Saturday, January 15, 2011

Our First Adventure of 2011 I wrote this post once already and my computer totally ate it, so I'm going to give it my best shot one more time.

I don't know if any of you are interested in the day-to-day details of Charley's recent hospital stay, but I wanted to make sure that I covered it for our own memories. This is a pretty big part of our life to just leave out of a fairly detailed blog! I'm going to break it down day by all passed in such a blur, hopefully I remember what happened when.

Monday: Surgery day. BLAH. It started bright and early at 6 AM and we didn't get to see our precious little Bear until after 7 PM! During surgery, Dr. Hammel was able to remove some excess muscle from her right ventricle that had been preventing it from contracting properly and allowing blood to flow through. He also replaced her "abnormal" tricuspid valve and placed a pulmonary valve as well. Again, we spent the day hanging out in the hospital lobby with family (THANK YOU ALL SO VERY MUCH!) I was really antsy this time around and found myself pacing, staring at my phone and begging it to ring with an update on how things were going. After Dr. Hammel finally came out to talk to us, I just remember thinking...I don't care what they did in there, I just care that its over and she's okay. Having said that, I was still pretty thrilled that Charley was getting another chance at a 2 ventricle heart.

Tuesday: This was an okay day. It wasn't bad. It wasn't great. We spent the day in the PICU chasing numbers--adjusting the medications that were helping Charley's heart beat adequately as well as the amount of oxygen that her breathing tube was providing. I could tell that Dr. Hammel was frustrated as he thought that her O2 sats would be better. Charley was also having some bleeding from around her chest tube. After holding pressure on it without relief, they finally decided to put a stitch around the whole tube. VIOLA! No more bleeding. So yeah, overall it was an okay day.

Wednesday: I woke up Wednesday morning to a phone call from Charley's overnight nurse. She told me that Charley had done fantastic through the night, but that Dr. Hammel was there and wanted Matt and I to come to the hospital. Initially my heart dropped in my chest, but then he got on the phone and explained that they wanted to take her to the cath lab to take some pressure measurements. We threw ourselves together and by the time we got there they were all ready to wheel her off. We talked to Dr. Hammel and Dr. Delaney (who would be doing the cath), signed the consent and off she went. The cath lasted about an hour and a half and when it was complete Dr. Hammel came out to get consent for yet another surgery. They rolled our lady across the hall to the OR and proceeded to replace the shunt that they placed in her very first surgery with one 1/2mm larger. It was a much shorter day and seemed to be just what Charley needed. Her sats jumped up into the 80s, they were able to wean off of her dopamine as well as lots of her sedation and the ventilator settings.

Wednesday evening: Bad night. They had totally turned off Charley's sedation in an effort to remove her breathing tube. Anticipating that she was going to wake up (and probably freak out) I decided to spend the night at the hospital. Turns out, Miss Charley likes her sleepy drugs and didn't want to let them go! I'm not going to go into detail because I will get too worked up and go on a rant, but the long and short of it is--they extubated her at 3AM despite the fact that she was still incredibly sedated. Immediately I knew it was the wrong decision. Bad night.

Thursday: Breathing tube back in at 8AM. This day was spent just letting Charley rest after a night of struggling. She was very stable, but had worked so hard through the night that she just needed some time. I felt so terrible for my poor little baby...

Friday: Friday was a good day. First of all, Charley's chest tube and pacer wires were removed as well as 2 of her IVs. Then, after almost 48 hours after her sedation was turned off, Charley decided that it was time to come out of hibernation and join the rest of the world. Around 6:15pm they came in and decided that it was time to take the tube out again. I won't lie--I cried. They were tears of excitement, but more so tears of fear. What if she wasn't awake enough? What if they had to put it back in again? What if? What if? WHAT IF? They didn't. She was breathing tube free and doing so well that after only 30 minutes they had her totally off oxygen. GOOD GIRL BEAR!

Saturday: This was a pretty quiet day. We let our lady continue to wake up as she was still very groggy. The doctors said that it was ok to try to start giving her a bottle, but she wasn't quite up for that! It was a pretty low key day but according to Matt, not such a low key night. We were taking turns spending the night at the hospital so that at least one of us could get some rest. Well, turns out that after her 5 day nap, Charley was ready to go. Apparently she only slept for about 2.5 hours that night....thus starts our downward spiral of exhaustion.

Sunday: LONG DAY WITH A VERY CRANKY BABY--not to mention that Matt had to head back to Sioux Fall. Charley fought sleep all day long and continued to fight the bottle. My anxiety level with feeding was steadily increasing so I finally requested an NG tube (Ok, so my request was a frustrated "put the tube in" followed by about 30 minutes of tears and pouting) hoping that some food in her belly would help calm her down some. Not so much. She was so tired and overstimulated by all of the activity in the PICU. Much to my relief, that afternoon we were transferred out of the PICU (YAY!!!) and to a quiet room on the 5th floor. I just knew that this would make things better. Hahahaha---wrong again. She was so far gone at this point from so little sleep that night and NO naps that there was no making this girl happy. She screamed, cried, arched her back....she just fought and fought and fought. I got a phone call from my mother-in-law Mary that night and I think that she could tell I was on the verge of collapse, so she came to the hospital and stayed until 6AM. During that time we took turns singing, rubbing Charley's back and patting her cute little bottom. I spent a good chunk of the night in the crib with her (Yes, a comical site that I think had Dr. Hammel entertained the next morning). At 4AM I finally hit a wall. I was tired and angry and overwhelmed. Ok...I will admit....I turned into a psycho raging lunatic. I became very demanding and NOT pleasant in the least. They gave Charley some Ativan. Her mommy could have used some too! Finally some relief. Finally some sleep. To be completely honest, I think that she was having some withdrawal from the pain medications. She was crabby like I've never seen before and clammy all over. Whatever it was, I was glad it was getting better.

From there out, Charley steadily improved. She was still very fussy, but who can blame her. You would think that a hospital would be a good place to rest, but when you have mean old nurses (haha) coming in and waking you up for vitals, it can be quite interrupted. We made it through though and I hope that when we have to go back again they don't say "UGH, Charlotte's crazy mom is going to be back!" A very big THANK YOU to our nurses Lindsey and Danielle...they saw me at my worst. Thank you so much for being patient with me--I'm a generally happy, easy-going person but this admission really got the best of me.

Wednesday was discharge day and I couldn't be happier to be in the comfort of our own home with Matt and the puppies. It hasn't been an easy adjustment, but we're getting there day by day. Our last big hurdle is eating. Its frustrating, but it will come.

There you have it...our week in a nutshell. There are so many things that I'm sure I left out, but I think that you get the picture. Overall Charley was a trooper. I've said it before, but the strength of these heart babies totally amazes me. It was a long week and we're hoping that we don't have to do it again for a long time. There is inevitably more surgery in Charley's future...this we know...but for now we are going to go back to taking life one step at a time.

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