Tuesday, July 28, 2015

Spinal Fusion Post 5

Goodness I hated last post. I couldn't even go back to re-read and edit. It was just yuck to remember that day/weekend. I hated the feelings it all brought back, the images of her struggling for every breath. Remembering Nurse Megan's sad face. I can handle my own sadness. I can breathe in and out and survive really hard things, but when our sadness is shown on other peoples faces I just can't. It's why I never watch seizure videos friends post. It's why when I was at my friends house and watched her daughter seize I went looking for a hair brush for her because watching my own story unfold in other peoples lives is just something I can't do. Well I can do. I can do anything. I just hate it. I hate how much it hurts. So that day, that weekend really hurt and when I saw on other people's faces what we were feeling it just made me want to pack it up and walk out the door. Not that I ever would. Ever. But sometimes you just can't imagine taking one more step forward and thank THE GOOD LORD when I can't take those steps he carries me through.
So forgive the last post. I just really didn't write like I like to. I imagine it didn't read like I like my stuff to usually read. It was just really hard.
And then I think of parents who watch their kids struggle for breath regularly. I think of the families I know with kids with same diagnosis or very similar and they know all the ins and outs of breathing troubles and yesterday I read the blog Gwendolyn Strong Foundation blog, one I have read many times in the past, and read of Gwendolyn looking at her parents and asking for forgiveness to finally just let go and they gave that to her and she then peacefully passed away and I think oh my heart. Oh my breaking heart. This world that we are so a part of. So entwined with. This special needs community just hurts most of the time. We have been spoiled to have lived 12 years with Lily and only have a couple times of any respiratory stuff that never really was serious at all. My sister with her kids with asthma has witnessed more than us prior to this surgery. We have been blessed and that is probably why it hurt us so much. It wasn't expected. And not like expectations have ever been on our side or in our favor (whose ever really are?) but still. I wonder did I take that all too hard? Am I over internalizing? It's not like I don't over internalize my shopping list, so yes that answer probably has to be yes. But it's who I am. Over thinkers anonymous would be a good meeting for me to think about going to. I think was it all really that big of a deal? They said the surgery was next to open heart the biggest surgery a person can have and it was done on a child with severe special issues. It was not out of norm to have complications. But we aren't just a number of statistics. We were parents scared to death of a surgery that we had every right to be scared of. I had read prior to surgery some parents saying the worst part of the surgery was the anticipation before the surgery and I thought oh phew, I bet that will be us. But it wasn't us. The anticipation was nothing compared to the real deal. And although I know she is straighter and will be so much healthier in the long run, I am still not in a place that would be like oh yeah I'd do that all over again. I don't know if we ever would.
But I digress.... after she was re-intubated we started to just work on one small goal at a time.
It was one day she needs to pee and poo and get the fluids off.
The next day was she needs to get a chest tube to drain the fluid around her lungs.
Next day was extubation (scary scary scary, but awesome awesome awesome) and straight to bi-pap
Then it was PT visit (less scary than it looked) and sprinting 4 hours off the bi-pap.
Then it was room air during the day and bi-pap at night.
Try to eat.
It was that trying to eat that we didn't get sent home that Friday of that week.
We'll never forget that day after she was extubated and we brought her Tobii in to her and sat her up and asked her questions and she immediately and consistently would say I want to drink chocolate milk. It takes her two different pages to get to ask for this and so we knew she was incredibly deliberate with this request and the awesome thing was our team. Oh man our team was incredible at the PICU at PCH. Before rounds they would say Team Lily is meeting. I mean seriously, how incredible is that? They were all for her recovery and it was so evident in everything they did and said. So when we said she wants chocolate milk they were like get speech in here ASAP! And I am not kidding within the hour speech was in with chocolate milk and some other things to try and Lily drank that chocolate milk like it was the last chocolate milk on earth. Then she coughed. And coughed and speech said for the weekend she will need to stay on NG tube and we will reassess on Monday. That was disappointing to me because she had come so far that week. Sunday she woke up, Wednesday she was extubated for the final time, by Friday she was sitting in her chair for hours at a time and talking cruises around the unit with no oxygen at all, we were so ready to break out of there it was disappointing to see that she wasn't ready to eat. But it had only been two days after being intubated a week so it made sense. And we were staying in the PICU which had become home to us so I didn't want to leave that room unless we were going home.

The weekend my mom brought the kids and more visitors came. It was a much better end of the week and weekend. I picked up a book and read. Turned on the TV for Lily to watch movies. It was as comfortable as you can be in the PICU. We knew Lily was going to be OK and I imagine if the second week was our first week I too would have said the anticipation was the worst part.
During that week I just blazed over we still dealt with fever spikes and extremely low blood pressures. She wasn't well, she was just better than being on life support. So we watched the monitors constantly and would worry with beeps and alarms and when the nurses looked concerned and got on the phone with the Dr's- well not the phone those little talking voice thingys- about her blood pressure being so low, I am pretty sure it raised ours. But she continued to get better as each day passed.
We had some great and memorable nurses. One nurse gave Andrew a hard time when he went to leave to get a drink, she said "are you leaving?" he said "yes just to get a drink" and she said "well who is gonna watch the monitors for me?" We laughed. Andrew was a nervous wreck just pacing and watching the monitors. Eventually his mom brought in some coloring books she got free for the kids but Andrew found them a way to focus his energy and colored he did. Seriously. Even one point my aunt Gloria and I went on a walk to Walgreens to buy him some colored pencils because the cheap crayons donated to the hospital weren't worth a crap. This is not a very safe part of town. We felt it was worth risking our lives to have him focus on something other than Lily's monitors.

When Monday rolled around our team Lily's plan was to get speech in and see if we could go home. We couldn't. She wasn't ready. Foods needed to be thickened and they didn't feel she was ready to take out the NG tube. I didn't really want to take her home with the NG tube in and figured if it is just one more day we will stay there, but we did have to move out of the PICU. :( sad face. So they were making arrangements to move us to the 8th floor and I was sad. I was nearly in tears as each critical care Doctor that worked with us stopped by our room to tell us goodbye and how much they enjoyed working with our family. They wished us the best of luck and I kept my chin held high as I said good bye and tried desperately to keep my lips from quivering and my eyes from watering. Not much longer did I have a visit from the chaplain... never saw him the first 2 weeks then he came. He was kind and prayed with us and then another visit from a cute dog. Lily was awake for that visit so that was fun! Oh how we love visits from the pups!
In the meantime of all this going on in the morning I got a call from Andrew who went home the night before and was trying to get some work done that Monday, it had been 2 weeks since he last got any work done. He told me he really wasn't feeling well. Said he felt like fainting off and on. Even when driving. I said you should go to Urgent Care, probably blood sugar or something, not to concerned but he should get it checked out. He said find a place by PCH so he can visit us after he goes there. I found a place about two blocks away and gave him the address. Didn't think much about it, I was figuring out what we could try to feed Lily for lunch. Speech said she could have pureed thickened things and I was just happy to start trying some foods for her. I was talking with the nurses about stuff. Figuring out meds and all the things that go on when you are hospitalized when I got another phone call from Andrew. He said I need to pick him up and take him straight to the heart hospital just a few blocks from where he was. Like a stones throw away from PCH. He said if I don't get him right now they will call an ambulance to take him. What?! He was in A-Fib and needed to be in the hospital. I was like what is happening. I can't come get you. I can't leave Lily. I can't loose MY PARKING SPACE! Andrew sounded desperate and scared and then I was feeling desperate and scared. I told the nurse Ariel, um my husband needs a lift from urgent care to the ER at the Heart Hospital what do I do? Seriously Ariel I need something. Advise me. She said leave Lily and get him. I said "but I have never left Lily alone in a hospital room (except to pee and get coffee)" she said "people do it all the time" I said "I don't" she assured me she would be fine. I did what any of us grown women would do and I called my Mom. "Mom.... I have to get Andrew from Urgent Care and take him to the Heart Hospital. Like now. Yes I am serious." She abandoned her shopping cart at Costco and came straight to the hospital and Lily was left alone for about 30 minutes. I backed out of my parking space and muttered to myself I really don't want to loose this parking spot. Yes I did.
I called Cheryl (mother in law) and said can you come to the Heart Hospital to be with Andrew because I wasn't going to be able to stay all day with him, my mom would have to leave to get the other kids. She dropped everything and was there in 25 minutes. How we could we have ever survived those two weeks with out our moms?
I pick up Andrew and say hey, and we leave. We go literally 3 blocks east to the Heart Hospital with our little fast pass for the ER and he is brought back, he is hooked up to a monitor, he has an X-Ray and all this is happening super fast. As we sit there he beeps more often than Lily's ever did. His heart rate was all over the place. Nurse asks if he has ever been in A-Fib before and we were like what is A-Fib? Apparently not. They asked him 80 times if he drinks a lot of alcohol, if he drinks a lot of energy drinks, if he takes illegal drugs... no, no, no. It was like the Spanish inquisition. He said see this wrist band? Our daughter has been in the PICU for 2 weeks. I'm under stress not illegal/bad for you substances. That was really annoying. The drew labs and then the Dr came in and said he will need to be admitted. Andrew and I looked at each other like wait, what? Admit him? What? Dumbfounded at all that was going on and realizing I had to get back to Lily, I kissed my love and said goodbye and went back to the other hospital to see Lily. parked in a crappy place and may have muttered words that weren't nice.
I got back to Lily, we moved rooms, my aunt and friend Laura came by and helped me move all our balloons and all the other stuff we accumulated there for two weeks and I kid you not our window faced the Heart Hospital. Later that early evening I had a chance to get back to see Andrew and poor guy was staying in something I would compare to a prison cell. Food looked awful and he had no window. I got to hear what the cardiologist had to say and he said they would give him meds that should regulate his heart but if they don't help the next day, Tuesday they will shock it back into rhythm. Oh yes you heard me right. They were going to shock my 33 year old husbands heart back to rhythm. I kissed my sweet grumpy husband goodnight and went back to my sweet Lily who was with my Aunt Gloria and gave her some cheese soup ie mac and cheese puree she refused to eat and I think I passed out.
The next morning Andrew calls me and says they are taking me now. 3 hours before I thought they would take him and he was indeed getting his heart shocked. Both Grandma's came to be with Lily while my Father in Law, Steve, and I went across the street to be there with Andrew when he woke up. We literally made it just in time. He was coming out of the procedure and in recovery and we came in and saw him wake up. He made us giggle at his confusion and then we went up to his room.
Our friend Brian came in as well to see Andrew and I felt comfortable leaving him again to go back with Lily.
That's both my visitor badges 
Lily was doing great drinking thicken liquids and eating pudding and applesauce, she was pooping and peeing and was able to get the NG tube out. They said they felt comfortable with us bringing her home! Yippee!!!!!!! 2 weeks from the day she was admitted she was coming home! AND they said Andrew was able to come home too! What a way to end those two weeks!


here was her scar 3 weeks post op - beautiful 

And April 21st we all came home. We kept saying, you were shocked today. Like literally had your heart shocked today. I now lovingly refer to him as Sparky.

And then we went into a whole new life that was recovery at home sweet home.

She is doing great. It's been a long road. We still don't feel she is fully recovered but is getting there. She struggles with being really stiff in the mornings and she has been stuck in positions in bed she couldn't get out of and that has resulted in some blisters/sores :(  We feel we have gotten these struggles figured out for the most part, but some of the stiffness is just part of this recovery.
She has beautiful posture and her pain management has been fairly minimal considering the surgery she had. She did end up in the hospital as I wrote about earlier this month and I do feel the constipation is from her not being as mobile as she was pre surgery but we are figuring out what works and will keep working on it. She is back to going to school full time and loving it. We even went out of town earlier this month and she flew on the plane in no car seat! She was able to sit the entire plane rides! And we rented a car and she was able to seat in the seat with just the seat belt. Something that she wasn't able to do til post surgery!

Her follow ups with pulmonologist have been positive. She got a suction machine for at home but hasn't needed it. She is scheduled for a sleep study in August and swallow study looked good. We shouldn't have to follow up with her anymore unless something changes. She said her lung collapsing isn't a huge problem for down the road. I was concerned she could have had some damage but she said it was like a balloon deflating and inflating. Not to worry about permanent damage. Phew!
Follow ups with Dr. White have been great! X-Rays looks good and he released her for all activities (even swimming) after 8 weeks!
He really is the top of the top! If you or someone you know needs this grueling of a surgery, this is who you need to see! Cream of the Crop!

No it's not the Hoff.... it's Dr. White.

I'll end this post with our kids on their first day back at school - yes we have short summers - it's awesome! Extended breaks when it is cool out! Modified year round is fabulous in AZ!


And that my friends is all she wrote! I look forward to blogging about Oliver and his spider man antics and Andi and her preteen drama and Lily being a healthy sweet 8th grader!
Ready for life to be "our" normal!

Tuesday, July 21, 2015

Spinal Fusion Post 4

I find it hard to believe I am on Post 4 and just 3 days into the whole ordeal. And honestly not finding much energy to do this and I guess the only reason I am doing this is for myself. For later. As fast as I am loosing memory of this time I know it will all be gone and having this is important. I think. I am pretty sure of it. Kinda. 

Oh and just a quick update on that last hospitalization, she is good. UTI all cleared up, still struggling with getting her to poop regularly and think it has to do with her not moving like she used to after surgery and still so it is a daily struggle. Literally. But she is much better. We were able to go up North to Greer and had a great time and we went to South Dakota to visit family and she did wonderfully there. So that's that.

OK so Friday April 10th sucked. And let me begin by saying Friday is my favorite day. Of all the 7 days, Friday is my star student, my shining star, the one day I prefer no one to mess with. I am a more of an anticipation person therefore Fridays always trumps the weekend. It's the being excited for than the actual thing so this day being Friday was honestly just really rude. It was like someone trying to ruin Target for me. Toddler Andi Jane tried to do that. Multiple times. But we survived and Target is still my happy place. Friday has once again became my happy day. 

Friday April 10th: Lily was on Bi-pap and still not awake the previous night/early morning they did some deep suctioning and got some gunk out, she would wake a little and appear to be in pain. Here was my Facebook post after morning rounds:

Day 4: still in PICU over looking this great reminder every day to have HOPE. She got some deep suctioning last night and got a lot of gunk out, she starting showing signs of waking up and pain (good and bad) and is getting pain management without too much sedation. Still sleepy but way more active today, trying to suck her finger (so Lily!) Our plans for today are blood transfusion, feeds via NG tube, EEG, PT 😁, her drain in her back already came out and we are trying to get her off bi-pap. Busy day but if all goes well tomorrow we will move up to rehab floor! Keep flooding heavens gates. He is hearing our cries and answering our prayers

It was looking like we were preparing for a good, productive day but that didn't happen. Forgive my lack of remembering all that happened I will go by what I remember. It was a whirlwind day, things were nice and quiet, my friend Julie came by, she always makes me smile and I was glad she was there. Not before long AZ Diamondback Paul Goldschmidt and his wife came by. Not sure if you follow baseball or the Diamondbacks but he is a really big deal! Him and his wife were so sweet, he gave Lily a signed doll and posed for a photo. They didn't stay too long because things were starting to feel a little more serious with Lily. Nurses in and out. Team IV team coming in.

Lily's breathing was starting to be more labored. I had mentioned several times, hey let's get that blood going, in my mind I really thought her getting a blood transfusion would wake her up, help her feel better, start breathing better, etc. Let's get this blood! But found out her cross match had expired earlier that morning (EGGUUHFUHFDHFKDJHFKDLKJ!!!) so they had to try to draw some blood for a new one. They couldn't get any blood. Lily was so full of fluid that all they would draw was fluid. We had so many people in the room drawing her blood, then they were listening to her and called for another X-Ray resulting in finding out her lung had totally and completely collapsed, Gone. Dr. White showed us the X-Ray - only one lung showed up. 
Then flipping Adrian Gonzalez came in our room! Super star MLB player Adrian Gonzalez! It was the craziest thing. He just stood in the back with our friend Brian and hung out while this team was working with Lily. I remember the Fellow Dr. Nelly came in and got the blood we needed and things calmed down for a bit. Brian and Adrian were about to leave when Brian asked if we needed anything and I just said I need Lily to get better. Desperate and unsure of what was going to happen next we all just put our hands on Lily and prayed. I can't remember the prayer. I just know I felt some peace. A calm before the storm looking back now. It was a surreal moment.



By then we had a room full of visitors, both Grandmas, my sister, my aunt Gloria, so when our dear friends Paul and Melinda came in with lunch and Nurse Gina said "no more people in this room!" I grabbed Andrew and asked Paul and Melinda to sit outside with us. They brought us Pho and it was good. My stomach hurt but it was Pho. I had to eat it. We sat and talked and laughed some and I think God gave us that moment to breath life in because when when we went back into her room I freaked out. The transfusion was going on and she was shivering, shaking really bad. (not from the transfusion, just sharing all that was happening at that moment) I said she must be in pain, get her meds, but they didn't want to give her meds that would sedate her anymore so I said please just give her something, she had a fever and her breath rates were in the 60's and heart rate was in the upper 160's and she was working way to hard to breathe. 
Also after asking multiple times if anyone thought possibly the reason she wasn't waking up could be due to her being in some sort of status epilepticus they finally brought in an EEG machine to find out. So this guy was doing an EEG while Lily was laboring to breathe and was shivering and I thought Andrew was going to have a heart attack. Dr. Nelly came in to say she is struggling and will probably need to be intubated but we can wait for the EEG to be done. That was the longest 20 minutes ever. I knew I trusted them, but watching her struggle was excruciating! We knew she had to intubated and actually welcomed it. We couldn't watch her any longer. 
Here was the update I put on Facebook:

Unfortunately Lily had a lung collapse and required her to go back on the ventilator. Most of our big day goals went down the drain. But she did get transfusion and an EEG to check if there is any seizure activity. Praying for a better tomorrow

After the EEG we were kicked out of the room and we paced outside her door as they intubated her for the third time since Tuesday. (During surgery she was intubated, extubated after surgery, re-intubated in PICU Tuesday afternoon, extubated Thursday and then re-intubated again that Friday - 3 times) later that day/evening they put in a picc line so we wouldn't have to deal with her being a pin cushion anymore. She had to be given a paralytic drug twice that day, once to be intubated and again to place picc line. Not helping the whole she's still not waking up yet situation. 
My last post that night:

We can breathe easier now that she is. It's taking longer than we thought but our comfort comes from knowing he's got her in his big hands


Probably not too surprising to know Andrew and I both refused to go home that night. I remember our nurse Megan coming in that night and seeing her sad face as she looked in on our room as she walked by and saw Lily re-intubated. That nearly broke me. I spoke with Mel on the phone and she prayed with me. God carried us through the worst day and we came out alive. Not well. But alive. 

Saturday April 11th:

PTSD. That's all I have to say. All that was on her agenda that day post rounds was rest. Heal that lung. Then they decided to do a longer video EEG because as I suspected they saw lots of seizure activity on the short 20 min EEG and wanted a better look at what was happening neurologically. My mom brought Andi and Oliver up and it was nice having a break with them. We went to the Zone and played games, did some crafts, ate in the cafeteria. Andi gave Lily some sweet love and helped bump up Lily's super low blood pressure. Oh and our friends brought us the best tasting Pei Wei I had ever tasted. In my life. 





Amongst the baseball players visiting us, we also have a good friend named Josh Havens who is in a band called The Afters and at his concerts during this time he was saying a prayer for Lily and asking his fans to be praying her her. And on Sunday morning our friend Paul lead a prayer and our entire church prayed for Lily to wake up. Guess what day Lily woke up? He answers prayers friends. He truly does. 

Sunday April 12th:
Here is my FB post after rounds that day 

PICU day 6 (long) update: this morning Lily woke up and for the first time looked like Lily behind those beautiful blue eyes. EEG confirmed that it was Lily finally, the last couple days she was having sub-clinical seizures (as I expected) and thank God the PICU Neuro knows CDKL5 and knew that even though she looked like a disaster going on in her brain he chose not to put her into a medically induced coma (which is often what they do for sub-clinical status seizures) he let her ride it out and this morning she woke up and her EEG was the best yet so it was "Lily normal" Amen! So that is great news! There is also some unfortunate news and that is her lung that collapsed on Friday was looking better unfortunately now looks worse today and it is due to a large amount of fluid as in she gained almost 16 lbs since pre surgery so poor girl is filled up and that is bad for a hurt lung so today's plan is to get the fluids out, give her breathing treatments and manage pain. She has been febrile at night but cultures have all been negative and we are hoping it's just due to lung issues but treating with antibiotics to cover it all. Tomorrows X-Ray will tell us what's our next move regarding her lung and respiratory issues. She's still on the vent, she has the folly out, she is getting feeds via NG tube, she hasn't had a fever since early this morning and EEG is off her head and her hair is pretty again - of course least of our worries but it's a small comfort for this mama. We never imagined being still in the PICU on day 6 but we are thankful for the wonderful care she is receiving and all the life rafts that are being thrown to Andrew and myself to keep on swimming. All those prayers are heard and she will be OK. I can finally comfortably say she will be OK

They did a Bronchoscopy that day and said there wasn't too much in her lungs so that was good. Her fluids were all around her. She wasn't still passing any tests to get extubated, still too sleepy. They were pumping her full of lasix on the day they removed her folly and that was awful. She was wetting the bed all the time and it was so hard to change her. Oh those days were so rough! We had some visitors, family mostly. The weekend was more on the quiet side.

Monday April 13th:
Our goals were to get her to pee and poop. Andrew' brother Josh and his wife Carrie flew in and spent the day with us. Carrie was a huge help to me (poor girl) as we were trying to figure out how to change her diaper and not have pee and poo everywhere. And also not hurt Lily. Not fun. At all. But she was going and going a lot and she was loosing the fluid built up. Also that Monday Lily and Andi's youth Pastor, Matt, came by with our friends Josh and Cara and they laid their hands on Lily and prayed with us for her.

I'll stop here. I'm tired. Should be able to finish up the rest in the next post. Things finally started moving in the right direction. We had so many people near and dear to us visit, send gifts, send cards, our neighborhood started up a collection of gift cards for our family, people dropped off amazing take out, brought up Starbucks, called us, texted us, messaged us, people were our jam during this season. I would have told every single person not to come. Not to bring anything. Not to give us anything. So I am glad they didn't ask me. Or they did ask me and told me to knock it off when I said no. The time was excruciating. Painful. We didn't even have the TV turned on until the next Tuesday. If you know me you know I like my TV. If anything tells you how worried we were that would be it. No TV. The time was awful but what I remember was how held up we felt. I can't imagine walking this journey without the people God purposefully placed in our path.
I'll finish this up soon.
Thanks for hanging in there with me and writing this. It is not my best writing but I am OK with that. It is serving the purpose.

Thursday, July 2, 2015

We Interrupt Your Current Program....

So I am sitting in the hospital bedside with Lily. Currently. Like right now. I thought hmm I have time I could do my next post from spinal fusion, but I thought nah. That would take way too much energy.

So I am going to write about this hospitalization. Like the one going on right now.

Yesterday when I came home from work Lily's caregiver Marrisha said she had a couple seizures and was shivering and wasn't eating. She wasn't Lily. I touched her head and she was on fire. She was running a fever of 103.2! Yikes! I gave her fever reducers and put her on the couch and she flinched whenever I touched her, even when I sat on the couch next to her. She obviously wasn't feeling well. We were conflicted with what to do. If it were our other kids we'd ride the fever out a little bit at least. With Lily we don't like to ride anything out at home. So I had to run the kids to karate and drop Andi off at church, then Andrew calls and says I think we need to take her to the ER, now. He says her tummy has a lump on it and it is obvious her pain is all localized in her tummy.
Thank the good Lord for our friends/neighbors who took the other 2 without a blink and we rushed Lily to a near by hospital, Mercy Gilbert, that just recently added a Phoenix Children's wing. ER was packed but they got her back and in a room quickly. She got X-Ray, cath for urine sample, an IV placed, blood drawn, a CT-Scan and diagnosed and treated for UTI within 3 hours. It was quite impressive.

All the while my most favorite night of the month was unfolding... book club. Waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
(that's my selfish toddler pouty self letting it all out)

And she got admitted. For a UTI. Ugh. She needed the big gun antibiotics and by 10pm her and I were once again shacking up in a hospital room.

This morning two sweet Doctors came in and said she was really constipated and has an impaction, that is probably why she got the UTI. It is a double edged sword. Poor girl. I had suspected possible UTI because her urine was strong smelling, but never showed any other symptoms so I was just trying to give her more fluids. But I was wrong. Should have called the Dr. sooner. Some times I feel like I should be fired. Life is so busy, I forget what day did Lily poop, how often did she pee? Drink? The parenting self doubt party bus sure does strike and hard when you are already feeling down doesn't it. I should have done better. All I can do is try better from here. And here I am getting non judgmental (at least I hope so) support and help with this messy process and I am taking it and just accepting this hospital stay (that had me missing my book club and leaves 4th of July in Greer up in the air) as God's interruptions. I'm busy. As much as I vow to slow down, I don't. Every day I'm hustlin. Really maybe less gansta as some hustlers, but I really feel like I'm always hustlin. I want every day be cuddlin. Not hustlin.

Don't get me wrong. I started this day GRUMPY McGrumpy Pants! For sure! I actually was 2 seconds short of posting this status "Can I just not have to deal with people today" I was not feeling anything devine about this cold room, enemas, miralax, poop everywhere, alarms beeping, IV's flowing day. Not at all. But I'm here regardless how I feel about it. Andrew took the kids up to Greer, we will hopefully join tomorrow (??), I already set up a dog sitter for us so I don't have to worry too much about the animals at home. It's OK. It's OK. It's OK. Breathing that in and out. Sometimes this life can really wear on me. OK a lot of times it can. I feel like a martyr at times just giving up all I have to everyone and when I do it with a bad attitude what is it all for?

Lily was given to us, God knitted her in my womb. He knew every seizure she would ever have. He knew we'd be sitting here right now. He knows all and he knows me and for some reason he thought this precious girl would belong to me because he knew me too. He knows the selfish, grumpy, I don't want to deal with any people, me, but I guess he also knows the me that could see his interruptions in my life and recognize them and find goodness in them and I know he is telling me I am doing the best I can for her and I will continue to do so.

Currently she is sleeping after a seizure, fever has stayed away, tummy is still tender, swollen and full even after 2 enemas, but I have been reassured she isn't so bad she will require surgery, so that is good. I don't know what the plans are for tomorrow, I know what I want those plans to be, but that doesn't matter. I am trusting this is where she needs to be and will take the advice and care here they have for her and we will go from there.


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