3 weeks later...

It is quite hard to believe that it has been 3 weeks since Caleb had his heart surgery! Yet, on another hand, it feels like it has been months...

Caleb is doing really well, despite all that he went through those first 9 days after surgery. He was on SO many medications, many drugs to keep him sedated, etc. It is amazing he is not on ANY medications now for his heart! He does not last long without any Tylenol or ibuprofen in his system, but hopefully those will be done soon too! Our biggest struggle right now is SLEEP. We are not sure if Caleb is really uncomfortable when he is trying to sleep or whether he is having some kind of anxiety from his hospital stay?! It is really hard to tell but at least he is easily consoled when we pick him up...but that is not helping him get the much needed rest that his body (and ours!) so desperately needs! He is not even sleeping well at night anymore...we at least had that a week ago. :( Here's hoping whatever is plaguing him in his sleep will pass soon...

Caleb has had several appts. since he left the hospital. First stop was with the pediatrician for them to see him after his release from the hospital and he thought he looked great! Next stop last week was a check-up/post op visit with the cardiologist. He is very pleased with Caleb's progress and how well he is doing...besides the sleep part. They did another echo cardiogram (sonogram of the heart) and it looks just like it did after surgery when they did a couple of them in the hospital. The heart doctors are all so happy about his repair and how well it all looks. There are a couple leaky spots, but with how much work they did, a little leak is superb. He basically said that most with this big of a repair have a lot more leakage at the valves then Caleb does. So that is wonderful news!

Yesterday he had his 12 month check up with the pediatrician he usually sees and he was certainly thrilled with how well Caleb is doing and certainly happy the surgery is behind him! He now weighs 19 lbs. 4 oz and is 30.5" long. He has gained a pound just since we got home from the hospital...told you he has been eating really well since we got home! I think he is making up for all those calories he was burning with his heart the way it was. :) Now if we could just get him to make up in the sleep department...

Thank you all so much for your prayers and support during this time! He is certainly an amazing little one...I have seen shirts that say "tough guy" on them...he really needs one!! :)

Joanna

Post Op - Day 5 - 12

Wow - as you can probably tell by the delay in an update that Caleb is HOME! Once Caleb was transferred to the "floor" (reg. children's floor from PICU) on Day 6, everything went very quickly from there. I had to stay at the hospital the first night because Caleb was having some "junctional rhythm" issues and he was not sleeping well at all in his new room (w/a roommate!). So I felt I had to stay...one very LONG night to say the least!!! The rhythm issued seemed to be better by Day 7, so they said if everything continued to look good all that day, then we could probably go home on Thurs. (Day 8). After only 9 days since his surgery...Caleb was headed HOME! :) He was still having some PVC (premature ventricular contractions) but the cardiologist is not worried about this and is hoping they cease once his heart is more healed. Here's hoping they do! It is like a little extra blip on the heart monitor before you see the real heartbeat. Not sure if he feels them or not, but hopefully they will be going away as the heart heals. The cardiologist will be keeping a very close eye on him for the next few weeks, glad we like him so much! :) He will hook Caleb up to a 24 hour heart monitor if he feels these PVCs are not better in the next couple weeks.

Caleb has been doing well since he got home. He really tricked us by taking a 4+hour nap his first afternoon at home...he has hardly slept that much since. He is having a very hard time getting to sleep and when he does finally sleep it is not for long. I am only able to give him ibuprofen (they really only wanted me to give him Tylenol), so I am not sure how much of this restlessness is from pain or completely being overtired now or what...so we could certainly use some prayer in that area...SLEEP. He just cannot seem to find that comfortable spot to get a good sleep. Needless to say, this makes for a cranky, easily irritated little boy! Also keeping mommy on her toes...certainly not getting any downtime from his constant care. The fact we cannot pick him up from under his arms is quite a challenge too. You would be surprised how often you adjust him in your lap or pick him up from his bed, floor, etc. by his arms! A lot of scooping going on...and it isn't easy for a 19lb. 1 year-old!!!

Caleb is eating VERY well. He is eating more since he has been home then he did before surgery. His bottles are bigger and he is eating just as much food as he was before. So he is not lacking in that department!! :)

Thank you all SO much for your support in this labor intensive, exhausting journey!

Will keep you posted as much as we can at this point. He has a cardiologist check up on Thurs. so hopefully after that if he has anything special to say.

Joanna

P.S. The picture is from Caleb's last morning in the hospital...we were just starting to see a few smiles...they have been greatly missed!!! They are still hard to get, even to this day, but every now and then we are blessed with one. :)

Post op Day 3-4

Saturday - The ventilator is OUT! The extubation went very smoothly to say the least. The Drs. were well prepared for whatever may happen after the extubation, but thankfully all he needed was the nasal cannula, on a very high flow of air. This is creating 'postive pressure' against his floopy airway to keep it opened up. They are also trying to wean him from some of the meds, but that is a very slow process. So now that he is breathing on his own, they have to change what sedation meds they can give him, so that has been interesting on what works and what barely touches him. I have learned that kids with Downs metabolize certain meds very quickly and some of the pain meds/narcotics and sedation meds are included in this. The extra chromosome causes this quick metabolizing of some meds.

Sunday - Today was a long, uneventful day. Caleb's pulmonologist is now in the picture to look over his floopy airway issue and to make sure he is getting all the attention he needs in that regard. They left his airflow in the nasal cannula at 10 for now, which is alot! I think they are all a little aprehensive about changing anything in this regard just because of what may occur. Here's hoping they feel they can start to turn it down little bits at a time to see how he does. Caleb was more awake today and I actually could make some eye contact with him for a few moments at a time before he would fade off to sleep again. I am not sure this is a good thing because when he comprehended that it was me, he started to really fidgit and put his arms up as to say "pick me up mom!" Ugh...I can't! He still has two main IV lines in so he cannot be held. It has been 5 days since I have been able to hold my precious boy! He was able to start very small feedings this afternoon through his feeding tube. They will increase that little by little as he tolerates them. I am sure he would much rather suck on a bottle though! :) Our setback today was blood in his urine...not sure what this is from and of course to send it to the lab to check for infection takes a couple days. So hopefully nothing is brewing in his bladder/kidneys in the way of an infection. We are all hoping it is just irritation in the bladder from the catheter. They did remove the catheter because of this, so hopefully it will clear up soon.

We also added to the daily playbook some horrible looking "breathing treatments". These are for a section of his upper right lung that is deflated. Apparently normal after surgery, but there none the less. So they put a mask over his face to force a large amount of air into his lungs to try and get this section to open up. Caleb resists these treatments and gets very upset, obviously...it has to be quite scary to a little guy! To me it just looks like torture. They do this every 4 hours.

Thank you all so much for your prayers and support.
We would not make it this far without you! Caleb is coming along...one baby step at a time! :)
Joanna

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