Saturday, January 31, 2009
Just a quick update... peewee is moving and i want to try and catch his open eyes.
We still can't hold him because he has the drain line in still. They want to make sure the excess blood is draining away from his heart and not pooling around it. As soon as they take that out we will get to start holding him!! I can't wait! (the doc was just in and said they might be able to take it out tomorrow!!)
The resident ICU doc was just in and told us that they are weening him off the pain meds that cause sedation and switching him to Tylanol with codine! He should start to be a little more awake now. She said that hes doing great!
We are just relaxing while we wait for visitors. Today we have a big group comming up. Amanda, Will, Aunt Katie, Grandma Lucci, Mark, heidi and uncle Mark! We are so lucky to be surrounded by so many people who love Malachi and us. They only let 4 people in the room at a time right now so if you want to come visit let us know and we can tell you when not a lot of people will be here.
Well our first visitors are here so i need to get going. I will update daily as we get new news. Have a GREAT sat.
-Erin, Josh and Malachi
Normally Erin is the one that updates this blog, but I felt I needed to write about 2 things after yesterday's events.
The Power of Prayer...
There have been countless times through thhis entire process with Malachi that we have seen God in action. In the last day or so, we have been provided with a place to stay with no fee for parking, as well as an ample amount of "community food" to nourish and energize us. We have had countless emails, phone calls, texts and visitors to support us. God's hand is in it all. Often we neglect to realiize it is our Father that has provided for our needs. One great example of God's comforting of us came yesterday right after Malachi was out of surgery. We had just seen him and we're in the waiting room as the nurses stabilzed him. Erin looked out the window and saw the following picture. Many would say it is a coincindence, but I say it is another sign of God reassuring and comforting us. Here is that picture as well as a few after surgery.
Friday, January 30, 2009
They were a litte concerned because he had a "floopy airway." Its seems to have improved the more he is waking up. The nurse actually had to hold his jaw to keep the airway open for about 20 mins. The nurses advised us that we shouldn't stay the night here. They will be in and out a lot and will need room to move around. We are planning on going back to the RMH for dinner and a good nights sleep. We will be back up here for Doc. rounds tomorrow morning.
The nurse just came in and told us that he needs a little more blood they are getting ready to do another transfusion. Ahhh...I am leaning so much new hospital lingo! I will be an old pro by the time it is all over!
Thanks again for being wonderful friends!! We are blessed to know each one of you!!! Love ya!~
Thanks again for all of your prayers and support!
The surgons just took Malachi back! It was hard seeing him go and I cried like a baby! We should be getting an update around 9:30. I will try to post when we learn more!! Thanks for all the prayers and support! We couldn't do it without you!! We are waiting for some good friends and my brother to get here. The others have spaced out their visits so there will be somone with us each day till monday.
This is the hardest thing I have had to go through, ever! But i know the outcome will be so wonderful! I will just keeping thinking about when this is all over!
Wednesday, January 28, 2009
This lovely man to the left is Anastasios C. Polimenakos aka the man that will be fixing the heart of Malachi! Please be praying for him over the next 2 days. We are trusting that God will guide his hands as they work on peewees delicate heart!!
That is all for now. Im sure I will post more later. Did I tell you we leave tomorrow? haha I hope today goes quickly!
Tuesday, January 27, 2009
Peewee sleeping in the pack and play! Since he started rolling over, we can't keep him on his back! Doesn't he look comfey?
Alright, I am back. Peewee is fast asleep after a little snuggle time with the momma. As I was saying before, I keep getting inturrupted!
Things are going well here. We are slowly getting prepared for thurdays/friday. I talked to the nurse at Rush again today. We have to be there at 11 am on thurdays for some pre surgery testing. She tells me that we should expect to be there about 4 hours on thursday. A fter the pre stuff we get to check into the Ronald McDonald house (only if there is a room avaliable for us, we wont know till thrusday). Friday is the big day. We have to be at the hospital at 5:30 surgery starts right at 7:30. He should be done between 12:30 and 3:30 in the afternoon. I will be send update to our blog via twitter so look for them!!
I wanted to share a few dreams I have been having lately with you. Sunday night I dreamed that the nurse tripped over the bi-pass machiene and unplugged it killing Malachi! It was so realistic! I know this is not possible, but im still worrying about it. (my wonderful sister-in-law who is a nurse informed me that they have battery back-ups) Last night I dreamed that there was a shooter on the loose in the hospital. I woke up before it could get to bad. Can you tell im worried? When I finally wake up, I have a hard time going back to sleep. My heart races and I get the cold sweats! I hope tonight I can dream about good things and actually get a good nights rest!
I have to get going, the home healthcare nurse is comming over to give Malachi his synnergis shot and my house is a mess!!
Sunday, January 25, 2009
Friday, January 23, 2009
Thursday, January 22, 2009
Wednesday, January 21, 2009
Monday, January 19, 2009
Pictures are not working at the momment....I will post them later.
Thursday, January 15, 2009
Tuesday, January 13, 2009
We are preparing for a HUGE party this weekend. We invited family/friends over to celebrate Malachi before his heart surgery. We are expecting 50-60 people! I dont know where im going to put everyone! We can't wait to pass out our "praying for Malachi" bracelets. Hopefully they will be a reminder to pray for him while he is in surgery and recovering from it!!
We are blessed and every day we find more and more things to be grateful for!!
Saturday, January 10, 2009
Things are going great! We went to our first Down syndrome support group this morning. It was great to meet other mom (and dads) who can relate. When people asked how old Malachi was their first response wasn't "wow he so tiny!" Cause they know, children with DS tend to be smaller! I think we will make life long friends here. I can't wait till the next meeting!
We hope you all have a GREAT weekend!
Wednesday, January 7, 2009
We have a CRAZY week next week! Monday it is back to the peds office for a quick check up on Malachis sinus infection. Tuesday we have all of our therpy evaluations and an appoinment at WIC (we get it for his formula because he is still a ward of the state and I am not about to turn down free formula!) Wed. we will be in chicago all day. We have court in the morning and another cardio appt. in the afternoon. Yikes thats 5 appointments in 3 days!
Well I know there are some of you reading this blog out there and we would love to know who you are!! Please leave us a message and tell us your favorite thing about winter! We would love to get to know you better!
Tuesday, January 6, 2009
Monday, January 5, 2009
The BIG day is getting closer and closer. We are busy getting things in line. Josh is working on sub plans for 7 to 10 days, I've been busy talking to the PICU social worker trying to line up our stay at the Ronald McDonald House and we have both been going over finances for our week in Chicago. Not to mention we are getting Malachi dedicated the sunday before we leave and hosting a big lunch at our house afterwards! And while we have all of this going on, I still have to take him to 6 doc appoints in 2 weeks! Soon this will all be over and we will be wondering what to do with all our free time!
Good news, his cough is getting a lot better!! I have only heard him cough twice today! Praise God. Josh is currently sucking boogies out! It seems like the never ending processes. He is a boogie making machiene!
I will be posting more and more as we get closer to the big date! Keep praying for Malachi!!!
Friday, January 2, 2009
Aside from all the medical issues Malachi is doing great! He is growing (now 10.13 oz) and making progress in eating, as well! He is getting more and more active and learning how to get his arms and legs under him! We are getting excited to start PT and OT. Hopfully we will get started before the 20th, but we heard there is a waiting list out here. Our lawyer is going to write the company and see if she can get our name pushed farther up on that list.
Some good news, Malachi had his VCUG donw today and we found out that everything looks normal! There is no Urinary Reflux! Josh and I are very excited to cross yet another possible complication off the list!
No other exciting news. He has a little cold Josh and I are trying everything so it doesnt turn into anything!! Please pray God keeps him healthy!
Thank you for all your support! There are a few things we would ask you to pray for.
*The docs and nurses that will be doing the surgery. Give them knowledge, steady hands and gentle touch.
*For Josh and I as we prepare for 7-10 days of recovery. This will be a very difficult time for us!
*For finances. We will be eating 3 meals a day out! Thats 21-30 meals we will ahve to buy. This expence is not in our budget but we are confident God will provide one way or another.
*Thank God for keeping Malachi healthy, for sustaining him and being the Great physician!
We are thankful for each of you!! Love you!
Thursday, January 1, 2009
Have a great first week of 2009! I hope to find time to blog more after Josh goes back to work and things settle down here!