Friday, February 26, 2010

Ugh

Just a warning that this is all a bunch of random happenings over the past 48 hours and my 1 hour of sleep obviously isn't cutting it so this post will probably not make a bunch of sense and may be out of order and weird. Consider yourself warned.

So sorry to leave everyone hanging out here without the latest and greatest (and not so great) info on Chase. Yesterday I was very anxious during his cath procedure and posted updates every hour when I got them from the cath lab. Once the procedure was complete, my time no longer was my own. He was put in the PICU (since there wasn't any room in the PCICU) to recover from his cath and slowly come off the ventilator, which he did. They put him on oxygen after extubating, which is typically standard protocol, but worried me. Chase had been intubated and extubated 3 times before and he never had to go on oxygen after extubation. His sats were still low, which was assumed to be because he was still coming off the anesthesia, so he definitely needed the o2 boost.

We were supposed to move to 7C, but apparently, even though a bed was scheduled and ready for us, somebody somewhere dropped the ball and gave our room away because we went to the PICU first, instead of directly to 7C. So as of 5pm Thursday, there was no room on 7C and I was told Chase would spend the night in the PICU (where parents can visit but there are no overnight accommodations). So I left the PICU Wednesday evening with the plan to come back to the hotel, eat a quick dinner with hubs and LO, then go back up to the hospital for a few hours before going back to the hotel to try to get some sleep. As you can imagine, I didn't get any sleep Wednesday night since I was worried about his cath procedure and it was an early morning, etc. I was tired.

In the PICU, my son was obviously uncomfortable. He wasn't sleeping well, and when he was awake, he was extremely fussy and irritable. I soon saw the doctors approaching with rounds and was looking forward to getting my questions and concerns addressed. Imagine my surprise when they stopped a few feet from his bed, said that this was a "heart baby" who should've been in Same Day, and moved on.

I'm sorry??

They appeared to finish with rounds and I basically made them come back to me. The non-heart "doctor" said that it's normal for Chase's sats to sit in the low 70s. I said excuse me, but NO, it wasn't. He was always in the high 80s before then, so no, this is NOT normal for him. I made them send a Pediatric Cardiology fellow up to see us from one of the heart units.

Dr. Savage, the peds cardio fellow, explained things to me very well. He said we did want his sats between 75-85 without the oxygen, so we'd plan to wean him off and see if he can handle it. He said this was normal for heart babies following cath procedures. He put my mind at ease with the detail he provided at the time, most of which I cannot easily recall right now.

So after dinner I went back to the PICU to see Chase. As soon as I walked in to the PICU (around 7pm), Chase's nurse told me they had found a bed on 7C! This is great news, but I was completely unprepared to spend the night at the hospital with Chase. Of course I was going to do it, no question. But again I felt totally unprepared and helpless.

Chase was doing okay, but wasn't quite alert or awake yet. His sats were jumping as low as 59 and high as 92! I should point out that there are NO pediatric cardiologists or fellows on staff in the PICU. They are not a "heart unit" and don't have much experience with heart babies. I had asked my nurse a few questions that she had no answer for. She just didn't know. It just didn't sit well with me that he's in for observation following a heart cath procedure, but that those observing him had no experience with heart babies.

It was close to 11:30pm before we got to 7C and settled into his new room. We had a pretty lousy night. Chase was uncomfortable, even with morphine and 2 doses of Tylenol. Plus some Lasix to help him lose the extra fluid he had been on. He would cry the most pitiful cry (still hoarse from being intubated) every time I put him down. He would settle down only when I would hold him. Unfortunately his oxygen tubing couldn't reach the couch, so I had to spend the night hunched over in an uncomfortable chair holding him. I couldn't sleep because I was trying to keep him calm and happy. I didn't get any sleep. When he did "sleep," it was VERY light and uncomfortable. He would eat okay (no surprise) but still just seemed unhappy. We weaned his oxygen down to 1.5L and his sats were high 70s, low 80s when he was asleep. As soon he would wake, he would flip out and his sats would plummet. Basically that's how he was since the cath procedure: decent sats when asleep, bad sats when awake and fussy.

After a long night, Chase went down to the 6th floor around 7:30 AM to have an echo to see how things looked. When we returned to our room, we were told he would be getting a chest x-ray shortly (a short 2 hours later!). He did great for both tests and I was anxious to hear the results. I paced the room while the doctors began rounds at the other end of the unit. I was desperate for test results, but also, I had our Jeep at the hospital, meaning hubs and LO were stranded at the hotel until I could come get them. LO really wanted to get back to the atrium to play today. She so needed to get out of the hotel. All of this is so unfair to her and I absolutely hate there was nothing I could do about it.

After what seemed like hours (since it was almost 2 hours!), the doctors made it to our room. They stood outside the door (closed) and discussed Chase for a good 10 minutes or so before the whole gang came in the room. The doctor this morning, we'll call him Dr. Jerk (that's not really his name!), basically gave me an earful that I was NOT prepared for. He basically covered the following items:
  • The cath procedure yesterday (ballooning his coarctation) apparently (according to Dr. Jerk) did NOTHING. His coarctation remained unchanged after this big, fat, stupid procedure! What?? Dr. Baker, the one who did the procedure, was very pleased with the SUCCESSFUL results of lowering his pressure from 10 to 0 and increasing his coarc from 4.3 to 6! How is it this guy is telling me none of this was true?! I told him what Dr. Baker told me and that Baker also said the echo results aren't as reliable as the cath lab results, but Jerk said I was comparing apples to oranges and basically said he was right and I (and Dr. Baker, therefore), were WRONG.
  • Chase has a narrowing or small area in his pulmonary artery. I remember Dr. Baker telling me he saw this in the cath lab yesterday, but wasn't going to do anything to address it at that time. Dr. Jerk said this complication will need to be addressed surgically by patching the pulmonary artery to make it bigger, apparently a procedure that would grow with Chase and should be a one-time fix. This really disappointed me because when Chase has his Glenn surgery, the pulmonary artery would need to be patched, making the surgery that much more invasive and complicated. I know Dr. Bradley's good and all, but I just didn't want things to be any harder than they already were.
  • To my surprise, Jerk also mentioned Chase's leaky tricuspid valve. WHAT?! This is the first I'd heard of him having a leaky valve!!? Dude just went on and said based on my reaction, he assumed I wasn't aware of the leaky valve. Um, NO! He said it may or may not be addressed during his Glenn, it would depend on what Dr. Bradley saw and whether or not the leak was mild, moderate or severe. I was holding back tears.
  • Oh, and he also said our goal will be to "keep Chase comfortable" over the weekend as we try to keep his sats up. I'm sorry, but isn't that the absolutely worst way to say something like that? "Keep him comfortable?!" Really?
He finally left and I let it go. I was heartbroken, stunned, devastated. Truly, I felt like this doctor just told me my son has absolutely no chance of survival. Literally. That's how it came across. I balled my eyes out like never before! My sweet nurse was able to comfort me by telling me that really, the pulmonary artery issue is not at all uncommon and that Dr. Bradley is very conservative with those repairs and uses plenty of patches to make sure it's big enough to handle Chase's circulation. She also said it's common with hypoplastic babies to have a leaky tricuspid valve (the one separating the right atrium and right ventricle) simply because the right side of the heart is working so very hard. She went on to say that after his Glenn, when the shunt is removed, they would've had to make some fixes to the pulmonary artery anyway and that after his circulation change with this surgery, his leaky valve may not get any worse or be a big problem. This next surgery basically takes a load off the right side of the heart by using the pressure in the blood to move to the lungs without the support of the heart forcing it to the lungs.

My goodness. I left Chase in great hands with the nurse and headed to the car. I was crying like I hadn't cried since we first got Chase's HLHS diagnosis on June 16, 2009. All I wanted to do was fall into my husband's arms and cry like a baby. I needed to tell him what I had learned. I needed to have his support. And there were literally about 10 cars in the parking garage in the lane to exit. I couldn't believe this one time I needed to get out of there quickly and a zillion cars were in my way.

I finally made it out of the garage and decided I had to call hubs on my way so I could tell him the news without letting LO see her mommy breaking down into a puddle of tears. So I called him, and did my best to sound somewhat coherent as I told him everything through tears. I was a basket-case. He met me outside our room at the hotel and I dropped my bags and landed in his arms. We're in this together. I finally had someone on my side after leaving that horrible doctor and his Debbie Downer information sharing technique.

Hubs was sweet to go to the hospital to be with Chase and track down Dr. Jerk as well as get opinions of some other cardiologists here at MUSC while I got to stay at the hotel and take a nap while LO napped. It was a blessed hour of pure sleep! Yay! Afterward, I packed up my overnight bags, got LO ready and we headed back to the hospital. I was so surprised and happy to see my sweet little boy sitting in his bouncy seat, looking SO MUCH MORE like himself -- finally! He even gave me a huge smile when I came over to say hello. Right now I'd say he's about 70% back to his "old self" and I'm very happy for that!

So about his next surgery... It's looking very possible that it will be next Wednesday or Thursday. Monday and Tuesday are already slammed surgery days for Dr. Bradley, so Wednesday could be the earliest Chase will see the OR again. I've heard that Dr. Bradley has looked over Chase's situation at a very high level, and I will tell you that Chase's aspirin has been discontinued (meaning there's a STRONG possibility he'll have his surgery next week and he can't be on a blood thinner like aspirin the week before for obvious reasons). My hope is we'll get more information on Monday and hopefully we'll have a chance to sit down with Dr. Bradley and let HIM explain Chase's current state and what he feels will be necessary with his next surgery.

At this very moment, hubs' mom is flying into Charleston to be here to help us with LO while we work through the specifics with Chase's upcoming surgery. Lots of our family and friends have offered to help us and we are so truly grateful for that. Hubs and I need to work out a plan to get all the stuff we need from home brought down here to Charleston for us. We're also working on getting into the same rental house we used during Chase's first surgery. We'll probably also work on some additional childcare arrangements so poor hubs' mom isn't "stuck" with our girl all by herself for too long.

My baby is crying for me. Gotta go. I'll try to keep y'all updated as best I can as quickly as I can. Thank you so much for your support and continued prayers. This next week will be a BIG one in our lives and we are praying for Chase's safety and speedy recovery from all that lies ahead for him.

A Difficult Summary

High level: cath balloon apparently didn't fix coarctation yesterday (according to Dr. Jerk), his pulmonary artery is also small/narrow & apparently he's had a leaky mitral valve (news to us). Not leaving until he can get into the OR for the Glenn & to fix all the additional complications. Please pray like never before!!!!


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