Happy Opening Day!!!!!!!!

Today is a special day every year for us baseball fans..... Today Colin and I enjoyed the start of the baseball season by watching our NY Mets play the Florida Marlins.....As to keep tradition, we dress up in our Mets gear and get ready to watch the game......As you can see in the photo, Colin was all jacked up to watch the new look Mets.......

Colin looks amazed by the heat that one Johan Santana is throwing.......LETS GO METS....

Colin Isn't Very Happy....Does He Miss Boston??

No pics today because Colin has been very cranky since we got home. They sent us home with a very "aggressive" weaning schedule and Colin has not really slept (either has mommy and daddy!) since we've been home. Therefore, the entire Domanico household is very cranky!! It's terrible-Colin just moans all the time and cannot get comfortable. Colin did have one good night and slept right through but, his feeding pump broke at midnight and Tim and I were up until 2 am waiting to get a new one!! We are very happy to be home but, it has been a very difficult transition.

Does anyone know if they have infant rehab facilities?? (ha ha)

ps-Thanks to Terri for answering her phone during stressful times!!

Breaking News.....

BREAKING NEWS: Colin Charles will be leaving Children's Hospital Boston tomorrow and head west to return.....drumroll...... HOME..... to his house with his mommy and daddy...........The doctors are cautiously optimistic that he will be OK and get better....... We are excited to get home and get back to normalcy...... Below are some pictures that were taken throughout the day....

Colin sitting up smiling......

Learning to use a straw.... Now he is ready for a Slurpee......

Playing with my blocks......

Happy Easter!!!

Happy Easter !!!

Love,

Tim, Melanie and Colin

Oral Aversion?????

And we were told once upon a time that Colin had an oral aversion.......I wouldn't call the below video an oral aversion would you?

Quiz Time......

It's time for a quiz here on the blog....Below you will see two video's taken today......Each question is multiple choice so choose wisely.....

QUESTION # 1

Colin in the above video was happy because:

A) We are one day closer to baseball's opening day.

B) He just got his Methadone.

C) The Easter Bunny is coming tomorrow.

QUESTION # 2

Colin was not happy in the above video because:

A) Papa left today after spending the week with Colin.

B) He is having Mexican tonight for dinner.

C) The Methadone has worn off.

A Good Day....

Colin had another good day in the stomach distention department. It remained soft and mildly distended. His stats are in the upper 90's however he is on a liter of oxygen. His heart rate is nice and low. Colin, however has been moaning the last two days non-stop. Today after they gave him is adavan drug, he was happy as hell, smiling away and laughing. So now the doctors think all the moaning is from drug withdrawal and they are going to stop weaning the methadone and adavan. He has continued to throw-up once in the morning and once in the afternoon. However he smiles right after he does so. All medicines are now taken by mouth and not IV. The new plan is to get us back home sometime in the middle of next week to either the local hospital or hopefully home.

(This was a smile however it looks like he is yelling......)

Rollercoaster......

Well Colin had his Cath yesterday to put the hole between the Right and Left Atrium's. After the Cath, it appeared that it may have not of helped so we were down and out again last night....Then this morning, for some reason during his examination, Colin's liver was half the size it was two days ago and they are not sure why. He is eating through his tube and they stopped the Milrinone last night to see what would happen. So maybe the hole has made a difference? Last night we discussed potential for Heart/Lung transplant with Dr. Bacha, and mentioned that we weren't there yet, but he would talk it over with the transplant team. We are hoping that we don't have to go that far.........


(photos taken this morning....)

Colin will be heading to the cath lab AGAIN!! Colin had another echo yesterday which showed that the Milrinone only provided a marginal improvement to Colin's right ventricle so, the plan is to take Colin to the cath lab and put a hole between his atrium's. This will help Colin's right ventricle by reducing more pressure, hopefully allowing his liver to shrink in size and stop all the GI backup. His oxygen sats will be lower due to the hole (in the 80's) but, the hole can be closed in the future after he gets a chance to load up on calories and grow, besides lower sats are better than right ventricle failure......The cath will be either today or Wednesday, depending on availability.

Yes...I know Colin is a die hard NY Mets fan, but I guess with all he has been through and the great doctors and nurses he has, he decided that he would wear a Boston Red Sox hat to show his appreciation. As Uncle Brian pointed out, he won't smile however until the hat is off his head.........(this was a photo taken 2 weeks ago after mommy bought the hat at Fenway Park after we took a tour....I wanted nothing to do with it, however i like the look of the hat....)

Waiting Game

Colin has been back on the Milrinone for 2 days now and does look much better, however he has wretched a few times since being back on it. He slept the majority of the weekend, but when he woke up he was smiling and happy. They continued to come down on the methadone and adavan so he will be a little bit more awake now. Today we will see the doctors again to see what the plan is next, if there is one. I will update if we get any news.....

More Prayers are Needed.....

Yesterday we received some bad news from the doctors. Yesterday morning , Colin began to throw up bile again just like he did before surgery. His oxygen levels also decreased. He threw up several more times that morning and they decided to do an echo to see if pressure had changed within the heart. Well, they don't believe the pressure changed much, however, they noticed that the right ventricle is still failing. They brought Colin back into the ICU so they could put him back on Milrinone and Dopamine, which helps his heart contract better. We were told that it could take a long time for the right ventricle to recover. We were also told that it might never recover.

They are now going back to the drawing board to find out what, if any, could be done...... They did say that his heart just may need more time on the drugs to overcome the past damage. We are not sure what surgically they may need to do, if any....... Colin is a fighter, and we just hope that he still has fight left in him to overcome this next obstacle. Please fire back up the prayers, because God has to listen sometime right?

A Smile Appears.......

Well today we continued to get better news. Although he still has a fever which comes and goes, he also has been drinking by mouth, his stomach has softened as he has been pooping and getting all the air out of it, and HE SMILED......Melanie was giving him his breathing treatment and he broke out in smiles.

The Scar Appears.....

Sorry for the lack of updates...I hit a rut of not updating the blog and I apologize. Since I am back in Syracuse, I received pictures today via cellphone and uploaded them to the site. Colin is doing better and is healing, however he has still had a fever that comes a goes. It is really frustrating us because if he didn't have a fever, we could be out of the ICU and home sooner. They conducted an Cat Scan yesterday to see if he had any signs of infection within his body. The Cat Scan did not show anything major so they have him on antibiotics to try and fight it off. Overall, he continues to look good and they weighed him today and surprisingly he did not lose any weight......

Day one of recovery.......

Well today they extubated Colin and he was doing well. They also pulled his left chest tube out. He was doing well, until they noticed that his left lung looked cloudy and they were affraid that it would collapse, so they put him back on a CPAP machine. He is doing really well however and looks great. Dr. Bacha and Dr. Freed both were very happy with his progress. Lets just hope he doesn't get a flat in the left lung. Of course, since Colin was doing so well, Nanna stayed with him so Melanie and I could go take a tour of Fenway Park, however we got the news that the left lung looked cloudy 5 minutes before the tour started, so we got in a cab and went back. Maybe tomorrow......

Moving On......

Well, this evening we all decided (doctors & us) to skip the 3rd surgery because they didn't feel that the odds were very good, and even so if it did work, would it make a difference. After seeing Colin's legs last night after the Cath they just weren't sure how much more he could go through. This wasn't an easy decision, but neither would have been sending him back in. We are now leaving it up to God to keep the pressure down in his right side. Currently it looks good, but hopefully it doesn't start to rise again. Tomorrow morning they will take the breathing tube out, and start to pull some of the tubes and lines still in him. All the hardcore drugs are stopped and now they will just give him the methadone, because there is no doubt he is addicted. I will post new photo's tomorrow with the tube out. In the meantime check out the photo I took today. Doesn't it look like he needs to have a girl by his side?

Decisions...Decisions..........

Well today Colin had another 5 hour Cath procedure in which they took pressure measurements and did complete a few stents to the upper left lung. The good news is the pressure has dropped in half since before the first surgery in the Right Ventricle. The bad news is the blood clot returned to the shunt that was put into the lower left lung. This is fairly rare when shunts are involved because they supply the blood to the region at a higher pressure. Well Colin continues to be a one man band and he clotted. Again this is due to the extremely small vessels that had minimal blood flow for the past year. We now have a decision to make on whether to put him back into surgery on Thursday. Dr. Bacha said he thought we should for one final last ditch effort, in which he would completely "rebuild" the shunt and homograph. If it clots again than we lost the lower left lung forever. However, the chance of it working is anywhere from 10-20%. They would cath during and a day after to try and prevent it from clotting yet again. The surgery would only involve going in the back incision and considering he still has his Left Chest Tube in, Breathing Tube, IV's, Central Line and Arterial Lines in, it would be minimal to Colin but set his recovery back a few days. Colin would not need to be put back on bypass either during the surgery. This is a decision that Melanie and I have to ultimately make and we are split on the decision.

Saturday Update......

Colin continues to recover from the second surgery. He is still currently sedated and paralyzed, however they are going to lift the paralyzing drug today. The plan on leaving the tube in for at least another day or so, because they really want to support the left lung. Dr's are pleased with his recovery once again. They will be pulling 1 of the 3 chest tubes out today. Colin's color is coming back and the red dot on his head is slowly starting to fade.