if by chance they would still be there. It was already 8pm at night and it was closed. I didn't think we should wait, because of the amount of swelling in such a short amount of time. We were at the Medical Exam this am, not more than 7 hours earlier...this was swelling quickly and I was afraid that the infection had spread. Having a little medical backround, I knew that an infection can easily spread to the heart. As we all know, Ajay has a heart condition...I was worried that the infection could make him very ill if we didn't get him oral meds. So no one spoke English at our hotel, as the typical staff had left for the evening. We called our guide and thankfully she suggested we go to the hotel nearby, where there is a medical doctor on staff 24/7. We walked to the hotel, and a lady at the business office spoke some English. We showed her Ajay's leg and she took us immediately to the hotel doctor office. We were on our own after that, but were somehow able to convey to the 2 Chinese ladies that we had a problem. I showed her the ointment, and compared his two legs, showing her the bug bite area. She said, "ohhhh" and wrote a prescription for oral antibiotic 4 times a day for the next 4 days. Luckily, it was strawberry flavored so he would take it better.  It was quite scary, being in a forgein country trying to find a doctor for a medically fragile baby who has a pretty bad infection.

 

The next day, we went to see the Safari Park in Guangzhou, and I put the medication on the area with a bandaid to keep the area clean being at the zoo and all...well, that didn't prove to be a good decision. It started draining liquid during the walk through the park, and I had no idea what to do. I didn't want to take off the bandaid with potential for more germs to get in, but it was starting to blister and drain. Luckily, our guide agreed that we should go, and get into a cool bath to calm down the inflammation, take off the bandaid, and let the air dry it up. AND at the sametime, keep him from itching it and keep still :) Okay, first things first...home and a cool bath...went well, and then cleaned the area with sterile q-tips we purchased on the way home, with peroxide, applied ointment and held his foot and him away from the area. Needless to say, it was bothering him and he was not happy with the "keep still" part of the evening, but we did the best we could. He never cried or fussed much when we got the meds on his leg, it over the course of the night calmed down some.

 

Thank God...again, no fever or any other symptoms of illness...just a horriblly swollen infected leg.

 

a few more

ONe of his favorite things are his monkeys!!

more Dragon Boat photos