Thursday 30 August 2012

Candidate?

Today we started the process called "work up" which is getting everything in order to get Madden listed for a transplant. All parties have to be on board with the decision. Madden was seen by numerous specialists and had numerous tests done, including a CT Scan and an ultrasound of his stomach, liver and kidneys.

In the morning we sat down with the transplant team and discussed our option and how fast we could potentially get Madden listed and how long he could wait for a heart. We then spoke to the head of the "artificial heart" department. Basically they have a pump that is connected to the heart and does the work for your heart until you are able to receive a transplant. This step has some incredible risks but an incredible reward if all goes well.

Both conversations went pretty well and were generally positive.

After all tests were done we sat down with the group of decision makers to hear if Madden is a candidate for a transplant. The consensus is that at this time Madden is not a candidate. They do not think Madden will survive a transplant at this stage because he is too sick. What they have decided to give us as an option is to put Madden on a "Berlin Heart" and see if his other organs can recover. If they can then he may be considered a candidate for a transplant. This decision would be made after a couple weeks on the Berlin. The head of the artificial heart department was VERY honest with us. He told us that Madden's chances are as low as they get. This solution is incredibly risky in his situation and he said we need a lot of luck...this would be a miracle if it worked. Madden's chances are not good. He also told us that the chances of Madden ever getting home are a lot lower than the chances of Madden dying. It was a heartbreaking conversation. The group then went on to tell us that if we felt that Madden had been through enough and that this was the end of the road for him they would be on side with that as well. They would offer him a dignified passing and believe we have offered him everything he could handle. This artificial heart is our VERY last chance. They are only offering this to us because they want us to feel like every option has been exhausted for Madden.

The truth is if we don't go for this, Madden will be in heaven by the end of the weekend. If we go for this Madden has a very slim chance of making it but in the end it might already be too late. His organs have been so sick for so long that they may already be too far gone. He needs a miracle.

I am struggling with knowing what Madden wants. I know that I want him to be here and to keep fighting...but it needs to be what Madden wants. Because of this we have put a "do not resuscitate" order on Madden's file. As a parent it was the hardest decision to make. But I have to believe that if Madden really crashes it is his way of telling us that he can't fight anymore, that he has had enough. And I am going to respect him because after everything this little boy has been through it is the least I can do for him. In this situation my only request is that they doctors do everything they can so that we are able to say goodbye to our son, our small hero.

My life has changed so much in such a short time. I still can't believe we are really here...that this is real. The only comfort I have if knowing that I have done what I said I was going to do from the beginning of this journey and that is love Madden as much as I can for as long as I can.

Madden I love you. I love you. I love you.

Transplant or not?

Yesterday was harder on us then any other day with Madden so far. I still don't want to remember more about yesterday than the title of this post. My husband posted on is facebook account so I have stole that to share here as well.

What I will tell you previously is that yesterday we were told that our baby is dying and that at best he has 3 weeks of fight left in him. They did an echo from down his throat to get a better picture of his heart. This showed that is heart muscle is thickening and getting worse. Madden will not be able to love with his heart. He needs a transplant. His body can fight and be supported for another few weeks while he waits. However, Madden may not be a candidate for a heart. If he isn't we have days left with Madden, and not many days. We will find out by Friday morning.

Real real tough 36 hours for us.....and for Madden. Words you don't want to hear about your child.....fatal....lethal....life support....transplant....dying. All unfortunately we've had a good dose of in the last few days. Carly I'm sure will put the more technical stuff on our blog (as she is excellent at that) but Madden has taken a serious turn for the worse. Our doctors have told us Madden is dying.....and we need to find a "magic bullet" if he is to live. Madden has a thickening in his heart and now will need a heart transplant to survive. As I sit at this computer at 2am ..... unable to sleep...trying to make sense of this...I sit back and I wonder...what has this come to. Madden needs a transplant.....and what does this mean? It means a little baby somewhere has to die for my son to live. I knew for weeks this was a possibility but I never ever wanted this to happen. I never wanted it to come to this. How can I as a father....now rest all my hope on my sons survival on another familys sorrow. I honestly want to be sick. I hate this. I begged and pleaded...never ever wanting to utter the words... transplant...as I knew what the other side will be. But now.....push has come to shove....for Madden to live we need another babys heart. The other side to the coin is Madden may NOT be a candidate for a new heart...thusly their will be tests done and conversations had tomorrow to see where he stands. believe me everyone....I don't write on this page to look for sympathy for me....the sympathy should go to a little boy who has fought his ASS off to be here 87 days in and continues to knock over hurdles like a champion. It's difficult to share your life on facebook or whatever forum but I feel their is a purpose....maybe that purpose is to educate people on our struggle....maybe it's about drawing a community together over a child in need.....or maybe it's just simply to reach out to parents and say..hey....love your kids fully...hug and kiss them every chance you get....because I think we all take that for granted. I wrote along time ago about my work situation and my time with my family. In that letter I said as a family Carly and I both felt it was important for me to take off the time and spend as much time being with Madden as we had no idea how long he would be here for. My last post or 2 ago I said only time will tell if we made the right decision....well....time has told me...and we did make the right decision.... I needed to not only be there for Madden but I needed to be there for me. Please do not take this as us giving up...but just the opposite....I will fight for Madden as long as Madden wants me to fight for him. I will exhaust this last avenue we have for him as I feel I owe it to him for his fight. But as the doctors have told us....that decision may not be ours...but Maddens...and he may say he has had enough....but until that slaps me in the face all I can do as a father is hope....and hope that somehwere out there...a miracle for Madden awaits. Madden...I love you buddy more then words can describe....please keep fighting...AND KNOW YOU'RE LOVED BY NOT ONLY YOUR FAMILY....BUT DOZENS AND DOZENS AND DOZENs OF OTHERS.

I know you are all praying for Madden...and have been...and I want to as always thank everyone for their support.

The only thing I want to add: Madden we love you more than you will ever know. I want to bring you home and love you up but if this fight is too much. I understand and will love you forever regardless of where you are.

I want to say that here because I everytime I try to say it to Madden the words won't come out...all I can muster is "keep fighting Madden. I love you so much. You can do this. We will get you home. You will get a little heart. I am so so so proud of you". I am just not ready...

One day I may write about our past 24 hours but today isnt that day.

Tuesday 28 August 2012

Not a good day...

Well today was really not a good day. We are back to having blood pressure issues, big blood pressure issues. We also had a lot of conversations with doctors today that I wish we never had to have. Conversations about the realistic potential that Madden might not make it. Not something I am ready to believe but something that is very hard to hear regardless of what I believe. The team at the hospital does still think that him surviving is a realistic potential. Good. Today was just really really hard.

Then around 8:30 I called the hospital. The nurse told me they were just about to call me...I said "uh oh" and she said "ya, just let me pass you to Dr. Conradi" - the intensivist on in the unit who just happened to be in our room. Never ever a good thing. Apparently they think Madden has yet another infection...one more complication he does not need. They took cultures and started him on 3 antibiotics to cover everything. He continued to drop his pressures so they had to go up all all support and start more support meds. They increased his norepi and started him on epi again. They also had to resuscitate him with fluid - 70 mls which means he is going to stay puffy. They paralysed him again so that the ventilator would do the work for him so he wasn't wasting energy. The doctor told me that he is very concerned about him and flat out worried. Also not a good thing. Earlier today he told us that another infection for Madden could be lethal.

Today sucks.

Tomorrow is a new day and it needs to be better.

Madden, all I can say is that I am sorry that this is happening to you. I am sorry that this is your life. I promise you I will stand beside you and do my best to help you get better. I love you and I want you home. Keep fighting small prince, you will win this.

Monday 27 August 2012

12 weeks - Happy Birthday!!

Every Monday we celebrate another week with Madden. Every Monday I wish him a happy birthday. Every week is another little victory.
Happy Birthday Madden! 12 weeks old! You have been through so much in such a short time and I am so so so proud of you. You are so strong and so inspiring. I am so proud to be your momma.

My plan today was to blog about Madden's 12 week birthday. I figured I would have nothing else to talk about and today would just be another day of grumbling along in the paediatric intensive care unit. I was wrong.

When I got into Madden's room this morning the nurse told me that the plan is for Madden to have another cardiac cath on Thursday so that they can do a biopsy of Madden's heart. This is not in my plans. I feel like Madden needs a break from all surgeries so that he can have the opportunity to heal. I don't feel like he has been given that opportunity yet. The problem is that Madden's heart is thick. Thicker than normal even for all the stress and extra work his heart has been put through. This makes the cardiologists think that there might be another reason for this thickness of his heart.

I asked the intensivist that is on in the unit this week if another echo could be done prior to the cath to potentially get some answers that may allow us to forgo the cath. Initially he said "no" but after more discussion he said the request wasn't unrealistic and he would ask the question on cardiac rounds tomorrow morning. I am hoping that the echo will show that since his surgery the thickness in his heart is unchanged or better yet a little less thick. This would then allow us to forgo the echo and know that Madden just needs time for his heart to remodel and heal. A cardiac catheter is another surgery and is quite invasive. I am not convinced that Madden's heart is ready to undergo more stress. He JUST stopped having arrhythmia's...and these are a sign of an irritated heart.

The problem is this, if Madden does have another condition and that is causing the thickness of his heart, he will need a transplant. If this is the case knowing sooner than later is best because once you are listed for a transplant the clock starts ticking.

This is not a path I want to have to go down. Though one of the doctors did tell us that his gut feeling was telling him that he feels that this is the road we are going to walk. I still believe that Madden's special little heart is going to work.  It just needs time to figure out how to work.



This morning when I looked at Madden I noticed that I could start seeing his little jaw line coming back. It may sound funny but this is my favourite feature of Madden's. I love his little chin.



Little chin ------>









Also Madden was able to finally open both eyes today! This means the adema is getting better. However...I bought Madden a hat and put it on him today. When I put my fingers on the back of his head to lift it so I could get the hat on, I could feel how squishy his head is in the back. It made me not even want to put the hat on. The squishyness is all adema. The poor kid. The fluid is pooling at the back of his head because he is always laying on it. He needs to get some fluid off. I know this is happening because Madden does have a negative fluid balance every morning. It is just a slow process. It's all a slow process.



Madden I am sorry you are going through all of this. I wish I could do something to make it better. This is not the life I wanted for you but I can promise you it won't be like this forever. Things will get better. You will have the life I want for you. I love you as big as the sky and always will. xox


Sunday 26 August 2012

The little things are the big things

Before Madden was born I, like most people, took for granted all the little things in life that we forget to be thankful for. Over the past few months I have learnt to really cherish the little things in life. Here are a few things that I will never take for granted again:
  • Being able to hold your baby
  • Touching your baby skin to skin
  • Being able to get up in the night to check on your baby
  • Going somewhere and taking your child with you
  • Being able to open your eyes
  • Peeing
  • Growing
  • Feeding your baby...or even having your baby be able to eat
It really is the little things that we take for granted that mean the most.

A couple nights ago I was at the hospital late. It was a rough night for me because leaving your baby every night is hard. It's not natural. It happens to me often that when I get to my car I can't leave and I just sit in my car and sob until I can finally get myself together enough to drive home. But some nights are worse than others and some nights I sob the whole way home. Then when I get home I call the hospital all through the night to check on him because I am unable to walk into the other room to make sure he is doing ok.



A lot has happened since my last post. Madden had a broncoscopy done to see if his airways were damaged from having the breathing tube in for so long. So far so good. They did find a lot of old blood but think it might be from an old stomach bleed. They also cleaned out all the secretions he had while they were in there.

Madden also had a new pd catheter put in. It's about a 5 inch tube inserted from one side of his stomach cavity to the other. I am sure it is pretty painful.

Both the surgeons doing these surgeries were worried because Madden is so swollen. He is swollen on the outside and just as swollen on the inside. I am sure he is in a lot of pain. You can tell when he is in pain sometimes cause he will slam his little hand into the bed. Though he doesn't move too much because his skin is so tight with fluid.

Madden is also barely peeing. He went for a good 4 days at least without any pee. Just the other day he started peeing a few cc's a day again. At least its a start. Madden's feeds are now at 5 mls per hour of breast milk- not too bad, of course this goes through a feeding tube.

A few new meds have been started:
Amniodorone to help with the heart arrhythmia's that Madden was having. Five different kinds of them - PAC'S, PVC'S, Bijimenys, SVT's and PVSB'S. I think that is plenty. Though over the past 24 hours Madden has not had any arrhythmia's. Yay.

Esmolol to help slow down Madden's heart and help it relax. His heart is very thick and needs time to properly fill before it squeezes. We are hoping this will improve his cardiac output as well as give his heart time to heal and get less thick. They are allowing his heart rate to be as low as 90...this is a little uncomfortable for me but they say as long as his blood pressure stays stable (which it has) they are happy. Drs are a little worried that the thick heart is another condition Madden may have. I believe that it is thick from all the extra work it has been doing and that it will go back to "normal" once it has time to do so. Everyone is hoping that this is the case.

Madden also now has some skin breakdown in his sternal incision. It is honestly a hole that allows you to see right into his body...not like a scratch with skin beneath it. So strange to see and not great for infection prevention. The surgeon that came to see it today thinks it will heal on its own eventually.


Have asked a few different doctors a few different questions lately and here are a few answers:
The only thing I know for sure is that Madden is so strong. He is so strong. Look at everything he has been through and he just keeps going.
And...
In my opinion you will be here for at least another 2 - 3 months. Yuck....my goal is still to have my family all together at home for Christmas. I think it is doable and would be the best Christmas present ever.

Madden has been getting platelets and blood everyday. They think he has something wrong with his platelets...a condition that makes him bleed and clot and is hard to control. They don't know this for sure yet but his platelets are different - bigger and have granules in them and he doesn't produce as many. This could be his age and the stress he has been through. Nobody is sure.

Madden I can't wait to have you home where you belong. Keep fighting little prince. You will get through all of this. I love you as big as the sky. xox

Wednesday 22 August 2012

Heart arrhythmia's

I think I could start every post I write with the words "what a day". It just feels like every day is too much. Today was no different. What a day.

Rocky and I both went to the hospital during the day today because things haven't been great lately. As soon as I got in the room I noticed that Madden was having heart arrhythmia's again. I pointed it out to the nurse and apparently they had just started. The nurse called one of the doctors to have a look at the rhythm on the monitor. Apparently he was having PVC's again - which is premature ventricular contractions, basically an extra beat. This can happen when your potassium and/or magnesium are too high. His levels were high but were coming actually coming down to the normal range so a bit odd that they would just be starting. He is also on a new blood pressure medication - dopamine - and I guess this can cause arrhythmia's. So this medication was stopped and Madden was restarted on norepi. This is when Madden started to have SVT's. These are the ones I hate. They make your heart race - Madden's heart starts beating about 250 beats per minute. If he doens't come out of it on his own they have to shock his heart. So far today he has been able to self convert out of them. His heart rate is bouncing all over the place today though from 140 to 177 back to 135 up to 188. I hate it.

Also I guess late last night they were concerned with the delivery of the meds through the pic line because Madden was miserable and he was on a high dose of sedation and his blood pressure was all over the place even though he was on a high dose of blood pressure meds. They decided to switch the meds into his new arterial line and things started to get better. So today they did an xray at the same time as they infused dye into his pic line to see what was going on. Apparently anything that goes into that line hits a clot in the vein and comes out a hole in his neck (this hole is from a previous line). So today they removed the pic line. The poor kid has more lines and tubes in him then you can imagine and wasn't getting his pain medication. The one thing I have continued to say is "please don't let him feel as bad as he looks"...but he did. Poor kid.

Today both Rocky and I had to sign procedure consent forms. They want to do another two surgeries on Madden in the next week. Neither heart related. The first one is a broncoscopy. They would put a camera down his nose into airways to see if his airways are floppy or damaged from having the breathing tube down there for so long. They would also look for scar tissue or a build up of anything that they could potentially remove.

The second surgery they want to do is placing a premanent pd cathdar for dialysis. They don't actually think it will be permanent but it would be in for at least a few weeks and the one he has in now is not functioning all that well and leaks out all the time. Not super effective. This would mean another surgery when they are ready to remove the pd cath as well.

From a heart perspective they are thinking of potentially doing another cardiac cath to see if his outflow tracts are narrowed at all. If they are then they would balloon them to open them up a little. Another surgery.

He also isn't peeing now at all.

It's just never ending.

Positives...he is doing well keeping his blood pressure stable with less bp support. He is draining well with  the pd. They were able to bring down his ventilator settings a little. He is as cute as ever.

They are now starting a medication that they are hoping will help with the arrhythmis'a through the night. I hope so too.

Madden I know this is hard but I promise you there is so much more to life than this...we just have to get through this. I promise to be with you every step of the way. I know you can do this. I love you as big as the sky small prince. xox.

Monday 20 August 2012

Speaking too soon

I knew I shouldn't have said anything about the corner...I couldn't help it, I was just so happy. Yesterday was just such a good day.

It looks as though Madden has decided it is not yet time to turn the corner.

Today was an incredibly frustrating day. Madden has not been able to settle all day and is extremely irritable. He has been dropping his blood pressure and also de-saturating into the 50s. His heart rate has also been high all day and he has been having heart arrhythmia's. They switched him over to a new sedation thinking this is potentially pain related. He has been paralyzed twice since this afternoon to try and get his ventilation back on track. A couple times they have gotten big mucus plugs out that seem to be blocking the tube and then things seem to slowly go back to normal. However it is continuously happening. Something is going on and the doctors need to figure out what it is.

Its been a very long day.

Madden please please please work hard to get better. I want you home. I love you as big as the sky. xox.

Sunday 19 August 2012

Corner?

 I know I shouldn't say it, I probably shouldn't even think it....BUT I think Madden might be TURNING THE CORNER! Or at least he is getting closer to the corner. Every time I say this or even think it something happens and Madden takes a few steps back....but I am going to say it anyways. Madden had a very good day! One of the fellow's even went as far as to tell me that she thinks he is turning the corner...I so hope he is. I know we still have a long way to go...but today was such a good day.

On Friday night we went as a family to Red Deer to support Kaelin and his soccer team during their provincials. Soccer wise the trip wasn't very successful but I think this trip was important for us to go on as a family for our other two kids who have been feeling a little neglected the last few months. We had family and friends go to the hospital and spend time with Madden in our place this weekend so he wasn't alone. Which really made it much easier for us to be able to take the time off. We got back in the city around noon today and we all went as a family to visit Madden.
(We also continuously called he hospital so we knew Madden was doing well enough for us to be away...not to mention received texts from everyone who was visiting as well as texts from one of the other moms in the unit...thank God for the amazing people we have in our lives).




When we got to the hospital today Madden was doing very well. In fact shortly after we got their the nurse turned off his blood pressure medication completely and he was able to keep his pressures very stable! This is a big win for us. Madden's heart rate has also come down to the 120's - 130's. His LA line which measurs the pressure in his left ventricle was sitting around 12 for most of the day, another big win. When we saw the surgeon on Friday he told Rocky and I that anything under 15 for that line was great for Madden. They took Madden catheder out on Saturday night..well actually it fell out but they decided to leave it out since he really isn't peeing anyways. I am glad it is out because I think it is just another potential source for infection and also painful but I am not happy that Madden isn't peeing. This is something that needs to start happening soon. Tomorrow they are planning on starting feeds again through the feeding tube, just 1 ml per hour to start but at least it's a start.

I am so incredibly proud of Madden and how hard he is working to get home. I am proud to be his mother. He is an amazing little boy who has taught me so much. During our time together at the hospital we read a lot of books. I hope it is something that Madden and I will continue to do forever. It's something natural. Something we can do anywhere. It makes my heart happy and I hope it makes his heart happy to.

Madden you are my little super hero. I am more and more amazed by you and your fight every single day. I can't wait until the day I can pick you up and cuddle you. So many hugs and kisses are waiting for you. I love you as big as the sky little prince. xox


Thursday 16 August 2012

All babies do is eat, sleep and poop...

All babies do is eat, sleep and poop...this is so not true. Babies are amazing little beings. While you are snuggling them they are busy learning how to regulate their temperature, regulate their heart rate, find their voices, digest food, make platelets and blood cells and so so so much more. Be so proud of your baby. (S)He is doing incredible things right before your eyes. On top of all of this my baby is also trying to heal his little heart and adjust to how his heart now functions. He is truly amazing.


In the world of Pediatric Intensive Care babies misbehave by dropping their sats, dropping their blood pressure, having a high heart rate etc. Today Madden was very misbehaved...again. It's hard to believe because he looks so sweet and innocent...but he likes to keep everyone on their toes. This morning Madden needed lots of fluid to be able to keep his blood pressure up. I really don't understand why we are having continual blood pressure issues, but we are. Then again this afternoon Madden needed more fluid. His pressures are all over the place - super high then way too low, then back to normal. It just doesn't make sense to me. Then on top of the pressures Madden started to desat into the 70s and couldn't come up regardless of how much oxygen he was being given. At the same time the wave form on his left ventricle line changed. Madden was not a happy baby and had 3 doses of extra sedation before finally settling out. During all of this a chest xray and an echo were ordered. The chest xray showed that the breathing tube was sitting a little low. They pulled it out a bit and increased his settings on the ventilator and he settled out. The echo was done but it was hard to get good pictures of his heart because of the adema and all the dressings he has on his body. They were checking his valves to see if they had started leaking. The cardiologist said he was unable to tell but there was for sure not massive leaking.

Around 5pm his primary, Dr Aditia came in the room to see what had been going on all day. He looked at the wave form of his LA with the meds that were running through the line turned off and said he thought the wave form looked ok. Then told us he was going to go look at the results from the echo that was done. He looked at the results and came back to talk, I told him he should just do his own echo because the other cardiologist couldn't see much...and guess what, he did! This is why he is my favorite person. He truly cares about Madden. He saw that his valve was not leaking at all, 0%. WHich is huge for Madden. Great news. His pulmonary valve is leaking a little but that's ok, they say everyone's leaks a little. His heart is functioning really well - beating properly, squeezing well etc. However it isn't yet doing it's job great yet...not profusing well, not able to regulate temperature, not able to stabilise pressures etc. The other problem is that Madden's heart is still very thick. Once his heart muscle is able to relax a little this should change. I think his heart just needs time to heal and then start working well.

The other thing we learnt today is that Madden's platelets are not normal. They are bigger than they should be and they have some granules in them that should not be there. What this means we do not yet know. Only one other family has ever been reported to have this same problem. Rocky and I both have to get some blood work done to see if we also have it. If we do then the testing that needs to be done can be done on one of us instead. I am hoping this is something that is happening because he is so sick but that it will get better with time. He doesn't need any more problems.


Keep fighting little prince, I love you as big as the sky.


Wednesday 15 August 2012

I am learning

In the last few days Madden has made a few steps in the right direction. As of tonight one of his blood pressure medications is off, yay! There is the possibility that is goes back on...but for now a step forward. He has also had 3 of his 5 chest tubes removed, these are drains for all the fluid he is retaining. He is also opening both eyes again and is way less puffy. He is smiling a little, making eye contact again and is looking a little more like himself - he isnt the same shade of purple he once was. Madden also had a head ultrasound done today that was normal. Great news.


We have also had a few mis-steps in the last few days: Madden started throwing up and had blood in the vomit. He also had some blood in his stool. He had an episode the other day where he dropped his pressured really low and at the same time his heart rate dropped into the 90s. They had to turn his pacemaker back on briefly but that is now back off again (all kids that come back from open heart surgery are wired to an external pacemaker that drs can adjust). Nobody is quite sure what happened to cause this episode and we are choosing to just be happy it is behind us.

One of the doctors had a conversation with Rocky today and was very happy with where Madden is currently because of the progress he has made. He also mentioned that a few days ago he was very worried about him and that he wasn't sure he would be here now. A few people have said that. The direction of this journey is in Madden's hands. At first that scared me. I didn't feel like he was big enough to have his life in his own little hands. But now I am comforted by the fact that he is fighting to be. This is what he wants and if it is truly up to him, this is what he will get.



I know a lot of people are feeling very sorry for us because we are going through something that no family should have to go through. I am also feeling a little jealous of families that have their baby and get to bring them home. I haven't yet picked up my own baby. I have only held him a number of times and each time nurses have to help move him into my arms because of all the lines. I am not complaining because holding him is a gift but I want the challenging part of holding him to disappear.

This experience, though extremely difficult has taught me so much. I beleive it has made me a stronger person. I am learning to appreciate the little things in life and am reminded daily what really matters. I have been shown love, compassion, friendship and sympathy by people I have never met before. I have learnt how strong my son is and know that he wants to be here. He is fighting to be a part of my family. He is fighting to be in my arsm....do you know how special that makes me feel. I am lucky. I have been given a gift, a very special gift. I have been blessed. I believe I will live my life differently, I will live my life better.

Madden you are a miracle. You are perfect. I love you as big as the sky. xo





Monday 13 August 2012

Blood Pressure vs Fluid vs Sedation

I have decided that the pity party is over. This is not a fight we asked for but it is also not a fight we will ever stop fighting. Madden has shown us time and time again that he wants to be here, he wants this life and he will have it.

The last 24 hours have probably been the worse 24 hours in my life. There were points in this last 24 hours where I felt we might be near losing this fight. But Madden is not giving up. He is working so hard to get better, he is trying so so hard. I will never give up on him. I will stand beside him every step of the way.

On Saturday night Madden crashed. His blood pressure went down to 39,  his sats dropped and the pressures in his left and right atrium were in the 30s (they should be closer to 10 on a heart that has just had surgery, 3 - 4 is normal). He was all over the place. They increased all his support, did xrays and echos to see if anything had changed in his heart and were getting ready to open his chest back up to get some compression off of his heart. From about 7pm to midnight we had an average of 5 doctors nurses and surgeons in our room. He had 5 echos done by cardiologists through the course of the night. They thought they were going to have to open him up and try to find the problem to fix it since nothing else was working. They brought the crash cart to his room (defibulator included) and also brought all the surgical equipment incase his chest was going to have to be opened in am emergent situation. One of the surgeons came up and tried to manipulate his PD cathedar (which does dialysis) to see if they could get some fluid off. They managed to get it working when a huge clot came out of it. This was huge because when the fluid started to come off his numbers started to improve. Madden just has so much fluid in him that it is putting pressure on all his organs and all his veins etc. Making it very hard to circulate blood through his body. The fluid was trying to find anyway out of his body so started leaking out all his incisions on his belly and out his eyes and nose. The fluid is mixed with blood so this coming from his swollen shut and bruised eyes was very hard to see. One of the drs spent the entire night sitting at his bedside with us waiting to see what he was going to do next. Thank God for her. Finally around 5am Madden started to settle out. This night was by far the worst night of being in PICU. Nurses from the unit were coming up to me and just hugging me, comforting yet very uncomforting at the same time.


Madden has been struggling with keeping his blood pressure up so he is still on quite a bit of support. The problem is that he is very sensitive to the sedation that they are giving him and he drops his pressures with most sedatives which makes it very difficult to ween his support. When his pressures are low they give him fluid to help get them back up. Which in turn makes him more puffy and puts more pressure on his organs.

One of the cardiologists told me that he is behaving like kids from "back in the day after surgery" and that they were always very sick for about 3 weeks after surgery and lots of them didn't make it. He told me our job is to buy him time until his heart can heal and "remodel" itself which it what it needs to do now. Madden's heart is very thick and the left ventricle is very small. His heart is now functioning like a normal heart which Madden's heart and body are not used to. It is going to take time for his body to adjust and for his heart to remodel. There is also the uncertainty that Madden's heart will ever be able to function like a normal heart because his heart is very complex. The doctors in his unit have never seen his anatomy before. His little special heart is very different.

Rocky asked one of the doctors and one of the nurses how it is possible that the numbers from Madden's blood gases are still so good when so much else is going wrong. The answer - Madden is fighting, he is a fighter and he wants to be here. I am so proud of him. Every day I tell him over and over that I am so proud of him. That things are going to get better. That there is so much more to the world than this and I am going to show him it all. I tell him how much we all want him here and that there is so much love waiting for him outside the hospital walls. I ask him to keep fighting because I need him in my life. He is my baby.

There is a lot of worry and concern on the faces of the medical staff. I know they aren't sure how this is going to end. But I am sure. I know that  my baby will come home. This is where he belongs. This is where he wants to be.

Madden - I love you bigger than the sky. You are the strongest person I have ever met. You are a little star. You are my hero. xox

Friday 10 August 2012

Post OP sucks

Warning: the pictures included in this blog have not been censored, these are for our memories and so they have been included.

I don't want to complain because I know there are people in worse places than we are right now...but there are also lots of people in better places and I can't help but want to be in their shoes right now. Bottom line - Madden has been through a very invasive open heart surgery only 7 weeks after his first open heart surgery and he is struggling. He was not "big enough, old enough, healthy enough or strong enough" for this surgery but we didn't have a choice, he needed this surgery and so it was done.

He is having a hard time with ventilation right now and isn't able to clear his C02. He is also struggling to keep his blood pressures up and is having an ongoing battle with fluid. In the hospital world fluid balance means everything. He is currently +300 and he looks it. He is so swollen that he is actually bruised all over his body. His hands and feet are so purple and so frozen that if it gets any worse he could lose them - this is happening because he isn't profusing well All these things can add up to potential big problems and places we don't want to go. We know that Madden is going to heal slowly as he started the race from behind but I am ready to get my baby back. He doesn't even look like himself. It is so hard to look at him because it just looks so painful. Never in my life did I think I would have to see my baby go through so much pain. The road to getting better feels like we are torturing him. I want Madden to know there is more to life than this. That kisses and cuddles are waiting for him in his near future. I want him to feel like the most loved little boy on the planet. I want to pick him up out of bed and take him home. I want so much more for him than this.




I want to be positive, but today I just don't feel like it. Today I feel like screaming and crying. This just isn't fair. He doesn't deserve this, he deserves so much more.

Madden you are the strongest little fighter I know. You can and will get through this. There is so much more to life than this. I promise you the world is an amazing place and I can't wait to show it to you. I love you as big as the sky sweet boy. xox.

Thursday 9 August 2012

Surgery #2

The last two days have been two of the longest days of my life. Yesterday Madden went for his second open heart surgery at 7am. Rocky and I got to the hospital a little after 5 am so we could spend some time with our baby before he went to the O.R. Madden was awake and looking around when we got to his room. It was so nice to see his eyes and be able to talk to him before they took him down. We spent a few precious hours with him giving him as many kisses as possible and giving him pep talks about how stong he is and how proud of him we are and how this is the start of his recovery. I keep telling him "only a few more days like this and then things are going to start getting better". Please God, let that be the truth. He deserves a life outside of the hospital. He has earned it.

At 7am the O.R team came up to get Madden to take him down for his second open heart surgery. We were able to wak down with him to "the doors" and then kiss him goodbye. Here a few more promises were made to Madden and a few more "you can do this", "be strong" talks. After they took him away Rocky and I both stood there in each others arms and cried. Letting them take your baby might just be the hardest part.

For the next 6 hours we sat and waited for news on how the surgery went. This 6 hours feels like a lifetime. About 1/2 way through we got some news that the two large holes in the center of Madden's heart had been closed and they were moving on to fixing the valves and the ascending aorta. So far things were going well. A big sigh of relief. Around 12:30 the surgeon, Dr Rebekah came up and talked to us. He was happy with the way the surgery went and Madden was doing very well. A HUGE SIGH OF RELIEF. He also let us know that he closed Madden's chest cause he felt that the heart wouldn't be too compressed but would not hesitiate to go back in and open it up again if need be. Then told us that they were going to have to watch for bleeding as he had been on heparin prior to the surgery and also that because Madden's heart is thick from being overworked they were going to have to watch to see if the heart is going to be able to relax. Overall things went very well in during the surgery. A big win for Madden.


From the time Madden got back to his room he struggled to keep his blood pressure up. He was given lots of fluid and was on high medical support to help with this. He was also given quite a bit of blood to get his hemoglobin up and help with the fluid problems. I had a very hard time being in the room because of some of the complications he had after his last surgery so I spent most of the day and night coming in and out of the room or sitting outside the PICU doors texting Rocky to see how Madden was doing. Overnight and through the day today they were able to ween some of the blood pressure medication and get that to a better place. They had to give so much fluid yesterday and through the night that Madden is very swollen. This morning he started to bruise up really badly and now he is almost all black and blue. It is incredibly sad to look at. I just hope he doesn't feel inside how he looks on the outside.

They did an echo today to check the function of Madden's heart. They know his heart is thick and stiff (which could be a problem if it doesn't relax) but there are no obstructions and his valve is working very well right now. Vey good news!

As of right now Madden is on echmo alert. Which means if Madden needs it, they have everything ready to put him on a bypass machine. This is not something I want to have to happen and therefore until he is off echmo alert I won't feel like Madden is in a good place. Right now he is making small steps forward with the weening of the meds etc. However he is still in a very fragile place. If anything goes wrong, he will end up on the echmo machine. We need to keep making baby steps forward. To be honest I think the doctors were surprised that Madden came back from surgery not on the bypass machine so that is a big win for Madden.

Madden continues to prove he is a little fighter every minute of every day. I am so proud of him for everything he has fought through. He is my little warrior and I know he will fight until he gets home.
Madden I love you as big as the sky. xox

Monday 6 August 2012

So what do you think?

Yesterday was a VERY good day for Madden. No temperatures, no blood pressure issues, no heart racing problems. He was very stable all day and it made my heart happy.


Rounds didn't end up getting to our room until around noon. Usually they do the most critically ill kids first so this is a good thing. When the group comes in (there are about 8 people on rounds in the mornings, RT, intensivist, charge nurse, dietitian, fellows and residents)  the nurse will go over the information on  Madden and what his vitals are, what meds he is on etc. Basically go through everything and then one of the residents has the opportunity to tell the doctor what they think the plan for the day should be, then the Dr makes all final decisions. Well this particular morning after the nurse was done speaking Dr Aditia looked at me and said "what do you think?" So I told him. He made the few changes that I suggested and left everything else alone.

When they were leaving the room the resident said "I like it when you are here, then I don't have to do anything." To which the Dr responds laughing "it doesn't matter if you like it or not she isn't going anywhere and she isn't going to stop telling us her opinion". The truth is rounds at our bed are usually quite long because I ALWAYS tell them what I think and I ask questions about everything they are going to do. I have learnt a lot and I think I do know what Madden needs most of the time.

Then today at change over time the two intensivists were at the door and the one was giving the other the details on Madden. When they came to the door the doctor said "This is Carly DeLuca, she is the best resource you have for Madden. She knows when he needs fluid, knows when he needs a transfusion etc." I laughed and said "I just share my opinions" and he replied "and she is usually right". It makes me happy that I am able to advocate for Madden and that I know him well enough (medically) to see what it is that he needs.

Today we also weighed Madden. This usually happens on Monday, Wednesday and Friday. I think both the nurse and I thought that it was Monday so we weighed him. HE WEIGHED IN AT 3.63!!! Now I know he still has fluid on board and that he has lines and a breathing tube attached to him but some of that has to be actual weight because when he was weighed in at 3.2 he also had fluid on, lines in and a breathing tube. So even if he is almost 9 weeks old and not back at birth weight yet he is definitely on his way :)

Madden we love you as big as the sky. xox

Sunday 5 August 2012

2 months old ♥

Saturday August 4th:
Happy 2 month Birthday Madden!
For the most part Madden had a very good day. He was settled, happy and alert. At about 4pm the RT's came in to do a tape change on his breathing tube this took a good 40 minutes and left us with one very upset baby. I got to the hospital around 5:30pm and Madden was STILL crying. The nurse had given him adivan, chlorol, morphine, tylenol and kedemene. I tried to settle him by talking to him but he was way too far past that point. His heart rate was high and his blood pressure was low. He was desat'ing and was very very uncomfortable. The nurse took his temperature  - 40.4. Not good. So cultures were taken from everywhere and sent to the lab. The doctors were also called into the room to see what was going on. By this time it is 7pm and he is still crying. Madden now has no blankets on and has cool cloths on his body and head to try to get his temp down.

Dr Aditia looks at me and says - what usually helps him when he is like this? Fluid. For some reason he needs the fluid. So Dr. Aditia gave him two doses of fluid. This does help to birng down his heartrate and bring up his pressures a bit. Then he asks me if we should transfuse him. His hemoglobin is only sitting arounf 97 and he does seem to be "happier" when he is at least in the 1teens. So I say yes and the nurse orders blood. He also wants to give him fentinol...which I am not really keen on but he says "we need to break the cycle and get him to relax" so more sedation is given.

Eventually the blood, fluid and sedation all kick in and Madden's numbers start to all settle out around 9:30pm. However this is WAY too long for him to have worked this hard. Dr Aditia sat down with me again to talk as I cried. I just don't get how such small things can make him so upset for so long. It's not normal. Normal babies don't do this. He reminds me that "normal" babies also don't have two huge holes in their heart. Because of Madden's anatomy his heart has to work 3x as hard as ours to do the job he needs it to do. When he gets agitated and his heart rate goes up it works so hard and expends so much energy that he can't recover on his own. He explaned it much better and in much more detail. We decided that Madden will get sedation prior to doing anything to Madden that has the potential to really make him angry. It's hard to accept that he needs this but it saves his body from the potential of much more sedation and over working his heart. The lesser of two evils I guess. It just makes me even more impatient for surgery day.

Madden we love you as big as the sky. xox 

Happy Birthday Biggest Brother

Friday August 3rd:
This morning Kaelin came to visit his baby brother at the hospital so Madden could wish him a Happy 11th Birthday!


Madden's xray this morning was better than yesterday but still not great. He still looks pretty puffy though so needs to get some fluid off.
I know that Madden likely won't be getting surgery tomorrow because he has had a rough few days and the surgeon would like to postpone it but I hadn't been told for sure yet. I the early afternoon Dr Rebekah popped into the room and told me that they weren't going to do the surgery tomorrow because he does not feel Madden is stable enough for the bypass machine. He is planning on booking him in on Wednesday also said that if need be he could move things around on Tuesday to get him in. The plan is to go in and fix the two holes in the center of Madden's heart - one between the upper chambers and one between the lower chambers. He will also do something to one of his valves to remove some obstruction. He told me that he believes this surgery is Madden't best chance, really his only chance and he thinks this will work even though his left ventricle seems quite small.
Later on Dr. Aditia came in and sat down with me to talk. He explained to me that all the cardiologists and surgeons on cardiac rounds in the morning agreed that Madden's anatomy would not support a single ventricle heart. They beleive that the two ventricle operation is his only chance. They also think it's his best chance at good long term outcomes. He also told me that the reality is that if this operation is unsucessful his only option will be a heart transplant. A newborn heart is usually at least a few months wait and we might not have that much time. The situation really sucks and I can't even bring myself to write down any of the fears I have. It's not worth it because none of them are going to come true. Madden little heart is going to thank us after this surgery for helping it function and Madden is going to start to heal. I can't wait. Hang in there baby, only a few more days.

We love you as big as the sky Madden. xox

Thursday 2 August 2012

Isolated

Last night as Rocky was driving home from the hospital they called. Rocky had been there all day and the day had gone pretty well. After he left they got a positive culture report. Apparently Madden's cultures from the breathing tube had grown some kind of bacteria that in incredibly contageous. So late last night they moved Madden into an isolation room. Now to go in and see him everyone needs to gown up and wear gloves and a mask. It can be treated with a common antibiotic and clinically he doesn't look worse so they aren't overly concerned. However, the concern I have is the potential that this may push back Madden's surgery date. Initially I didn't want the surgery day to come...however now that I have accepted it is going to happen I just want to get it done and get past it. The echo ended up being postponed until today because Dr. Smallhorn (the most experienced dr in the world at reading 3D echos and looking at valves in the heart) was tied up.

So this morning between 9 - 11 about 5 cardiologists met in Madden's isolation room for the echo. For this echo Madden had to be sedated and paralyzed. When they were done Dr. Smallhorn said they would go reconstruct the images and then let us know the results later in the day. We never ended up getting the actual results today but were told that preliminary looks showed that their didnt seem to be a reason that the valve should stop the repair from being done. Good news.

We were also told today that his xray looks very wet today. Over the last 24 hours Madden's fluid balance was positive 250. Which is way too much for Madden. He is so puffy he can barely open his eyes. It is awful to see. They think the reason his xray is so wet is because he is so positive and not because he has an infection in his lungs. They increased his lasix today to try to get him more negative. Hopefully tomorrow his xray looks a little bit better and Madden isn't quite as puffy.

Dr Rebeyka (the cardiac surgeon) poked his head in the door and told us that he has sat down with the person who had done the MRI and went over the report. He said that the left ventricle looks much bigger than the numbers show so the MRI people are going to recompute the numbers to see how big that LV actually is. He thinks it will be big enough to do its job. More good news.

The infectious disease people came by the look at Madden and see about the positive culture. They feel that this bacteria has just collinized in the breathing tube and that he is not actually infected. They are going to start him on a antibiotic to kill the bug anyways because they know how important it is that he get to surgery soon.

Three of the intensivists in the unit told us that they don't think the positive bacteria culture or the wet lungs are reason enough to delay surgery. However the final decision is up to the surgeon. I am just hoping the surgery is done before Tuesday so that Dr Cave (one of Madden's primary doctors) will be with him in the OR. We should know more tomorrow.

Madden we love you as big as the sky. Sleep tight my little bug. xox.

It seems the time has come...

Some days when I sit down to write these posts I don't even know where to start. Today is one of those days. So much has happened in the last couple of days and I am still trying to wrap my head around the direction we are going. The last few days have been a little overwhelming for me and so this post will be another catch up post.

Monday - Madden is 8 weeks old! Happy birthday little prince!
This day already seems to far away for me to remember what happened. All I can really remember is that Madden spiked a fever and cultures from everywhere were sent again. He was given a number of PRN's of morphine and adivan for discomfort and agitation. Blood pressure continued to be a problem. I took the evening shift cause Rocky had been away over the weekend. When I saw Madden I cried, every time I looked at him I cried. He wasn't looking like himself anymore. He was so puffy and looked so uncomfortable. I didn't end up staying as long as I had planned because all I could do was sit there and cry.

Yesterday was a whirlwind of a day I got to the bedside as the nurse was giving Madden fluid to treat his low pressures. This worked for about 5 minutes and then his pressures dropped again. So more fluid was given. They ended up having to give him fluid 4 times in about an hour to get his pressures up. As they were giving Madden fluid you could literally see his stomach and his face get puffier. He seemed to be getting the fluid and third spacing it instead of using it where his body needs it - his organs. Babies usually third space when they are very sick, it happens because their vessels become leaky. After the blood pressure was under control a stomach ultrasound and xray were ordered to see why Madden's belly is so distended - looking for infection or air etc. It just seems to be fluid. Madden is in a tough place because his organs - heart, brain, kidneys etc. - all need fluid because they are getting dehydrated but Madden is also very fluid overloaded and puffy because the fluid that is being given he isn't using. At the same time Madden was having blood pressure issues, he was also dropping his heart rate into the 70s and 80s. The nurse couldn't feel his pulses well and people started to gather around the bed. I had to leave. I called Rocky hyperventalating and told him he needed to get to the hospital. I went back into the room after about 15 minutes and Madden's heart rate was back up and he was doing a bit better. All in all it was a rough day for Madden.

Tuesdays are also the day where all the cardiologists and cardiac surgeons meet to discuss the "cases". Madden was a big topic of converstion at this meeting. The intensivists in the unit feel like Madden isn't moving forward and the time has come for an intervention. The problem is that Madden is still less than birth weight and is now eight plus weeks old. He isn't as old, as big or as healthy as they would like him to be for this surgery. Which makes the surgery high risk. However, they still think the time has come for Madden to get "some help" medically.

After the cardiac meeting the surgeon came and met with us and told us that he is planning on going in and repairing the  two holes that Madden has in the center of his heart. Which means they will be going the route of a two ventricle heart. He also told us that for this to happen he needed to get some more information on how big Madden's left ventricle really is. The MRI that he had done previoulsy showed that his LV measured 22...the norm is 40 - 60. However, he thinks that the ventricle is bigger its just being squished by the right ventricle. He wants to have another echo done tomorrow, a 3D and a 2D to get the pictures required to know if this is going to work. He also plans to do the surgery on Saturday or potentiall Friday if he can fit him in. Friday is Kaelin's 11th birthday.

We then sat down with Madden's two primary doctor's at different times. They both feel that Madden needs this surgery and this is the best chance that Madden has at a healthy life. The surgery is high risk because of how small he is and the fact that his anatomy is so different. There is a potential that his heart can not function like the rest of ours and this surgery will put him in a very bad place. Our primary who is a cardiologist believes that this is the right path for him and that the surgery should work. If it doesnt work he does not think Madden's anatomy would support a single ventricle heart so our only option would be a transplant. Our intensivist who is an anesthetiologist is actually on in Peds OR this weekend and will be with Madden through his surgery. He has become close with Rocky and truly wants the best for our baby. He looked at us during out meeting and said "you know I will treat Madden like he is my own boy and I will bring him back to you". To know that someone who truly cares about Madden will be with him through this next open heart surgery is a very comforting feeling in a very uncomfortable situation.

In my heart I beleive that this is what Madden needs. He has struggled so much along the way that they anticpate him to get very sick after the surgery. I know the first 48 hours after surgery will be rough but I believe that after those 48 hours are past, Madden is going to start on his path to becoming a happy and healthy little boy. We will get our baby home one day.
Madden you have proven yourself to be a little fighter. You will get through this and one day we will get to welcome you home! Keep being strong my sweet baby. We love you as big as the sky! xox