Hospital Psychosis

I often wondered how mailmen could go "postal"- I mean, everyone has bad days once in a while, but to go postal? Well, folks, I'm officially there! I am sick and tired of being in this hospital. Yesterday we were told that we would be going home today (Wednesday), so long as the chest xray and blood results came back. So, being optimistic, we packed, and cleaned the Ronald McDonald House Room- Felix moved our stuff out... and here we are- still @ the hospital! UGH!! The nurse came in with a weird expression on her face, so I simply asked if we were going home. She deflected to the doctor... that means no, obviously.

Apparently, her chest xray looks fabulous (I didn't expect any less!) and her blood results were great too, but they're worried about the withdrawal factor. To that I say- SERIOUSLY?!? SERIOUSLY!?! I've been telling them for the past week that I thought much of Grace's symptoms were withdrawal related.... Whatever! Here's the story... Grace was on loads of meds (dex, ketamine, fentanyl, vercet, morphine, etc.) and we went home using ativan and methadone. Using the original weaning schedule, we would have completely stopped all meds yesterday. Instead, upon admission they increased her meds from 1x per day to 4x per day, and still stopped her meds- 3 days early!! Of course she's in withdrawal! So, I've got a cranky kid on my hands, but once she gets ativan- Gracie's back! Last night in the middle of the night we hit a rough patch- Grace couldn't make it 2 more hours (she gets it every 6 hours, as needed) so we had to use an alternate medication... that was @ 1 am. Because of that med, we're not going home today. Do you think they told me that this morning? Nope... early day? Nope.... noon! After I'd spent all morning packing!! We'll still be back in a few weeks for her cardiac cath procedure, so this really is quickly becoming our 2nd home. Felix and I joke that we should make an offer on a room @ the Ronald McDonald House and just move into it...

She's back on methadone now 1x per day and the ativan 3x per day. She's currently doing the can-can in bed, giggling and smiling. So great to see my baby back! We did an EKHO here today so that we can have a post-op baseline, and now it seems as though we can postpone the cath a bit longer (maybe a month or more?).

Someone sent me an interesting article today about PTSD that follows families from the NICU. I think any parent that spends a good portion of time in the hospital can relate- check it out:

http://well.blogs.nytimes.com/2009/08/25/for-parents-the-lasting-trauma-of-a-sick-baby/

Grace is back on oxygen, occasionally. She'll need to be on while sleeping and when grunting. Since the hospital can't monitor us 24x7 (isn't that their job? I'm just sayin'....) they're keeping it on her full-time now.

All in all, this hospital stay has been a 5 out of 10 at best. I don't feel like we accomplished much out of this stay, other than accumulating a few more diagnosis'. I did have great friends and family that kept me sane and sustained during this stay. Mark & Kelly brought me lunch, snacks, a case of Dt. Coke (my vice!), 2 cases of water, and offered to mow our lawn. Joy and Jerry brought us paradise bakery- a yummy salad, a few sandwiches, cookies, drinks.. it was fab! Tiff Deacon brought us a rotisserie chicken for dinner, some snacks, fruit, drink mixes- life saver! By the way, the drink mixes went awesome with Mark & Kelly's water cases. :) Maren and Deborah are helping us transition home with more Paradise. The BEST friends ever! Mom & Pam have brought loads of clothes, washed loads of laundry, have done Starbucks runs, candy bar runs.... the list goes on and on. I can't believe it's been 5+ weeks since we really have been home, save for our 4 day mini-trip back to Surprise.

YAWN! What a day... hopefully home tomorrow! XOXO

So... here we are. We are up on the 4th floor in the "telemetry" unit- basically, they can watch her heart and vitals up here. We came up around noon-ish yesterday and got ushered into a room where we were told we would be sharing with a surgery patient. At about 5 pm, the patient came out of surgery and was howling- literally howling! Grace had been ultra fussy all day, and that put her over the meltdown cliff. I had a word with the charge nurse and we were moved into a private room. Thank God! This room is as cold as the arctic, but since I don't have a kid howling, and we're not sharing germs with other kiddos- I'll take it! Grace did well through the night. We're sharing the big bed with her (thanks Andrea!) and she snuggled with Daddy until about 6:30 this morning. We were told that her heart skipped a beat really early, but other than that, she looks great. It seems as though the cath will be delayed for a few weeks, probably sending us home in the next few days, and then bringing us back in a week or two. She is down to .1 for oxygen, and they're hoping to wean her completely before we go home. Woo Hoo! :)

Every day we spend here I become more tired, and less patient. I'm exhausted- emotionally mainly, but just plain tuckered out. Poor Felix, he comes home from work and I make him spend time with Grace- only because I need a break! Poor Felix never gets a break. Food just came in- so I'm off to eat some breakfast- yummy!

Ta Ta for now!

Watch & Wait

We're still in the holding pattern that I call "cruise control". Grace is just chillin', waiting for the next thing to happen.

The lung test results came back- absolutely nothing wrong with her lungs. This is good news- this means no aspiration, no infection, no TB... but this means it is cardiac related. Isn't everything? The plan is to do the cardiac cath on Wednesday morning with Luke Lamers. I LOVE Dr. Lamers- great guy! And he's from Wisconsin, so of course he gets extra special honors. :) I call him "Cardiac Man"- it's his super hero name. His name is so Lex Luther-ish, don't you think? And he's VERY tall and thin, and very funny. I guess I have a mini heart-mom crush on him, since he really rescued us our past stay here. I think he would laugh at me if he knew that.

Dr. Lindblade came in today to explain where we're at. Apparently, the pressures in her right ventricle are higher, but no higher than her left ventricle. The reason they're high is the Pulmonary Arteries that branch off the heart are super tiny. Every heart surgery Grace has had, they've patched these arteries trying to make the thicker and wider, but they still remain pretty tiny. Ballooning could be an option, but the problem w/ ballooning is, they'll only balloon a tiny portion, and then it goes back to being skinny. Apparently 3 months post cardiac surgery is when optimal growth occurs- we're only 3 weeks, so they don't expect to see much. They are going to try to clamp the collateral arteries, if they're present. Here's my analogy for that: Imagine a main freeway, with a lot of little side roads and routes surrounding it. To avoid traffic, people might take those side routes, keeping the main freeway somewhat less congested. In order for the city to warrant widening the freeway, they would need to see more traffic, so they have to shut down the side roads to encourage growth. Make sense?

Grace is back to herself again- we've been enjoying holding her and tickling her. She's gotten cuddled by Oma, Mama and Daddy.

The Ronald McDonald House gave us tickets to the Cardinal's game tonight. Felix and I are going to try to sneak away for a bit and enjoy ourselves- I think it's important to recharge ourselves and try to have some normalcy, despite the situation.

So, back to the heart of the matter- HA! Get it? The "heart" of the matter? I crack myself up sometimes.... The cardiac team will meet on Monday during conference to decide if we'll cath this week, or 3 weeks from now (the thought is that if they decide to balloon, they have to wait until 6 wks. post surgery...), but most everyone thinks the cath is neccesary to coil off those "side routes". So- we're here until Tuesday, at least. They're trying to wean Grace off of the oxygen, but she's not having it. She's still on a low flow machine (Poor Man's CPAP), and at 5 liters @ 50%. They tried to go down, but she lost her oxygenation and was working pretty hard, so the team bumped her back up. The problem- we can't go home until we get back to the wall.. which is quite a weaning way away.

We Love the Hospital!

Sunday the 16th of August was the best day Grace has had since we had come home from the hospital. She was smiling more, acting more like herself, puking less and breathing less quickly and with less effort. We went to bed excited to have our little girl back. Unfortunately, that excitement was short lived. At 1:30 am, Grace woke us up to a blood-curdling scream that wouldn't stop, no matter what we tried. Grace was crying so hard that I swore she must have gotten stung by a scorpion or something worse. After, I worried that her oxygen level was depleting, so we hooked her up to her O2 monitor. Her sats were great, but her heart rate wasn't- it normally is in the 130's and it was up to 200!! She was grunting with each breath, and still very irritated. Worried about her heart, we called the cardiologist on call. The cardiologist could hear her grunting in the background and asked that we come in. Worried about the sick kiddos in the ER, I asked her to pre-check us in. We didn't get to the hospital until 3 am, and her heart rate was still in the 180's and now her O2 levels were suffering. We went onto oxygen and got admitted into the ICU.

Days went by with test after test. They tried blood tests, swabs, rectal swabs, moving her chest tube, unclotting her chest tube, stopping her feeds, starting her feeds, switching her meds, increasing her oxygen... NOTHING! They did EKHOs, EKGs, CT scans of her whole body, Xrays... NOTHING! Finally, they decided to do a surgical procedure that places a scope down her lungs and belly for a tiny biopsy, and then also a spinal tap. We expected to hear that Grace's belly was ill- maybe ulcers or something. Instead, we found she has a nodule on her vocal chords, blood in her lungs, and a moderate to severe floppy windpipe. The windpipe is narrow, so she likes the oxygen to keep the tunnel "pushed" open. The blood in her lungs may be heart related. They're planning on doing a cardiac catheter procedure to take a look at her arteries. The thought is that her pulmonary arteries are too small, creating a very high pressure system in the right side of her heart. The pressure creates swollen lungs, and swollen liver, which creates blood when irritated. I'm hoping that we're not looking at another surgery- I'm hoping whatever it is, that they can fix it in the Cath Lab.

So, another 2 weeks lost @ PCH... We have officially spent 1/2 of Grace's 9 month life in the hospital. Thank God we like this place!

Meet the Team

I figured that with as often as we are here at the hospital, I should include a photo directory of who's who.

Grace's Cardiologist: Ashish Shah (AKA Doogie Howser)- He looks so young, but he's really a great, intelligent doctor. I LOVE his bedside manner, and he's really funny, which helps more than most people realize.

Grace's Cardiac/Thoracic Surgeon: Jeffrey Pearl- Dr. Pearl didn't do Grace's 1st surgery, but he did the "BIG" surgery and will most likely do any further heart surgeries that she'll have.

Grace's Pulmonologist (lung): Rupali Drewek

Grace's Gastroenterologist (stomach): Dana Ursea

Grace's Pediatric Surgeon (general surgery needs): Kathleen Graziano- she's married to one of the cardiologists in the practice that we see sometimes, Joe Graziano.

The PCH team is great- we're blessed to have such caring people so close by. As much as we daydream about someday leaving this climate, the idea of leaving this hospital keeps me close by.

Recovery

Sitting in the hospital watching and waiting for healing to happen is painful. It's neccesary, but painful. Sitting in this room for 3 weeks would make anyone go nuts. Grace is slowly, slowly healing. Tasha, a friend of ours that we met in the NICU, came to take some photos of Grace's healing process.

She brought groceries for us (we had an apartment @ the Ronald McDonald House), a candle, a wind-up ladybug and a card from her family. Her oldest is just barely turning 2, and can't say Grace, so she calls her Baby "Geese"... of course we got a card wishing Baby Geese well! :)

We make the best of our time here,

trying to fill it with constructive things to do- helping friends plan their wedding day, filing taxes, paying bills, designing websites, reading our Kindle, text messaging, napping, watching way too much HGTV and holding Grace (of course!) as allowed.

Felix had planned a party for my 30th birthday, but it was before we knew about Grace's surgery. Instead, we had our friends meet us for dinner @ the Yard House and we celebrated with them.

It was nice to get out of the hospital for a little bit- and the cake was yummy!!

As always, and I don't say it enough, we are very blessed by our friends and family. The support you provide us really does sustain us. We feel guilty that we are in a position to be so needy of thoughts and prayers, but cannot wait until we can pay it forward. That being said, we NEVER wish any experience like this on any of our friends.