Monday, August 31, 2009

What a difference a day makes....

Post-Op day 3....
It's not often that I get to talk about poop in an open forum but I have finally gotten that chance w/ no fear of repercussions from Becca. Last night the nurse became a little concerned about Colby's bowel movements or lack there of. The poor little guy hadn't pooped since he was admitted into the hospital on Friday. Apparently this is a common side affect of narcotics.... The plan started off w/ Miralax (stool softener) reaction, next step prunes and molasses... nothing, next step suppository.... still nothing, another suppository.... yet again no break through. Poop became a point of discussion at rounds this morning for the doctors. The consensus was enema with hopes of getting things moving. The nurse finally administered the liquid dynamite mid morning and within a few minutes things began to happen. First diaper required a change of bed sheets.... and it didn't stop there the poop kept coming and coming. I have never seen or smelled anything like it. At one point I thought he might literally be able to whistle b/c there was nothing left but the diapers kept filling...absolutely amazing. The poor kid has pooped every time he has sat up since mid morning. Enough about the poop I do have other things to tell you about....

Blood Pressure: his blood pressure is still a little higher than they would like but it has trended down back into a more acceptable range. We noticed the most improvement as the day went on and he began to feel better.

Hose Pipes/ Chest tubes removed during lunch today. That was a huge hurdle to get those out. He did really well getting them out despite the size of the hose and the amount of them inside of him. I didn't realize how far they went into his chest. But typical for Colby he was mad when they did it then he was fine. As you can see in the pictures those things left a mark....

The next thing to get out was his central line from his upper chest just below his shoulder. They removed it mid afternoon. That too was a bigger deal for us than him. he was back to sleep within minutes.

They also took him back off the Oxygen Nasal thing. That made him really happy which is understandable. He has really been a trooper through this whole process.

The only "unexpected" issue was revealed after an ultrasound of his leg. There has been some concern since a couple of hours after surgery when the nurse noticed his pulse was weak in one leg and that same leg was a little cooler to the touch. They had put an arterial line in his upper thigh during surgery. As soon as they noticed the inconsistency post-op they removed the art line as a precaution. They have continued to monitor it and there has been some improvement but not enough so they wanted to take a look inside. It was confirmed that he has a small clot in his right leg which is restricting the blood flow to his feet. The solution is some shot administered twice a day (by mom, I hope) for the next couple of months. Even though that doesn't sound like much fun it sure beats the alternative of risking an unaddressed blood clot.
Despite this new development Colby was still released to move to a regular room on the 6th floor. That is huge for 3 days after surgery. We were a little shocked. Moving from the PCICU to a regular room is like going from a federal penitentiary to probation. Huge move and sign of progress.

We continue to be amazed by the hand of God and how He continues to hold our precious baby tight in His loving arms.... Once again we have had nothing but positive experiences with the medical staff here at Camp Commodore (Vandy Children's Hospital). Becca and I have started referring to this place as our summer time share and camp commodore since it has been our vacation spot for the past 2 summers. Even though there isn't a beach or waves there are plenty of people watching opportunities and we couldn't imagine our baby being anywhere else.

Hopefully tomorrow we will stay on track and little C will continue to improve. Thanks again for all of your prayers on Colby's behalf. We have been blessed in so many ways and much of that is a result of the people surrounding us.

Sunday, August 30, 2009

Caution: Speed Bump Ahead

We are nearing the end of post-op day 2. The day started off pretty good. There was talk of weaning Colby off some more meds and beginning to disassemble his maze of wires and tubes. We were feeling pretty good after the doctor's morning rounds. For those that have been riding this journey with us in the past you know that the PCICU wouldn't be fun without some speed bumps along the way.

They removed his cath this morning along with his pacer lines. Progress..... then mid morning we noticed his blood pressure was rising and his SATs were falling.... neither of these things are good....

As the day went on Colby seemed to be more irritable... As his irritation went up so did his blood pressure. The cardiologist want his BP to stay under 100 (top number) there were times today that his BP broke 140. This is bad for several reasons the higher his blood pressure is the harder his recently repaired heart has to work plus high BP can cause headaches which he probably already has. As his BP continued to rise his SATS continued to fall so they had to put him back on Oxygen (another irritation) in the mind of a 1 year old. High BP can also cause his SATs to drop b/c the blood doesn't oxygenate the same with high BP as it does with normal or low BP. It then became a battle of wills and Colby has plenty of will power considering the past couple of days.

As evening approached they increased his BP medication and gave him another dose of pain medicine to try to get him relaxed and back within the normal range. As of this moment he is drinking Sprite from a bottle and his SATs are 87 and his BP is 128 over something.... I'm pretty sure this isn't going to turn into a public service announcement for the American dental Association or Coca-Cola corporation but hey we are moving things in the right direction. He appears to be relaxing a little more.

Our goals for tomorrow are getting the hose pipes out of his belly (known as chest tubes), getting his central line out of his upper chest, and possibly getting some of his meds dialed in to make him feel better.
Before you pick up the phone to call DCS on us, the scratches and irritation on his face are all self induced. We aren't sure why but he has been scratching his head and face all day. Not with his baby soft hands either. Remember they have both of his hands in "no no" casts to keep him from pulling on his lines and tubes. Resulting in wounds that look like he has been in a cat fight....

I am optimistic that progress will continue. At the end of the day he is doing much better than we expected. Swelling has been minimal and he has tolerated staying in the bed pretty well.

Thank you for all the prayers and gestures of kindness. The love we have felt over the past 3 days has been overwhelming. I'm pretty certain most of it has been directed towards my wonderful children and adorable wife but I have been able to experience it too along the way. I can not imagine trying to walk this journey alone. We are so blessed to have not only God holding our hands but friends and family surrounding us with love.

Post-Op Day 2 Morning

Colby had a really good night sleeping comfortably for the most part. They slowly weaned him off of the vapotherm and he is now back on room air with just a "blow by" of oxygen. So far, he is doing well with this, and his sats are hanging in the low 80s. The goal is to avoid going back to the nasal cannula because of how irritating it is to him. He has been swatting at it with his little "no-no's" that are on his hands, and his poor face is very blotchy and irritated.

The doctors' plan for today:
  • take him off of his continual Lasix drip but continue giving a scheduled dose of Lasix through his IV (helping with removing more fluid)
  • take out his Foley catheter
  • stop the Milrinone, which is a medicine that just helps his heart to pump (getting off of this medicine is a prerequisite for moving to the floor)
  • take out pacing wires
  • continue to watch output from chest tubes and probably take those out tomorrow
  • start back on a regular diet (we just ordered one of his favorites...vanilla yogurt)
  • increase his Enalapril (blood pressure med) and monitor for his blood pressures to come down into the acceptable range
  • continue with his pain meds as needed

All of this sounds great to us! We are so proud of how well Colby is doing. He really is a little rock star! Colby is on the right path, and we pray for continued improvement and no major setbacks.

As I am typing this, Colby is resting comfortably. Our nurse, Maribeth, joked that he looks like he is lounging on the beach. His little feet are crossed as always!

Saturday, August 29, 2009

Post-op Day 1 Afternoon/Evening

Colby had a pretty good day today. He has experienced some minor "hiccups" but nothing too serious. He spiked a high fever mid-morning, and it has stayed up throughout the day. They are thinking it is just a post-op fever and nothing to worry about, but they are checking for infection just to be on the safe side. It has come down a lot in the last hour or two and is almost back to normal. Hopefully it will stay down!
Breathing difficulties has been another problem for Colby today. Around lunch, he was working really hard to breathe and his sats dropped to lower 70s. To help with this, they increased his oxygen by putting him on vapotherm rather than a standard nasal cannula. After an hour or so, there was no improvement, so they decided to try a c-pap machine. Colby is definitely not a fan of the c-pap! He was fighting the machine and making the alarm (very loud beeping) go off every other breath. When the respiratory therapist finally got tired of hearing the beeps, she convinced the doctors to go back to the vapotherm on the highest setting. This has worked nicely so far.
Colby is a little swollen right now, so the doctors have started him on a Lasix drip. Lasix is a diuretic and will help get some of the fluids off. Swelling is definitely one of those things that we we were prepared for this time. After his BT Shunt, he looked like the stay puff marshmallow.

So, as I was working on this post, the doctors did their rounds. The plan for the night is:

  • start slowly cutting back on his oxygen.
  • give him some additional blood, because his red blood cell count is a little low (Hopefully the blood will also help with his oxygen level, since his sats are back in the low 70s right now)
  • let him try to drink some whole milk since he has tolerated apple juice well today
  • continue watching blood pressure (may need to increase his Enalapril dose again tomorrow in order to keep his blood pressure down where it needs to be)

We are so happy that today has gone as well as it has. Colby amazes us with his strength!! We pray that he continues to improve and we don't face any unexpected challenges in the next few days. Thank you for all of your prayers! Please keep them coming.

This is the C-pap machine. I can't really blame him for not liking it!

Sleeping so peacefully right now...I love seeing this!!

Jason and I were lucky enough to get a sleep room again tonight! I am so happy that we don't have to leave the hospital. It may be like a closet, but at least it is a private place to sleep and shower.


We have not been able to post any pictures, because my computer would not connect to the internet. After talking to the right people, though, we now have it working! Below are some pictures from yesterday and this morning.

In the Pre-Op Holding Area...all smiles as usual!

Such a cutie!

Playing with Daddy

Mama's Little Monkey

All ready to go in his "Champ" Pajamas

Dancing to his nursery rhymes

This is from when we finally got to see him last night after surgery. He is still on ventilator at this point.

Here is Colby this morning after his breathing tube was removed. The brace on his arm is just to keep him from being able to pull any of his wires or lines out. He is definitely keeping the nurses on their toes by being feisty as usual!

Post-Op day 1

Things are stable and last night was peaceful. We were finally able to get in to see Colby last night around 6:00.... We had originally thought we would see him around 4:30 but Colby decided he wanted a little more time to get settled. So far so good on reports.

It took them a little longer yesterday to to get him settled into the PCICU than expected. Colby was having some higher levels of drainage from his chest tubes than normal so they were having to monitor those levels really closely. The biggest issue was keeping him replenished via transfusion at the same rate he was draining to keep all of his blood levels stable. The other issue was keeping him sedated. unlike his father they were having a tough time keeping him asleep. Apparently his tolerance for pain medicine and sedatives is rather high. They wanted to keep him knocked out until the bleeding/ drainage had stopped. The more he moved and more agitated he was the more he would bleed. Thanks to his persistent nurse she found the right mix of meds to keep him stable long enough to stop draining.
Sleep for mom and dad finally came last night.... we got a sleep room!!!!! if you don't know what that is.... its a closet with a bed and toilet but last night it was a 5 star closet. we were so excited we crashed.

We were on our way back to his room this morning just after 6:00 when the phone rang.... not a good thing when your kid is in the PCICU. It was the nurse..... good news.... he had just come off the ventilator.... no more breathing support. Hurdle number 1 accomplished less than 24 hrs after surgery. Yeah Colby. There is a little negative to being off the ventilator.... less pain mgmt b/c he has to be alert enough to breathe.... He appears to be comfortable. He just finished off his first bottle of pedialite which he gave himself....

Today will probably be rocky as they try to get him off some meds and his body adjusts to the additional blood flow and pressures in his upper body.... the glen procedure repairs the plumbing for the upper chambers of the heart.... mostly affecting the pressures in his upper body. his next surgery will be to repair the plumbing for the lower chamber so i assume that will affect his lower body pressures? We will keep things updated as they progress.
Thank you all so very much for all of the positive comments and words of encouragement. Most of all we want to thank you for the unimaginable number of prayers lifted up on our families behalf. There is no doubt that we were blessed throughout the day yesterday. Becca and I were talking last night while we ate about how we both kinda had a peace about us throughout the day yesterday. Yes, there were moments of emotion with highs and lows but we were both surprised at how well we kept it together. All of that to say thank you God for strength, peace, and narcotics (for Colby).

Friday, August 28, 2009

Bilateral Bidirectional Glenn Shunt

Headed to Recovery

Dr. Christian just came out to talk to us. The surgery is complete, Colby is closed, and he is headed to the PCICU. We should be able to see him in another hour or so. We can't wait!!!!! Dr. Christian said there were no surprises...everything went as planned. Thank you, thank you, thank you for all of your prayers! Keep those prayers coming for a speedy recovery with limited "hiccups."

Off Bypass 2:30 PM

We just got another call from the OR. The nurse said they had just finished the repairs and Colby was able to come off the bypass machine. They were about to start closing him back up. Closing should take an hour to an hour and half. We hope to meet with the surgeon around 4:00 when everything is finished and he is off to recovery. We are truly blessed in so many ways. We can never say thank you enough for the supportive comments and endless prayers. Thank you. Stay tuned for more info after we meet w/ Dr. Christian.

Update 1:00 PM

They are still working on repairs. Colby is still on bypass but doing well. Dr. Christian expects to finish the repairs in the next hour or so. They will then do an echo to make sure everything looks good. If it does, they will start finishing up and will hopefully be able to close him. We should hear back from them again in about an hour to an hour and a half.

Update 11:30 AM

The nurse just called to let us know that they are now working on making the necessary repairs. Colby is still doing well. No surprises so far...thank goodness!!

Update 10:00 AM

We just got a call from the OR. The open heart procedure has begun. We should get updates every hour and a half to two hours. We will post updates as we get them.... Thank you so much for all the fb comments and words of encouragement. Most of all thank you for the many prayers.

Surgery Update 1

We arrived this morning at 6:15 for our 6:30 check-in. Colby was in good spirits, which really shouldn't surprise us! He was entertaining the nurses in the holding area by clapping, smiling, and dancing to his nursery rhymes toy. Jason and I are so lucky that he is such a happy baby. His enthusiasm definitely helped us to relax a little through this extremely stressful morning.

The anesthesiologists took him back around 8:15. They said it will take about 1 to 1 1/2 hours to complete their part. The nurse will call us once they are done and the actual surgery begins. We will continue to update. Thank you all for your support and encouragement.

Thursday, August 27, 2009

Pre-Op Appointment

Today was Colby's pre-op appointment at Vanderbilt. It was a very long day, but fortunately, it went very smoothly. There were no surprises with any of his tests, and the surgeon has no major concerns going into the surgery tomorrow. Colby will be the first case in the morning, so we have to check-in at 6:30. His surgery should start around 8 am. We will post updates as we receive them...a nurse should call us regularly from the operating room throughout the surgery.

After meeting with Dr. Christian today, we now know that there are 5 steps for this Bilateral Bidirectional Glenn Operation. She expects the surgery to take around 6 hours. Colby will be on the bypass machine for the entire surgery, but they will only have to stop his heart for 2 of these 5 steps, which will take around 15-20 minutes.

We have had several people ask us to explain exactly what this surgery involves, so I will do my best to post specific details in the next few days.

Please continue to pray for Colby and the medical team caring for him.

Colby reading a book to daddy while Ms. Tina takes his vitals

We agreed for Colby to participate in a Research Study today that looks at the developmental outcomes of children with CHDs. Here they are monitoring his brain response to sounds with an EEG cap.
Nice hair!!!

Taking a quick nap while we waited to see Dr. Christian.

Tuesday, August 25, 2009

Happy Birthday Brody!

On Saturday, August 22nd, our Little Wild Man turned 3 years old. It is so hard for me to believe that he is already 3! He is growing up way too fast!! It seems like yesterday that he was our little "buddha baby"(weighing 20 lbs at 6 months old) needing us to do everything for him. Now, he is preschool age, potty trained, and very independent.

Two days old

1 year old

2 years old

"I'm fweee!"

Since he was the birthday boy, we let him make all of the plans for the day. He of course wanted to start the day by going to get his favorite breakfast, which is "gogurt/biscuit" from McDonalds. Most kids think of McDonalds for the fries and burgers, but Brody only thinks of McDonalds for the yogurt parfaits and egg biscuits. Once he finished eating his yogurt and egg biscuit, he wanted to go get donuts like we did for Colby's birthday. We normally don't eat 2 breakfasts, but he was the birthday boy! He picked out a pretty sprinkle donut, but of course did not like it once he took a bite. He only ate the donut holes again.

After breakfast was finally finished, he asked to go to the "green buggy store." That's right, he wanted to go shop at Publix on his birthday. This worked great for me, because I had to pick up a few things for his birthday dinner. We can't go to Publix without getting a free cookie, so he continued his breakfast with a chocolate chip cookie. I think it is safe to say that he had more sugar on this day than he has had in the last month!

We finished up our morning with playing upstairs, which is Brody's favorite thing to do right now. He loves "watching" movies while playing. He really just likes to change the movie several times. I am pretty impressed that he knows how to change the movie...he can work our audio/video equipment better than I can! It is sad when I have to ask our 3 year old how to fix something. Ha!!

After a quick nap for all of us, it was party time! We decided to keep Brody's birthday get together very small this year. We only invited family and a couple of neighbors that Brody plays with all of the time. Jason and I thought that a small and laid back party would be best for us this close to Colby's surgery. The weather was perfect, and I think everyone had a great time. I know Brody did! He is still talking about how much fun he had at his Spiderman bike party!

Daddy and Nana

Great Grandparents: Pa and Nenny and Granny Shug


Granna and Gacky

Maggie Moo's Spiderman Ice Cream Cake...Yum Yum!!

Spiderman Pinata Time

Brody's New Bike

Happy Birthday Brody!! We hope you had a super fun 3rd birthday. Thank you for being such a great little boy and an awesome big brother! We love you very much!!

Friday, August 14, 2009

Colby's First Haircut

Colby got his first haircut yesterday, and he did such a good job. He sat all by himself and pretty much smiled the whole time. Terri has cut Jason's hair since he was a teenager, and now she has done both of our boys' first haircuts. She always does an awesome job, and we all just love her! Brody and Colby enjoyed watching everything going on in the busy salon and flirting with all of the surprise there! They also enjoyed their suckers from Miss Terri.