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Wednesday, September 21, 2011

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.


Wednesday, September 14, 2011

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 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 :)

Wednesday, September 7, 2011

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!