Wednesday Jan. 25, 2012

Since arriving here at the hospital Sunday night, Ajay has has been treated for cellulitis infecion around the gtube site. There is extreme redness, swelling, and is very painful. However, there is no drainage, which makes the diagnosis of the infection becuase they are not able to culture it to see what antibiotics will work best. So, they started 2 different antibiotics to cover most skin infections. He has had some side effects but is doing pretty well overall.

The GI specialist noticed that the mickey button that was placed last Tuesday may be too tight, causing friction and room enough for infection to grow. So, Thursday,he will place a s-lightly larger button so that the skin under the button has some room to breathe.
Assuming all goes well, we should be released on Thursday pm.

So now we wait.....



New surgery date for Ajays open heart surgery is March 9, 2012.

Since Dec 6th, Ajay has put on 2# and with new setback, it will give us 5 more weeks to help him gain another pound or two. He doesnt really show too much interest in food nowdays, but is holding down 1100 calories which is a large accomplishment for us. He is not allowed to attend preschool, but hascompleted the IEP process, and will be able to receive services here at home.

Update Jan 22, 2012

We were settling in for a nice weekend with our family, our last before Ajay's surgery quickly approaching on Tuesday 24th, and i saw that since yesterday his gtube site was really red and swollen since the night before. I took him to the local ER todsy at noonand they sent us to the bigger hospital where all his specialists are, and also close to the surgeon. ( i felt as well as the docs for ajay to be closer to surgeon now vs transfer him later if there were complications)He has an infection, and needs antibiotics through an IV for several days. I will stay here with him, until the infection clears. Needless to say, the surgery for Tuesday is canceled (again). I will be sure to update soon when I know more.

Carrie

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.