DAY SEVEN

Wed, Jan 23, 2013 / Day 7:

Penny, my mother-in-law, came up with me today and it was a happy day! William finally seemed to be turning a corner and was doing so much better. A lot of change was made today. They were able to pull two chest tubes and the pace wires. They were able to take away certain medications so that he was on 6 instead of 13 and they even started feeds. It was little - 6 cc an hour but it was a start. Overall they decreased the settings on the ventilator and also decreased sedation medicine. The only negative was that his blood count was low so they did need to give him more blood. He did so well with all these changes. He even woke up for a little bit while we were there. It was so good to finally see those eyes and watch him follow me. I know he was young at the time but I think he recognized me and knew who I was. It was such a good day after so many days with no progress.

We loved all of our nurses but Kim was with William the most and we loved her!

Kim

Penny

DAY SIX

Tues, Jan 22, 2013 / Day 6:

Today William spent resting and giving his body time to heal. My mom came up with me so I didn't have to be alone. He looked much more comfortable and had even pinked up a little more. They did another echo today because he wasn't making the progress they would like to see. They had to sedate William pretty good because he had woken up and was moving around and grabbing all the cords. Sadly I wasn't there at the time but would have loved to see him so awake. Nothing looked wrong with the echo but they were thinking about doing a heart cath in a couple days to get a better picture of what was going on. 

DAY FIVE

Monday, Jan 21, 2013 / Day 5
Tyler was able to come up with me after work. William looked much more pink and his hands and feet were feeling much warmer. They nurse said that he wasn't really getting better but he wasn't getting worse either. They hoped all he would need is time. They were keeping him still pretty heavily sedated. As I watch the baby in the next room (had surgery the same day as William) getting well enough to remove the ventilator, I had to remind myself that the chest closure the day before was basically another surgery and that time would be starting over.

DAY FOUR - CHEST CLOSURE

Sunday, January 20, 2013:

Today we headed to the hospital early to sign consents to do a chest closure. William's chest was left open after surgery because when you're on the bypass everything tends to swell and his body is too small to close the chest. The risk of infection goes up when the chest needs to stay open so they keep the opening covered with antibiotics. Dr Burch said the chest closure went great with no problems. 

Later that afternoon, William started to turn really blue and his hands and feet were ice cold. He wasn't getting good circulation to them and he didn't look good at all. The nurses couldn't figure out why because all of his levels were perfect. They did a head ultrasound and echo and everything looked fine. Dr Burch said that they would see how he did with time.

Prepping for surgery

That night I think everything became more real. I knew it would be a hard week as Tyler would have to return to school and work. I would have to balance and divide my time between London, William, and Tyler.  As we got into bed I grabbed William's blanket from his bed and held it tight. It smelt just like him and brought back memories of just days before. I missed feeding him, changing him, holding his hands, and making him smile. I even missed his cry. Tyler had helped me get through the weekend without being too emotional. Now we had to go back to real life but half of my life wasn't home with me. 

DAY TWO & THREE

Friday, January 18, 2013 / Day two:

The next morning we spent with London and then spent the rest the afternoon with William.  He opened his eyes a little today but only for a minute. He looked pretty swollen everywhere. It was comforting to know that he was getting the best care and being watched and monitored constantly. They kept him pretty sedated and medicated as his chest was still open.

Saturday, January 19, 2013 / Day Three:
We brought London with us to see William. She came in for a quick second and then we switched off watching her and seeing William.

DAY ONE OPEN HEART SURGERY

Thursday, January 17, 2013:

Today was a very hard day. We had dropped London off at my parents last night and didn't really get any sleep. I was up making sure William ate enough as he couldn't have anything after 3 AM. We left the house by 5 and made it to Primary's by 6. We registered and did the routine weight check and SAT level check. Around 7 Dr. Burch and the anesthesiologist brought us into a room to discuss what was going to take place.

On the way up to the hospital

Waiting to talk with Dr Burch

This is the only time he has ever taken a binky

Dr Burch did not sugar coat anything. He explained each procedure that was involved and all the risks and percentages that go along with them. He started with this procedure being in the high 90%, then with each procedure the percentage got lowered and lowered. With the tiniest kink or slip of the hands things could go back very quickly. Tyler and I couldn't pay attention to too much more of what he said as what was about to happen became painfully too real. Dr Burch left and the anesthesiologist then went over what he would do. Tyler and I were too emotional to pay attention. We then left the room and walked down the hallway to some doors. I was unaware that this is where we would have to hand him over. I wasn't ready. We hugged and kissed him and handed him to the anesthesiologist and watch them disappear through the door. 

Tyler and I sat in the car outside, cried, and said a prayer. It was hard not to envy those walking by on their way to school or work - it was just a normal day for them. We went to the same day surgery waiting room where we were updated every 2 hours. At 9:10 they called to tell us surgery had started and William was doing fine. 10:40 William was on bypass and was doing really well. Around 1:00 we hadn't gotten an update and called to see what was going on. They had completed the Arterial Switch and were doing and echo to see if they could take him off bypass. Later we were notified there wasn't enough blood mixing and that they would have to go back in. We weren't sure at the time what they were doing and why it was taking so long. We were growing impatient as we watched family after family come and go. Each time the phone would ring we anxiously hoped it would be an update for us. Finally at 7PM we got a call that William was off bypass and doing good and that Dr Burch would be in to talk with us shortly. He had been in the operating room for 12 hours and on the bypass somewhere between 4-6 hours. 

Dr. Burch came in and summarized what took place. He said he did a good job but not perfect. He explained that the Arterial Switch was done and it didn't work like they wanted it to. So they had to proceed with the hemi mustard procedure - where they baffle from the IVC to the RV including that extra LSVC. Again this is done maybe once every other year at Primary's and maybe 50 times across the nation a year. They also had to leave his chest open because his body was still little and there was lots of swelling due to being on the bypass. We thanked him and went to go see William. 

Nothing can really prepare you for what you will see in the CICU. I had seen pictures of babies after surgery to help prepare myself but it was really hard to see William look so sick and hooked up to so many machines especially when he looked so healthy and happy that same morning. As hard as it was to see him, it was somewhat of a relief to finally see him after worrying about him all day and to know that the surgery was over. The nurses we had were so kind and sweet and willing to answer any questions we had.

Later that night we were sitting in his room and the monitors started beeping that his heart rate and SAT  levels were quickly decreasing. 70, 60, 50, 40, 30, 20. Within seconds several nurses arrived at his bed side and we stepped out of the room watching them work on William. I became an emotional wreck as I couldn't believe this was really happening and wondering if William was going to make it. A nurse quickly lead us to a room next door and came back a couple minutes later saying we could go back in. Dr. Burch arrived out of no where and hooked the pace wires up to pace his heart. William was ok. 

PRE OP DAY

January 16, 2013:

Today was a long day! I headed up to Primary's around 11:00 to get all of his pre op stuff done. I was told to come do the sedated echo first and that cardiology would take care of the rest of his pre op stuff there. The sedation team came in and they could not find a good enough vein for probably 20-30 minutes. They poked him over and over and nothing. Finally they got a special light to help them and found one in his foot and he went right to sleep. They did blood work while he was sedated and through the same port they gave sedation so they didn't have to poke him again. Right after they had removed his IV, they came back and said the blood had clotted and that they needed to do it again. Luckily another poke didn't really phase him because he was still asleep.

The echo took over an hour. They didn't have to give William much sedation as he was pretty tired but William had a hard time waking up and recovering for some reason. His wouldn't open his eyes and his SAT levels which normally were between 90-100 would drop into the 70's. After about 2 hours of trying get him to wake up and eat and with his SAT levels everywhere, the nurse seemed pretty worried and spoke with Dr Pinto. They thought it was best to go upstairs to the same day recovery room and asked if I could spend the night if he didn't make progress soon as it was already late and we had to be here early the next morning anyway.

By 8:00 William's levels were stable and he was able to eat. So they sent me down stairs to do a chest xray and then said I could go home.

HEART CATH #1

Dec 18, 2012:

We arrived at Primary's around 9:30 AM. We registered, signed consents, met with the anesthesiologist and finally Dr. Gray. He told us he likes his patients to be boring, not interesting, and that hopefully it would only take an hour or 2. We followed him downstairs to the operating room. It was really hard to hand William over to the nurse and see the doors shut behind us. They gave us a pager so we grabbed some food to make the time go faster. Finally 3 hours later our pager went off which meant we could go meet with the doctor. We sat down with Dr. Gray and the first thing he says was that William's heart was very interesting. That was not what I wanted to hear. Not just interesting, but very interesting. Not nessesarily the defects he found, just the combination of them all. He found a couple VSD’s (hole between ventriles), a large ASD (hole between atruim), and a LSVC (Left superior venacava). He said  because the Right Ventricle was so small, it couldn’t handle the amount of blood and the pressure of pumping blood to the body. The Right Ventricle would fill up with blood and then the remaining blood would get backed up to the lungs. Then as the ventricle would pump to the body some blood would go across the ASD because the pressure was lower on the other side. So blood was mixing over and over and they were unable to fix it with a heart cath. Dr Gray didn't have a solution when we finished talking with him but he knew surgery would need to be done within the next couple weeks. If they were to wait they would risk the heart getting sick and going into heart failure and at that point they wouldn't have many options. He kept saying over and over that William's heart was very complicated. He wanted to disscuss it with the other doctors and see what they thought was best.

This was very hard to hear as we had hoped that nothing surgerical would need to be done, especially this soon. I was so scared because the doctor didn't know what the solution was. We were taken upstairs where William recovered from being sedated and were finally able to come home around 8PM.

Waiting to meet with the doctor

He was so hungry

He learned to suck his thumb

Over the next 2 weeks: *Remember I said William's heart is complicated and pretty confusing and there are not any pictures that show exactly what it looks like.
Dr. Gray called a couple time and said he wanted to continue talking with different doctors to figure out what to do and to plan for surgery in January. The first week of January he called and said they had decided what needed to be done. I met with Dr Pinto that week to go over the details.  Two open heart surgeries would need to be done. The "Double Switch".

The first one was planned for Jan 17 which involved the Arterial Switch - switching the pulmonary and aorta arteries. This would make his blood flow backwards, blood would be pumped to the body first and then the lungs making his Saturation (SAT) levels or the amount of oxygenated blood much lower - making him a "blue baby". This video explains the procedue on someone with D type or uncorrected TGA.

The second would be done the earliest at 4 months of age (end of March) which would involve the Atrial Switch w/ a Hemi Mustard or the Atrial Switch w/ Bidirection Glenn. The Atrial Switch would involve baffling (making a wall) the blood from the Inferior Venacava (IVC) to the Right Ventricle (RV) as well as baffling William's extra LSVC into it. This is a proceedure that is done maybe once every other year at Primary's and maybe 50 times every year across the nation. So it's not done alot and they don't know exactly what to expect during recovery. The Bidirection Glenn involves redirecting the blood from the Superior Venacava (SVC) to the Pulmonary Artery or in William's case to his Aorta Artery so that the heart doesn't need to pump the blood to the lungs. This needed to be done because his small RV can't handle the amount of blood.

There is not an exact picture of what William's heart looks like but this is very similiar to the Atrial Switch w/ a Hemi Mustard. The difference of this and the Bidirection Glenn is that the SVC or #1 would be directed straight to the Pulmonary Artery which lead to the lungs.

January 6^th:
Today was a happy day! William smiled for the first time at us. He looks just like Tyler with his squinty eyes. What a handsome little boy. 

CHANGE IN PLANS

Dec 7, 2012:
We followed up with Dr. Pinto and she confirmed that everything on the echo looked great and she said she didn't see William needing surgery for many many years or even not at all depending on how his Right Ventricle did. I was about to leave and make an appointment for a couple months later but remembered another question. I was given a paper to fill out before my appt that it asked if William had experienced any type of fast breathing. I brought this up with Dr. Pinto and said that occasionally William would breath fast. I hadn't been too worried it. I remebmered London breathing fast when she was a baby just because their heart rates are so much quicker than ours so I assumed it was not related to his heart. I wanted to make sure though. She watched him breath for a minute and said that we should probably have an xray on his lungs taken. We headed over to take the xray and then Dr Pinto called us later that day to tell us the results. They found fluid in his lungs and they needed to do a heart cath to find out why.

I don't know if it was the spirit prompting me to ask the question but it was a huge tender mercy that we did otherwise the heart cath never would have been done.

NEWBORN PICTURES