The Pain & The Stupidity

By pain, I mean a pain in my rear end, and by stupidity, I mean life in general.

We finally got released from the hospital again Wednesday. Of course they had to do it on a day my husband worked, forcing him to take another FMLA day. It's worth it to have our little one home, but it's annoying that we had Friday through Tuesday where one of us could have taken her home and they pick the one day we really couldn't. After getting the sleep study completed, we've learned two things... One is that her skin is soooo sensitve and now she has little tiny scabs where all the probes were. She looks like we commit some kind of cruel and unusual punishment.You can see all the tiny red marks in the picture. The other thing is, and this is the big one, she has.....(drum roll).......Breath holding spells. GASP!!! Oh wait, we knew that. And so did her pediatrician, and her neurosurgeon, and the PICU attending, and.... The list goes on and on. So you see where stupidity comes in to play. We wasted four and a half days waiting for a sleep study to show us this. Those results are just the sleep study side, we are waiting for neuro to look at the brain waves too, but I'm assuming since we haven't heard anything from them, there's no immediate danger.

It is unfortunate that we got the results back from the renal scan and it did show some scarring on her right kidney where her reflux is. We are already on a pretty rigorous cathing schedule, so the next step to protect her kidney is a vesicostomy. Obviously, I am not too thrilled about doing another surgery, nor do I want another ugly hole on my daughter, but her kidneys come first. This will create a hole near her pubic area that will allow urine to drain constantly, preventing anything from refluxing back into the kidney. We will no longer have to cath but will need to change her frequently and deal with pee being everywhere from what I read. Again, none to excited for this, but it has to happen.  Callie's hernia surgery is scheduled in a week, so we are hoping they can either do both surgeries that day or reschedule and do both surgeries another day.

In other news, we finally got Callista's nursing care put in place. We met the nurse who will be her primary yesterday and Callie seemed to get along with her well. She shared some smiles and even calmed down for her when she was crying. I am happy to know she is great friends with my brother's fiance as well. It's good to have some personal connections. While we are at work, we'll have someone at home caring for her, doing her cathing, wound site care, etc.

Perhaps now I'll have time to mow my lawn (sorry neighbors!). Most people have no idea how time consuming it is to have a kid in the hospital. It seems like maybe things should be less busy, since someone else is taking care of her, but the truth is, it just makes life more hectic. For us, I worked eight hours during the day, left work, drove to the hospital an hour and a half away, either spent the night or left late, drove an hour and a half back, rinse and repeat. Casey worked his twelve hour shifts and came to the hospital on every day he had off. One of us stayed with her at all times this stay, because we did not have a good experience nor much faith in the unit we were on. For example, one day I was there and they are supposed to be cathing her every four hours. She was due at 8a. I let her sleep a half hour more, and did it myself. No one came in to check on her, or to see if I did it until 9:45a. The poor kid was already admitted for a UTI but they'll let her sit there without getting cathed. Ugh.

Now I'm just hoping my little pumpkin is willing to take a nap today because I'm one exhausted mama!

Mommy Dragon

Mommy Dragon- That's me. I swear I have learned to shoot flames from my nose and mouth just like a dragon. Do you think there are pink dragons? Because that's what color I'd be.

We are back in the hospital again. Callista has ANOTHER urinary tract infection. Wednesday she developed a fever of 101 and Casey had to take her to the ER. It is the same bacteria from two UTI's ago. It bothers me that urology was not convinced we needed to change her prophylactic antibiotic, but to me this screams that we're not treating what we need to be treating. She was supposed to have a scan to check her kidneys on Friday but it didn't happen so now that is Monday.

Also while we are here, for some reason unbeknownst to me, her breath holding spells, which have never been an issue for the past six months, have now become a HUGE issue. Usually we can get someone to listen to us during hospital stays but this stay has been by far the worst. I believe they've already got an idea in their head and they refuse to let it go. And so begins the drama.... For the first time in Callista's life, a tracheostomy has been mentioned. More than once. With NO diagnosis that supports even getting one. This has been our worst fear out of everything. We got through the shunt, the decompression, the feeding tube, but a trach is where I draw the line.

Now don't get me wrong, if she was lacking oxygen all day, every day, it would be the thing to save her life. If she randomly stopped breathing and didn't give any warning signs, it would be the thing to save her life. But these breath holding spells happen only occasionally. It's when she is very pissed off and/or in pain. At home, we have them maybe once or twice a week. In the hospital she has them much more because she is: uncomfortable, unable to rest sufficiently, constantly being poked and prodded, and often without someone familiar to comfort her. Worse yet, she usually does not go into a breath holding spell if you pick her up and cuddle her. I've yet to see anyone here pick her up, let alone give her some lovin'. The concern for these just started a few days ago when the ENT came to scope and make sure everything in the back of her throat was still okay. They had a tube shoved down her nose and were moving it around. She got angry and cried. They continued. She held her breath and desated. And so begins the drama of the breath holding.

She now has to do a sleep study to check for central apnea (uh, she never does it in her sleep?). It was supposed to happen last night but did not. Now it's supposed to happen tonight but I won't hold my breath-no pun intended. The worst part of all this is that the doctors only want to jump immediately to talking trachs when we don't even have a diagnosis of anything! They've mentioned tracheomalacia, but that does not make complete sense either because she's had many scopes and a bronchoscopy and none of them showed any abnormalities. Also with thracheomalacia, many infants have random blue spells where they're calm and relaxed and still turn blue. Callie does not do this. You always know when it's coming. It is oreceded by banshee screams and is no surprise to anyone.

This morning started off on the wrong foot as well because an ENT that I am not familiar with came in and reiterated why we were doing the sleep study. I asked him politely what options were available if she does show apnea (her apnea monitor has not alarmed once since getting it two days ago). Immediately he says "trach trach trach trach trach". Or, that's all I heard anyway. I asked him why they would jump to such a drastic measure first and this is what angered me the most...."It will be easier to manage her airway if she ever has one of these spells and doesn't come out of it". Excuse me?! I may or may not have (ok, I did.....) raised my voice that I was not going to do something drastic and dangerous (respiratory infections are HUGELY possible with a trach) and life altering to my daughter for a "what-if".I wish I'd said this as well; If that were the case, every kid would have a trach because what if they stop breathing? And every kid needs to have a full body x-ray, full MRI, and blood work weekly because WHAT IF.... Get my point? After my little outburst he had the nerve to follow up with "It's just easier". Well buddy, we didn't ask for easy or convenient for YOU. We have to do what's best for HER. On top of all this, I really don't think her sleep study will show anything. But additional thoughts and prayers are always welcome and needed.

I'm going to try to keep my dragon reined in today, but with canceled/rescheduled tests and ignorant people, it's a hard task to manage. I really hate this place, it brings out the worst in me. I think you can guess which animal I relate to.

Freedom

What an exhausting week! Callista finally got her scope of her esophagus. It turns out her g-tube was too long and was blocking her pylorus, the opening to her intestines. The lining of the esophagus and stomach were raw and she had a tear in the bottom of her esophagus. Who would have guessed that after all this time it would be so easily fixed? They replaced her Mic-Key button with one that is a half centimeter shorter and upped her dose of Prilosec. Now we just have to give it time to heal. While we were there, we also got another swallow study and the speech therapist said it was okay to begin sampling pureed foods (yay!). It's still a no go for liquids, but at least we made some progress.

Again, I was NOT impressed by the PICU at all... What puts the icing on the cake is that somehow PICU shared with urology that Callie was uroseptic, meaning her urinary tract infection spread throughout her whole body (can we say deadly if not treated ASAP??!!). When the urology doctor came in the room, needless to say he was pleasantly surprised that he was looking at a happy, healthy baby.

We have to go back at the end of August for the hernia repair as well as a renal scan to make sure her kidneys aren't scarring from the reflux and pressure. It's just a precaution and I'm pretty sure it won't show anything since none of her infections have ever made it to the kidneys. Keep Callie in your thoughts as we hopefully get our last few issues out of the way!

I'd like to ask you to please think of our little friend Aiden, who also has spina bifida, as well. He will be going through his second decompression surgery Friday and would appreciate all your positive vibes his way! What a strong and handsome little boy. 

After all that, we ordered pizza. I'm eating and going to bed because this mama is exhausting!!

Zip, Nada, Zilch

***Update: We are in ICU now because she had an episode of bradycardia and is on a nasal cannula for now.

That's what we've accomplished since yesterday. We were supposed to have hernia surgery yesterday and instead we were forced to head to the emergency room at 5am. Callista started throwing up the brown vomit again at 3am and by 5am, it was every five to ten minutes or so. Believe it or not, they actually believed me when I said it wasn't the shunt and skipped the six hours of MRI and x-rays and went straight to GI. This is the third time we've been in for the same issue.

So of course we did not get to go through with the hernia surgery. I still feel like this is a huge coincidence that she was diagnosed with a hernia and then three days later vomits blood and they are unrelated. They assure me that while they can't rule it out, anatomically, it's next to impossible for that to be the cause. Today she was supposed to receive a short anesthesia for a scope to look at her esophagus and stomach but they postponed that since she was not back to baseline and they didn't feel comfortable putting her under.

To top off our awesome party, they informed us this morning that her urine culture grew something and she has another UTI. At this point, this is our fourth UTI in three months. I want to talk to urology. First, they told us it was because we weren't cathing enough, so we upped our cathing. Then she got another one and we were put on bactrim for prophylaxis. THEN we were told it's because of her kidney reflux and we were put on ditropan and cath every four hours. I am so excited to be enlightened as to why she has one now. 


And here I am, on my last week of summer break spending it in the hospital with Callista. She had to spend her half birthday (yes, six months old!!!! Gasp!) getting poked and prodded and miserable.

GI Visit

After a visit to the ER this week again for excessive vomiting, we finally got an appointment with a GI specialist. Of course we went through the "shunt" process: 3 x-rays, an MRI, and an unseen neuro consult. As always, a waste of time, even though I know it's to be on the safe side. The new doctor changed the way we feed her first to see if that helps. She also ordered a gastric emptying test to see whether it's just reflux, or if the stomach is the problem and reflux is the byproduct. They have to call us to schedule this. We are hoping something works because we'd like to avoid 24 hour feeds.

Wednesday is her hernia surgery. Although she has to have anesthesia, it should be a quick and easy procedure. As always, the anesthesia part makes me very nervous but it's something we have to do! I'll update after we're done. 

Time

"Time heals all wounds". But does it really? Does a mother completely heal after the loss of her child? Does a wife completely heal after the loss of her husband? Do parents like me ever completely heal after life doesn't turn out anywhere near what you thought it would? I don't think so. I think the wound is a giant scar whether hypothetical or real. It's healed, but it's there every day. You see it every time you look in the mirror, every time you get dressed in the morning, every time you see someone with "your ideal". I see it in my scar, I see it in my daughter's scar. The scars are not ugly, they are a sign of bravery, a sign of taking the path least taken, a sign of the long journey ahead of us. But it is a constant reminder that our lives are far from normal. I think to myself, am I ever going to get over what has happened to us? And sometimes I think yes. Then something happens to bring it all back. Sometimes it's something big, like a surgery or hospitalization. But sometimes it's something so small as seeing a teenager with a healthy, happy baby. Not that I think ANYONE deserves something to be wrong with their child, because in my world, all children would be leading perfect, full, healthy lives for a long, long time. But my selfish mind runs over and over, why does this person who isn't even grown up, isn't even ready for a child graced with such a "normal" baby, and here we are making trips to the doctors every week, staying in the hospital frequently, about to put our child through her fifth surgery, and we were in a good place, we were ready, we deserved happiness in my mind. So no, I don't think time heals any or all wounds, they just hide them underneath stronger skin and you hope and pray it never comes open again.

With that being said, my daughter has made me such a strong person, and she inspires me to be happy no matter what. And I am. When she smiles, the room and my world light up. Having her has also toughened me up in a good way. I no longer put up with people who don't have my or Callista's best interests in mind, whether it be doctors or otherwise. I am a little quicker to let my temper get the best of me, but at the same time, before Callie, I rarely lost my temper or had a confrontation. And I'll admit that a temper isn't something to be proud of, it does feel nice to say what you need to say instead of tiptoeing around. It's almost given me freedom I didn't have before to shed the facade and truly be me. It's nice to be able to stand up for my daughter, myself, my family.

I also take our situation as an opportunity to educate. I was asked by someone if it was okay to ask questions about Callie. YES! And in fact I encourage it. There is so much misinformation out there and parents of SB children have the responsibility to get the correct info out there. If I tell one person, hopefully they make a connection with another, and so on. Instead of misunderstanding what SB is, we can make sure everyone knows what our kids are really like.

I also like to advocate for fetal surgery. I take every chance I get to talk to medical professionals here to get the word out. It's a foreign concept to most here, or they feel they have an understanding of it, but in reality they do not. It's so interesting to see exactly how much people (nurses, doctors, etc) want to hear about it. It's a hard decision to make, and it's definitely not for everyone, but it was definitely the right choice for us. I was meant to be the person to enlighten.

I guess I was feeling sentimental today or something, but perhaps that's because the tiniest love of my life has been smiling all day even through her reflux issues. Again, teaching me to smile and be strong (although I can't scream whenever it doesn't work ;))

Home (3rd time's a charm!)

We are home! They surprised us Sunday afternoon by letting us bring Callista home and finish raising her feeds at home. We were so happy, but at the same time, it was so crazy because we had no power! It went out Friday night and she was in the hospital so we just stayed in the dark. But Sunday was a different story because apparently batteries on feeding pumps don't last forever! Lucky me my friend A- graciously allowed us to stay at her house. Yesterday afternoon it came back on so we headed home for real. She's still on her antibiotics for the UTI until Saturday night, and we started the ditropan for her bladder this morning. Let's pray we don't see the side effects of this drug. Today also begins cathing every four hours. So far, so good!

Now that I am home for summer break (spending time in the hospital is not really what I thought I'd be doing for my first week of vacation!) it's time to spend LOTS of time with my baby girl! I'm going to think of this as a late maternity leave since I got ripped off for my real one.

 It's also time to get crafty!! Please add my new craft blog to your list: Pinterest Princess Kimmy. I'll add my first pinterest project this afternoon!

Love you all and thanks again for your support during Callista's journey. We truly appreciate all the thoughts and prayers we receive in times of health and times of need <3