Elijah update....

Hi :)  Eli is doing ok, but it was a rough couple of weeks.  For those who don't know how it all started I noticed that Eli was having some labored breathing and that his color was a bit off.  I took him to the pediatrician and she said his retractions were okay since he sounded clear and he was to see his cardiologist the next day.  I think i layed awake next to him all night watching him breath, it was scary!!  The next day we took Eli to Dr . Orie who also said he sounded clear and that in some babies with ds their esphagus can be a bit "crushed" causing the retractions.  Thursday was still breathing hard and by Friday I thought enough was enough.  David called the ped and came home early to go with us to see her.  Glad he did, she sent us to the hospital via ambulance.  I rode with Eli while David took Caleb home to my mom who was watching Gabriel.  His sats were only 82....should be 94 at the lowest...talk about a scared mom!! 

We got to the ER and they hooked him from the ambulance O2 to theirs and did all the testing again.  With O2 on he would sat at 97 which was ok.  Unfortunately, he was going to have blood drawn and an IV placed.  This is SO hard for Eli.  With ds they usually have flat veins.  It took 9 yes NINE sticks to get the blood and IV.  Eli was crying hysterically as was I :(

We were admitted to the eighth floor and there we stayed until Sunday afternoon when they thought Eli was stable enough to send us home on O2.  In the elevator he scared me, but he was okay, then the ride home too...he seemed short of breath even on the O2. (The reason would be revealed at a later date)  We went home and brought his crib mattress on the living room floor so I could sleep on the couch and be next to him.  We all took a much needed nap.  Eli woke and seemed hungry so we tried to feed, but he wasn't interested so we put his feed through his tube.  A few short hours later David and I both thought he looked blue and then he was really retracting...we called 911 and they wisked him away (with Daddy this time as Caleb was really upset so I stayed a bit with him....talk about gut wrenching on all accounts)  David called and said that he was stable and on O2.  I got Caleb to sleep and headed off to the ER.  We were there for a bit and they decided he needed high flow oxygen.  :(  He did not like this!!  And guess what??  Yep another blood draw and IV...SIX sticks this time...

We were taken up to the 10th floor and David spent the night.  We were informed that he had humanmetanoma virus (a very bad strain of RSV) and CMV (mono).  He stayed on high flow for days and was unable to be weaned off it.  We were sent to the PICU and then sent back to the floor..( I won't even go into my frustration with that!!)  While back on the floor we had an amazing resident who FINALLY listened to my PLEA FROM A MOMS HEART!!!  Please call his cardiologist, I really think he has an issue.  When his cardio finally came (5 hours later...mind you he is AMAZING and in high demand so this time did not bother us too much) he said "everyone wants to blame the heart guy, people he is repaired, this isn't a heart issue".  They sent him for an echo and when we came back to the PICU the cardio hung his head and said "its a heart issue".  Eli had an efusion around his heart.  Not sure if you all know what this is or means, but for us it meant this time in the hospital being sick was nothing short of a blessing!!  Something called tampinad can happen when too much fluid surrounds your heart it squeezes it and can eventually kill you.  In a baby his age we would not have seen any other symptoms.  Crazy thing is as soon as we found the efusion, his wheezing and breathing got so much better!!  God totally used the RSV for us to find the efusion.  GO GOD!!! 

We tried treating the efusion with steroids and motrin around the clock with no changes.  So Monday Elijahs cardiologist in Buffalo and his surgeon in Rochester decided it was time to make the trek to Rochester to have the efusion drained.  Had it been towards the front of his heart they could have done a ultrasound guided needle to asperate, but it was at the back which meant opening him up again.  Finally on Wednesday we took the long ambulance ride to Strong Memorial hospital where lots of familiar nurses and doctors awaited our arrival (well, not ours they were all excited to see Eli again)

Surgery was scheduled for Thursday but we got bumped (had that experience twice before) so we went at 7:30 Friday morning.  The surgeon was able to make about a 2 inch incision connected to his original incision and put the drain in about the same place it was before.  This drain is quite painful and it is hard to watch him try to move being so uncomfortable.   He spiked a fever but got over that quickly and it took a bit to get him to eat for anyone but mommy. 

We are at 4 days post op and are hoping they will pull the drain tomorrow and do the echo and let us go home!! 

We have been SO very blessed by the Ronald McDonald house, I would encourage each and everyone of you to donate time or supplies to one close to you.  We are planning to do something for our local RMH maybe over the summer. 

To those of you who are new to the blog ( I know there are several of you, welcome :)  Feel free to scroll down and read our story as it unfolds.  I will soon finish our story.  Thank you all for your prayers and for blessing us!!  We love all of you.

Tired....

But thankful that God cares for us the way He does and only He can!!  I will endure the sleepies to be with Elijah and walk this journey with him.  It is so hard because I miss my boys at home.   I can't wait to post pictures of Gabe on here, but I need to upload to this computer, but let me tell you he is STUNNING just like his brothers!!

So many have asked me to update, so here I am.  Eli is at Strong Memorial awaitng another heart surgery.  We are tired, overwhelmed and feeling blessed all in the same breath. 

Also, so many have asked how they could help.  We have had to pay out of pocket for meds and are going to have to stay in a hotel here as the RMH is not available at this time.  If you want to give up your coffee for a day to help, every bit adds up.  Our paypal link is on the side of this post.
More than ANYTHING we covet your prayers.  That this can be minimally invasive for Eli and that our stay would not exceed 5 days as they say...I want to be home with all my boys under one roof!!!

Thank you for blessing our family!!  We love each one of you!!