Our Sweet "Heart": Initiation

Wednesday, October 28, 2009

Initiation

We have officially been initiated into the Cardic ICU world. Yesterday Maddox decided to shake things up a bit. Apparently he didn't think he was getting enough attention. The doctors and nurses aren't sure what caused the following event, but thank goodness our nurse yesterday was Kim, who is very experienced and thorough. Yesterday morning Maddox's oxygen levels went down so the nurses decide to suction him. His lungs were full of blood, lots of blood, and his heart rate dropped quickly. They started chest compressions or CPR, gave him a paralytic quickly so they could ventilate him without him fighting them and shoved him full of meds to get things under control. He lost a lot of blood and needed a blood transfusion, the second in two days, and immediately had a cardiologist in here to do an echo. His heart looked the same as it had before so they assume the whole event was not caused by his heart, but possibly by something clogging his breathing tube, which led the pressure in his left atrium to increase, his heart to hemorrage and his lungs to fill up with blood. Anyway, no one is quite sure, and I really don't undertand anatomy well enough to visualize the process.They immediately brought in the echmo machine, which is a heart/lung bypass machine, and happily did not need to use it. Anyway, he is up on all of his medications, which we were previously weaning and we have taken a few steps backwards. Unfortunatley that is the name of the game around here.

He had a pretty good night and today he has done okay too. He spent a few hours in the interventional radiology department getting a semi-permanent drain put in his stomach to help with all the fluid, and to attempt to get a picc line in, which is basically a longer term IV that goes either into his heart or right next to it. They have tried a couple times already, one time resulted in it being put in an artery that bled and bled and him needing a blood transfusion. The fact that he is on a high dosage of blood thinner adds to his high amount of bleeding. Unfortunately today, even with the guidance of ultrasound, they were unable to get the picc line in. They want to get the line out of his neck which has already been in for several days and shouldn't be in longer than a week due to the increased risk of infection. They are now talking about going in and doing it surgically either when they do heart surgery or just doing surgery for that purpose alone. We have no immediate plans for heart surgery, so I'm not sure what they'll end up doing. Needless to say, life has been a little stressful.

Jeff is leaving tomorrow and I am not looking forward to being here alone, especially if more days like yesterday are in the future, and I have to assume that just by nature of being in the ICU, yesterday is not likely to be our one and only rough day.

For FHE this week, Jeff and I decided to do a little decorating of Maddox's room. Well, at least the glass door of his room.

I LOVE the poster Jeff drew and sometimes can't believe all the talents my Hubby has!

Maddox really is showing his superhero abilities!! We are praying for things to settle down and that he'll make up the ground that was lost yesterday.

So happy 1 week birthday Mad!!! We have miles to go, but we are so grateful that we have you to share this journey with.

- Posted using BlogPress from my iPhone

7 comments:

The Olsen'sOctober 28, 2009 at 6:06 PM
Darling Maddox...you have already brought your mom and dad enough excitement for a long time. Simmer down now. Can't wait to kiss you, hold you, and love on you! Get stronger so you won't need that yucky breathing machine. We want you home for Christmas, so please cooperate.

Love,

Aunt Aimee
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McGrathsOctober 28, 2009 at 7:58 PM
I haven't been on this blog in a little while and just checked it. In tears the whole time. You have a beautiful baby. It amazes me all of the technology that is out there to help him. We'll keep praying.
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AllisonOctober 28, 2009 at 8:05 PM
Holy smokes. Initiation or not, those are absolutely horrible moments to go through. I am so sorry for you and Jeff. There is nothing like having just had a baby, being glued to a breast pump all the time (total empathy from your post below!), and then having to watch your baby being resuscitated. I am so glad that Maddox pulled through his first big rough spot and I will pray that it was just an ET tube problem (we had a few of those... it is such a necessary evil!) and not cardiac related. Keep fighting Maddox!

As far as the PICC line, that stinks that he is already hard to find a line. Grant usually has his arterial and PICC lines placed in a surgical procedure, but I know at our hospital, they could usually still be placed at the bedside using pain meds and paralytics (and avoiding full anesthesia). Hopefully that will be the case. We were allowed to watch the process a few times once we had been there for a while. Hopefully he can avoid a trip to the OR and his doctors can find a good line. We check in every night for updates... do you have an address at the hospital?
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jess dixonOctober 28, 2009 at 8:59 PM
Oh man, he is so cute. I hope he knows we all love him. Any kid would be in heaven with those pictures!
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Erin SOctober 28, 2009 at 9:26 PM
Wow, those pictures are great! He will love those when he gets older! And, Keyan is totally the spitting image of Jeff, oh my goodness!!! Maddox is definetely a little superhero, I hope he has better days. Love you guys!
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thepainterfamilyOctober 29, 2009 at 8:15 AM
Look at those drawings...wow!

You guys are sweet to decorate, and hold FHE! :)

I so admire your courage as you make your way through this Alissa. You exude faith and confidance (even if you don't always feel that way).

xoxo
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Jake and RachelleOctober 30, 2009 at 8:13 AM
I sure hope things calm down out there and that Maddox improves more and more. Love the drawings! Jeff you should work for Disney and make movies.
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Maddox Revere Dixon

Welcome to our story of modern day miracles. We have seen first hand the wonders of our Heavenly Father and have been joined with people all over in earnest prayer for a baby boy... our Miracle Maddox.

Maddox was diagnosed prenatally with Aortic Stenosis and Mitral Regurgitation. We found out at 27 weeks gestational age that he had a congenital heart defect. By 29 weeks he was in heart failure and had developed hydrops(fluid under the skin, in his abdomen, and around his heart). The plan was to deliver him at 30 weeks via c-section and after birth attempt to get him stable enough to try to open up his aortic valve. We were also given the option of doing nothing and delivering vaginally once he had passed away, which they thought would be soon. The doctors gave him a less than 1% chance of survival if we tried to intervene. We started planning his funeral. The week we were scheduled to have the c-section we were given the option of flying out to Boston to do a fetal intervention where they would essentially operate on Maddox in the womb. The doctors in Boston weren't even sure that Maddox would be alive once we got off the plane. Two days later we had the fetal intervention where they ballooned open the aortic valve, put a stent in the atrial septum as well as a hole above the stent, and removed some of the fluid in Maddox's belly. Maddox was the 9th baby with his unique heart condition to have undergone this type of intervention. It was successful, and Maddox was delivered at 37 weeks in Boston, where he underwent open heart surgery at 3 weeks of age. At two months of age Maddox came home to Texas. We are now trying to adjust to the new normal: multiple weekly doctors' visits, g-tube feeds, medications administered throughout the day, insurance claims, and including our three other children in the care of their amazing little brother. What an adventure. More surgery is in the Mad-man's future, but he has a future, and for that we will be forever grateful.