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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