At the end of Hannah’s first full day of hospitalization, I will admit that I am incredibly worried, as her condition has worsened and become more serious since she was admitted.

We got to TCH’s ER around 10 pm last night.   We spent 9 hours in the room there while they worked on her and eventually waited to be admitted.  During this time, Hannah was just inconsolable.  She would not lay on the bed, and she would only lay in my arms.  But even then, she was thrash around because she was just so uncomfortable.  She had not really slept in 2 days, so we knew she was exhausted.    They started her on fluids, ran some bloodwork, and she started having a couple of breathing episodes there when she started hyperventilating and turning blue when getting upset.    During these episodes, her oxygen sats dropped into the low 80s.  But she was definitely stable enough to be moved upstairs.

Since we have been on the floor, Hannah has been seen by over a dozen attendings, residents, and students.   We have a nurse right outside our window, which has been really helpful.

Most of today has been a blur, so for now, I’m just going to copy/paste my facebook updates of how today played out.  When I get time in the future, I will write it out more detailed.

Last night, 11:50 pm
Sitting in the main waiting area at TCH with Hannah, who has a nasal cannula, pulse ox, and 2 IVs with over 50 or so sick kids because there are no rooms available. I’m one pissed off mommy!

3:00 am
Waiting for chest xray #3 today, concern now she aspirated during seizure. Also waiting for a room upstairs because they want to admit her.

5:37 am
It is 530 am. Do you know where Hannah’s room is? Neither do I. Miserable night in the ER.

7:30 am
Finally in our room at TCH. Hannah is finally sleeping after being inconsolable all night long in the ER. Waiting to see the doc. No idea what their plan is.

11:25 am
Hannah just had her first racemic epinephrine treatment. lots of docs and lots of conversation. seizure most likely related to hypervent episode at home and lack of sleep for 2 days. still having cyanotic episodes when she gets really upset. was told to plan to be here anywhere from 2 days to 2 weeks.

3:30 pm
Looking at a sleeping Hannah running oxygen at 99% on room air. considering she was at 90% just 7 hours ago, requiring oxygen, this is a beautiful thing!

4:25 pm
Didn’t get racemic epinephrine treatment in time. Another seizure. 10 docs outside deciding whether or not to transfer her to PCU. Will probably be loaded up on antiseizure meds until we can get her through this virus. Then reevaluate. Seizures still considered secondary to virus issue.

7:14 pm
Staying on the floor for now. Will probably be moving to PCU if another seizure happens. She is sleeping comfortably on 1-liter of oxygen on cannula, loaded up on two seizure meds. Big test is what happens when she wakes up.

8:20 pm
CT head scan done just to rule out ‘any surprises.’ When she is sleeping, her breathing is wonderful. When she wakes up, she can’t breath, becomes hypoxic and cyanotic.

45 minutes ago (10:45 pm)
Just had another racemic epinephrine breathing treatment. She has so much difficulty taking breaths when she is awake. Almost no aeration at all. Oxygen has been a lifesaver, as her sats drop into the 70s very quickly, but she passes out after she stressed out so much from trying to breath. But when she is sleeping, she breathes wonderfully. Starting a new drug in a couple of hours to help thin out her secretions.

As today progressed, Hannah’s condition has worsened.  We went from an inconsolable child who was just having gagging problems with her respiratory problems to a child who cannot even breath when she is awake.  Seriously, she has difficulty even taking a breath.  It is heartbreaking to see.

I hope tomorrow brings the beginning to healing for her.  I miss my little girl.

I’m sitting here at Texas Children’s Hospital, 10th floor.  Next to me is my beautiful little girl, Hannah, who is has an IV going in each of her hands, an oxygen mask over her face, an EKG machine and pulse oximeter machine going, two bags hanging from the IV pole, and a separate box on the IV pole for administering medicines.    She has been passed out for most of the day, but when she is awakens, she does not even recognize me or respond to me.

These past 24+ hours have been a true nightmare.

It all started 4 or so days ago, when she got a runny nose, which turned into her having a lot of trouble sleeping due to congestion.  She would sleep for 5 to 15 minutes, wake up gagging, and then go back to sleep a few minutes later.  After two nights of that and a rough time at her infusion on Monday with gagging on her secretions, we saw Dr. Bhakta, our pediatrician, that afternoon.

Hannah’s lungs sounded clear, so we thought it was an upper respiratory problem.  He gave her an albuterol treatment at his office, which went fine.  It was then off to get a chest x-ray to rule out pneumonia, especially since she is at high risk for aspiration pneumonia because of her nGD.  Got a call from Dr. Bhakta a few hours later saying that her chest x-ray was clear and to continue on the nebulizer treatments.

About 6 o’clock, Daddy and I started giving her the treatment.  In true Hannah style, she fought the treatment and started throwing a tantrum, getting red, and she started to hyperventilate.

Then, her whole body started to shake, she went rigid, her face was turning blue, and became completely unresponsive to us.  Even with our oxygen at home, she was still having this episode.  About 3 minutes into it, we called 9-1-1.  The ambulance arrived in a couple of minutes, and we went off to our local ER.   In the ambulance, her oxygen sats were only in the 50s, and they felt she was having a seizure.

We got to the ER, and that is where it all became surreal.  There were about 8 or so medical personnel working on my daughter.  By this time, her lips had started turning grey, and they were all doing dozens of things.  I kept hearing orders being given for blood work, different drugs, oxygen, racemic epinephrine, IV placements, pupils, neuro exams…so many things going on, it was just hard to comprehend.  I remember standing there and trying to find a place for me to fit in next to the bed by her face so I could just touch her face.

During this time, her venous blood gas came back with her CO2 at 127.  Way too high.  They wanted to intubate her.  I begged the ER attending to please strongly consider the ramifications of doing this, and I explained to him how children with nGD have a much more difficult time being extubated than normal kids.  He was very understanding, and he was willing to give her 30 minutes to see if it would go down.  He wanted it under 100.

At the 30-minute mark, it was 119.  During this time, I called Dr. Roy, Hannah’s ENT, on his cell, and I asked him to talk to the ER attending and if he felt that it was justified for Hannah to be intubated, I would do it.   He did just that, and he and Dr. Roy both agreed to give Hannah some more time to get it down.   It was after this that I found out that Dr. Roy was not even in town, but I am so glad that he was there for us.

So 30-minutes later, Hannah was doing much better.  She was postictal from the seizure and from the Atival and other seizure drugs she got.  But she was comfortable, and she had good color.   Best of all, her CO2 was down to 57.  Still high by ‘normal’ standards, but it was enough that Hannah did not have to be intubated.

It had already been decided early during the ER visit, that Hannah would be sent downtown to TCH to have a neuro workup to see if we could get more info about this first seizure and because her seizure lasted more than 15 minutes long.   The ambulance service picked Hannah and I up, and we headed downtown, through a thunderstorm, to Texas Children’s Hospital.

(more later, I’m tired.  If you are on facebook, then you are already up to date)

Last year at this time, my heart was not into Mother’s Day.  Hannah had just been diagnosed a few months earlier, and we were still coming to terms with it.  We were living month-to-month, not even knowing if she would make it to her first birthday.   I just did not feel the joy of Mother’s Day last year.

Today was different.  Hannah is more stable than she was last year.  I feel more confident that we can start planning her second birthday party than I ever was planning her first.  We have a better grip of her medical issues and her developmental delays.  We may not like them all, but it is better to know the facts than wonder and not know.

I got up at 8:00 am today.  Abigail and Ethan came into my room (Daddy was already downstairs with an awake Hannah since 5:30 am) and brought me their school-made presents and cards.  I loved it because they were so proud of them.  Daddy brought Hannah up, and all five of us just spent time on the bed laughing, wrestling, and just being silly — being happy!   I loved it.

We were going to head out to the Lake today, but the weather decided that this was not a good plan.  But it does not bother me.  I have my family with me — my three kids and my hubby.    Kids aren’t fighting today (at least not yet), so that is a huge bonus!   But my three kids are all doing relatively well, and I love them.  They love me.

THIS is what Mother’s Day is supposed to feel like!  Just love 🙂

We left for the hospital at 4:30 am for Hannah’s 7:30 am ear tube surgery.   After yesterday’s visit at the Anesthesia Clinic, I felt somewhat confident that everything was going to be okay.  The anesthesiologist I met yesterday agreed that IV sedation was okay for this surgery.

So when the anesthesiologist who was handling Hannah’s surgery (not the doctor we met yesterday) said that IV sedation was not appropriate for this surgery, and that general masked anesthesia would have to be used.  After sharing in detail my concerns, she tried to put my mind at ease that all will be well.

I had to give Hannah her little sedation to make her “loopy” post surgery using a bottle nipple because she does not take anything via syringe or cup without spitting it out.  She was very resistant, but we ended up getting about 3/4 of it into her.   Once it started working, Hannah started getting very loopy and really adorable, almost like she was a bit drunk.

Dr. Roy, Hannah’ ENT, came in and was ready to go.   Hannah was feel pretty good at that point, playing with her favorite toy radio on the gurney.  She didn’t even notice when they came in and took her away from me and down the hall into the OR.  She was transfixed on that radio the entire time!  As for me, I just watched her go down the hall, and admittedly, I was pretty nervous about it.

About 30 minutes later, Dr. Roy came out and told me everything went great!  I was so relieved (that is an understatement!).   He still wanted to keep her overnight for observation just because we wanted to make sure she recovered from the anesthesia without problems.

About 45 minutes later, I was allowed into recovery.  Hannah was just waking up at that time.  She had no problems at all coming out of the anesthesia!  As a matter of fact, about 15 minutes after I arrived, she was playing again with her little toy radio, acting as if nothing was going on.

We were brought up to our observation room on the 8th floor.  The nurses there were so sweet.  Daddy came down to visit with us.  From the moment we got there, Hannah was acting great.  Even though she was hooked up to the monitors, she just played with all her toys, laughed at her Mickey Mouse DVD, and just was acting like a happy baby.  She was eating fine and peeing fine.

It was right before she fell asleep for her nap that I was thinking that if she takes a normal nap and wakes up fine from it, I’m going to ask Dr. Roy to let me take her home instead of spending the night.  Sure enough, after a 2-1/2 hour nap, she woke up, was hungry, played with her toys, and was just her normal self!

I called Dr. Roy, and he came to check her out.  He asked me if I was sure that I was comfortable with taking her home, and I told him that since she took a nap and woke up from it without any issues at all, I really did feel comfortable.

So at 5:30 pm, we were discharged and headed home!!!

It was such a wonderful experience being able to have a procedure where Hannah responded just like a normal child would.  No nGD issues, just normal toddler stuff.  Hopefully this will make a difference in her speech delays and balance issues.  If for some reason it does not, then at least we ruled out her ears being filled with fluid as the cause.

We are here at home, and she is still doing great!

Today, I received quite a few reminders that as bad as I feel that things are going right now, that it could always be much worse.

I found myself worried about a friend whom I have known for about 10 years, a wonderful mom to 3 kids, who lost her home and all their possessions due to the floods in Tennessee.  The pictures are heartbreaking.  They are all safe, thank goodness.   But now they have to break the news to their children that all their items are gone.  Like that, their lives are changed.  They have to start over.

I found myself worried about Bertrand quite a bit during the day because he just was not himself.  His mom, my person, is such a strong and amazing mom and friend, and I know that these new injections they started him on to try and help control his seizures are so tough on all of them.

I found myself worried about Hannah’s birth friend, Charli, who is going to have half of her brain removed in a bit over 3 weeks to try and control her seizures and spasms.  Her mom, who is going through a difficult time as it is, is also such an amazingly strong woman whom I admire.

I find myself worried about Hannah’s local therapy friend, Cooper, who was diagnosed with a severe mitochondrial disorder and who just received a gut transplant last week after waiting on the list for a year.  Now beings the long road to recovery.

I found myself worried about little Olivia, a Gaucher type 2 little girl, who captured my heart with her smile.  A smile that was almost lost to the world due to the progressive nature of this disease just weeks ago.    But I saw a picture of her today, and to say her smile melted my heart is an understatement.

I have so much to be grateful for.   I really do.  And I am grateful.