'tbt'- 5.8.12- cath aftermath

29 May 2014

Waiting for this cath had actually become a joke between us and the doctors. Hayden had been scheduled for three that had fallen through, so we were sure something would happen that wouldn't allow this one to happen either. First it was surgical conference to decide if the one ordered was even needed, then it was fevers, the fevers lead to staph infection and two and a half weeks after his first scheduled cath, he was finally ready to go. Through our three week stay leading up, we were busy dealing with all sorts of desating that lead us back into the CICU and thinking his desating was either seizure related, feeds related or heart related. He had an EEG that confirmed the desating episodes were not seizures. Then he had an ND tube placed late last week (his tube usually goes to his stomach but the ND means it passes through ths stomach and goes deep into his intestines, feeding him continuously). This helped his desating a little, but not 100%. The cath seemed to be the thing that would give us all our answers, or so we hoped-or didn't hope. Thats the thing about being heart parents- you never know what to wish and hope for. Do we hope his heart gives us the answers? yes and no- yes because then maybe we can figure out how to help him but NO! we don't want his heart to have any more issues than it already does! I learned to stop hoping and praying for specific things to happen- and just start praying that they can find out whats wrong and fix it- whatever that may be. I have also learned to stop trying to calculate and figure out when we will be going home. I would pray every night to go home and cry myself to sleep every night to be with Jackson and my family to be whole again. I still ache for Jackson, but I've stopped praying to go home. I now pray that I can find a way to be comfortable being here. 
The morning of the cath was like any other morning of a procedure- no feeds after 4am and waiting for the call that they were ready for him. He was second case, and the doctors and nurses assumed he would go anywhere between 11 and 1. They called for him at 12:40, and he was taken away at 1:00. We got updates every 45 minutes to an hour and he was out of cath sometime after 4pm. We spoke to Dr Rome, his cath doctor, who explained what interventions they did. First they lightly ballooned his aortic arch and then they made a hole and put a stent between his left and right atriums. The pressure they were looking for was less than 12 in his left atrium. Anything over 12 would mean needing a ballooning and stent. Dr Rome said at lowest his pressures were 12, highest was 30. We were both pretty shocked by how high the pressures got and were glad they went ahead and did the cath in hopes this would help him breathe better and feed better. 
We were brought back to Hayden and I immediately knew something was off- love (and hate) that mothers intuition. He looked swollen slightly and he was very unhappy. He was trying hard to move around but because he was coming off sedation, couldn't. He was trying hard to cry but again, coming off sedation, he couldn't. It was so hard to watch him and not be able to pick him up and comfort him (after a cath procedure, there is a 4-6 hour 'flat' time where they cannot be held and must lie flat). As he was doing this, his oxygen started to go down. He was at around 80% when we first got back to see him but was soon drifting in the 60's. We gave him blow by oxygen that was working for a bit- he already had a nasal cannula on so they were bumping up his breathing support with that. He continued to become more uncomfortable and more unstable- with his oxygen dipping lower and lower. Little by little more and more people started coming into his room to offer help. His oxygen was in the 50's and wasn't coming up and it started getting pretty scary in here. I made eye contact with my dad and asked him to get Jackson out of here as I could just tell this wasn't going anywhere good anytime soon. His oxygen went even lower- into the 40's and the nurse was covering his airways with a mask to bring him up- and it wasn't working. By this time his room was full of about 15-20 people between nurses, doctors, respiratory, etc. I was bedside holding Hayden's hand trying to calm him and making eye contact with Rob who was across the room just in shock. His personal nurse kept making eye contact with me and I kept pleading with her to tell me what was which she would look back with the same terrified eyes I had and say 'I don't know what's happening'. Hayden's oxygen continued to dip lower and lower- every time I thought it couldn't get any lower, it would drop another 5. At one point he was at 23% and I thought 'oh god, is this going to be it?' Nothing seemed to be working and no one seemed to know why. As a heart mom, I am sadly learning through being here and witnessing death and also following several families who have experienced death that anything can happen with these babies. Things can go from bad to worse to tragic way too fast. The entire time he was dropping in oxygen, he was in hysterics and was screaming under that mask. It was all I could do not to rip that thing off his precious face- but knowing that was the only thing keeping his sats where they were and that without it, well...
I made a promise to Hayden a few weeks back that I would never allow him to cry as long as I could help it. IV's had been the enemy and after that horrible night when they poked him 5 times and he cried harder than I had ever heard, I promised him he would never cry that hard again. And until last night, I'd stayed true to my promise. Anyone that has met Hayden knows he doesn't want for anything- he is held, kissed and loved every single second of the day. Even when I am sleeping, he has a slew of fans here at the hospital that come and scoop him up in the late hours of the night, or early morning. Watching him in that state was unbearable...and I do believe had I been able to pick him up yesterday in the midst of his episode, he would have calmed, even just a little bit. The only thing keeping me from completely loosing myself was one very important lady. The nurse that was giving him oxygen to breathe had become a personal friend over the last few weeks and I am still trying to find her today to squeeze her and thank her for saving both Hayden and myself in that horrific moment. The whole time she was holding oxygen to his face, she was making eye contact with me smiling and winking, saying 'it's going to be okay'. She is my hero and I can't wait to see her to tell her how amazing I think she is. Its people like her that make me believe God has angels on earth- and I thank God he sent her to us. 
Long cath story short, the cath procedure technically went as planned- it was the recovery that did not go well. Once they were able to sedate him and bring his oxygen up a bit, they decided to reintubate him and stabilize him completely before trying to figure out what was going on. They did an echo and we were happy to hear that another doctor-turned-friend had been reading the results from her home (thank you :)  The outcome was good- his heart seemed stable and he did not need to go back into the cath lab last night. They are still keeping heart function in their back pocket but for now, it seems to be good. All in all, they think what happened was our sensitive Hayden had a bad reaction to the anesthetics, some extra back up of mucus, possible lung pressure, learning his new heart- again, etc. 

Today's plan~ they just extubated him and I am waiting for the green light to hold him again! It's been a long 22 hours. Now we wait to see how he handles it and hopefully restart his continuous feeds. If he accepts those, then they will try to bring his tube back up into his stomach and see if he accepts those feeds without desating. If not, we figure out what type of tubing he needs to feed from home. Thank you for your continued love and support throughout this ongoing journey. 

tbt 4.22.12- hayden's heart goes to surgical conference

23 May 2014

We have been back at CHOP for over a week now and Hayden's infection seems to be pretty much cleared up. While we have been here, there has been talk about the pressure in Hayden's left atrium and he was even scheduled for a Cath procedure to possibly balloon a hole between the two atriums to lower the pressure in the left side. The doctors chose not to do the scheduled cath procedure and to wait until the weekly conference with about 60 doctors and surgeons and discuss Hayden's heart there to come up with a plan. So for now, we are waiting a few days for that conference and for a decision to be made. 
In the meantime, Hayden's oxygen levels have been dropping spiratically. Each time, we were able to get him back up with a little sniff of oxygen. The first time it happened was Thursday afternoon- this was the first time since he was born that I actually saw him turn a blueish- grey...just another scary sight I never thought I'd have to see as a parent. Late Friday night Hayden's oxygen saturations dipped extremely low again and the 'sniff' of oxygen wasn't helping at all. His lowest was around 50%- because of his heart, he usually sits between 75-85, and we are at 100%. They immediately put him back on a nasal cannula which gives him constant breathing support and called for blood to be taken and an x-ray. When all of that came back okay, the doctors came to the conclusion that he needed a blood transfusion. Which of course meant he needed an IV and the one he had was no longer working. Through this entire time I had remained calm and stable for both Hayden and myself but when the IV team poked him 5 different times, stability and strength were just not there. The first time was by far the hardest I ever heard him cry. After the second poke, the woman looked at me and mentioned maybe I shouldn't be in here- I love how they say that actually think a mother would leave their child at a time like that. After 3 more pokes, they finally got it in. But not before Hayden and I were traumatized by the entire ordeal. Almost immediately after the IV was in place, they began running the blood through. By mid morning the next day, Hayden's oxygen levels were back up and he was doing much better. I asked the doctor that morning if blood transfusions were going to become a pattern for Hayden since this is the third one he has gotten in 6 weeks of life. He said that it shouldn't become a pattern- what most likely caused this one was the amount of blood they had taken from him over the past week and he just needed a little boost. 
Back to the cath- I asked this same doctor what his take was on the cath and the reasons behind the confusion- basically what it comes down to is this: Hayden's surgeon Dr Spray wants the cath done to make sure the pressure isn't too high in the left side and to make sure he is still on track for stage two. His cath doctor doesn't want the procedure done because he is afraid the size hole he makes to measure the pressure will be too large and then the plan Dr SPray has for Hayden's heart will not be a possibility. This is the reason Hayden's case will be discussed on Tuesday mornings conference. Hopefully we will have some answers sometime in the afternoon!
Hayden's feeds continue to be on the top of our recovery list. As of this moment, he is 36 hours vomit-free!! We are now fortifying his breast milk with a special formula called nutramagin- and he is also on three different meds for reflux. As much as I hate having him on so many medications, I am learning to adapt to the advice everyone here is giving me- the most important thing right now is doing whatever it takes to get Hayden from point A to point B (point A being now, point B being stage 2). This is sometimes still hard for me- I hate that he has a tube and moreso that he needs that tube to survive. I want so badly for him to be a normal baby who eats all their food from a nipple. I constantly have to remind myself that Hayden needs more help- and hopefully all this is temporary. At any rate, we have been celebrating off and on all day for Hayden's feeding success- he is even feeding more from the bottle than he has in a long time too! 

Thank you as always for your support through all of this. Please say some prayers that the decision made is that Hayden's heart is stable enough to make it to stage 2 without a cath procedure and that Hayden and I can go home this week. I can feel myself starting to fade on this part of the journey and being home with Jackson is often all I can think about. Please also pray for Hayden that he continues to do well with his new feedings and starts to gain some weight! 

tbt ~ 4.14.12 'back to chop'

15 May 2014

Yesterday evening after getting Jackson to bed and Hayden asleep, I planned to update the blog and discuss his continued issues with feedings but that overall I was starting to feel better about being home and starting to adjust to my new normal. Unfortunately, I never got a chance to write that blog because last night after getting Jackson to bed, we immediately rushed Hayden to the Hackensack ER. He was showing labored breathing and extremely fussy. He also had a fever so with everything combined, we made our way there as quickly as we could. Riding in the back seat with a one-month old grunting with every breath he took was heart breaking...and I found myself holding my breath too. 
It's incredibly different walking into an ER with a toddler that has a bloody mouth or a high fever than with an infant with heart problems. And I guess as it should be. We were taken right away and his care began immediately. Within about an hour we were warned we would be transported either to his cardiologist in St Peters or back to CHOP. They didn't tell us much. It seemed Hayden's condition was pretty foreign to them and they didn't want to give false information. They basically prepared us for our transfer, which was ultimately back to CHOP at 3am. We arrived here by ambulance at 5:30 and were welcomed back by many familiar faces in the CICU. 
Within about an hour, Hayden had been assessed by the attendee, fellow and cardiac surgeon on-call. Luckily it was decided that although Hayden's incision seemed to be infected, it was not infected enough to warrant re-opening the incision to clean it out. Hayden had many tests run on him, blood work, cultures, etc. Some take 48 hours to get back and we are still waiting on those results. But for now he is being treated for an infection and receiving antibiotics. Once Hayden's tests come back, they may know more of where the source of the infection began. Either way, it sounds like this should be cured by antibiotics and keeping a close eye on his incision, breathing and overall behavior. Hayden's oxygen levels have also been dipping so he is currently on a nasal cannula but hopefully this is just a minor setback for today and he will be back to full room air by tomorrow. He also started getting his feeds again this afternoon and did start off by taking some by mouth but he is truly exhausted so we are giving him a little break with that. My hope is that while we are here his infection will be cleared and hopefully we can also get to the bottom of all his feeding issues. 

Thank you as always for your love and support. Hopefully this will be a short-term stay and Hayden and I can return back home to be a family together once again. 

3.12.12 - 8.16.12

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