Grace

Zachary has been back at the hospital for three weeks now.  Time gets a way from you when you are at the hospital.  I keep asking myself how in the world did we do this for 17 weeks? 

He recovered quickly from his last heart surgery on November 6th.  He came home 5 days after he had his surgery and looked awesome, until Sunday, November 16th.  Zachary started looking really puffy in his face and not acting himself.   The doctors said after this type of heart surgery Zachary's head would be swollen because his body had to adjust to the new pressures going through his heart and the rest of his body.  With any of our other kids, I wouldn't really think too much about it, but, this is Zachary.   Since he just had his heart surgery my mind kept thinking "Man, something isn't right."  I didn't want to take him in just yet as I was praying he would just get better.  That Sunday night was horrible.  He was up every twenty minutes crying and miserable.  I called the cardiologist that was on call and they said to give him more of his medicine (Lasix) that helps get the fluid off of his lungs and body.  I did that Sunday night and we made it to Monday morning and he looked HORRIBLE.  Sue was there with me Monday morning and when she saw him she was in shock too.  We went to see the cardiologist that morning and again they didn't seem too concerned. They gave us another medicine to help pull fluid off his body.  We went home, gave the new medicine and waited.  He seemed slightly better during the day but then again on Monday night he was up all night and guess what, so was I.  Now it's Tuesday morning at 4am and I am feeling helpless and have no idea what to do.  I had to call the cardiologist on call again and of course it was time to take a trip to the ER at PCH.  We arrived at PCH around 7:30am on Tuesday November 18th.  They took one look at him and said he's not good.  

Fast forward a couple weeks to November 23rd.  We found out thru all of this that Zachary had been building up fluid called chyle (a fatty fluid) around his lungs that would not be able to be taken care with the medicine he was on.  It requires more intervention.  They had to place a chest tube to drain that fluid.  He has continued to drain fluid for the past week.  They had to switch him to a formula that has little to no fat in it.  The fat is coming out of his lymphatic duct and causing this build up of fluid.  The medical term in Chylothorax.  You can google it.  There is a lot to explain so hold on tight!  

They switched his formula on November 24th and have been watching the amount of fluid that has been coming out.  By this point they would have expected the fluid to subside some or completely stop.  Every day when the doctors come around and do their rounds to discuss a plan of action it is always waiting and see what happens.  They have a few more things they can try to see if it helps the lymphatic duct heal and stop leaking the fatty fluid.  The next step was to put an IV line (PICC) in and start TPN which is another form of nutrition that is not given thru the belly, and is not a formula but provides enough to live for awhile.   They placed the new IV line Saturday, November 29th and stopped his formula and switched him to TPN.  We were there for this that morning and afternoon but had left for a little while in the late afternoon and came back in the evening.  When we got back to the hospital his chest tube had fallen out.  BUMMER!  Now we were unable to see how much fluid output he was having.  We were praying he would heal and would be ok from this point on.  Zachary had other plans.  

Sunday November 30th we were with him most of the day and I noticed he was looking puffy again. I stayed with Zachary until about 9pm and he seemed worse than he did that morning.  He was breathing hard and looked miserable just like he did when we brought him in to the ER.  I was praying that maybe it was just too much "water" weight and more lasik's would help.  So, they did an IV dose of his lasiks (the drug that pulls the fluid off his lungs) and this did not seem to help.   

We got the dreaded call at 3am from the hospital.  UGH, half asleep, I answer my phone and the doctor says "Hi Becky,  this is Zachary's doctor.  Just wanted to let you know that Zachary is looking worse and we need to put his chest tube back in."  I process what she said and give consent for them to do the chest tube.  After this call of course it means no more sleep for me.  I tossed and turned and my brain went a thousand directions.  Finally, at 6:30 I got out of bed, threw some clothes on and headed to the hospital.  He had 195ml of fluid that had built up.  

Now today, December 1, 2014 he has his chest tube back in, started a new heart med to lower his PA pressures and is back on oxygen.  Now we wait some more.  Doctors would like to wait a couple more days to see if the fluid tapers off or if it continues at the rate it has been.  If he continues to have a lot of output they will do another heart catheterization to check pressures and make sure everything is functioning the way it is supposed to.  Then from there they will make decisions for what is next. It could be as easy as the lymphatic duct healing itself to as significant as having to go back in and fix something in his heart. 

 At this point God has given us the Grace we need on a day to day basis.  I am so thankful for his Grace and that he knows exactly the plan he has for Zachary even though we don't.   It is not easy having my two healthy boys who crave my attention and I am unable to provide some of that attention, to caring and advocate for Zachary every day, and being a wife to David.  By God's Grace we are able to move on day to day.  Thank you all for continued prayers.

Zachary's first birthday is coming up on December 10th.   By God's Grace we have come this far.  He has given us just what we need for our day to day journey with Zachary.  We would love to invite anyone who wants to come to the open house at the end of December.  Email us on the right side of the blog if you did not get an invitation. (You need to view the blog in web mode if you are on a mobile device. )

Chillin with mama 

Lookin at Grandma Lisa!