Monday, May 12, 2014

Post-Fontan Day 4

Well we didn't quite get the news we were hoping for this morning during rounds. His surgeon wanted his CVP (central venous pressure) set up again (it wasn't working over the night and the nurse had left it alone), and he also wanted to increase his Milrinone (heart med), so the central line most definitely would be staying in.

Dr. B also ordered an echo to check for fluid as his x-ray was hazy and indicated a strip of fluid in his lung that wasn't draining. This meant stripping the tubes, which is very painful. The nurse gave him some morphine and versed before stripping the tubes and she was able to get a good bit of fluid off.

His drainage seemed to slow throughout the day today, so I'm hopeful that his chest x-ray tonight will look clearer. His nurse thinks perhaps he'll be ready for the floor tomorrow, but I'm not holding my breath. Slow and steady is the name of the game around here.

The hardest part of today has been Chase's discomfort. He's off all sedation meds and the anesthesia from his surgery is all out of his system. He's only taking Tylenol for pain (and an occasional hit of morphine) and cannot have Oxycodone since he's still refusing to eat. Today he has been very sad and discouraged. He's more like himself, which means he really doesn't want to be here and has said so several times. He's fighting the food and fluids and today had also started fighting the sleep. He's so exhausted but is also miserable being stuck in the hospital, and it's just a tough situation all around. It really breaks my heart to see him like this -- so discouraged and not interested in anything. I brought LO up this afternoon and seeing her didn't even really lift his spirits. He received some mail that I brought up for him today as well, and he did smile a tiny bit but was still just mostly uninterested and sad. I've posted all of his cards on the wall by his bed so he can see them and be encouraged throughout the day. I just know he's gonna get there -- just maybe not as soon as I'd like.

We decided to give him some Ativan to help settle him down enough to rest. Hopefully it dies the job!

My prayer for him is that he'll get comfortable enough to get some solid sleep tonight, that his fluid will continue to decrease and his spirits will lift somehow. It hurts so much to see your child like this and be powerless to do anything to help. Please pray he turns a corner tonight!!!

We were told earlier that he'd have his awesome nurse from last night again tonight, but they just said she was pulled to the PICU and we'll have a "floater" who isn't an actual PCICU nurse, so that's a bit unsettling for us. Please pray she's on top of her game and helps us get Chase to have a restful night.

Post-Fontan Night 3

Sunday night has been quiet. Chase has been sleeping a good bit and this is wonderful for him! Just what we want! He's getting up to potty as needed, and with diuretics on board to help flush the fluid out, there has been a lot of both frequency and volume. Awesome!

He had a chest x-ray around 2AM and the preliminary reading is that it is much less hazy than last night, meaning he has dumped out a good bit of fluid, but there's still more in there to get rid of. As he continues to get more active and move around out of bed more, that fluid will be displaced and he'll be even more comfortable.

His nurse (who we loved MUCH more than last night's) drew some labs around 3AM so we'll see how those look and adjust as needed (his electrolytes have consistently been low and they've pushed more potassium and magnesium bicarbonate the past 3 days as needed).

I'm curious to hear what his surgeon has to say about everything when he rounds in a bit. He wasn't on call this weekend, so he should be impressed with the progress Chase has made in such a short time! While we'd love to hit the step-down floor on 8D today, Dr. B is known to be very conservative (a trait we especially appreciate in our son's heart surgeon!) and may decide to keep him in the ICU another day to monitor his chest tube output. I'll also be curious to see if he decides to remove his medial chest tube and central line or not!

Our biggest goal is to get Chase drinking and eating ASAP. This will help him lose the central line in his neck and also ease his (empty) tummy pains. He finally just took 2 bites of a Nutrigrain cereal bar and a good sip of apple juice around 5:45 AM, so hopefully he'll keep it up this morning. Or, I guess technically, hopefully he'll keep it down this morning... no more puking! That spell Saturday night really messed with him and has been keeping him from eating or drinking. Poor sweet baby!!

I'm not looking forward to them replacing his peripheral IV with a new one today, and I'm pretty sure he's not gonna be too thrilled, either. Please pray that they are able to get access easily and with as little discomfort to Chase as possible.

More updates soon after morning rounds! Thanks for the prayers and well-wishes for our Rock Star!

- Posted from my beloved iPhone

Post-Fontan Day 3

Sunday has been relatively quiet, just as I had expected. But we did make some excellent progress! We were able to get Chase out of bed today! He sat on my lap and let me hold him for hours! It was probably close to 5-6 hours sitting on my lap in the chair! What a wonderful Mother's Day gift for me! The only reason I had to put him back in his bed was so I could run to the bathroom and grab dinner!

In addition, we were able to get him out of bed to go potty since his Foley was removed earlier today. So far (as of 12:40 AM Monday), he's gotten up to potty 3 times! This is a major victory! The more we get him moving, the more built-up fluid is removed, the more comfy he'll be and the closer to home we'll all be!! Way to go, Chase!!!

Chase had a sponge bath tonight courtesy of his Mona! He did great and seemed happy to be cleaned up and wearing one of his gowns.

We were hoping to take out his central line from his neck, but he's just not taking in enough fluid to allow us to do so. They're still using that line to give him fluids and, until he starts drinking on his own, it'll have to stay in. I explained this to him earlier, and was able to get him to take 2 sips of apple juice, so I'm hopeful he'll continue to increase his intake.

We really need to get him to eat something, too. He keeps complaining his tummy hurts, but I think it's just empty since he hasn't eaten anything since Thursday night! Please pray we can get him to up his food and fluid intake. I think too that he's just worried he's gonna have a terrible vomit spell like last night. My poor pumpkin!

He's down to only Tylenol for pain management, which is amazing to me!!! He also started back on his aspirin tonight, with plans to get him back on his pre-surgery BP med soon as well. These were the only daily meds he was on before his Fontan.

My guess is that we'll be looking at a trip to the cardiac step-down unit later today (Monday). That'd be awesome!!! Oh, and his peripheral IV came out tonight, so we're looking at needing to have that one replaced in the morning before he can go to the floor.

He'll get w chest x-ray around 3AM again tonight and we're praying it's not hazy like last nights. His fluid volume continues to be within the normal range.

We expect to see his surgeon around 6:30 AM and are hopeful he may decide to pull one of his chest tubes and possibly his pacing wires. And of course also give us the go-ahead to move upstairs! Maybe.

Thank you!!!