8 days later and we are back at St. Joes Children’s Hospital in Tampa.
As we have learned the last four months, life doesn’t always go as you plan it.
Rewind to Thursday:
Thursday evening I had to resign from the job that I love due to the continuous care our sweet Lennyn is going to need. It has become clear as our specialist list grows, it will be impossible to maintain a job and her care concurrently.
This brings with it, many emotions. As happy as I am to be able to stay home with Lennyn, I am going to miss my Sunbelt Family. I’ve met some of the best people I know there. It’s extremely bittersweet. I can only hope that as time progresses and we find our new norm, I can return. I love each and everyone of you. My Fabmin family, my EMC, Howard, Kim, Ken, Kelly, all of you guys- this is just a see you later, not a goodbye.
This also puts a toll on our family, as it cuts our bring home income in half. Not the most ideal financial situation to be in with 2 kids and a new mortgage to pay. We will figure it out. Not only do we have no choice but to figure it out, but we always find a way.
We were busy on Friday, running Lennyn around to her appointments for her synagis and helmet fitting. My gal pal Dana surprised us in the morning with flowers and Chik Fil A. It was a good day. I actually had an entire post written out about our Friday adventures but shit hit the fan so it never got posted.
We were looking forward to a quiet weekend at home, with the four of us. Seth and Ava had plans to go to a youth dart workshop on Saturday and I was going to catch brunch with my dear friend, Laura on Sunday. Nothing extreme planned. Goes to show how difficult it is to plan anything in advance these days.
Friday evening came, Seth left for darts, and me, the girls, and my sister were enjoying some takeout. Lennyn was extra alert and a joy to be around.
Lennyn had dozed off and around midnight I woke her up for her feed. Seth was getting in from the tournament and it was all down hill from there.
She felt EXTREMELY HOT, devoured her feed, and cried hysterically if i or Seth tried to put her down.
She was in a sleeper so I assumed she was just hot from that, stripped her down and she seemed to cool down. She was really acting like her belly was hurting so I gave her some gas drops and brought her into my bed on her boppy pillow and we just watched her.
She was extremely uncomfortable and eventually did throw up after I gave her Tylenol for her discomfort and now borderline fever.
Fortunately our pediatrician is open over the weekend and our nurse Jessica got us in first thing in the morning. They did a heel stick to check her CBC level. It was elevated so they sent us back to St. Joes. Ava never made it to the work shop 😦
We were admitted yesterday after spending hours in the ER.
Lennyn is in a lot of pain, pale, lethargic, her heart rate is elevated, she has desated a few times, she has consistently ran a 101-102 fever, and is vomiting. Lennyn is giving her #lennynstrong fight but is tiring.
I’ve spent the majority of the day, bedside. sobbing with her. We don’t know what to do to make her feel better and feel so hopeless. It feels like everything is moving at snails pace and she’s not getting any better. There is clearly some sort of infection brewing.
They have done an X-ray of her abdomen, and MRI of her head (ventricles still holding up), blood work, and an ultrasound.
The ultrasound shows that Lennyn has Hydronephrosis, swelling of a kidney due to a build-up of urine. This can be caused by multiple things. Right now we’re ruling out a urinary tract/kidney infection.
If her urine is clear than we are on the hunt for the infection and the hunt for what is causing her kidney to swell- including a procedure where they pump dye into her urinary tract to see if her urine is refluxing back into the kidney. If her urine is not clear they will start us on antibiotics.
UTI – home Tuesday ish. Clear urine – discharged more than likely next weekend or longer.
It is becoming more apparent that we may be here for our first holiday as a family of four. We are really down about this as we were hosting this year as home owners and both Seths family and mine were coming to spend the day together with us and the girls.
I also miss Ava so much. I feel so bad for her. She misses me so much and I’m so torn. I spent ten minutes on the phone with her this morning and we both just cried. I try to be so strong for her but in that moment of explaining how much I missed her, and how sorry I was that she keeps having to cancel her plans and how sorry I am that I’m not with her right now, it was hard not to get emotional.
Looking for prayers today, and strength, and for both of my girls to be comfortable and know they are loved.
I will keep everyone up to date as things progress over here.
Please pray for our family.