January 24th, 2009...more healing

I just wanted to give you all a quick update.

I spoke with Deepika today. She said that the surgery went well. They repaired the intestinal malrotation, performed the appendectomy, and placed a gastrostomy tube for direct feeding to the stomach should Jevesh have difficult feeding orally post-surgery. They were also able to extubate him (take the breathing tube out). He is suffering some discomfort but the doctors are providing pain medication. On another positive note, they let Deepika hold Jevesh for about a half hour today...He was fussy because of the discomfort but it was good.

Thank you all for your kind words, prayers, and support. Deepika continues to pray that Jevesh will be well enough soon so that she may come home for a little while before his next surgery, scheduled for late spring/early summer...she misses you all very much.

Below is a short video I took last weekend...

January 22, 2009...going in to surgery

Just wanted to let everyone know that Jevesh went in to surgery at about 3:30 this afternoon. I will post an update on how Deepika and Jevesh are doing tomorrow.

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(The above is about as close to a smile as we get these days :) ...he is only now beginning to be able to focus without crossing his eyes :) ... He will be better at it (smiling) around 3 months of age or so, when babies start to developmentally "get there sense of humor" ;) ... and if he is like his father (which we think he is) he will be smiling a lot! and making everyone around him smile even more than they already do (he already has the nurses enamoured).

January 20, 2009...Change of surgery date and posting comments

They have changed the date for Jevesh's surgery. It is now tentatively scheduled for this Thursday.



Also...

I have fixed the comment setting...it had reset it to only have registered users...now anyone should be able to post their comments. Please feel free to leave your comments and well wishes...Sorry for any inconvenience.

January 20, 2009...Jevesh braves another surgery

The doctors have confirmed that Jevesh does indeed have malrotation of his intestines. They have switched his NG (Nasogastric) feeding tube to an NJ tube (NasoJejunal) that goes directlty to the intestines to make sure the food can get past the obstruction. The malrotation involves a volvulus...what I understand to be a tissue buildup that poses the risk of cutting off the blood supply to the intestines...which is what makes this surgery imperative.

While they are fixing his intestines, they will also perform an appendectomy (removal of the appendix) so as to prevent future problems that could be presented by the reversed organs should he develop an appendicitis later in life.

There is a possibility that they may need to perform an additional surgery related to his stomach. They believe he may have acid reflux at a level that could prohibit or make eating and digestion difficult. They are awaiting further test results to see if a procedure will be necessary to address the problem.

Making a trip

Just a quick note...I will be in Chico on Friday for a very short time (leaving by noon)...If anyone wants to send anything down to Deepika, I am more than willing to take them to her. Just let me know...


Side note: if you have not been to the blog in a while, be sure to scroll down through the posts for previous updates, the slide show video, and pictures...


As Always, thank you all for your kind words and prayers for Deepika and Jevesh...every single good thought, prayer, and kind word counts...

January 12, 2009...The science of it all...or at least some of it

1) Right Dominant Unbalanced Atrioventricular Canal Defect or Atriventricular Septal Defect (AVSD)

+"...large hole in the center of the heart. It exists where the wall between the upper chambers joins the wall between the lower chambers. This septal defect involves both upper and lower chambers. Also, the tricuspid and mitral valves that normally separate the heart's upper and lower chambers aren't formed as individual valves. Instead, a single large valve forms that crosses the defect."

(See website http://www.americanheart.org/presenter.jhtml?identifier=132 for picture of normal heart and additional information)

2) Malposed Great Arteries

+"...In transposition of the great arteries, the aorta and pulmonary artery are reversed. The aorta receives the oxygen-poor blood from the right ventricle, but it's carried back to the body without receiving more oxygen. Likewise, the pulmonary artery receives the oxygen-rich blood from the left ventricle but carries it back to the lungs."

(See website http://www.americanheart.org/presenter.jhtml?identifier=132 for picture of normal heart and additional information)

+In the case of Jevesh's heart, the pulmonary artery is absent (see below)

3) Pulmonary Atresia

+"In pulmonary atresia, no pulmonary valve exists. Consequently, blood can't flow from the right ventricle into the pulmonary artery and on to the lungs. ... The infant appears blue (cyanotic) because there's less oxygen in the blood circulating through the arteries."

(This is what originally alerted Deepika that there was a problem)...

"The only source of lung blood flow is the patent ductus arteriosus (PDA), an open passageway between the pulmonary artery and the aorta. ....Early treatment often includes using a drug to keep the PDA from closing."

(This was the Prostaglandin that they had Jevesh on prior to his surgery for the shunt which replaced the PDA)

"A surgeon can create a shunt between the aorta and the pulmonary artery that may help increase blood flow to the lungs. A more complete repair depends on the size of the pulmonary artery and right ventricle. If the pulmonary artery and right ventricle are very small, it may not be possible to correct the defect with surgery. In some cases, where the pulmonary artery and right ventricle are more normal in size, open-heart surgery may produce a good improvement in how the heart works."

(See website http://www.americanheart.org/presenter.jhtml?identifier=132 for picture of normal heart and additional information)

4) Single Coronary Artery

+"The coronary arteries are the only branches of the ascending aorta, and they supply blood to all structures within the pericardial cavity. Usually, the 2 coronary artery ostia are located in the center of the left and right (anterior) sinuses of the aortic valve."

(See website http://emedicine.medscape.com/article/153512-overview for more information)

+"Single coronary artery is a rare congenital anomaly of the coronary arteries where only one coronary artery arises from the aortic trunk by a single coronary ostium, supplying the entire heart"

Ostium = Opening

(See website http://eurheartj.oxfordjournals.org/cgi/content/abstract/13/12/1637 for more information)

5) Left Pulmonary Artery (LPA) Stenosis

+A narrowing of the pulmoary artery, specifically for Jevesh, his left pulmonary artery is narrowed.

Stenosis = a narrowing

Atresia = Abnormally closed or absent

Malposed = Wrong position

AO (in the picture) = Aorta

IVE (in the picture) = Inferior Vena Cava

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Additionally Jevesh has:

Asplenia = He has no spleen (which equals higher risk of infection)

Heterotaxy or Situs ambiguous = internal organs are backwards from where they should be...Essentially, it is the Situs ambiguous that has resulted in all the problems...from the heart defects, to the asplenia, to the malrotation of the intestines... (See http://en.wikipedia.org/wiki/Heterotaxy for more information)

Malrotation of the intestines (this is still being discussed by the doctors)

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Jevesh has had the first of what will be a minimum of three surgeries (likely more). The doctors placed the shunt to replace the Patent Ductus Arteriosus (PDA) and take him off the Prostoglandin.

Jevesh may have to have surgery for malrotation of his intestines...we are still waiting for the doctors to complete their evaluation and testing.

All of the defects are interrelated...they are developmental (congenital) defects which likely occurred during the early stages of pregnancy...There is no known cause, only theories...what the doctors know is that sometimes during gestational development, the cells get the message wrong...

January 11, 2009...looking back, looking forward...and more news

Some updates from Deepika for you all...

Jevesh is still struggling and fighting. On the 31st of December, 2008, The doctors had to take Jevesh off of the nasogastric, NG, (tube through the nose that leads to the stomach) feeding with the breastmilk. With his condition, Jevesh is at risk for what is called Chylothorax, which is, in laymen's terms, a type of fluid build up in the body (this is bad, as fluid retention can lead to congestive heart failure)...They have him receiving doses of lasix, a kind of diuretic, and placed him on a fat free baby formula which he receives through the NG tube.

On January 1st, after 16 days of anxious waiting at his bedside, Deepika was finally allowed to hold Jevesh for the first time since his surgery (to place the shunt). It was a good day.

Imagine for a moment the contrast of 2007 to 2008/2009...a year ago, Amit and Deepika were celebrating their marriage, ringing in the new year in Vegas and then heading to Disney (Amit was the happiest kid of all :) and Deepika was right there with him...The absolute joy to share such love and passion...to have the start of the new year, a new life, with your best friend at your side.. soon, having a second dream come true to find that they would be parents...and less than 12 months later we are looking back with such mixed emotion and utter and complete heartbreak...Amit stolen from Deepika and Jevesh, and all those that cared for him, Jevesh, born in to this world with such hope, now we pray that he does not leave as well.

Now, every day is a blessing and so very precious...and just this friday (01/09), Jevesh celebrated his 1 month birthday...every month will be special...will be celebrated...(and in our hearts, every day is celebrated and cherished, for we do not know what tomorrow will bring).

Sadly, with this blog, I have more unfortunate news to share as the trials and tribulations continue.

On January 5th, oral feeding was attempted for Jevesh...just a small amount, to see if he could swallow and that he could physically handle the feeding (feeding for babies is like jogging for adults). The first and second attempts seemed to go fine, however, the next day, January 6th, Jevesh became ill after the oral feeding (thowing up). Doctors put him back on the NG tube feeding and began conducting tests to see why he could not handle the oral feeding...Preliminary results seem to indicate that Jevesh has malrotation of the intestines (his intestinal track may be twisted or pinched). This malrotation can result in severe intestinal problems including pinching of the blood supply to a portion of the intestinal track (which causes the tissue to die)...if this were to happen, the doctors would have to remove the affected portion of his intestines (and this would also mean the possiblity of long term nutritional issues).

At this time, the doctors are looking to do a surgery on Jevesh some time in the next few days. They will repair the malrotation and treat accordingly (i.e. remove any portion of intestine that may be damaged). Jevesh will be required to continue his stay at the children's hospital, in the intensive care unit, for a minimum of 6 more weeks...

As always, please feel free to leave messages for Deepika on this blog...She does not often get a chance to use her phone as it must be turned off while she is in the ICU which is where she spends most of her time.

Many of you have asked if there is anything you can do...I will talk to Deepika to see what she might need...right now...she is at the Ronald McDonald House, her parents are with her, and she has no immediate needs...It is likely that we will attempt to organize a dinner and silent auction some time in the coming months...We will be auctioning Amit's motorcycle and looking for additional donations...We have no immediate plans but I promise to post more information as it comes...just keep it all in your minds for now...

Thank you all for your kindness and support...you can choose to "follow" the blog as well so that you get updates when new posts are added.

Deepika thanks you all for your kind words and prayers and that right now...what she really needs is to please keep on praying (thinking positive thoughts, sending good vibes, etc)...She misses everyone and wishes she was home...but sadly, that will have to wait ...

Stand By Me...For Deepika, For Jevesh...For Amit

A little inspiration...show of support...and something to warm your heart...(When I learn Hindi, I will pick a better song...but this one seemed to do the trick).