6.29.2010

Cohen's "newspaper clip"

Michael Cohen Marshall

Born in Dallas, TX on June 7, 2010, the first child of Megan and Brent Marshall, Michael Cohen Marshall came into the world at 7 lbs. 6 oz., with a hearty cry and a congenital heart condition. He was known as The Mighty Cohen in his short little life, for he endured multiple surgeries and procedures. For twelve days, Cohen fought with the heart of a lion, but on June 18, 2010, his little body could not match his fighting spirit. He was delivered into the Kingdom of Heaven at 8:35pm in his parents’ arms. He was loved and adored by his parents, their families and friends every day of his life. Cohen touched thousands of lives with his story. The world came to know him through Megan’s blog and many felt they knew him long before he was even born. Sometimes the smallest feet leave the biggest footprints in this world and Cohen has left a lasting impression on us all; he was truly an amazing little boy. His parents want to thank all of his supporters, doctors, nurses and prayer warriors for their care, concern, support and prayers. Cohen is survived by his parents: Megan & Brent Marshall; Grandparents: ............................... Aunts: ...........................; Uncles:......................; and countless cousins, family and friends. Services will be held Thursday, July 1...............

{yes, these are his sweet feet...taken 6.18.10}


{This sweet picture is in the paper, too. It was taken before he passed, also on 6.18.10}

It's in today's paper.

I've had a hard time saying obituary. I don't think I have said it. I hadn't typed it out until now. I think I've been saying newspaper clip.

Brent's mom wrote it. I took out names and such because of searching purposes.


Psalm 34:18 The Lord is close to the brokenhearted and saves those who are crushed in spirit.

John 11: 25-26 "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die..."



Photobucket

6.25.2010

A week ago

I can't believe it has been a week. We are going to Dallas when Brent gets off work. We will come back with our little guy tomorrow.

His memorial service will be next Thursday, the 1st.

Still not completely back to the blog...but maybe soon.

Proverbs 3:3-6

3 Let love and faithfulness never leave you;
bind them around your neck,
write them on the tablet of your heart.

4 Then you will win favor and a good name
in the sight of God and man.

5 Trust in the LORD with all your heart
and lean not on your own understanding;

6 in all your ways acknowledge him,
and he will make your paths straight.


I love this picture. It was taken a few hours after he was born. He was in route from Parkland to Children's.

{6.7.10}


Thank you all for your continuous thoughts & prayers. We certainly feel them.

Thank you Tahnie for hosting the Stella & Dot fundraiser Jessica posted about below. Jessica has emailed me about several other fundraiser requests. People are amazing.

Photobucket

6.22.2010

Hi! Jess here...

Hello friends! Its Jessica, again, from In the Sky with Diamonds... Megan & Brent are taking a bit of a break from the bloggy world to be with each other right now. They will be back soon, don't you worry your pretty little heads :)

As the sponsor of Send Love to Cohen, I wanted to take a minute to THANK YOU for everyone's love, support, and kind words surrounding Megan & Brent over the past few months. The outpouring of love on both Send Love to Cohen Facebook and Send Love to Cohen blog has been, well, nothing short of amazing. Every time I logged on, my heart swelled reading each and every touching comment. It is incredible to see how many lives that beautiful little baby touched in his time here on Earth. And even though he is in Heaven now, I know he will continue to change lives and help others (through CHD research) far into the future.

I just want to remind you to keep checking both Send Love to Cohen Facebook and Send Love to Cohen blog for updates and ways to help Megan & Brent. Don't forget that we have set up the Baby Cohen Memorial Trust, that will be used solely for expenses relating to medical bills and assistance to the Marshall family during this time of need.

Also, I wanted to share with you an other amazing opportunity to help Megan & Brent. One of Cohen's many friends contacted me yesterday wanting to help. I was touched by her kindness and generosity. This is a wonderful way to help out Megan & Brent, I hope that you will all take a moment to have a look and participate if you feel so inclined!

I was contacted by Tahnie, a stylist for Stella & Dot. She has experienced the hardship of mounting hospital bills, herself, and felt compelled to offer up some assistance. She is donating 30% of sales from her Stella & Dot website from NOW until July 6th. The money raised will be donated to the Baby Cohen Marshall Special Needs Trust. You can learn more about Cohen's Memorial Trust HERE. Please visit Send Love to Cohen for more information and a letter from Tahnie.

Again, THANK YOU, THANK YOU, THANK YOU for supporting and loving Megan, Brent & sweet angel Cohen. They were amazing parents to Cohen and have shown incredible strength and poise through the hardest of situations. I know they appreciate every single one of your thoughts and prayers.


6.21.2010

Thank you all for your love, support, thoughts and prayers. Megan and I will return to the blog soon.

Sent from my iPhone


6.17.2010

Starting Dialysis

They decided to start dialysis today on Cohen. He has so much fluid and since his kidneys and liver aren't functioning properly to rid them, they must do something to flush the system out to see if his kidneys and liver will start working. We certainly pray this works! It's hard to tell right now what kind of failure his kidneys and liver have at this point. The failure is due to the procedures he has had to have and the drugs he has been on in the past week.

Luckily, he has been weened off a LOT of the meds. So far, his vitals have been holding. The scary one for Brent and I seems to be the amiodarone. This was the medication he was put on after his cardiac arrest last week. It helps pace the heart. Well, it's toxic to the liver and/or kidneys. So, they took him off of this yesterday morning. They do have some on standby if he starts to have any arrhythmias. We also pray this doesn't happen. That cardiac arrest really set him back.

They do have a concern that there could be an opening or tear between his PD cath and chest tubes. If this is the case, the dialysis fluid can get up into the chest cavity. It shouldn't be harmful but it won't allow the dialysis to work as it should. So we REALLY need for the dialysis fluid to drain out the PD cath so that it focuses on the area that needs to be flushed!

Please work dialysis.

Thank you for praying for our sweet baby!!!

Here are some pictures we took this morning.....


aren't Cohen's pups cute? The blue one is BT and we are still working on a name for the other one. He looks just like Elton! My brother got it for him.
they are keeping a close eye on him....


sweet little hands....



While we try to wait patiently, we will snack on these thanks to the Gross'. Thank you guys :)

We've gotten lots of sweet treats in the past few days! We are loving them! Also snapping pics to post of them.

I'll keep you updated.

Photobucket

6.16.2010

Cohen update & random pics

Cohen has been stable for about 48 hours:) We think he has gotten some good rest. His acidosis (lactic acid) levels have gone down about 6 points in over the past two days. That is a major answered prayer! They are hoping his calmness & resting will help him heal after his busy first week. The kidneys and liver have taken hard hits with the meds and procedures, so our specific prayer now is LIVER & KIDNEYS - PLEASE PLEASE START WORKING.

There are tons of levels and stats I could go over with you all. They all mean - we need the liver and kidneys to work. The heart cath put a lot of dye into Cohen's body. The dye is hard on kidneys and liver. He has had two heart caths but on the second one, they had to put twice as much dye in.

They may start dialysis tomorrow. They are still making some decisions as to the best option for Cohen right now. He needs time. He needs time but time can also make things hard if they get worse. We had a few bad minutes this afternoon ...mostly of worry. However, we are thankful Cohen has had a peaceful two days of rest. We just sit and stare at how sweet he is. I did snap a few with my rebel that I'll post in a day or two.. I have a few iphone pics below. Yes, he is cute no matter how the picture was taken :)

Cohen's stats are showing that his heart is probably working with the heart surgery he had on Wednesday. His BT Shunt and TAPRV repair are doing as they should, as far as we know. Now, we have some obstacles that hopefully Cohen can pull through. He is trying so hard and I know that's all he can do.

He wants to be awake with us so bad. He opened his eyes this afternoon and yesterday morning. It's not a terrible thing but he really shouldn't be doing that. So, they increased his paralytic. His eyes are pretty.

I've snapped a few pics in the past few days I thought I would share with you guys. Sorry, they are all iphone..not always the greatest in darker light situations. I'll try to keep my point and shoot close by. My rebel isn't always quickest to whip out. Cohen has gotten some sweet and soft gifts I'll be posting pics of those soon, too.

This is currently my favorite necklace....

Here was our sweet little guy yesterday......... (I'm still avoiding putting the open chest pics on blog)
They have his sweet pup, BT, resting by him and keeping some lines propped up nicely.

As I've mentioned, Brent is all on top of his notebook. It keeps us up-to-the minute on Cohen's stats and when the doctors do rounds he has questions to ask and things to write down. It's a great thing for us to keep up with everything.
We have been using this wagon to tote around some things to car/room/waiting room in attempt to get organized. It's been in my sight for a day or two now and I keep thinking that hopefully Cohen can take a ride in it someday when he has no cords :)

After one of Cohen's procedures, one of the nurses, April, put these sweet little booties on him :) I thought they were adorable! They came with a matching hat.

I was sitting on the couch the other day and this is what I saw.....

Another sweet pic... Brent was making a list with Cohen of the professional baseball teams. We plan to take him to a game at each stadium.
The past few nights, on one of our best friends, Natalie, has come up to visit with us :) Tonight, she brought us some yummy dinner...some of our fav in Dallas. This picture is from the week before Cohen was born but I forgot to post it. We went to dinner..

We are having a few visitors here and there. Natalie is the only one we've had really come sit for a bit. We've had a few sweet people swing by briefly and we have a few people requesting to bring us meals. So thoughtful. As far as Cohen's visitors, they still don't want many people back because of risk of infection with his open chest. His daddy and I are pretty protective as well. Hopefully, we will get there.

I continue to get emails asking how Brent and I are. We are still hanging in there too! We have the best reason in the world to be strong so most the time, we're okay. I'm still sore and having some pain but definitely up walking more. I was HATING the wheelchair. Still using it for long distance hallways and such. Cohen probably has enough milk to share with a small army. So that is a pretty repetitive process that I'm so trying to stay on top of every 3 hours.

Once again, thank you all for the prayers and spreading the word about Cohen's situation. God is in control and I know he is touching others lives through Cohen. I've certainly enjoyed reading the emails/messages hearing about it. I know a lot of you are blogging, tweeting, etc about Cohen and though I may not be commenting on it, I so appreciate it. If I come across one, I always so Brent as well. At some point, I'd like to have a link to all the posts on Cohen. I'd love for him to be able to read them all in the future. So, someday...watch for a post requesting your link if you have posted about our family ;)

So just a reminder, the kidneys and liver must start working. We need that tinkle to start!

I thought I'd share this text from Brent. As many of you know, I love ICEEs...and I love Super Target. I came up to the waiting room the other day when Brent was still back in the room and I got this text...



Photobucket

6.14.2010

Cohen turns a week old :)

[real quick, someone mentioned spam popping up..yucky spam..on my blog..I don't get any of that since I have a Mac, but if you are seeing any of that, will you let me know?}

What a week.

{notice, I put the post time for exactly 8:55am..that's when he was born a week ago.}

I did a post HERE early Sunday morning as a refresher of what Cohen has been going through all week. As of today, he is one week old. As of Saturday, he had gone through 4 surgeries in just 5 days. As of Sunday(yesterday), he has gone through 5 surgeries in 6 days. Yesterday seemed to be scariest because they told us basically he was on the edge.

They really wanted to find what they were looking/hoping for.

Well, they didn't find it. It wasn't there....what they were looking for.

Where do they go from here? They being the doctors. We still have faith they are the best.

I can't even tell you what all the doctor who did the heart cath today told us. It was true stuff but it was scary stuff. Life and death stuff. Not easy stuff to hear.

First of all, I know some of our nurses read this blog...As I've mentioned before, I know I'm not the best at writing all these terms and explaining them. I understand what I hear but as far as getting everything out verbally or on the blog, I'm not always the greatest. I'm a good listener. Anyways, if you see where I'm wrong on a term or something I'm saying, I'd love for you to tell me so I can correct it ;)

Cohen has been having high levels of lactic acid. This can also be called acidosis. To read more about lactic acid you can go HERE. So, it has to do with blood flow. Acidosis leads to the risk of sepsis, which is an infection in the blood.

So, yesterday doctors began trying extra hard to figure out the cause. Cohen had a procedure done on his esophagus to determine if there was a tear or leak somewhere within the esophagus or tummy that could have been causing or elevating this lactic acid levels. They found nothing there. They then decided to go in for a second heart cath.

Heart caths are hard because of the dye they use. It is not good for the kidneys. Pray his kidneys and livers are strong because he has had two heart caths in 6 days.

This heart cath was an extensive one compared to his first. So, double the dye :( It was one that made the doctors nervous to do on him since he had been through so much, but it was a measure they had to take in order to determine if the blood flow from the heart was over pumping and causing the acidosis. Perhaps an extra collateral artery. Well, there were no missed collateral. The good thing found in this heart cath, everything was working properly with the heart. Prayers are being answered with his little heart!!! You guys have been saying them since mid February and we can't thank you enough.

However, they are dumbfounded as to what is causing the acidosis. There are TONS of things that could have actually caused this...but for some reason, they aren't showing up in his labs, cultures, tests, etc. The doctor said that Cohen has had so many "insults" (surgeries, procedures, CARDIAC ARREST, etc) this week that there is a number of things that could be causing it. But why aren't they showing up to indicate where it's coming from? (specific prayer!) There are lots of infections that could be causing this. Once again, not showing up. The cardiac arrest really set him back the doctors have straight out told us. As for the "insults", they were all things that had to be done in order for Cohen to have probably made it through this week. There is nothing we have done, there is nothing the doctors have done...to cause this.

He needs time. He needs time to heal and time for them to figure out what is going on. The sucky thing is, without them knowing what is going on, it's hard for them to tell us how long he has.

Those conversations were NOT pleasant ones with those two doctors today.

They are going to go ahead and go forward with dialysis in order to get some of the fluid drained. They are hoping to wait just a bit but it could start sometime tonight. It's already 1:30am (as I type this) so we will see. Brent is going back in about 30 minutes to see how things are.

We are trying to keep our faith. We have moments but we are pulling one another through. Brent has been amazing and totally catches me when I fall. The falling hurts...and it happens in the blink of an eye. We aren't giving up and the doctors aren't giving up. Clearly Cohen isn't giving up. I'm pretty sure Brent and I both can hear it in the voices of the doctors that they are pretty surprised he has made it through all of this in the past 6 days. Thank God he has and for all the prayers surrounding him.

The doctors and nurses really encourage us to ask questions and understand what is going on. Brent is amazing at this. I'm doing good (better). He googles things, writes questions downs, etc. He writes Cohen's stats down almost around the clock. I think it even helps the doctors, on occasion, to hear perhaps another possibility. Everyone is racking their brain in order to try and figure out what is going on. I'm able to ask questions based on conversations we have and I'm slowly but surely...quickly...learning more and more...every hour.

I also want to mention how amazing of a daddy Brent already is. If I were up and walking 100%, I would so have my camera and video recording him singing to Cohen, talking to him, playing him music, making up jingles, etc. It is the sweetest thing ever. I can only stand by him for a few minutes at a time before I start hurting. I still chat with him and rub his little arms and legs.

I would love if I got an email with a similar situation on this acidosis business. How awesome would that be?! I've gotten SO many emails from blog readers who have been in some sort of similar situations regarding heart babies and things we are going through.

It breaks my heart to see Cohen so swollen. I've gotten use to the of wires, cords and even the open chest (okay, that is still tough). But man, when you see your little baby so swollen, it's hard. He looks so different then I first remember him, that very first time. He looks miserable. He isn't. He can't feel this stuff and he won't remember it. Thank God. So, I do have pictures, but I won't leave you with those. I LOVE my delivery pictures. I LOVE the slideshow! Here are a few pics from it....and HERE is the slideshow if you haven't seen it :) (There is also a link under header in right corner.)







We got the sweetest, coolest, most creative goodie basket from our wonderful friends today. I have got to take pictures of it still. We've started playing the with the toys and eating the snacks so I need to whip the camera out ASAP! Did I mention it came with our favorites? CONEYS!

Cohen has gotten a few other super thoughtful gifts. He loves them. Luckily, he can have anything besides flowers. My mom got him his first balloons yesterday.

I will try to keep the updates coming and we would so graciously appreciate you all continuing with your prayers. We do believe they are working. We are just praying Cohen's little body can handle everything. A specific prayer can be to determine what is causing the acidosis and for Cohen to be able to fight it off.

My friend Kirsten emailed me this verse and I love it. I know she knows a lot of what I'm feeling as she has been through a lot of this before.

1 I lift up my eyes to the hills—
where does my help come from?

2 My help comes from the LORD,
the Maker of heaven and earth.

3 He will not let your foot slip—
he who watches over you will not slumber;

4 indeed, he who watches over Israel
will neither slumber nor sleep.

5 The LORD watches over you—
the LORD is your shade at your right hand;

6 the sun will not harm you by day,
nor the moon by night.

7 The LORD will keep you from all harm—
he will watch over your life;

8 the LORD will watch over your coming and going
both now and forevermore.


Photobucket

6.13.2010

Four Surgeries in Five Days

Yes- wowzers. Praise the Lord we have a little fighter on our hands.

So far, Cohen has been through a LOT. I can't believe he is only 6 days old. I've not even held him as many times as he has had surgery. I've held him once and in the past 5 days, he has had 4 surgeries.

We are hoping he has a few peaceful days and then maybe they can close his little chest.

As a refresher:

Cohen was born at 8:55am on Monday. His birthday is June 7, 2010. That is also known as 6-7-10. I just wanted to say it a few times since I hadn't yet;) I honestly didn't realize today was Saturday (well now Sunday) until a few hours ago. He was 7 pounds and 6 ounces and 20 inches long. He looks bigger...to most people who have seen him. The nurses tell us he has big feet and long fingers. I think his hair grows daily. His sideburns and the hair on his shoulders are both hilariously cute.

Monday afternoon - He was born with a smooth delivery and taken to the NICU. He even got to meet the friends and family on the way. He remained at Parkland (where he was born) for a few hours). He then headed to Children's. First though, he stopped by my hospital room for me to hold him :) He came over to Children's where he was hooked up to monitors and intubated. His daddy stayed the night with him as I was still in the hospital. Cohen got his first little bath and Brent took some video. It pretty much melts my heart. (make sure you listen to volume)







Tuesday - I got to come see Cohen for a few hours at Children's. He had a lot of tests run and by the end of the day they were thinking he may need to go into surgery that night. I found this out and it was pretty miserable being at a different hospital. The doctors decided to hold off and go ahead and do a heart cath. The heart cath went good and they were able to get some questions answered about Cohen's heart. They decided Wednesday would probably be the day for his BT Shunt and TAPVR repair and they went forward with the heart cath on Tuesday night.

Wednesday - He was stable and getting tests run for his surgery. His little foot and leg had an issue with circulation due to the heart cath procedure.They couldn't find a pulse in one of his feet. It was purple. Finally, they did get a pulse via doppler and were able not to be quite as concerned but to keep an eye on it. I got to come to Children's in the morning thinking his surgery would be a little after lunch. It was a hard few hours watching him, talking to him and thinking about him going into a big surgery and having just had a surgery the night before. He went into surgery on Wednesday about 3:30pm and you can read more about those updates HERE. The doctor was able to accomplish what he was wanting. The shunt has been working properly as well as the repair of the arteries. Everything else just needs to work now, along with them : /


(after BT Shunt & TAPVR repair)

Wednesday night - He did good most of the night but early morning he started having Atrial Tachycardia. His little heart got up to about 300 beats per minute and they basically had to save his little life with manual pumping and CPR. Scary morning and you can read more about that HERE. This incident set him back majorly the doctor informed us. I think it was around this time when part of his lung also collapsed. They have said this really isn't a big deal though, and it will repair. It's also probably because he is on a vent so his lungs haven't been having to work as they normally would.

Thursday - he did pretty good during the day and night. He had several medications added early morning because of the Atrial Tachycardia incident. It was Thursday morning when we met with the doctor and he told us that out of about 19 babies in the cardiac ICU, our baby was the sickest...also the terms "dodging a bullet" and "not out of the woods" were things we learned to come to reality with.

Friday - His vitals started having some troubles staying where they needed to be. His pressures were off and the doctor did not feel comfortable with what was going on. They decided to take him into surgery and wash out the fluid building up around his heart. Since his chest was already open, they could see where the build up was. They were concerned there could have been a clot under the heart. It is imperative that he not get a clot where the shunt is. He is on Heparin to hopefully prevent this. Dr.Forbess said he was glad he did the surgery and he was able to remove a lot of fluid in the wash that would hopefully help some issues going on. I've had several people email and ask about his meds and such. He is on a LOT. If you want specific details, email me and I can let you know. As I've mentioned before, Brent is amazing at learning and knowing all of this stuff. He carries around a spiral notebook and writes down some vitals when we want to monitor and ask questions. He writes when we have questions about anything and he writes a lot of the things that we hear from the nurses and doctors. The staff encourages us to do this so we know what is going on. Anytime something happens, they tell us and ask us if we have questions about it.

The staff has been wonderful to us here at Children's.

Friday evening - Things were still a little shaky because of the recent surgery and them trying to regulate things. It's a constant game of increasing drips (meds) and decreasing in order to get the vitals where they want them. Brent and I decided we wanted to be back in his room with him Friday night. We hadn't stayed in the room during the night yet because things had been so hectic. Well, let me tell you, my anxiety was through the roof. I just had a bad feeling. Sure enough, through the night, the nurses and doctors just kept having issues. Cohen wouldn't tinkle. He was on lasix and still nothing was happening. The staff became concerned that something was going on with his kidneys.

About 9am Saturday, the doctors decided he needed to go into surgery in order to have peritoneal catheter put it. They determined that more than likely, there was fluid around the kidneys making them too tight to work properly. I was a mess before surgery when talking to the doctors. They basically told us with low pressure (which he had for a good 12 hours), the kidneys are the first thing to shut down. This catheter is meant to drain the fluid around the kidneys so that they can start working and he will start to tinkle. They told us that for Cohen to have a chance, his kidneys would have to kick in. If the urine output doesn't improve in 24-48 hours, they will have to do dialysis. I asked if he can recover from dialysis. Doctor said he could but he would pretty much need nothing else to go wrong during (I believe) the dialysis.

The also told us the ECMO machine wasn't really a viable option anymore.

He wasn't really stable before the surgery today, but the doctor said as soon as they began, he kind of got to where he needed to be. He did get a little bit of SVT during surgery but snapped out quickly. He made it through the surgery and most of his vitals have been good. His pressure if at a pretty good point right now. The urine output is still not where they want it to be but the new cath is pulling out a lot of fluid around the kidneys. We hope it keeps doing this and then the urine will hopefully start to come. He is having bouts of acidosis. His heart is working too hard to get oxygen other places when it doesn't really need to. They have come down on some of his meds and his oxygen level in the past few hours so those things are good things.

So, now we are pretty much waiting and praying.

Poor little guy. I'm sure my description of all of this does not even compare to what it actually entails as far as the actual procedures and what Cohen is having to go through :(

Brent and I are full of emotions. Constant doctors approaching us tell us ALL kind of things. We can basically sit and watch doctors and nurses evaluate and adjust things with Cohen all day. We don't. We can't. We watch a lot but we would go crazy if we did sit by his side 24/7. Though I want to be by his side, he needs the doctors and nurses more right now. I still get to see him, talk to him and touch him anytime I want...minus the 15 +hours of his life he has spent in surgery.

So, we are having staff tell us a surgery may be approaching sometimes only 30 minutes before. How amazing to have a staff so ready to always be doing what needs to be done. It's a huge blessing for Cohen. We are waiting in waiting rooms for hourly phone calls during surgery. Then, we wait for the doctors to come out from surgeries to let us know how they went. We are on the edge of our seats every time we hear a footstep or a door crack. We have had to run down hallways to get to doctors waiting to talk to us. We have Chaplains, Priests, etc meeting to talk with us. It is 100% minute by minute with our little baby and it is the most uneasy feeling in the world. We know he is in good hands here at Children's. He is also in the good hands of God. God does have a plan and though the waiting is miserable, there is some reason. The waiting hurts. Thank God Cohen has been such a trooper. I don't care how unbelievably scared we have been within seconds of feeling a little peace, it's all worth it. I know I come off as being strong but I promise you I have many moments were I'm not. I can't count all the moments this week. Is my baby going to make it through the hour? ICK!

Lots of people have emailed and texted and asked how I am doing. I kind of described that above. I'm about as good as I can be. I'm happy to be by my baby all the time but just sad for all he is having to go through. I'm still having lots of the burning c-section pain as my nerves, tissue, etc heals. I had really been slacking on my pain meds but I've now been trying to stay on top of them. I'm not use to not showering everyday...and sleeping in a waiting room...in my flip flops... in a recliner. At least Brent is in a recliner on one side of me and my mom is in one on the other. I feel a bit bad about neglecting emails, calls, etc.. but I figure most people will understand. I do appreciate them.

{these pictures were taken on Wednesday before surgery) Cohen holding mom's finger



As I type this, I saw two doctors running by. I said I didn't like it and Brent jumped out and ran out to make sure it wasn't Cohen. It wasn't. He is doing good. However, his lactic acid levels need to stop going up and he needs to tinkle! They are going to call us in the waiting room with any major changes. Hopefully there won't be any.

As soon as I find out about a situation or surgery, I've been tweeting and posting it on Facebook. There is such an amazing group of prayers warriors out there. We greatly appreciate everyone!


Photobucket

6.10.2010

Updates - dodging a bullet

Hi everyone -(I can't believe I misspelled the title word "dodging" .... I told you, I'm tired. I just fixed it though.)

Sorry I've been a slacker today on the updates. I'm just drained!

Cohen had a good night after his surgery but starting about 5am he kind of took a turn. Since they fixed things up quickly, they didn't let us know everything going on until they had him fixed up and doctor was able to meet with us.

I headed from Children's back to Parkland today about 8am to get discharged. When I got to Parkland is when Brent called that the doctors wanted to meet with us. At that point, we had no idea why. So I had my mom get me back to Children's...keep in mind..I'm in a wheelchair and at the time, I was still connecting to hospitals via basement. I tried to get her to run : /

When I got there we met in the family consultation room. Brent and his mom were in there along with our social worker and the hospital Chaplain. Of course, I immediately thought, oh my God, something has happened and they are going to tell us. The Chaplain introduced himself and said Cohen had been confronted with an issue but that he was stabilized. He let us know, he is often invited to the doctor/family consults to be there for support. I felt a little better at that point. The CV-ICU head doctor (who we talked to all the time) came in quickly after.

Dr.Koch let us know that Cohen had a atrial tachycardia incident. This basically means that his little heart went haywire and had gotten up to about 300 beats per minute. Luckily, since the team is so close by, they were able to start manually pumping his heart and get him stable. They told us with such a major operation his heart just needs meds and guidance in order to properly function and learn what do to. He is at risk now for this to happen again. So hopefully to prevent it, they added and increased medications.

The had the ECMO team bring in the ECMO machine. That is NOT what we want. ECMO is extracorporeal membrane oxygenation. This is a machine used for complete life support to allow the body to rest...usually after major surgery. Cohen is already medically paralyzed (medical induced coma) so it would have made things much worse to have had to go on the ECMO machine. The doctor said on the ECMO he would probably only have 3 or 4 weeks before he had to come off of it.

When we went in to see him after meeting with the doctor, the ECMO machine was in his room. This afternoon, it was across the hall from his room.

The doctor told us that the ups and downs just come with this territory. I felt like I knew that. However, it felt much harder when it actually happened so quickly. He had a successful surgery and we were on such a high. Cohen was such a trooper in the major surgery and he did so well all night. Then, his poor little heart just needed some help. It does not mean the surgery didn't work. The surgery was still successful they just have to get his little body ready to work with his heart . We pray it all works together well. There is lots of adjusting meds and trying to ween him off of them so that they can test how other things are working.

Later in the day I was able to ask more questions. There are no timelines. They told us if this happens, that happens. They so encourage us to ask questions if we have any at all.

I needed peace and quiet after we met with the doctor and then saw Cohen briefly. Brent and I just hung out in the family consultation room. I napped for a bit because Cohen had a whole team in his room with lots of machines. We've been able to spend time and talk to him this this afternoon. He looks good. Well, he looks as good as he can. His color is good and I swear his hair is thicker or longer today.

They were pleased he did good all day today with the changes they added and made. We pray that continues.

I did make it back to Parkland today for a few minutes to get discharged. My OB, Dr.Santiago, has been wonderful at letting me be where I need to be and checking in on me. When she came into discharged me today she checked things with me and found out how things were with Cohen. She also got to watch his delivery slideshow. I would indicate which when she is in the slide show..but they are all kind of dressed the say. Anyways, I've loved having her as my OB in Dallas and I have a few follow ups in the future.

My pain is doing okay. As I mentioned, still in wheelchair. I'm just having to cover to many steps to be walking. I'm having that "burning" which I thought was on the outside of my skin but Dr.Santiago said though it may feel like that, it's probably right under and internal. But man, it freaking hurts sometimes! Only a few times a day really bad..when I stand or move funny. My incision is healing good though.

The nurses and staff at Parkland were all super nice and helpful.

Back to the slideshow, thank you all for the sweet comments :) I do watch it ALL the time.

I'm going to post a few pictures from Tuesday and Wednesday. Tuesday I came to see Cohen at Children's for the first time since I got to hold him when he was on his way to Children's. When I got to Children's they did already have him intubated but he could still open his eyes some :) Wednesday we spent time with him before he went into surgery. I am going to post a picture of him from last night after his surgery. He does have wires and cords all over him. It is sad. In case you don't want to see the chest opening.....you really can't all too well because the picture was taken with an iphone.

I will indicate which pictures are from Tuesday and which are from Wednesday.

Here we are on our way to Children's. For me it was the first time to see him since the day before right after he was born....

Here is his room. We hadn't really moved our things into the back of it when this was taken. There is a couch, chair, armoire. We are going to get Cohen some cute stuff but kinda want to wait until things calm down. Notice, whoever (probably a nurse?) made the cute sign for the bed, reads the blog :) I've had lots of sweet people tell me they are readers here!


On Tuesday (an some of Wednesday) we had to "scrub" in somewhat because they were still waiting on some specific tests results to come in.
He was having a sonogram done here.....


:)


he likes my finger :)


Brent taking me back on Tuesday afternoon....


The next set of pictures are from Wednesday...

Brent showed up to my hospital room with a sweet little stuffy for Cohen on his surgery day.
Talking to our social worker....
This was before he went back for surgery. For the surgery updates, I did them in the previous post.
we named the stuffed pup..BT for the BT shunt Cohen was having put in during surgery.





waiting for the hourly phone calls during the surgery. I think it ended up taking about 5 hours.

Here is he after surgery :( He isn't feeling any pain and he can till hear us. He is a medically induced coma so his body can heal.
All the pics (minus the iphone ones) were taken by Brent's mom. I think she took a few today I'll post soon.


I honestly wish I was better at describing all going on with Cohen medically and using all the terms, but I'm just not right now. Maybe (hopefully) I will be in the future. However, right now when a doctor starts talking to you with phrases like "he dodged a bullet" and "he isn't out of the woods" you kind of just can't think about anything else but your baby. He almost died. He is critical. He may be for critical for a while. It sucks, it really does. The doctor told us we need to take things about a half a day at a time because his situation can change so quickly.

Once again, thank you all for your thoughts and prayers. We greatly appreciate them!

I'm not big on talking on the phone at all right now. Sorry, and no offense to anyone. I am doing some texting though. I am reading and saving all the emails I'm getting. Someday, I will maybe have some time to reply for those..but in the meantime, thank you all for those. I will get back to twitter and facebook updates hopefully tomorrow. Praying it is a good night and day.


Photobucket

Related Posts Plugin for WordPress, Blogger...