Sunday, December 25, 2011

Merry Christmas Everyone!

Wednesday, December 14, 2011

Recap from our day thus far

We got up at 4:30am to get to CHOP at 7am for a 8:30am catheterization. Cole had to be NPO from 5am this morning and was such a champ!! Cole was so good for the nurse he let her do everything she needed to do without crying. They gave him giggle juice to help make him a little loopy so that he wouldn't get so upset when they put his IV in. He only cried for like a minute when they put his IV in. All the nurses thought that he was the cutest thing!! Yeah, I agree... They took him back for his cath right at 8:30am. The team that took care of him through out the cath said that he was giggling and cooing all the way back to the cath lab. Little sweetheart!!! We got our first update at 10am. That's when they told us that they were having a hard time getting access. They must have gotten access soon after that because at 11am our next update they said they were ballooning his Left Pulmonary Artery because it was so small. At our next update at 12pm they took us into the conference room to meet with Dr. Gillespie. We waited there for a good 40 minutes if not longer... I was getting very anxious. Thankful the nurses came back and kept giving us updates. Dr. Gillespie got pulled for another emergency. The nurse then came in and told Ian and I to just come back and be with Cole because he was so upset. I walked in the room and they practically threw him in my lap to nurse. He was very groggy, but very unhappy. He nursed and nursed and nursed. He didn't want me to put him down. I held him for quite awhile. Finally, Dr. Gillespie was able to come in and talk with us. We didn't get the best news... but, it certainly could have been worse.... Cole will need to have another open heart surgery ASAP. I'd think soon after Christmas and as soon as Dr. Spray has an opening. If you remember from Coles first open heart surgery. Cole will not have his full repair this next surgery. They will need to cut open and patch his pulmonary arteries. His cath showed that his PA's are very small and they haven't grown almost at all since birth. There wasn't much that Dr. Gillespie could even do in the cath lab. He did balloon his left pulmonary artery some. There was concern that they had lost the pulse in his venous artery where they got their access from. Cole had to have a ultrasound so that they could get a better look and see if there are any blood clots. If there is any issues with either he will need to start lovenox injections for 6 weeks. I am praying there are no clots and that the pulse will come back on its own without needing to do the injections. Since they did some ballooning we need to stay overnight and should be discharged first thing tomorrow morning. Cole is back to his normal self except for when they did the ultrasound and had to press on his sore groin. Poor guy!! They gave him tylenol and I nursed him after they were done with the ultrasound and now he is sleeping soundly. We got to see both Dr. Natarajan (Coles cardiologist) & Dr. Loomes (Coles hepatologist- liver dr) Dr. Natarajan had suspected that Cole would need this surgery and Dr. Loomes just came by to see Cole since she knew he would be in. Cole had liver labs drawn yesterday along with his pre-admission labs. Dr. Loomes looked over his labs and she was thrilled to tell us that Coles liver is PERFECT!!!!!!! Praise GOD!!!!! That is the best news!!!! While I am sad that Cole needs to have another open heart surgery so soon I am also thanking God that there are surgeons that can fix things like these and that Cole is such a healthy little guy otherwise!!!!! Well, I need to wrap this up. Cole needs to go for an x-ray to be sure where they did the ballooning still looks good and that he isn't having any internal bleeding. We need to stay the night tonight which I came expecting to happen. Ian, was able to get a room at the Ronald McDonald House. Another praise. I called and they originally told me they didn't have a room and then the RMH manager called me and told me they did infact have a room!! Yay!! The nurses acted like they like to get everyone in the CPRU out of here by 10am!!!

Thanks for your continued prayers for Cole and us as we continue to walk this road of trying to get Cole's heart to funtion as normal as it can.


They are going to balloon his left pa.

Heart cath

Cole's ready for his cath.

Tuesday, December 13, 2011

Cath Time

Cole's heart catheterization is tomorrow morning at 8:30am.  We need to be at CHOP by 7am.  It will be a very early morning tomorrow at the Sirianni household.   Cole's pre admission testing today was crazy it took 2 1/2 hours and then the car ride was just as crazy there were accidents everywhere!!!

Thanks for your continued prayers for Cole!

Saturday, December 10, 2011

Heart Catheterization Scheduled

Cole's heart cath is scheduled for Wednesday, December, 14th.  We appreciate your prayers!!  We will keep you updated on the day of his cath!

Tuesday, December 6, 2011

ENT Appointment

Yesterday, I took Cole for an ENT appointment and he was supposed to have a hearing test, too.  Cole had fluid in both ears so the doctor wants to see him again in 2 months, although the next opening wasn't until April 20th.  Uhh....  Like 4 months..  Anyways, if the fluid doesn't resolove itself by his next appointment he will need to have tubes put in his ears.  They were unable to do a hearing test due to the fluid in both ears.  It was a super quick appointment!  YAY!!  We were able to go to the CHOP in Chalfont rather then having to drive to Philly.  It is always nice when we have an appointment close by and don't have to drive an hour there and back.  It doesn't take up the entire day! 

We still haven't heard from CHOP regarding Coles heart cath.  When we have a date on the calendar we will let you all know. 

Thanks for your continued prayers for out little/big guy!

Monday, December 5, 2011

Thursday, December 1, 2011

6 months old!

Thanksgiving with the family
Eating food already!

Tuesday, November 29, 2011

Today Cole had a routine cardiology appointment and echocardiogram.  Dr. Natarajan was back from her medical leave and it was so nice to see her.  Overall it was a good appointment, although Coles pulmonary arteries are growing at a very slowwwww rate.  Cole will need to go in sometime in December for a heart catherization to get some better imaging of what exactly his pa's are doing and some possible ballooning of his pa's to help stimulate some more growth.  Cole his now up to 16lb 3oz and a little over 25 inches.  Stinker wouldn't let the nurse get his vital signs he screamed and cried and threw a phit when the blood pressure cuff was on his arm,  it wasn't even taking his pressure and the second the nurse took it off he started smiling and cooing.  haha...  Six months tomorrow and he knows what he likes and doesn't.  Cole has quite a few appointments coming up.  He has to get his synagis shot on Thursday and then next monday he has his follow-up ENT appointment and hearing test a pre op appointment before his heart cath and his heart cath.  Dr. Natarajan acted like it would be no longer then a 2 day hospital stay as long as there are no complications.  Depending on what they do he may be able to go home the same day!  Please, pray that Cole will stay healthy and that his heart cath will go perfectly without any complications.  Oh, and that his pulmonary arteries get the memo and GROW!

Tuesday, November 1, 2011

Rsv season is here!!

Monday, October 31, 2011

5 months already???

Monday, October 24, 2011

We went to Willow Creek Orchards this
past Sunday so Cole could get his
pumpkin patch pictures...

"The eyes"

Already modeling

As you can see Cole is doing really well.
He's starting to tolerate tummy time and
might actually start to enjoy it soon.

Friday, October 21, 2011

Happy Birthday, Owen...

Two years closer to a cure for ALGS...

Monday, October 10, 2011

Saturday, October 1, 2011

Lab Results

On Thursday I e-mailed Coles GI doctor to get the results for his blood work.  I heard back quite quickly...  She said "Coles labs look absolutely great."  Aaaa music to my ears.  I love hearing that his liver is doing what it should be!!!! 

Friday, September 30, 2011

Four Months Old Today!

Wednesday, September 28, 2011

9/28 Appointment Recap

Today Cole had appointments at CHOP.  We started the day off at 9am with an echocardiogram which he was sooo good for!!  I was so proud of him.  They were able to get the pictures they needed quickly and painlessly.  YAY!!!  Usually he cries and it is so stressful because then the ultrasound technician starts stressing out which in turn makes me stress out.  We got some really good news today that one of his pulmonary arteries has started to grow the other pulmonary artery not so much (the other not growing isn't good news, I'm just thankful for some growth).  We will wait until next week when his primary cardiologist comes back from her leave of absence for a final decision on whether or not they want him to get some stents in his pulmonary arteries to help them grow more.  His pulmonary arteries need to grow so that they can do a full repair on his heart.  His oxygen saturation levels were 85% and he weighed a whopping 13lbs 12oz and 24 inches long and is in the 30th percentile for weight.  So all in all the cardiologist was happy with his progress.  After seeing cardiology Cole had an appointment with GI.  They thought that he looked great!!  No yellow and a chunky baby!!  Hence no liver disease!  Yippie!!  We were able to talk to them about his dairy allergy.  They just said to be really really careful with what we give him his first year of life, strictly nurse him until he is 6 months old and then when we start solids we need to watch because some brands of rice cereal have diary in them.  Also, they said not to give him soy because babies that have milk protein allergies often times also have soy protein allergies.  I would have never thought that...  Always learning something new!  They did want Cole to have some labs done since the last time they got them was like 2 months ago.  Poor guy really was upset.  I felt so bad for him!!  He is such a good boy! 

Cole started as of yesterday grabbing his toys and blowing raspberries.  It is so sweet!  He loves to sit up and look around.  Big boy I can't believe he will be 4 months old already on Friday.  It goes wayyyy too quickly! 

We have a busy October.  There is something going on every weekend.  Two weddings, Owens 2nd birthday and other things. 

Thursday, September 22, 2011

We've been having a lot of fun with Cole these past few weeks. He started to hold his head up by himself and he's starting to pull himself up when he's laying down. When he's giggling and rambling on; it sounds like he has a smoker's voice. He's a big fat fattie, too. 13+ pounds. I guess that's what happens when you sleep and eat all the time...
 Ashley tried eating dairy again and that didn't work out so well... Cole was miserable and had blood in his stools. Which means it makes it a "real" allergy and not a "sensitivity."
  We took him to the Ear, Nose, and Throat doctor last week to see if he could see anything obstructing his hearing. Besides the pediatrician he is the only one that has actually looked in Cole's ears. Everything looks normal and he wants us back in three months to do some hearing tests that hopefully Cole will be able to interact with.
 Next week we have a GI and cardiologist appointment down at CHOP. This should be our last appointment with our substitute cardiologist and we're hoping for growing PAs!

Below are pictures from our third attempt at getting family shots last week. Each time we went out Cole wasn't very happy. Mainly, because by the time I get home from work, showered, and dinner it's around 8-8:30 and he's usually settling down by then. Luckily, I got home pretty early one day and we got out the door before 7 and had enough day light to catch these before Cole got upset and the sun went down. Both happened simultaneously...

Thursday, September 8, 2011

Cole just rolled himself onto his belly!

Monday, September 5, 2011

Three Months!!! { A few days ago...}

Wednesday, August 24, 2011

8/24 Cardiology Appointment

Today Cole had a cardiology appointment and an echo.  Cole really wasn't a fan of the echo he cried so I had to sit up on the table and nurse him while she did the echo.  The echo revealed that his branch pulmonary arteries infact did not grow at all since his surgery.  It looks like it will take awhile for his pulmonary arteries to grow.  I guess in some they get the shunt and the pas grow right away and in others it takes some time.  For Cole it seems like it is going to take some time.  Dr. Szwast was thrilled with how Cole looked though.  We are getting a pulse oxometer for at home to check his oxygen stauration levels daily.  His oxygen saturation levels were great though today at 87%.  I guess she just doesn't want me to worry if he has any tet spells (blue spells).  He is weighing 11lbs 15oz!!  I guess it is a good thing that I washed Owen's 3-6 month clothes that Cole can wear.  A majority of them are winter and it is still a little too warm out for winter clothing.  That is okay though I like to buy Cole new clothes!  I also moved him up to size 2 diapers.  He was just having way too many blow outs.  haha..  I have slowly been incorporating some ice cream back into my diet.  He seems to be tolerating it well!  Yippie!!!! 

After each caridology appointment I sigh a big sigh of relief!!  Although, September he has a doctors appointment every week...  In a way I wish they were all in the same week so I could have a couple weeks off.  Oh well...  Hopefully GI will release him if everything continues to look the way it has.  Then, he will only need to see cardiology.  He also sees ENT in the middle of September. 

Thursday, August 18, 2011

A Sick Momma & An off Baby

Since last Friday August 12th Cole had seemed a bit off to me.  Just a bit more irritable, he was starting to sweat with feeds and he was a bit more blue.  So, I decided to take him to the pediatrician on Tuesday.  The doctor said he looked great and couldn't find anything wrong with him.  Although, she did up his dose of Zantac from .5mls twice a day to 1.5mls twice a day and I feel like I have seen a difference already.  She wants us to get a handicap placard for the days that it is really hot and really cold out.  She doesn't think it is good for him to be in extreme temps.  She also said they need to start the process to get him his synagis shots.  Since Cole is so young he is unable to get the flu shot and if he would get the flu or RSV that would be really bad...  So he needs to get a synagis shot monthly during RSV season I believe it is for 5 months.  Although, the synagis shots are VERY expensive so they need to get it approved by insurance and that often times can be a long process.  Coles oxygen saturation levels were between 87-91% at the pediatricans office.  YAY!! That means the surgery he had 3 weeks ago today was a success.  I am hoping we get good news when we go back to the caridologist next Wednesday that his Pulmonary Arteries have grown like they should.  With that said ever since he was home from the doctor on Tuesday he has been an angel.  He is so good!!!  I am very thankful for that.  He has been sleeping great for me at nights he will go to bed around 9-10pm and then get up at 4am and nurses and goes right back to sleep.  Although, after that stretch he gets up about every 2 hours until we get up for the day around 8am. 

As of Tuesday I came down with a high fever and I was feeling very achey and super tired.  It turns out that I have mastitis from nursing.  I am so glad it's not contagious..  The doctor put me on antibiotics and I am feeling MUCH better today!!!  My fever finally broke early this morning and I no longer feel like a furnace. haha! 

I have been super busy getting things done for my sisters baby shower that is 9 days away.  Along, with all the day to day household chores and taking care of my sweet boy!! 

I'll leave you with a picture of our sweet little guy that just smiles away at his daddy and mommy!!

Have I every mentioned how much he loves his bath?!  And if you can see it his scars are looking great!!!

Tuesday, August 9, 2011


It seems Cole has turned the corner.  He is feeling so much better he has been sooo good the past two days.  For the past two nights he has been wanting to sleep all night and not get up to eat.  I wish I could just not freak out and think that something is wrong with him when he doesn't wake up.  I have been letting him go 5 hour stretches between feeds in the middle of the night, so I guess I will let him go 6 hours.  Cole started smiling in response last Thursday and has been very interactive and happy and and cooing when he's awake.  He still cries sometimes when he gets the hiccups, but there is certainly some improvement.  He also is loving his swing.  Yay!!!  I am actually able to put him down and get some things done around here.  I took Cole for his 2 month pictures yesterday.  Better late then never.  I think they turned out really cute even though Cole wasn't a fan.  He didn't want me to put him down he screamed.

Saturday, August 6, 2011

Go phillies!

Tuesday, August 2, 2011

2 Month Well Check

Today Cole had his 2 month well check and all looked great!!  He cried just about the whole time...  Poor thing!  On a positive note his lazy eye corrected itself.  YAY!  The doctor said that he looks like he possibly has fluid in his right ear and wants him to see the ENT doctor.  He is thinking this may be the cause of his mild hearing loss in his right ear.  He has a flat head in the back, but that too will correct itself with time.  He also has a mild case of cradles cap and weighed in at a whopping 10lbs 11oz and 21 1/2 inches long.  He is in the 5th-15th percentile.  I can't believe how much he is growing.  So much for all of those 0-3 month clothes that I bought for him....  Since his heart surgery he has been wearing button up outfits and he doesn't  have too many of those so he has been wearing the same 2 outfits off and on and button up onesies.  He'll be in the next size clothes until he isn't so miserable that I can't dress him in anything that goes over his head.  Cole has been soooo miserable every night.  Ian and I pass him back and forth a thousand times trying to comfort him and Cole just screams his head off.  Poor thing.  This ususally goes on for about a half hour or so although tonight was much longer.  I have no clue what the problem is.  I think it's gas, but I can't be 100% positive.  I'm sure tonight it's gas, his chest, the fact that he just got shots.  Poor thing I feel like he never gets a break. 

This evening since it was so beautiful Ian and I decided to take Cole for his first walk in his new stroller!!  He loved it.  He only cried once for about 5 minutes because he got the hiccups, but then he fell asleep. 

He was more interested in looking at his daddy then the camera. 

Sunday, July 31, 2011

Ruff week...

We had a pretty ruff week. Cole has been miserable and not really sleeping since he's been home. We think the soreness is starting to go away, finally.  Last night he did really well and slept most of the night and all morning.  We were able to take him to the grocery store with barely any screaming, barely.

They took his stitches out at his cardiology appointment on Friday. They were impressed with his weight gain and will be doing monthly ECHOS to see how is pulmonary arteries grow so they can do his next surgery ASAP. Most likely before November she said. She did give us some stronger pain medication to give Cole since the Tylenol they prescribed us wasn't doing anything. We didn't give him much of the Tylenol anyway because of the whole "Tylenol is a liver killer" thing.

We were having a small scheduling issue with our pediatricians office. We had an appointment scheduled for Wednesday but, canceled it because Cole was so miserable and we didn't think getting his 2 month shots was going to help him in anyway. So, they couldn't see him until August 23rd. That was pretty far away but, whatever. That was the closest day they had available. A few days later we got a call from the pediatrician. The actual doctor not the office. He was calling to check up and see how Cole was doing after his surgery and what was up with canceling until the 23rd. Ashley explained everything and he said, "I'll fit you in somewhere." Now Cole's appointment is this Tuesday.

Cole is two months old today! That means bear pictures. He's going to be bigger then the bear very soon the way he grows.

Cole fell asleep literally between shots...

Tuesday, July 26, 2011

We had a ruff day and night. Cole barely slept and would constantly wake himself up. Be it stretching, burping, hiccups, coughing, and for no reason. Completely and utterly upset. Nothing helped. He would fall asleep for 15 minutes max and wake himself up. It wasn't until  4:30 pm that he finally fell asleep for two hours. He seems to be doing good now and hopefully will want to catch up on his sleep tonight. We went ahead and cancelled his pediatrician appointment tomorrow because he was so miserable. There was no possible way we'd be able to handle that.

We aren't allowed to lift his hands above his head or pick him up under his arms for 6 weeks, so his ribcage can heal. Which is just great. Is it child abuse to tie your kids arms down around his waist?  He's also on baby aspirin to prevent blood clots in his shunt. Do they let you keep the shunt when they take it out? That'd be good for the baby book wouldn't it?

I'm going back to work tomorrow. 

Monday, July 25, 2011

Home At Last

Well they were going to try keep us if Cole didn't get his hearing test. Audiology came in first thing in the morning and he wasn't sleeping. We knew they were going to try to keep us for something completely unrelated to his surgery. They did give him an ECHO that he pretty much screamed through the whole thing. This guy was good or completely insensitive. He got everything he needed and didn't let the screaming make him stop and throw a hissy fit like prior ECHOs we've had. Audiology came by again and I was praying "Lord, for the love of all things sane in life, please let this child sleep through this test." And he did. The whole thing. Twice! She couldn't get a good read so she had to do it again and tried a few more gizmos to get it. She said she couldn't pass the right ear. {Which if I could of sworn the right passed last time and the left didn't} She said there is some variables but she would recommend a follow up appointment. Yes! Now there was no reason to keep us. This was around 12. I think around 3:30 or 4 they came in and told us we could get ready to go home. Of course, CHOP is infamous for letting you out at rush hour. Scenic ride home and it hasn't rained the whole time we were in the hospital until we were on our way home and had to carry a bunch of bags into the house.

Cole still has some pain. Mainly when he burps or has the hiccups. He'll scream and scream and scream until his hiccups go away. We have a pediatrician appointment on Wednesday then back down to CHOP on Friday to get his stitches out and a follow up with them.

Let's see how he does back in his own bed.

Sunday, July 24, 2011

Cole is off oxygen and is in the step down unit! The night nurse and the day nurse both tried to take him off oxygen and said he desaturated down into the 60s, so they left it on. He was only on a 1/4 of a liter. Maybe he was screaming bloody murder when they did that? As soon as we got over here the nurse looked at his SATS that were in the 90s and said let's see how he does. That was around 5 it's 10 now and he is hanging out in the mid to upper 80s.

He still seems a little sore. Every time he coughs or sneezes he screams. Not as bad as he was but, enough to wake him up when he's sleeping. We have a sound machine for him to help quell the hospital noises but, it must not be as loud as the other one we have. It doesn't seem to help him much. Maybe we can call audiology and tell them he passed our hearing check? It's still much quieter in our own private room then being practically in the hallway.

We're hoping he has a good night and that will be enough to let us go home soon but, you never know around this place. Tomorrow all the shifts change so all new doctors start their week up and who knows what they'll think of Cole.

Saturday, July 23, 2011

Saturday Update

 Cole is still in the ICU only because there are no rooms available in the CCU. His belly was quite distended the past few days but, today it went down allot. He had a bunch of good bowel movements that helped him out. He hasn’t taken allot of pain medication today. I think he got a dose in the morning and that was it. He seemed to still be in some pain later in the night but, he fell asleep before we could give it to him so, we just let him be. His appetite seems to be getting back to what it was pre-surgery. Ashley hasn’t breastfed him yet since she still isn’t staying at the hospital. Once he is in the CCU she’ll probably start. She’ll be able to stay at his bedside then. We’re hoping a bed opens up in the CCU tomorrow, that’ll be one step closer to home for Cole and we are all ready to get home.  It’s rare that they discharge kids on the weekend though so we won’t hold our breath for an opening.

We did hold him a few times too. It’s still a little weird. You don’t want to hurt him and any sound he might make makes you think you did something to put him in pain. You have a list of ways you can’t hold him and things he can’t do for 6 weeks that’ll make your head spin. The one nurse told us not to worry about it too much but, you don’t want to damage your kid’s ribcage for the rest of his life either.

They did take his bandage off and his incision looks like it’ll heal beautifully. Of course they’ll be opening it up again in a few months hopefully it’ll look just as good then, too.

They haven’t completely taken him off oxygen yet. They’re still running room air through his nose. I think they’re going to see how he does without it tonight or tomorrow.   

Glimpse into our life at chop...

Stare at this picture for about 3 hours, switch between standing and sitting every 15 minutes or so. You should get a pretty good sense of what its like.

Friday, July 22, 2011

7/22/11 Update

Overall Cole had a good day.  There was one time when he dropped his heart rate and dropped his oxygen saturation levels and they had to give him a few breaths, poor guy was in pain and just decided he wasn’t going to breathe.  They then gave him pain meds and the rest of his day was great.  He got his arterial line out, his chest tube and one of his ivs out today.  Although, his poor little belly is so distended from having to get so many breaths the last 2 days (he was holding his breath yesterday too when they took him off the ventilator immediately after surgery.)  With that being said he needs to get all that air out of his tummy and they would like for him to be wetting his diapers more.  He took one bottle of pedialyte this morning and then two bottles of breast milk this afternoon/evening.  He had a long awake period he was awake for about 5 hours and just so content.  He is just so sweet. 

I am staying with Ian at the Ronald McDonald house again tonight since Cole is still in intensive care.  They said they would transfer him to the step down unit this morning, but since he held his breath that one time today they figured it was best for him to just stay in the CICU.  

Friday morning update

Cole's art line and chest tube came out. If they have a room open he'll be transferred back to the ccu today. That's how well he is doing.

Thursday, July 21, 2011

Cole's First Shunt Surgery... A success

Right before I started writing this blog post; I remembered last time at the Ronald Mcdonald House we lost a few posts because of the internet connection and had to start writing them in Word. Thankfully, it was before I started and not right after I lost one.

Last night as things were winding down; we got a knock on the door. We were both a little puzzled as to who it was. It was a father and his 13 year old daughter who has HLHS and has had over seven surgeries by Dr. Spray. She wanted to come in and see Cole. Obviously, we welcomed them in. It was good to see someone who has something way more complicated than Coles’ condition doing so well. She had a pacemaker fail after six weeks of being replaced. She came in on Monday for a new one and was leaving today to go home. It was a very nice reassurance from God that he can do amazing things.

Cole went back to the CPRU around 8 am and went back to anesthesia a little bit after 8:30. Everyone in anesthesia remember Owen. What am I saying… EVERYONE at CHOP remembers Owen. He did pretty good. He only was upset for ten or so minutes at best. We walked him to the elevators and handed him off to anesthesia and we went up to meet with Dr. Spray. He explained to us what he was going to do and that he’d have Cole on the bypass machine during the surgery. We then went back down to the floor and got our stuff out of the room and got a locker to put it in. What a great idea, lockers.

We talked with Dr. Spray after the surgery. He said Coles PA’s are 1/3 of the size they should be and only time will tell if the shunt will help them grow. Cole was only on bypass for eleven minutes. All the nurses always say how fast Dr. Spray is. We didn’t get back to see Cole till after one. As soon as they got him settled in his neighbor came out of surgery. They don’t let parents in the rooms when a child is brought out of surgery. He’s doing great though. He is on morphine for pain and dex-something or other for sedation. His c02 was a little bit high earlier in the day but, when we came back from dinner they had just checked it and it went down some. He seemed to be breathing stronger which probably had something to do with that.

Ashley decided to come back to RMH with me since, Cole won’t be eating tomorrow and is pretty much going to be sleeping all night. This way she can get a good nights’ sleep while she can. Hopefully tomorrow morning Cole will be more awake and we can get him feeding.

Our favorite Doctor is on this weekend. It’s always good to see a face you trust. While we were catching up with her; our GI doctor stopped in. Right after she left we heard Dr. Natarajan’s name over the loudspeaker. She was calling in to check up on Cole…

We asked our GI doctor, “So, does Cole have ALGS? Or is he just a carrier of the gene?” By the original definition he is just a carrier because you have to have cholestasis, facial features, and a heart condition. She said some doctor is working on trying to rewrite the definition and really figure everything out. Interesting little tidbit.
Thanks for the prayers and keep them coming.

Recovering. ..


Everything went perfectly. We are waiting for them to take his breathing tube out before we go back to see him.

Well fill in more details later

10:45 surgery update

Cole is off bypass and everything went well.  The shunt is in and his oxygen saturation levels are already up.  They will be closing his chest and making sure he tolerates that and then Ian and I will meet with Dr.Spray then we get to see our babe!!!! 

10am surgery update

Coles nurse just came and gave us an update.  Cole went to sleep well and he is currently on the heart lung machine (bypass.)  Everything is going according to plan. 

Thanks for your continued prayers!

Trying to soothe Cole in the cpru before he went back for surgery

Wednesday, July 20, 2011

Tomorrows the day

Tomorrow is Coles big day.  His open heart surgery is scheduled for 8:30am.  He is the first case (YAY!)  They will be placing a central shunt in his pulmonary artery & going in through his chest.  Cole will be on bypass for about 20-30 minutes and they do not need to stop his heart for this surgery. 

Thanks for your prayers!  We will keep you updated as we get updates! 


Tuesday, July 19, 2011

Tuesday Night:

Cole's IV failed today. They kept telling us it "flushed beautifully" and Ashley kept saying, "No, no, it's just leaking all out." Well IV team came up and sure enough it was just leaking out. They didn't put a new one in. They decided to give him a break from it until tomorrow. It's a good idea because that gives it less chance to fail before his surgery. {He'll need it for surgery}

 Audiology stopped by again...When he was awake... Again. This girl actually gave us her pager number so we could page her when he fell asleep. Unfortunately, IV team was supposed to come at the same time so we never paged her. IV didn't come until later. We aren't worried about the hearing thing. They have plenty of days to come back and try. He probably won't sleep long enough for them to do their thing.

 We heard from our fill in cardiologist today that she to got a call from Dr. Natarajan. Asking what is she doing to her Cole. That makes three cardiologist that have talked to her so far. So much for resting up?

Cole's buddy Zac came to visit him tonight, in the day time Cole was practicing his scary face for Zac...
The practice paid off. They were able to nail it in unison for the camera.
All in good fun of course...