BIG Morning, Quiet Day

We got up this morning and Seth called in to Alistair's nurse. She said he had a good night and they were making preparations to possibly extubate him today. We decided not to make it in for rounds as yesterday rounds were pretty much outside the the room and didn't include us. The weekday crew has a much different feel than the weekend crew...a little less touchy feely maybe? We arrived shortly before 9 and hung out. The nurses said we were working toward extubation but to get there he had to get less sedated and more awake to follow directions. So they started to ween him pretty much off his sedation and very low on his pain meds without making him uncomfortable. Occasionally they would try to wake him and get him to open his eyes. He would follow directions such as squeezing hands, smiling, shaking his head, but opening eyes seemed to prove difficult. I think those lids are pretty heavy right now! At one point the attending came in and asked Alistair to give her a thumbs up with his left hand. We waited a minute and then his left hand moved and his thumb twitched a bit and slightly rose. We were impressed that he even got the left side! But the other directions he got took him too long to do, so they decided to give him some more time. A little while later she swung by to check on him and we talked about how he had squeezed hands, and kind of shook his head in response to questions. She then asked for a thumbs up and he solidly put his thumb up and lightly lifted his hand. She felt that was sufficient and gave the orders to pull his tube.

We had been hearing stories about how rough extubation can be, how people can react and how much support they need to calm down. When they got ready to pull his, we steeled ourselves for the worst. They pulled out the tube and he barely flinched. I was relieved to not experience what we had heard and that it was easy. Alistair has had A LOT of narcotics and pain meds since Friday so getting him out of this sleepy state and into full consciousness is going to take some time. He spent the rest of the day in a drugged out stupor. He was somewhat interactive in that he would occasionally slightly open his eyes or move around. He would follow directions when asked...squeeze my hand, smile, thumbs up. At one point I was standing at the foot of his bed and he opened his eyes. I said Hi to him and told him I was waving at him (with both hands) and asked him if he could wave back. He was a bit delayed but then lifted both hands up and weakly flopped both hands up and down and waved back at me!

We did have some excitement this afternoon. Alistair's heart rate began to rise and his rhythm began to get off. We had half the cardiology department in our room along with a couple of respiratory therapists on stand by ready to bag. They ran some EKG's and pushed some medications as well as did some temporary pacing through his temporary pace maker wires. In the end they decided his abnormal rate was due to the trauma on his heart due to surgery and that it was just taking it's time to regulate. But for a while I was praying we wouldn't have a repeat of Friday!

We are hoping for more of an interactive day tomorrow. We just called into Alistair's room and his nurse has the All-Star Game on for him. He said Alistair is still out of it, but every once in a while turns his head toward the noise. We are hoping his night is restful. But we mentioned if he wakes up in the middle of the night and asks for us to call us and we will be there in a flash!

Slow and Steady Wins the Race

Today was another day with little happening. We arrived in time to be part of rounds. Essentially the plan stated was to continue slowly weening off cardiac meds and sedation. The anesthesiologist said that she was hoping tomorrow or maybe Wednesday would be the day they would extubate Alistair. His fever was up this morning, but with a little Tylenol and a cooling blanket, he was back to normal temps. The 24 hour culture results so far shows no growths, which hopefully means his fever is due to surgical inflammation. Tomorrow we will get the results of the cultures which will most likely show he is not fighting an infection. Right now he is on antibiotics as a precaution, but provided the cultures are clean, he will come off of them.

Today Alistair dropped Vasopressin and Calcium Carbonate, his sodium levels normalized and his blood sugars continue to be good. They have advanced their feedings of Pediasure. They backed off his sedation which should increase his blood pressure and help him be more awake for extubation. Everything is a balancing act. A lot of stuff that they are managing would be taken care of if he was breathing on his own, but he needs a lot of stuff to happen before he can start breathing on his own. 

He stirred a few times today when they repositioned him. He also has been reacting to the tube in his throat and coughs...which looks more like a convulsion with no noise. But a few of those times he was restless with his hands and feet. I would hold his hand and reassure him then would ask him to squeeze my hand...and he did, nice and strong. I really miss his voice, but having him respond to me that way was soul soothing.

We have begun to move in, if you will, at the ICU. After prompting from some docs and nurses, we printed out photos and decorated his room door. Then the child life specialist printed out a name sign with some sports balls and aircraft on it. So now we get lots of care providers stopping to look at his photos and asking us questions...lots about his name! 

We put this photo up to demonstrate his sense of humor. More people have seen it and crack up! So even in his current state, Alistair is still making people laugh! 

Seth and I explored the hospital a little today. We went to the "chapel." I put that in quotes because when I say chapel, I think of a small room with a small altar, a few pews and a cross and some candles. This "chapel" is a church, almost a small cathedral. It is on the 1st floor, above the Main floor, and is tucked away from most of the area we are in. It is gorgeous! 

       

So for tomorrow, as far as we know, it is another maintenance day. But there might be a chance, later in the day, that we could get Alistair awake and off the vent. That would be wonderful for so many reasons, but Alistair really wanted to watch the All-Star Game and it happens to be on tomorrow! Fingers crossed!

A Much Better Day!

We got up this morning and called in to Alistar's nurse to find out what was going on this morning. She told us the plan was still intact as far as she knew. So we had ourselves a quick breakfast and hustled off to the hospital. We missed him before he was taken down to the OR, but that was okay. Our nurse came out and let us know the updates as they occured. They took him off of ECMO and stood there for an hour and watched him. Nothing happened and he was tolerating the change. They decided to try to close and when they were bringing his sternum together, it easily fell right into place which means there was not enough swelling remaining to hinder the closing. He also remarked that his heart a very different heart from the one he saw on Friday morning. It is much smaller and will continue to get smaller. 

Once he was back up in the ICU, we got to come back to see him. Boy did he look different! He looks smaller, his chest was closed, his color was better and he has very little swelling. Most of the day was uneventful. At some point during the day, he spiked a fever...around 103. Their theory was it was due to the stress on his body from ALL the procedures and ups and downs, etc. But just to be on the safe side, they have cultured his blood and urine and started him on a few antibiotics until the cultures results come back. They also gave him some Tylenol and placed a cooling blanket under him. We went and visited him just a while ago and his fever had broke! 

They started him on some Pediasure, more for getting his gut going than for sustenance. They also began giving him some Miralax because he is on so many medications that cause constipation. When we stopped by earlier, the nurse said she had heard his bowels working. She said it is better for them to work some of this stuff out while sedated as anyone who has has major surgery knows that first time is a doozy!

The next step for Alistair is to get him off the vent. They have alluded to the fact that it will be Tuesday morning, but there is a very small chance it could be tomorrow night. They will begin to ween him off the nitric oxide (not nitrious) tomorrow sometime, which will be slow. They also need for him to be awake and alert enough for him to breathe on his own. 

This is Alistair's Heaert Pillow. All cardiac surgical patients get one and it comes with a pen for care providers to sign it. We have collected quite a few signatures so far...we might need another one!

This was another needed day. I think all of our shoulders have relaxed a little more and our worrying has lessened. Because of the sudden state of calm, all of us are beginning to feel our lack of sleep catching up with us. I have heard more yawning this evening than I have heard in many nights! It's amazing what stress does to your body! Tomorrow morning we don't need to be in right away, so it will allow us the ability to sleep in or at least have a slow start to the morning.

Gillian is now staying in Woodbury with Aunt BJ and Uncle Joe. She had a fun morning with the Sandholms and then spent the afternoon with her cousin Alexis. We got a teary-eyed call from Gillian this evening. She tried to go to bed, but decided she missed us. I'd be lying if I said I didn't feel guilty and a little heartbroken that I couldn't be there to ease her sorrow. But I also know she has had a very fun and tiring time so far and it is all catching up with her and being in an unfamiliar place just compounds that...even though she knows the people, and dogs! She just needs a good night's sleep and tomorrow will be a new day.

 

Today was Boring

The best day in the ICU is when nothing bad happens. We had that kind of day. And after yesterday, we ALL deserved that kind of day. We arrive shortly before 8am this morning. Alistair looked 100 times better than he did the night before. He was so much less swollen and his color looked better. He had woken up late in the evening enough for him to open his eyes and respond to verbal commands. He wiggled his hands and feet when asked. They then gave him some pain meds and he went back to sleep. This was excellent news as they were concerned about neurological damage sustained from his cardiac arrest the day before. The concern was low, but everyone was going to feel much better once they were able to confirm those few things. 

Rounds occured shortly after 8am. Everyone who entered the room observed outloud how much better he looked. At one point there was the 4 of us and 9 care providers standing around the room. And besides the obvious differences of us wearing street clothes and them wearing scrubs, you would be hard pressed to point out who were family and who were medical staff. Everyone in that room had a genuine look of care and concern for Alistair. I truly think he scared the SHIT out of everyone yesterday...his sudden arrest was so unexpected and it just threw everyone into a tailspin. The care Alistair has received has been top notch and we have felt nothing but support. They include us in conversations, they take the time to explain stuff and they look out for us in addition to Alistair.

Alistair spent the day maintaining. There were some balancing acts being performed with pressures and liquids pertaining to his ECMO and drying out his lungs and getting the extra water off his body while trying to maintain a decent blood pressure. His sodium levels continue to be higher and they have been flushing his stomach with free water to try to lower them. His blood sugar has been higher, which is expected with this type of trauma to the body. Everytime they ran his labs today, his blood sugar levels dropped a little more. The plan right now is to take him into the OR tomorrow morning. They are going to attempt taking him off ECMO. If he tolerates it, then the next step will be closing up his chest. If they are unable to take him off ECMO, then we should not see it as a failure. It is merely an indication that Alistair still needs time to rest and recover. They most likely will not attempt it again until Tuesday to be able to give him a better chance to be succesful. Either way, while they are in the OR tomorrow, they will use the opportunity to clean his chest incision. It will build up blood clots on the surface which can attract bacteria and cause infection. 

It is very surreal to sit and look at Alistair. He has so many wires and tubes coming out of him from everywhere. He has to be moved by the nurses every few hours to prevent pressure sores and promote blood movement throughout his body. They do range of motion with his extremities to keep them moving. When they do this, he grimaces and furrows his brow. He isn't really awake. They say he can hear us and we talk to him, tell him what people say to us for him. They say he isn't in pain or won't remember all of this later...which is good. I was showing the nurses earlier some photos of Alistair to show them what he usually looks like. It is strange to think it is the same person. He is our baby and we have done this before when we was a baby. It feels weird to be back in the same boat, but it is familiar and less alarming this time. It isn't our first rodeo, unfortunately. But we are hopeful it is our last! I would like to hang up my spurs and lasso and call it good. We know he is safe and in good hands, but the whole thing makes you feel very helpless. 

Seth's Aunt and Uncle came down to visit this afternoon and to have dinner with us. It was nice to have a little distraction and conversation beyond the activities at the hospital. They are taking over care of Gillian tomorrow. Our very good and generous friends Gabe, Ranae and Sully have been so awesome this week in having her at their house and keeping her happy and entertained. I know Gillian had a blast with them and we are so thankful for them. I know Atlas (their dog) will miss Gillian and vice versa, but I also know Riley (David & Judy's golden who is staying with BJ & Joe) will be so happy to see Gillian and probably vice versa! 

A Very Hard Day

If you had asked me this morning how the day would go, I would never have guessed how it went. It started off so well. We got Alistair up at 5:20 as he had to take a shower and wash with antibiotic soap. When we woke him up, he stretched and sighed and then he realized what was going on and said, "Oh...BOO!" Once we got out the door, we arrived at the hospital, got checked in, and walked to the waiting area. Seth and I accompanied Alistair to the pre-op area, picked out a scrub cap (they had one with vintage airplanes) on it, he asked for one for Seal, got Alistair into pj's and into bed. They then proceeded with a barrage of questions for us and asked Alistair if he wanted something to calm him. They came back with a syringe of a mix of tylenol and a slight sedative that was meant to make him drowsy and a little loopy. Drugged out Alistair was actually a good comic relief. He decided earlier in the week and had reiterated many times that he wanted to go back alone and didn't want Seth or I to accompany him. Even in his drugged out state, he still insisted that he, his animals and the nurse were the only ones to go back. Grandpa and Grandma got to come back and join us for a bit before he went back. When it was time, we told him we loved him, kissed him and told him good luck. The nurse snapped a photo for us, which was nice!

We went down to the cafeteria for some breakfast. It was fine, nothing too exciting, but good to get some food. We then headed to the waiting area. Seth and David worked on tablets or read while Judy and I worked on a baseball history themed puzzle. The nurse would come out from time to time to update us on the status of surgery. After he was taken off bypass, Dr. Dearani spoke to us to tell us how the procedure went. He said it all went well, the Cone Procedure was a successful repair and they were monitoring his rhythms because they were a little irregular, but were hoping they would normalize soon. With that news, we headed out for a bite as we still had a couple of hours before we would be able to see him. 

When we returned and were heading up from the parking garage, Seth received a call from the Charge Nurse who was frantically trying to get a hold of us. We met her by the elevators where she took us to a consultation room. She proceeded to tell us that things had rapidly declined with Alistair. After surgery they got him stable and brought him to the ICU. Within minutes of getting him there, Alistair coded because of the strain on his heart caused by the irregular rhythms and his stressed out ventricle. He went into cardiac arrest and needed to be resuscitated via CPR and cracking his chest to manually massage his heart. The blessing in all this was that the entire OR team was still around, including his surgeon and they were able to respond instantly. The surgery team placed Alistair on ECMO (heart/lung bypass) and returned to the OR. Dr. Dearani performed a Glenn Procedure (bypassing his heart and connecting the superior vena cava to the pulmonary artery). This means the blue blood from his head, neck, and chest is gravity fed and doesn't go through the right side of his heart. This greatly reduces the amount of work his heart has to do. After this his cardiac rhythms were much much better. His chest is still open with a sterile dressing, which means his skin isn't stitched up and his ribs aren't tied together yet but are closed. He will remain on ECMO until it's safe to remove it (anywhere from 1-4 days, hopefully on the short side of that) which means a return to the OR and will remain open for another day after that (another OR trip to perform the suturing of his ribs and skin). The surgeon said we get to do one thing to him a day. If we progress too quickly that's when you run into trouble.

We finally got to go see Alistair around 6:15 or so. He didn't look as bad as they made it seem. He has LOTS of tubes and wires coming out of everywhere. He is a little puffy from the trauma to his body and the build up fluid. They will be working on draining that off of him slowly. He will probably be asleep all weekend, we won't have any conscious interactions with him for a few days.  

Today has been awful...I think it officially has been chalked up as my worst, probably Seth's as well. By the end of the day we were both just emotionally drained. Nobody slept well last night so we are all exhausted and stressed beyond belief. Seeing Alistair and getting to touch and kiss him made me feel much better. We have a tough weekend ahead of us, but I think by taking it one step at a time, it will be mostly steps forward.

Meet Zebra. Zebra has been with Alistair from the beginning. He is his most precious animal. His ears are worn from Alistair rubbing them and his neck could use some support, but he has been through thick and thin with Alistair. He sat and watched over him when he was a baby in his isolet and now he is keeping an eye on Alistair while we go home to rest.

Seal is also with Alistair and helping Zebra keep an eye on Alistair for us! He even got his own scrub cap!

Last day with a Heart Condition...

Alistair impresses us in many ways. This countdown he has come up with to countdown until his surgery was all his doing and wording. It displays to us the fact that there are glimmers of understanding and optimism inside the kid who verbalizes mostly concern and negativity. Of course this is a natural reaction from someone who is staring down the barrel of a major surgery. We sat down to breakfast this morning when he told us one more day. By this afternoon he was blaming us for not doing something about this when he was a baby or even as far as for having him in general. The hospital environment draws out the most negativity. When we get home to our stuff and the ability to watch TV or do Minecraft (escape), his optimism and rational understanding returns. Needless to say, we have been riding a pretty emotional roller coaster today with him.

We started the day with a big breakfast filled with all the things Alistair enjoys. After breakfast and after he got to remove his Holter Monitor, we took Alistair to the YMCA (not nearly as nice as ours!) to go swimming. It was fun until the summer camp infiltrated the pool, then we felt squeezed out and left.  But I think he had fun and it was something he really wanted to do. No more swimming until the end of August! 

After we showered and ate lunch, we headed to the St. Mary's Campus of Mayo where Alistair will have his operation and will be staying. We first met with a social worker who seemed a little taken aback by his "Fan Club" (Seth's parents came with us since they are going to be part of everything too). I think we were far too educated on the subject at hand and processing it in a healthy manner that she seemed to be fine handing us off to the Child Life Specialist for a hospital tour within 10 minutes of our appointment! The Child Life Specialist went over some of the more detailed aspects of things Alistair will experience while still conscious in the OR. Then we went on a tour of the ICU, the patient rooms and the activity room. There is Bingo on Tues and Thurs where Alistair could participate from his room via CCTV if he chooses. There are video games in the activity room and there are therapy dogs that come around...which Alistair for sure wants to partake in!

After our tours ended, we headed to a consult room where we met with the big guy - Dr. Dearani. He was such a nice man and did a great job explaining everything in great detail. He illustrated on the drawing above how Alistair's heart is now versus how it should be (the actual drawing) and how they are going to fix it. But the shit got real...too real for Alistair and after crying for a couple decided to take a walk with Grandpa. The rest of us stayed and listened and asked questions until we ran out of them. He was patient and informative and reassuring. But he talked about a lot of scary situations and prepared us for things that could happen. He thinks Alistair will probably be on a vent through Sunday, which means he will be out of it until then. He thinks Alistair will probably be in the hospital for 7 days, which is what I was prepared for. He also mentioned, depending on how his body reacts, there could be a small chance that Alistair's chest will be left open because of swelling and will be closed in a day or two, depending on when the swelling goes down. The chance is small, but he mentioned it because if it happens he didn't want us to be caught off guard.

We are back at the house now. Alistair requested lasagna, garlic bread and salad for dinner (some of us might have a little wine too). I need to call in a few hours for the time to be at the hospital. I expect the sleeping in the house tonight to be spotty at best! 

We will do our best to post updates tomorrow. I will certainly do a blog post at the end of the day. I will update on facebook as I can. Thank you to EVERYONE - we truly are blessed to have such wonderful friends and family everywhere. It is comforting to know so many people are pulling for our son and holding us in their thoughts and prayers.  

Early Mornings, Doctors and Lightning Bugs

Our day started early today. 5am came too quick. Seth and I were up and at em pretty quick as neither of us slept well and were already awake. We had to wake Alistair from a very deep sleep and it still took him a while to really come to. He fell asleep again while driving to Rochester, which was good since he was in for such a long day!

Once we arrived and grabbed some breakfast, we went to find our first appointment - blood draw. I was not looking forward to this because Alistair has notoriously been a hard stick and I used to be one...he takes after me in that department. It took two very long tries before they were able to get what they needed. It was not very fun to watch and having been in his shoes, really not fun for Alistair. Then we went to his Chest X-Ray. That took 2 seconds as he is an expert on assuming that position! After we finished the appointment and were waiting for the next, Alistair told us he couldn't have anymore x-rays because he would have metal in his chest after his surgery. Seth informed him that although cannibals would now have to only slow cook him and not microwave him, he could still have x-rays. We all laughed...phew, humor is still intact!

The next appointment was his Echo. Alistair has come to enjoy these procedures as it means he gets to lie on a bed in the dark and watch a movie. We enjoyed the first half of Despicable Me 2, a movie we have seen multiple times. I am sad we won't get to go see the Minions Movie this weekend as our family loves the minions, as silly as they are! After his echo, we wandered downstairs for his EKG and then he was fitted for a Holter Monitor - not so thrilled about having to wear it for 24 hours as he was hoping to go swimming tonight. We will make sure to get that activity in sometime tomorrow. 

We left the hospital and grabbed some lunch. Then we headed to the house we are renting while we are here and checked in. Seth's parents arrived shortly after us and we all moved our stuff in. Alistair claimed the twin bed room and has made himself quite the little nest...it even has a TV in it as well as a couch (chair and a half). Alistair has been wanting a couch in his room for sometime, so this is a dream come true. Unfortunately it will be short lived as he is only here 2 nights. 

Alistair's afternoon appointment was with Dr. Johnson, a pediatric cardiologist at Mayo. He was very nice and chatty. After a few minutes Alistair interrupted him and asked if we could get on with the appointment! It think he was ready for his day to be over! The appointment was more or less an opportunity to talk in-depth about the procedure as well as the following days in the ICU, Step Down Unit and Floor. Some interesting and potentially scary facts I learned was: Ebstein's is EXTREMELY rare. Seth asked Dr. Johnson how common is Ebstein's and he said not very, most cardiologists only see it 1-2 times during their careers!! He also explained the need for the procedure in a different way than I had heard. Basically if Alistair didn't have this procedure while he was young, his heart would continue to stretch and grow and enlarge as he grew and he would eventually have no choice but to have a transplant. Dr. Johnson was very reassuring that this procedure was very safe and successful and that we are in the best hands we could be in as far as surgeons go. People come from all over the world to see Dr. Dearani, He also made it sound that Alistair, although in some varying degrees of discomfort, should bounce back fairly quick and will be wanting to do stuff way before we want him to! 

Alistair did very well today. He got teary this morning for the blood draw and was fighting back tears this afternoon off and on as we discussed the impending event. But once we were home from everything, he perked right up. He and Grandpa found the Mariners game to watch (they lost) while Seth, Judy and I went grocery shopping. Then after dinner we went to Flapdoodles for ice cream; Alistair had read about it in a Rochester Magazine he found in the waiting room. He thought Grandpa would enjoy it!  

When we got home, Alistair noticed lightning bugs in the next door neighbor's yard! Pretty cool thing to see if you aren't used to them!

Meanwhile our little blondy got to stay behind and hang out with the Sandholms! Gabe, Ranae and Sully are gracious enough to host and entertain her while we are down here. Gillian has made a new friend, Atlas. Gillian LOVES him!

Today's adventures for her included a bike ride to Lake Harriet and watching a friend of Sully's fish. Apparently she likes to handle the minnows! That's our girl!