Wednesday, October 27, 2010

Surgery done

Dear friends,

Thank you so much for your prayers, and sorry for the delay in getting back to you. Madeline made It through surgery fine. They were able to do the surgery lapriscopically through 3 small incisions on her abdomen. She was pretty much out of it for a day and a half after the surgery with lots of bumps in the road.

And then last night she just awoke, and she was happier, and cuter, and healthier looking than she has ever been. I spent a long time just with her bedside talking to her and telling her stories and smiling at her. She was just so awake and alert. She is doing good, she had lost some weight during this time bet hopefully will be back on the road to gaining again soon.

Thanks again for all the prayers, emails, cards, and support. We really feel it all from you and appreciate every last drop, so again, thank you.

Grace,
Shanker & Lisa

Sunday, October 24, 2010

Surgery on Monday!

Hi all,

Hope you had a good weekend. I can’t believe that I haven’t updated anything in a week. Some moments it feels like the week was long, others makes the week seem like it passed in a flash. There were a lot of news, no news, news, no news ups and downs. Madeline is doing mostly well now that they have her lung infection on the run and her back on her diuretics.

Seems like mostly they just got behind the ball with her diuretics and her lung infection last week and that’s what caused most of her ups and downs. Now for what happened this week. We had an MRI scheduled which got pushed back a few times. Finally after the MRI was completed we waited for results that they told us wouldn’t come for a week or two and finally came the next day.

Madeline’s heart looks ok, the left side is still small, but growing and adequate they feel for her. There are still 3 holes in her heart, two in the bottom of her heart between the left and right ventricles and 1 larger hold in the top of her heart between the left and right atrium. The pulmonary band is doing its’ job of restricting blood flow to the lungs and encouraging more flow out to the body.

The main problem now is the hole between her atria. It’s letting too much blood across and back into the lungs. She also has a paralyzed left side of her diaphragm which isn’t allowing her lung to fully inflate and this has it partially collapsing. The surgery on Monday will be to placate the diaphragm (sort of pleat it and tie it together) so it stays down and doesn’t flop around.

The diaphragm muscle is fine, it’s just the nerve controlling it isn’t working right. They expect that nerve to fix itself over time and for Madeline to regain full function in her diaphragm. They have decided to do this ahead of the heart surgery with the hopes of getting her lungs in as best a shape as they can so she’ll have a better chance of surviving the heart surgery.

They will also insert a g-tube (which sounds cooler than gastrointestinal tube). This is for feeding her, it goes right through the skin to her stomach rather that the nose tube she currently has. They don’t really think she’ll need it long term, it’s just better to get it in now while she is already getting surgery rather than have to do another surgery later if they need it.

The surgery is scheduled for 10:15 tomorrow morning. Although it sounds simple, this is major surgery for Madeline and will have a certain amount of risk associated with it, and like good parents, we are scared. Please pray for the surgeons working with her, pray for a successful and minimally invasive surgery. Pray that Madeline tolerates it well and recovers quickly. We’ll try to keep you updated as things progress.

Grace,
Shanker & Lisa.

Sunday, October 17, 2010

Madeline update

Dear friends,

What a whirlwind of a weekend. I ended up getting sick anyways, despite having stayed away from home. Thank the Lord it was just a quick bug. The show went well this weekend, a special thanks to all who attended and helped out. We were all tired I’m sure, but we had some fun. Nothing like great wine, great music, and great friends to hang out with.

I haven’t seen Madeline for 2 days, which is how long I have to stay away when I’ve been sick. I’ve really missed her, it was good just to sit with her and look into her big eyes and talk to her and tell her stories about her sisters until she dozed off to sleep.

Madeline was briefly scheduled to have surgery on Monday morning for her diaphragm, but her heart surgeon doesn’t think that will fix anything. The problem still is that she has 3 holes in her heart and blood is not flowing correctly out to her body and lungs as a result. He (the surgeon) thinks that the better fix will be to repair her heart requiring open heart surgery on a bypass machine.

Needless to say, the thought terrifies me. It’s another one of those things where it’s best to wait until she gets bigger, but can she wait that long. They will be having a conference on Monday to discuss her case. Please pray for good discussion and that the doctors and surgeons can come up with the best plan for Madeline that will help her get better and go home.

Most of the time Madeline does fine. She still does have her desat episodes from time to time. Although they are not more frequent, they can be more severe these days. Madeline is growing though, she is getting ready to pass the 4lb mark!! Praise the Lord. Please pray for Madeline as the docs talk about her. Pray that her body continues to get stronger and stronger each day.

Grace,
Shanker & Lisa.

Thursday, October 14, 2010

Everyone's having desats

Dear friends,

It has been a rough few days. Lisa got sick and the 3 other girls have followed, Lisa described our home as “puke city”. Madeline has another lung infection now, which is making it a little more difficult for her to exchange oxygen leading to more (and deeper desat episodes). Some of these are accompanied with dangerous drops in her heart rate as well.

Seems likely that Madeline will have surgery soon on her partially paralyzed diaphragm, although there still is no plan as to who will do it or when will it get done. The ventilator is doing a good job of keeping her lungs fully inflated so the desat episodes are not likely a result of her diaphragm not working, but rather a result of decreased use of diuretics (they throw her sodium levels off) and her new lung infection which is getting her congested.

And to add to all of this we have a big audio show this weekend. We have been real busy and preparations are under way to get everything in order for the weekend long show and the two after show parties we are having at Soundings. Every year I feel we are not quite prepared for the show, and this year, with Madeline, I feel even less prepared.

This morning Lisa was here as Madeline had a desat episode accompanied by drop in heart rate. Madeline’s heart rate dropped to 40, her saturation levels dropped down to 40’s, she was blue. Lisa tolerated it very well considering she was crying. Sara bagged Madeline back using quick short breathes, long breaths with the bag only cause her stats to plummet.

A short while ago a respiratory tech came in with some tubing and said “did they tell you about the nebulizer medicine we are going to give her?”. I said no, he said they had confirmed the lung infection and he had some medicine he would administer through her vent tube and bagging. Madeline was sleeping peacefully and hadn’t desatted at all since the morning. He hooked up the tubing, turned on air to the bag, and began long slow bagging.

I watched as Madeline’s sats dropped from 85 down to the high 20’s and her heart rate dropped from 140 down to the high 30’s. I wanted to yell, but he was a trained professional, and before I could Sara was already in the room. “What are you doing?” she asked, and then she quickly instructed the RT on the proper bagging method for Madeline and slowly she came back around.

This was my limit…the point that I just curled up and cried for a while. I am amazed how strong God has made us in the face of all of this, but this was a little more than I could do. Sara came in with some tissue and ice water and we talked. She is amazing, she has such a calming effect, not only with Lisa and I but also with Madeline. I am worried about what would happen to Madeline if Sara were not around.

I am now forbidden to go home on account of sick kids, so I’m gonna spend the night at the hospital. Somehow I have to get home, changed, and back to the audio show for last minute setup early in the morning. Please pray a lot for Madeline and all of us, we really need it now to get through the weekend. Pray also for Michael, he is back here for a procedure to balloon his aorta. Pray that goes well. And as Molly prays every night, pray for all the mommies and babies to be healthy.

In the strength of Jesus,
Shanker & Lisa.

Monday, October 11, 2010

More prayers needed.

Dear friends,

More prayers are needed once again for Madeline Grace. She’s hit some rough patches on Saturday night and Sunday where her sats (blood oxygen levels) drop low. Normally she has these desat episodes and recovers quickly on her own with little or no adjustment to her vent settings. But these ones went lower and took her longer to recover, on a couple of occasions the nurses had to bag her to bring her out of it. Also, her heart has been dropping real low with some of these.

Madeline is riding a fine line between having her lungs oversaturated with blood and insufficient weight gain as a result of the diuretics. The docs are thinking they need to go ahead with the surgery to fix her paralyzed diaphragm. They are working on getting the cardiologists, pulmonologists, and the surgical teams together to discuss her case and come up with a plan, but it sounds like another surgery is in Madeline’s near future. I am not looking forward to it.

Tonight I was holding Madeline’s little hand as she was trying to fall asleep. She was crying a little as kids often do when falling asleep. As I held her fingers and gazed into her eyes, it hit me - This Friday she’ll be two months old, and still I don’t even know what she sounds like. Asides from a couple of little sounds, I haven’t heard Madeline, her vent tube prevents her from this. Maybe it was culmative, but it really hit me hard tonight. I really want her to get off the ventilator so I can hear her, even if all she does is scream and cry.

Another small boy passed away here on Sunday.

Please pray for Madeline, pray for a miracle to occur, I’m ready for this, I think she is too. Pray for her health, that she can grow and become strong. Pray that if the surgery must happen, that it goes very well. Pray for Lisa and I, that we can always find comfort and peace in the arms of Jesus in whatever happens. Pray for the family of that little boy, that they would be comforted.

Grace,
Shanker & Lisa.

Thursday, October 7, 2010

Praise God - good news for Anabella

Tears…of Joy. God is amazing. Read below..

From Anabella’s Aunt:
“Shanker,
I wanted to let you know that due to all the wonderful prayers, Annabella got to go home today. I fully believe the recovery started last Saturday. While Adam was holding Bella he was singing hyms to her and praying. Not long after you left she woke up and looked at him and asked for mama. She wasn't happy until my sister was back in the room holding her. From there she started recovering and surpassed the doctors expectations for her recovery. She began to use her left side, talk, and even walk! She is still weak and needs to be watched closely, but she wasn't expected to walk or recover this quickly. Thank you so much for your prayers and for those of all your friends. Keep the faith. God has a plan for Madeline just as He does for Bella. Madeline will grow, I know it. Maybe Adam should go in and sing hyms to her. Thanks for the update and know that you are all in our prayers.
Amy”
Grace,
Shanker.

No title


Dear friends,

Madeline is mostly doing good. It’s hard to assimilate all the news, if you look at it minute by minute there is a lot of good news and a lot of bad news and urgently needed prayers. It kinda looks like the DJIA. But if you average it out, it’s mostly slow progress and favorable news. Some days Madeline gains weight, and then other days she loses it all again.

The doctors are still trying to find the right combination of medication, feeds, diuretics, and additives in order to get her stable so she can grow more effectively. Please pray for Madeline, that she DOES grow and gets healthier with each passing day. Whenver I see her, she seems like such a normal child for her age, smiling, crying, pooping, and sleeping. She recognizes mom and dad well and has her favorite nurses.

God has been so good to us. When I think about what we’re going through, I praise God that we can still stand, that I still have a job, that things still get done around the house, and that my other 3 girls are still cared for. Thanks again to all who have shared this burden with us by serving us and praying for us. I still find it amazing how many things Lisa and I have not been able to get around to that have just been taken care of, we are so blessed.

Please continue to pray for Lisa and I, for strength and energy each and every day. Pray that we can lean on God to get us through this no matter what happens. Pray for Soundings, business is slow to pick up after the summer and it’s time to start paying more bills (yikes!), pray for an abundance of business to come our way.

On another note, just found out that Kate and Chris and baby Michael will be rejoining us soon here at Children’s. Michael needs another procedure related to his heart done. Call me sick but it will be nice to hang out with them again, although I am certain this is the last place on earth they want to be. Pray for Michael, that the procedure goes extremely well for him.

Grace,
Shanker & Lisa

Saturday, October 2, 2010

Another day, more news.

Dear friends,

One more week brings a bevy of news and decisions. Madeline has mostly been doing well, Thursday they pulled her pic line (an IV line that goes up her arm and into her heart) leaving her without any IV lines for the first time in her life since being born. The pic line had required her right arm to be taped to a splint since birth, so the most exciting part was watching Madeline realize she had two of these arm and hand thingies.

They were talking about taking her off the ventilator sometime next week. But then they found something in an x-ray that turned into an MRI and the results were that she has a partially paralyzed diaphragm which is preventing the left lobe of her lung from fully inflating and it is now partially collapsed. No one is sure what caused this but a likely culprit is the ventilator itself.

So a new surgery is required to “tack down” the paralyzed “floppy” part of the diaphragm allowing the rest of the diaphragm to be more effective. They obviously don’t want to do the surgery until she gets bigger, and at the same time they want her off the ventilator. However, the ventilator is necessary until they do the surgery, and so goes most of Madeline’s decisions: “rock” or “hard place”.

Going back to my feeling stranded out on a rock analogy. Now the worst of the storm seems over, the waves are not splashing up on us, the wind has calmed, but still we can’t get off this rock. We just have to stay put for a while. It sometimes feels easier to be in this situation when we’re both feet in living here. The hard part for me is managing a job, being a dad, and keeping house along with being with Madeline at the hospital.

While I’m up on this rock, I still see others everyday, stranded up on their rocks. One of them is 4yr old Anabella Grace. Please pray for her, Anabella is the niece of a friend from Church. She had a couple of seizures and hasn’t really recovered from them. She is now staying here at Childrens in the ICU with a brain infection. Doctors are working hard to figure out what kind of infection it is and how to treat it. Pray for Anabella, pray for her parents.

Please keep praying for Madeline as well. Pray for the doctors meeting on Monday to discuss her again and an upcoming surgery. Pray that her life would be spared and her health continue to improve. Pray for that day, when she will be healthy and home playing with Mom and Dad and her three sisters.

Grace,
Shanker & Lisa.