Heart Doc Checkup

Blake had a checkup with his Austin cardiologist yesterday (Tuesday), and everything looks good. His sats are staying in the mid 80s (and they expect those will continue to go up), and the bi-directional Glenn shunt is flowing very well as is the pulmonary artery. This means that blood is flowing freely to his lungs and his body. We will have another appointment in a month.

Blake is slowly getting back into his old routine as well. We are trying to convince him that just because nurses woke him up every three hours at the hospital, it is not necessary to do the same now that we are back home (somehow we don't think he understands our reasoning). His body is doing well adjusting to his new circulation, and it seems like his headaches from the increased pressure in his head are fading.

All in all, he's doing great!

Well Weekend

I think they love each other

Cookies? What Cookies?

Chillin' at home

Every day Blake is feeling better, and you can see him returning to his old self. This surgery sent a lot more blood flow to his head than ever before, so generally these little guys have a headache for a couple of weeks while they are adjusting to the new pressure. Combine that with his chest hurting at the incision site, and we think a couple of new teeth coming in, and it's easy to see why he's been pretty crabby.

Mason had lots of fun with her friends and swimming in the pool this weekend. But, I think her favorite part of the weekend was making peanut butter cookies. She tends to prefer eating the dough before the cookies are done (what a girl)!

Luckily all of our family weathered Ike well. All were without power for at least a day (my parents are still without power), and there was plenty of tree damage and flooding, but luckily no structural damage and nobody was hurt. Here in Austin, we didn't even get one drop of rain from the storm, so there was a whole lot of hoopla for nothing.

I am so happy we were allowed to evacuate Houston and come home. All of the babies that were on our floor at TCH were moved out in the hallway, all surgeries were cancelled, and only one parent was allowed to stay with their child - our hearts really go out to all those families.

Settling In At Home

So happy to be out of the hospital and out of the car

Mason is sharing her Nemo with me so I feel better

We made it home safe and sound - the normally two-hour trip took around four.  But, we are happy we left when we did.  Word is that Texas Children's Hospital is now on complete lock down, all non-emergency surgeries are cancelled, and they are only allowing one parent to stay with the kids that are still there.  We very well could be stuck there, and our family be separated right now.  I am so thankful Blake is already a week out from his surgery, and we are all home together.

Blake had a rough night (and subsequently Bryan and I did too) last night, and was running a low fever this morning.  We didn't want to take any chances since he is still so fragile, and since we were approaching the weekend.  We went to see the pediatrician and after running a CBC, he said Blake's white blood count was low, probably trying to fight a virus.  He prescribed some antibiotics so that his body won't be trying to fight a virus while trying to heal at the same time. 

All of our family in Houston, and all of the fragile kiddos trapped inside TCH are in our prayers tonight.

Super Brief Update

This is just a fast update from my phone on the way out. Blake is doing great. We have been discharged and they are letting us go back to Austin to try to escape the storm. I'll post more once we are home and settled. Wish us luck on the crazy roads.

Recovery Day 5 - Busting Out

Well, it looks like Blake is on the fast track out of here.  He had a great, really low key day sleeping, eating, and playing.  He had lots of visitors, and is fascinated by the balloons his little friend Henry sent.  Hehad an echocardiogram today, and they determined they are comfortable releasing us tomorrow.  He will have a MRI tomorrow morning (at 5:30 am!), and we should be released tomorrow afternoon.  There is still some internal debate whether we will be released to go home to Austin, or whether we will have to stay in Houston through the weekend (the uncertainty around the hurricane is fueling that debate).  We couldn't be happier to get our Monkey out of the hospital, and away from the monitors, pokes, and prods.  We truly are blessed everything has gone so well.

Recovery Day 4 - Eating and Monitoring

Since last night Blake has been eating like his old self, and that sparkling personality is starting to shine through again. He is not receiving any oxygen as his oxygen saturation rate is in the expected range. During rounds this morning the surgical team said he looks great and should be ready for dismissal this week.  The cardiology team would like to monitor his heart rate better today to make sure that it is fluctuating properly, so they have him on a 24 hour monitor and will assess him throughout. He also was analyzed by a neurologist, and he was very pleased with Blake's responses.  

Mason and her Mimi came up to visit and Mason was so happy to see her "Blakey". She immediately ran over to see him, and within minutes he was smiling at the sound of her voice.It's pretty remarkable how in love with her he is and vice versa. 

The doctors did mention that even when we are released, they are going to ask us to stay in Houston for a couple of days so we can check back in on his status and they can examine his incision.  We are keeping our fingers crossed that hurricane Ike doesn't decide to hit Houston! Overall, we are very pleased with his progress and just looking forward to coming home.

Recovery Day 3 - Huge Step Forward

Sleepy boy

No more hardware, wires, or tubes (just a few last monitors)

Update 2: Blake turned a corner tonight, and finally woke up from all of the drugs he was on (he slept from 11 am - 6:30 pm without eating, we were starting to get concerned).  He has woken twice, ate, and stayed awake for 30 min - 1 hour each time.  He's still sleepy, but at least we know those Galligan genes that love food are still there!

Update 1: Today has been a big day already.  This morning, Blake got his central IV (the one going to his heart) and his chest tubes removed; everything went beautifully and there was no bleeding.  We were able to hold him after everything was out.  He had some morphine so he wasn't in any pain for the tube/line removal, so he is still really sleepy.  

We also moved out of ICU and to the 15th floor.  15 is considered a transition floor, and the last big step before you are released to go home.  Bryan and I stay in here with him and are his primary caregivers once again, with the nurses available to support us.  We will be here for several days (maybe even a week), so that they can monitor him, adjust the dosages of the meds he will go home on, and administer medication for pain while his incision heals.

It is hard to believe that just three days ago he underwent open-heart surgery. It's truly remarkable how quickly these little guys heal.

Recovery Day 2 - Ready to Move On

I'm watching the Astros here, just like my Paw Paw, while resting my eyes.

Blake had a good, uneventful night.  He rested comfortably, and ate well.  Today he had his arterial IV (the one going into his leg) removed, the IV going into his neck removed, and he has been taken off of all meds for his heart. They are also starting to reduce his oxygen slowly.  

During rounds this morning, one of the interns actually asked, "This kid looks so good, why is he still in ICU?"  The answer to that is because he still has an IV going directly into his heart, and they are waiting until Monday to remove it because they want the surgical team in house in the very rare event that anything went wrong removing that line.  That line is also the only thing preventing us from picking up our Monkey.

He hasn't been eating all that well today, so we're a little concerned about that, but the nurse seems to think it's just because he's still heavily sedated for the pain in his chest.  All in all, he's really doing remarkably well.  

After he gets the central IV and chest tubes removed tomorrow, we should move down to the recovery floor.

Mason on the Loose

Mason and her Cory

Being this fabulous is hard work!

Mason is enjoying all of the undivided attention she's getting from Auntie, Cory, and of course her loving grandparents.  Looks to me like she's taking Houston by storm while we're holed up in the hospital.  What a life!

Recovery Day 1 - Making Progress

Yum, yum, my first solid!

Update 3: Blake is recovering like a champ. In fact, a few of the nurses have mentioned that he is the most stable kid on the floor.  No small feat for just having undergone open-heart surgery. After getting "gorgeous" chest x-rays back we were able to give him some Pedialyte through a bottle; he sucked it down.  He tolerated that very well so then we were able to give him some milk through a bottle; he sucked it down too.  But, they will only give him 1.5 oz. at a time now to see how he tolerates it, and for a guy that normally drinks 4.5 oz. per feeding, that little bit just ticked him off!  So, we had a first inside of TCH; we fed him his first solid of rice cereal.  He dug it.  It filled him up and sent him happily into a deep food sleep.  Now he really is going to be a chunky monkey!

Handsome boy with no breathing tube

Update 2: Extubation (removing his breathing tube) was a success!  He is now breathing on his own like a champ.  He just had his blood gasses tested to see how well he was oxygenating his blood now, and they said they are better now than they were on the ventilator (just another sign he likes to prove people wrong).  Next, they will take a chest x-ray to ensure there are no fluids on the lungs, and if that looks good we will try to feed him a bottle this afternoon.

Update 1: Blake is doing great! He had a very comfortable and stable night. This morning after we came in he immediately woke up after hearing our voices. He is on scheduled morphine so that he doesn't feel any pain. The doctors just rounded and the plan for the day is to get Blake off of the ventilator and reduce his meds for his heart (right now he is down to two from three last night). He has very little blood draining from his incisions, and overall the doctors say he is doing really well.

Today is exactly four months from his first surgery. What a little hero.

Stage 2 - Final Update: Success!

2:40 pm - Blake is out of surgery, and everything was a huge success! Dr. Fraser was very pleased with how well everything went, and in fact they never had to stop his heart from beating when he was on bypass. He had no problems with bleeding this time either. Dr. Fraser had nothing but positive things to say about the operation. Blake is still intubated (they hope to take out the breathing tube in the next 24 hours), and being prepared to send to ICU, where he will likely stay throughout the weekend. We should be able to see him in an hour or so. We thank God, and all our wonderful friends for their amazing prayers. Please keep sending your good thoughts and prayers Blake's way, he still needs him.

Stage 2 - Second Update

12:30 pm - Dr. Fraser has completed the first step of the bi-directional Glenn. He had just finished oversewing the pulmonary artery and was about to create the shunt by making an inscision in the pulmonary artery and connecting it to the superior vena cava. The nurse said Blake is doing well and we heard from another nurse that the oxygen saturation in his brain has remained good while he's been on bypass. It had taken a little longer to complete this part, but Fraser said this morning he was going to spend a good amount of time inspecting the branches and the collateral arteries before cutting, so this time lag seems in line with his game plan.

Stage 2 - First Update

9:40 - The team of surgeons have begun the surgery and successfully put Blake on the bypass machine. Everything is going as planned. They will be starting the Glenn procedure shortly.

Stage 2: Bi-directional Glenn Surgery Underway

Blake started to stabilize around 12:30 last night after his blood transfusion to bring up his Oxygen Saturation rate. He was in good spirits this morning flirting with all the nurses and was taken to surgery at 7:30 to begin the second staged (Bi-directional Glenn) surgery for his heart. They expect it to take 5 hours or so depending on how things go.

Minor Detour

Resting comfortably in ICU

Sadly, Blake didn't recover as well as we would have liked for him to from his cath procedure this morning. Throughout the day his sats continued to dip to really dangerous levels, and I can honestly say that I saw him change in one day from a happy (seemingly healthy) baby to a sad and sick baby. For a mother to watch her child change (literally in 24 hours) in front of her eyes and feel so helpless is one of the hardest things to experience.

When I was beyond worried about him and feeling like he just wasn't turning a corner, I called in the doctors to come take a look. They too were very concerned. So much so in fact, that they have transferred us to ICU, and have pushed his surgery up to tomorrow morning at 7 am. Dr. Fraser even offered to stay through the night to do his surgery tonight if he needed it, but he is starting to stabilize and rest so he will be ready for the morning.

I feel strangely at peace with his surgery tomorrow. I know he needs it, I know he is with the best surgeon, the best recovery team, and I feel like he sensed that we were in the place where it was OK to get sick, so he allowed himself to get sick so he could get fixed.

We ask you all to pray your hearts out for our little man (and his doctors) tomorrow. We'll try to keep you posted as the day progresses tomorrow.

Cath Day

After my bath on 9/2 (super happy boy)


Yesterday was a surprise to us. We came to TCH for Blake's pre-op cardiologist appointment which includes an echo cardiogram. Everything was going as well as could be expected, and Blake was such a good boy all day. Suddenly his oxygen saturation (sats) rates started to dip from his normal (mid 80s) to the 60s. Sats that low can be dangerous, so they decided to give him oxygen and admit him last night (most people's sats are in the 90-100 range, they like for babies like Blake to stay between 75-85). Blake and I stayed overnight, and it was mostly uneventful, he slept well (unless they were poking on him or trying to take his temp in the middle of the night) and his sats remained in the 80s all night.



On oxygen after my sats dipped (still a happy boy)

Update 1: As scheduled, Blake was anesthetized this morning around 8 am to undergo a heart catheterization procedure. They insert a scope up an artery in his groin and feed it all the way to his heart. Once inside they heart they insert a dye and take photos so they can have a very clear understanding of the shape of the heart before open heart surgery. The procedure should take between 3-5 hours. So far, he went to sleep very easily, and they had fully inserted the scope as of 9 am. They will now begin taking pictures.

Update 2: At 10 am, they have taken all of the pictures they need of his ventricles, arches, chambers, and branches. They are now looking for any collateral vessels that may need to be occluded (coiled off). Sometimes babies with congenital heart defect grow extra vessels to compensate for the lack of function elsewhere in their heart. They are looking to see if that is the case with Blake. If they find any, they will essentially tie them off so that they don't interfere with the re-plumbing they will be doing during the Glenn. If they don't find any they should be done with the procedure very soon.

Update 3: 5 minutes later, they just called me and said they are done. Dr. Ing is on his way down to tell me the results of the preliminary findings.

Update 4: Blake is out of surgery, and doing fine. Hopefully I will be able to see him in a few minutes. I just met with Dr. Ing, and he says exactly what we have been hearing is the case, Blake has outgrown his shunt. He showed me photos and you can see considerable narrowing of the shunt which is causing the decreased sats. Blake does have a considerable collateral behind his heart, but right now it is helping to oxygenate his blood, so they did not close it off. They showed the photos to Dr. Fraser who said he would try to tie it off during the Glenn procedure, but if he was unable to get to it, he would have to have another cath after surgery to occlude it. He is not getting as much oxygen to the right side of his lungs as he is his left, but again this is all due to his shunt being too small for his size. The good news is they said nothing they saw would push him to be an emergency case.

Update 5: He did great coming out of anesthesia, and I got to hold him and feed him just as he was waking up. However, his sats have continued to be much lower than we would like. Once they moved us back to his room, a team of cardiologists descended upon us, they immediately decided to give him an IV of fluids because they thought he may be dehydrated and that may be affecting his sats. They definitively declared that we would be staying in the hospital until his surgery one week from today.

More information on heart catheterization

Big Weekend

It was an action-packed weekend for the Galligans.

Blake went to his first 'Horns game this weekend. He was such a trooper. He stayed (and was good) through the entire game, which is much more than I can say for his sister. The first game we took her to, she lasted one drive, and then she was over it!

Bryan and I ran/walked the Nike Human Race on Sunday. It was a 10K, and the same event was being held in cities all over the world. It was a great event, really well organized, and it didn't even feel like it was 100 degrees outside. After the race, we enjoyed a free show by Ben Harper in front of the Texas state capitol.

And Hollywood (AKA Mason) had lots of quality park time, a sleepover with her BFF Georgia, and and extra special ice cream treat with Mom before I left for Houston.

I guess we were trying to fit as much in as possible before we were trapped inside Texas Children's!