Post Op - Day 2

Sorry I have not updated since surgery day...but not much has changed. We are truly blessed that Caleb has not really had any major issues since surgery, just the low blood pressure. The only major issue we are having are his wiggles. Apparently, kids with Trisomy 21 have the extra chromosome which can cause them to metabolize some meds quickly, this of course includes narcotics and sedation. So today he was given a different combination of meds to sedate him, rather then the paralytic they were giving him to completely knock him out. He needs to be so sedated b/c it is very risky to let him wiggle and possibly pull on the ventilator or an IV, etc. He is certainly more of a danger to himself when hands and feet start moving. He can not come off the ventilator on the paralytic, so heres hoping he remains stable on the new sedation meds so they can start to wean him off the ventilator tonight/tomorrow. They were talking about trying to remove the breathing tube tomorrow, but there are a lot of things that can cause that to change. His floppy airway is certainly playing a major factor. here's hoping for a perfect extubation! :)

He was moved to a private room today, out of the post-op/shared room he was in, so that is much nicer. It's just nice to have a place to sit down!
Thank you all so much for walking with us on this journey. We have some very rough, long days ahead once he truly is allowed to wake up...how in the world does one entertain a 12 month old in the hospital?!?

Joanna
P.S. I will post a pic of him when it is not so graphic. it is a little hard to see him so buried with IV lines, ventilator, etc. at this point. Not to mention his incision...

Surgery day...

Today began bright and early with Caleb being taken back to the OR (well, I went with him till he was 'asleep') at 7am. We did not realize the anesthesia part would take up so much of the operating time, but they had to start three central lines for him after he was asleep. We received our first call about 9 AM that the surgery had begun, so we thought we would have just a few hours to wait until he would be done. Well, 3 hours turned into 4 and finally by hour 5.5 we received a call saying that he was off the heart and lung bypass machine and he would be done in about an hour. By 3:15 we were meeting with one of the surgeons who said that things went well. It took so long just because there was so much that needed repairing. Kinda scary when one of the surgeons describes the holes in Caleb's heart as "huge". :( Tonight he is trying to rest, but being a pickle about it. He is obviously irritable from everything and very restless. His blood pressure is also very low and they have tried giving him blood, extra fluids, medicine, etc. and nothing is working too well so far. Here's hoping with a little rest from sedation it will help. He was on the heart and lung bypass machine a long time, so they are thinking he needs lots of extra fluids tonight to hopefully help the low BP. We thank you all so much for the notes, comments and prayers today on all of our behalf. We have a VERY long road ahead to get Caleb well enough to come home, but here's hoping we are able to see a little progress each day!

Thank you all so much.
We certainly covet your prayers for our precious little guy!

Joanna

Schedule change...

Well, when you have two of the best pediatric heart surgeons in the area, you have to be flexible! :) We received a call this morning that Caleb's surgery needed to be moved to Wed. AM. Apparently a little one was born over the weekend that needed surgery today, so today's scheduled surgeries were bumped to tomorrow and so Caleb is bumped to Wed. We are just thankful he did not get bumped any further then that. Aunt Ginny is here from Georgia and my parents all came in today, so we are ready...well, ready as we will ever be I guess...

Thank you for checking in...we will get an update posted just as soon as we can!

By the way, I know some of you are wondering exactly what type of heart surgery Caleb is having...
He basically has two things that need fixing. Both are typical with Downs kids, but not usually both - lucky Caleb! He has the hole in the middle, so he has two chambers instead of four inside his heart so they will be making/connecting the middle of his heart so he has four chambers. This also includes making one vessel into two, also making flaps that open and close to go with them. Eek. He also has "Tetraology of Fallot" which is a narrow pulmonary vessel. The BT shunt that was put in there at 2 weeks old has provided him all this extra time to grow bigger for surgery. They will remove the shunt and enlarge the narrow vessel, which will hopefully not cause him anymore 'blueness'!! :) Obviously some very tedious work to be done...thank goodness there are very gifted surgeons to help little ones like Caleb! I think the hardest part for this momma is thinking about him being kept alive by machine for a couple hours while they work on his heart. Necessary, I know, but nerve racking none the less.
I am probably not doing the descriptions any justice, but that is about as basic of a description as I can do. :)

Until Wednesday...
Joanna

The dreaded day is just about here...

Happy day before Caleb's surgery! I just wanted to thank each and every one of you who has encouraged us and prayed for each of us this past year. It is hard to believe that Caleb is one year old and exactly one week later is going in for his major heart repair surgery...

Over the last week, we have endured his heart catheterization procedure and a very long pre-op check up at the hospital. His oxygen numbers seem to have dropped drastically lately, so he is certainly in need of the surgery at this point...at least we are not second guessing ourselves and wondering whether we really need to put him through this yet...he certainly is in need!

We covet your prayers as we enter this very difficult journey. We have no idea what to expect, esp. as Caleb is older this time around and will certainly not be sleeping in the hospital the entire recovery. :( Any suggestions on how to entertain a 12 month old in the hospital?!

We will keep you updated as much as we can!

THANK YOU!

joanna

11 months and counting...

Well, the dreaded countdown is on to Caleb's heart surgery...August 9th! It is a day we have dreaded for over a year now. It will truly be an experience we will never forget. Not that it wasn't the first time around, but this time...it is SO different, SO much harder! I have cried about it, prayed about it, tried handing it over to God many times, and am so anxious I can't imagine being able to sleep as it gets closer, but we know God has placed Caleb in our family for a reason and so I have to believe that He will get him through this as well. We can't wait until this is over and he is back to us with a new strongly beating, healthy heart. He will go in on 8/1 for a heart catheterization procedure for the cardiologist to take all kinds of pictures, measurements, etc. to prepare the surgeons for exactly what they will be dealing with once they operate.

Below is a few pics of Caleb's 11th month so far...we made it to the beach for a few days. Trying to sneak a 'vacation' in with the older two before the summer becomes all about Caleb again. So there is a pic of him at the beach, enjoying HIS time with the remote, etc. :)

Thank you all for your prayers as this journey continues...
stay tuned, we will certainly update here as we get through each day.

Joanna

11 month pics...

Caleb's first trip to the beach

Caleb with his newest cousin Maggie

Caleb enjoying a little time with the remote :)

10 months ago today...

Caleb Andrew came into this world and he has blessed all of our socks off ever since! He has defied so many 'odds' already, he is truly a miracle. Coming into the world with Downs and two heart conditions, all doctors said he would have such a hard time. He has truly shown them! :) He is growing beautifully and our last visit with the pediatric cardiologist (we saw a different one this last check up), well, lets just say, he was amazed. I am sure before he came in to see Caleb, he looked over his file and expected to walk in and see a sickly, small baby. No, not Caleb. The cardiologist kept saying over and over "he looks SO good!" This doesn't mean Caleb does not need his major repair surgery, unfortunately, it just means Caleb has defied so many odds in the heart defect world. He has grown well, he is very alert and attentive, he is rolling, overall a very happy boy. We are hoping to avoid the dreaded heart surgery until right after his 1st birthday. His big brother, Ryan, will turn 10 on 7/31 and Caleb's bday is 8/2, so we are hoping to get those celebrations in before life turns all about going to and from Fairfax Hospital again.

Caleb now weighs 17 lbs. 3 oz. He is quickly outgrowing the "infant carrier" car seat, but he is not sitting up yet...so that will certainly present a challenge when it comes time to run errands and he cannot sit up in the shopping cart. His therapists are certainly working on this every time they come, here's hoping he will get the hang of it soon. His muscle tone is a little low b/c of the Downs, so using all of those muscles to sit up and hold himself there is a little bit of a challenge, but we know he will get it!

Thank you so much for joining us in this journey! We will certainly keep you updated as to when his surgery is scheduled. They have to do a heart catheterization procedure first, which is going to be in mid-to late- July. This will give the surgeons all the pictures they need of his current heart situation before they get in there. They will know exactly what they are looking at when surgery time comes. I am not sure how this momma is going to handle going through all this with our precious boy, but he did great after the first surgery, so we can only pray he does just as well after this one. His complete repair is SO much more intricate though. Not to mention, we are all much more bonded to him now. Dear Lord give me the strength!