Saturday, November 22, 2008
Wednesday, November 19, 2008
Yesterday, Burke was moved to the third floor surgical unit. We have our own room and we can close the door and Burke can actually sleep in the dark and quiet. This floor is quite busy though so it is not terribly quite, but more quiet than the PICU for sure. We are glad Burke has moved from the PICU to the "floor" as the staff calls it, but there is a different feel on this floor compared with the PICU. This is so bad to say but I kind of miss the PICU. The nurses there are amazing. Some more than others, but for the most part those nurses and nurse practitioners are just awesome! In the PICU you don't have your own room there are just curtains to divide the patients and there is generally one nurse per patient. When the patient becomes more stable then one nurse will oversee two patients. I think we miss the one on one attention the most. If we think he need anything, the nurse is right there doing what needs to be done. Now, on the "floor", one nurse has maybe three or four patients and they are not right here to make sure Burke is perfectly okay. Yesterday, I took the change harder than today. I don't like change, and coming to the floor was a definite change. But today is better. It is a good reality check for me. I loved getting the one on one attention I know Burke needed while he was in the PICU, but they moved him to the floor for a reason, because he doesn't need to be checked all the time. And the nurses here are just outside our room and they have monitors at their desks that show each of their patients' monitors. The difference is that they are not in our room 24/7 checking on every move that Burke makes. It is different and I know he is where he needs to be, but I know with out a doubt in my mind that the PICU is a special place. The atmosphere is unique and the people who care for my child and all the other children in there are gifted and special. I will never forget how those people have touched me.
These nurses on the "floor" are special and great too, but I don't feel as connected with them as I did when we were in the PICU. We haven't overcome the major challenges and obstacles that we had to hurdle across while in the PICU, and I know that brings people together. Heavenly Father is teaching us something when we go through our challenges. It brings us to our knees more. It bonds people and helps us rely on others for help, strength and support when we are challenged. And ultimately it brings us closer to one another and closer to Him. I am so grateful for all that we have gone through. Though I am not pleased that Burke has to be the one experiencing the pain, our trial with our dear heart baby is something we need to go through right now in our lives.
Burke is doing well. He had a great day yesterday and we even went on two wagon rides!! He LOVED getting out. We went into the playroom for the first time and he just came alive. It was great to see him want to play again.Today, Wednesday, was also a good day and pretty uneventful. Burke woke up this morning pretty crankey and we were thinking that he might be coming down with a little cold. He sounds congested and was acting very miserable. But when they gave him his pain medicine a little while later he went right back to sleep and slept all morning long. He had a lung profusion test done today (which I don't really know what that entails), and we will know more about how his lungs looked when the doctors come around tomorrow morning. They will look at his chest x-ray that was also done this morning and make sure he is okay to be discharged. If everything comes out good on those two tests then we might be headed home tomorrow! Can you believe it!! And only the ones who have read this whole post will know that, so thanks for reading, you guys get the golden star! We might be coming home as soon as tomorrow!!! We will know tomorrow for sure when we get to go home. YIPPEE!
Tuesday, November 18, 2008
He loves helping the nurses out by moving the oxygen prob to a different finger. He usually doesn't even have to be asked to help out, he just does it on his own! What a big helper! Notice the foot up in the air. He was loving being held by daddy!Grandma and Grandpa Bates have been here visiting and helping with Burke since Saturday. This was last night when they were leaving, he melted all of our hearts when he was giving them a big good bye wave!! Thank you so much for all your help while you were here mom and dad. Burke loved seeing you and loved how you made him smile and laugh. We love you both so much and are grateful for your love and support!
Monday, November 17, 2008
Sunday, November 16, 2008
Well, day 6 post op in the PICU is coming to a close. We have had a great day and Burke is recovering really well. Here are some pictures to compare the medications he was on the day after surgery (picture on the left) and the meds he is currently on (picture on the right). There were 8 monitors next to his bed then and now there are only two, and one is not even being used, it is just there in case they need it. They have weened him off of most of his sedation medications. He will be on diuretics and some more meds to replace the potassium he looses because he pees so much from the diuretics. We should be released from the PICU tomorrow and be "on the floor" which is a regular hospital room until we go home. We anticipate being there for only a week or so. He is doing great and is awake more often now. We got to hold him more today. Tyler and Grandma Bates were able to hold him for the first time today. And Grandpa Bates made him smile for the first time!! He was talking to grandpa for a long time and just telling him all about what he has been going through. He talks a lot more and is more alert. He has great coloring and is pink and looks great, though he probably has lost a few pounds after surgery.His first smile after surgery!!
Saturday, November 15, 2008
Rachel and I wondered how long it would be before Emma grew tired of this response. Well, on Thursday Emma didn't like that answer any more so after Rachel told Emma that "Burkie is asleep..." she replied with, "well wake him up." To this we have tried to give here a 3 year old version of why Burke is always sleeping.
Burke woke up for a little while Friday and was calmly laying there in his bed looking around when we thought, now would be a great time for Emma to finally talk with Burke. We hesitated a little not knowing how Burke would respond. We decided to give it a try. So I quickly sent a text off to my sister Becca with his bedside telephone number asking her to call so Emma could finally talk with Burke. Very quickly they called. I passed the phone to Rachel who then put the phone down to Burke's ear. The instant Burke heard Emma's voice he went NUTS. He must have thought it was playtime. He squirmed all over that bed trying to escape all the tubes and restraints. Rachel quickly pulled the phone away and handed it back to me. I put the phone to my ear just in time to hear Emma say, "I love you Burkie." While I finished quickly with Emma and Becca, Rachel was trying to calm Burke down. Rachel settled him down but it was very apparent that Emma's voice to Burkie meant it was playtime....and it is, but not quite yet....Burke just needs a few more days.
Friday, November 14, 2008
Wednesday, November 12, 2008
All the events of today have shown us that there is certainly an art to health care. The nurses are constantly adjusting medications to keep him comfortable and sedated but also trying to let him come closer to waking up so he can, for example, begin to breath on his own and be extabated.
Tonight the nurse ended up putting him temporarily back on the paralytic because he was waking up and squirming around too much. As I am sitting here writing this the paralytic should have worn off by now and he should be resting comfortable with the pain killers and sedative. His oxygen saturations right now are 77 which is great and they are decreasing how much oxygen % they are giving him. He is down to 45% on the machine. His blood pressure is good and his heart rate is still high (165ish). His heart has a normal beat whereas earlier today it was somewhat irregular. His blood gas (which is the blood count) is 49 which is great. So his body is doing what it needs to in order to heal and recover from this major surgery. Heidi our PICU nurse (she has been here the past two nights and is on tonight also) said, "he is doing much better than he was yesterday." She also mentioned that she is coming down on the Nitric acid which helps keep his Pulmonary artery relaxed and open. Burke is certainly in great hands and we are so grateful for all the nurses, nurse practitioners, doctors, and surgeons who all care for and worrying about Burke. Thank you for all your prayers, they truly help.
Tuesday, November 11, 2008
Well, it is now the day after surgery and Burke is now stable and doing fine. Last night was rough though. His oxygen levels were low all night and they were pretty worried about him throughout the night. They finally ended up giving him Nitric Acid, a gas, to help relax his pulmonary bed in his lungs so that oxygen will flow more freely and get his oxygen levels higher. This morning his sats were in the high 70's where in the night time they dipped into the low 50's.
He is much more stable today than yesterday. He is on a lot of medications to keep him stable and he was on a paralytic to keep him from moving and possibly pulling out his breathing tube. This morning they have weened him off of the paralytic but they have found that as he begins to wake up more, his Sats drop and his blood pressure goes up. As a result they have given him versed (sp?) to help keep him sleepy without giving him the paralytic. I was just in with him when he was starting to wake up more than he has, and he was moving more than they wanted him to. They quickly gave him versed again, and he is back asleep and content. He almost pulled his breathing tube out. He was very fidgety and did not want to be held down. When he would fight us to move, his oxygen levels decreased and so it told them that he is not quite ready to be awake today. They also ordered restraints, so he has his arms tied to the bed right now. It is so sad, because Burke does not like to be held down in any way.
He does have a breathing tube like I just said, and they are giving him oxygen through the tube. He is gradually being weened off the oxygen so that he can breathe more on his own. They should be able to take out the breathing tube in a few days or so, but it might take some time. This morning they also put in a feeding tube (through his nose) so they can get some food to him. They want it to go directly into his intestines, but they just reviewed the x-ray they did after putting in the tube and it looks like the tube is in his stomach. They are trying to manipulate the tube to have it go to the proper place. I do not know why they want to by-pass his stomach, but obviously it is necessary right now.
He has many tubes in his body right now, and I wish I had a picture of him, but I have not taken one yet. He surprisingly looks very good for what he has been through. He appears to be swollen (which is expected) but not as swollen as I thought he would be. He has a catheter in his little pee pee, and his urine output is very good, so that means his kidneys are working properly because his heart is working well. He has three chest tubes. One, that is draining blood from the sac around his heart. The other two tubes are draining fluid from the sacs around his lungs. Last night he was bleeding a lot through the tube in the middle coming from the sac around his heart. They were pretty concerned with that and wanted to monitor it though the night. His bleeding is now under control so they will not have to open him back up again.
We are hanging in there and doing well. A little sleep deprived, but we are good considering what out child has undergone. Burke is doing well, and we are hopeful of a good recovery. We will post a picture sometime this afternoon. We love you all and are so grateful for all your love and support and prayers in Burke's behalf. He is being watched over and we are grateful for his progress and for what the doctors have done and are doing to keep him stable and comfortable.
Monday, November 10, 2008
After all the administrative check-in was complete the Anesthesiologist came to get Burke prepped for surgery. With all the equipment and monitors that is required for this surgery the Anesthesiologist needs 1 to 1.5 hours of hooking Burke up to everything before the actual surgery can begin. That 1 hour or so gave Rachel and I time to meet with Dr. Kouretas (the surgeon) to discuss today's procedure.
The results of last Friday's MRI showed that Burke's Pulmonary Arteries have not grown very much. In fact, there is some indication that the right branch (the branch that in the past was growing quite well) is now shrinking and the left branch which was ballooned during the 2nd heart catheter (in June) has not grown like they had hoped it would. With these MRI results there is no way a full repair of Burke's heart can happen. The procedure that is planned now is very similar to his 1st surgery. I don't have AutoCAD on this computer so I will have to use some of the drawings from previous posts to explain what the new procedure is all about. The drawing below is of Burke's 1st heart surgery. The patch work that is shown in that drawing is very similar to what Dr. Kouretas is planning on doing during today's surgery - except a lot more of it. He said he is going to split-open and patch-over as much of the left and right branches as possible.
The other part of Burke's surgery today will be to remove the Central shunt that joins the two Arteries. When he removes this shunt he will sew up the hole in the Aorta (the artery shown in red) where the shunt was. He will then connect a conduit to the Pulmonary Artery that extends down into the Right Ventricle (as shown in Orange in the next drawing below labeled "Burke's 2nd Surgery plan "A"") The conduit will be 7 to 8 millimeters in diameter where as the old shunt was only 4 millimeters in diameter. This should provide ample blood flow to the Pulmonary Arteries and blood flow is what makes tissues grow. We hope and pray that the Arteries will respond to this increase in blood flow. Today's surgery is anticipated to last between 4 to 6 hours. Burke's heart will not need to be stopped but he will be hooked up to the heart-lung machine so that the blood can be oxygenated - since no blood will be going to the lungs while they work on the Pulmonary Artery.
Friday, November 7, 2008
I am jumping ahead to Burke's 2nd Heart Catheter. A Heart Catheter is where a Cardiologist inserts a small tube into one of the major veins in the growing area. He then pushes that tube through that vein (the vein essentially acts as a conduit) and into the heart. Once the tube is in the heart the cardiologist can do a number of things. One in particular is to inject die into the blood that makes the blood visible with X-rays. This then helps the doctors see the different parts of the heart. This is what Burke's 1st heart catheter was really all about. We learned alot about what his anatomy looked like from this procedure but there really isn't anything cool to show as a result of it. The 2nd Heart Catheter on the other hand was a bit more involved. The surgeons not only inject die, they also tried a few other things in hopes of making progress towards a normal heart without an actual surgery. The drawing below illustrates how the Cardiologist was trying to pick away at the Pulmonary Valve in hopes of getting it to tear open but he was unsuccessful.
With the help of the die, the Cardiologist saw that Burke's upper small hole had healed over. This was good news but the Doctors thought that the hole was probably working in Burke's favor because it was allowing un-oxygenated and oxygenated blood to mix - something that for Burke is a good thing. The drawing below illustrates the small hole being re-opened by pushing the catheter into the then almost completely sealed off small hole then ballooning the catheter up to stretch open the hole.
I'll finish the rest of this post later.