Today was a very busy day for my little girl.

Last night, she was sedated all through the night on chloral hydrate.  At least she got some rest, I guess, and we didn’t have to worry about agitation.

This morning, she woke up and was still very groggy and sedated looking.  I was so thrilled when she let me hold her and cuddle her for over an hour without any fussing or agitation.   Even though she was really out of it, she still put her hand on my chest like she always does.

Around 10:30 am, she had her upper GI and small-bowel follow through.  She had to be resedated because they were concerned with her wiggling and getting upset.

At 3:00 pm, she had a follow up abdominal x-ray.    She was still out from the sedation.

At 5:30 pm, she had her endoscopy.   She was sedated with Propofol (yep, the Michael Jackson drug).

What did we learn from all of this?

• After 24 hours of absolutely no fluid intake through her g-tube, she was no longer in pain.
• Her motility was somewhat slow, but wasn’t anything they wouldn’t see with a sedated person.
• Her upper GI showed everything to be normal.
• Her x-ray showed that she was no longer full of stool or gas.
• Her endoscopy showed that almost everything looked normal, and that she was officially cleaned out of poop.

The ONLY thing that was found was that she had a hiatal hernia, small to medium in size.   Her GI doc doesn’t think this explains the intense pain we had been seeing, but it could explain the increase in reflux lately.

So the plan is that she will have her fundoplication surgery tomorrow (Tuesday), and the surgeon will also take a look at the hernia to see if it needs to be repaired or if she is going to let it be.  When I talk to the surgeon tomorrow, I will get more details, such as WHY they would not repair it.

My biggest concern tonight is that even though she has not had any sedatives for 12 hours (with the exception of a light general anesthesia that “usually” wears off quickly), that she is still really loopy and out of it.  She doesn’t really respond to my singing or stories, but she does look at me when I am doing it.

Her night nurse and I are hoping that we can stay away from any more sedation (as long as she doesn’t get agitated to the point of hyperventilation again).   I really want to see some smiles and hugs before she goes into surgery tomorrow.

I am in need of my “Hannah love” fix.

Hannah is back in the hospital.   She has been here since Friday morning.

She had a rough night with pain the night before again.  She looked constipated, and it seemed like not much came out with the enema.  The next morning, as we were packing up to go to her Cerezyme treatment, she was in so much pain she started to get uncontrollably agitated.

We headed back to our local ER that we went to a couple of weeks ago.   All her initial blood work, urinalysis, and x-rays (chest and abdomen) came back normal.  So I asked for a GI consult (since our GI appointment was almost a week away and didn’t want her to wait).   The ER doc told me the only way to get a GI consult was to have her admitted.

I said, “Admit her.”  We need to figure out why she is constipated so much, why she is refluxing and, in turn, aspirating, and most of all, find out what the hell is causing her so much pain.

It has been a helluva rough couple of days since being admitted.  Our GI doc actually came to the hospital, which was wonderful, and we came up with a game plan.  They gave her an enema, which started cleaning her out.   They also ran GoLytely laxative through her g-tube to clean her out completely.

But that wasn’t the horrible part.  It is the pain.  It has gotten so bad that she gets so hysterically upset that she hyperventilates and has even become hypoxic a couple of times.  At first, the hospital doctor (that first day) didn’t want to give her any sedatives because that causes more constipation.  They let her writhe in pain for an hour, and it was killing me.

Are you frickin’ kidding me?  Sedate her!  Give her relief!  I was so worried about her seizing with a tonic-clonic seizure again.

Finally, I got the nurse to call the doctor that was coming on (who has been her doctor since), and she agreed to put her on a regimen of Versed and chloral hydrate.

So she has been drugged most of the past 2+ days.  We try to give her a chance to relax and be awake when the sedatives wear off, but we only get somewhere between 10 minutes to an hour (if we are lucky) before whatever is causing her pain starts her going.

Our GI doc is coming back tomorrow.  We NEED to figure out where this pain is coming from.   She is no longer constipated (at least her x-ray says she is not), and she is on an open vent on her g-tube so there shouldn’t be any gassy problems.  But what is it that is causing all this pain?

Oh yeah, and then there is the whole fundo versus j-tube situation which I will post about later.  Bottom line, Hannah is having surgery for a fundoplication either Tuesday or Wednesday to help deal with her reflux issue.  But the surgeon doesn’t want to do the surgery until we know what is causing her pains and wants to make sure she can tolerate her feeds when we start her back up (understandably).

I was told today to expect to be here at least another 10 days…ugh.

I just want Hannah to be pain free again.  That has always been our goal with her – happy and pain-free.   For the past few days, she has been nothing but miserable and hurting horribly bad.

Yes, Lion King is one of my favorite movies…

Hannah was released from the hospital a couple of days ago.  It turns out she didn’t have pneumonia after all, but she had trachiitis, atelectasis, and constipation.   The irony is that Daddy and I thought that is why Hannah was in so much pain.  We had even expressed this to the ER doc multiple times.

She is doing okay now.  She still doesn’t seem to be herself yet.  She is running occasional low-grade fevers (under 100.5), and she just wants to be held all the time.  She is also a bit more floppy than usual, but we keep reminding ourselves that she was sedated for 36 hours and having to lie in bed for 3 days.

Next week we see her pulmonologist and we get the process started to see about her aspirating her reflux and other trach/pulmo issues.

The day after we brought Hannah home, we had to put our 14-year-old Beagle to sleep.  We knew she was on her last days for the past six months, but the two days before we had to put her down, she was throwing up a lot of bile-ish stuff often.  She didn’t want to move and slept almost 23 hours a day.  When Daddy brought her in to the vet, knowing what had to be done, the vet said that she had advanced cancer of the liver.

The kids were upset, but we had prepared them that it was going to happen sooner than later.   We also realized that we didn’t give our two dogs (Molly and our 13-year-old spry and active Cairn Terrier, Kenny) enough attention since Hannah was brought home, so Kenny has been reaping the rewards of an amazing amount of attention from everyone.

Then the day after we put Molly down, Daddy had to go out of town for a couple of days for work.

It has been a rough, rough week.  Very emotional.  Very draining.

Here I am sitting in a dark IMCU (intermediate care) room in the hospital with Hannah.   She made it 14 months without a hospitalization admittance, which is amazing considering her disease process.

Diagnosis:  Bilateral pneumonia.  Same thing that initially brought her into the hospital last year and ended up being 6 weeks of hell.

It started early yesterday morning.  She woke up at 4:30 am really restless and uncomfortable.  I figured she was just exhausted because she didn’t get much sleep, so when Daddy woke up at 5 am, he took her into the other room to try and get her back to sleep like he normally does.

But she wouldn’t have it.  She was crying (silent but with tears), couldn’t get comfortable, stiffening up like a board when we tried to touch her, and she seemed to be in a lot of pain which is a first for us with her.  At 6 am, we decided to take her to the ER because nothing was working to try and comfort her.

It usually takes us 20 minutes or so to get to Sunrise Children’s Hospital, which one of the two main Children’s hospitals in Vegas.  That is our “regular” hospital.  But we couldn’t drive more than 5 minutes without Hannah hyperventilating and getting herself incredibly worked up, so we instead drove to our local hospital (where I stayed a few months ago).

When we got there, they saw she was in distress and took her to the Peds ER immediately, bypassing triage.  They immediately worked her up and started loading her up with Motrin and Tylenol because her fever wouldn’t break 102.3 even with the meds.   They did x-rays, blood work, and gave us wet washcloths to try and cool her down.

That was a miserable 4 hour wait because Hannah was just so uncomfortable, and we had no answers.

Then the results came back.  Bilateral lower-lobe pneumonia.  They wanted to admit her.

Once we were able to get her upstairs to a room in the IMCU (not serious enough for the PICU, but more serious than the regular peds rooms), they gave her some Versed to mellow her out.  I was SO thankful to get her sedated just so she could rest her body.

The doctor wanted to put her on a CPAP to help her breathe and let her lungs rest.   She fought that thing like crazy!   They then put her on an IV Precedex sedation drip so they could get the machine working and help her out.   She was doing fine on room air downstairs, which we mentioned again to the doctor, but he wanted her lungs to rest.

For about 10 hours she was on the vent and sedated.  It became a challenge to get her enough sedation to rest (because we know Hannah and sedation don’t mix well), but not too much to lower her heart rate to a dangerous level.  So everytime she would start moving and getting agitated, the Precedex went up.  But then her heart rate would drop into the 70s and 80s, which is very low for her.  Then the vent alarms would go off because her respirations were funky.

So then the talk about adding more Versed or adding Fentanyl in addition to the Precedex started.  It was really stressing me out.  But they were able to keep her sedated just enough so we didn’t have to go that far yet, but we were very close.

Then, around 10 pm, the vent alarm would keep going off, claiming she was having sleep apnea and not breathing.  I mean, we are talking about 25 times in an hour!   Amazingly, we had a dedicated respiratory therapist last night who spent the entire time playing with the vent settings.

It turns out that when Hannah was trached last year, they left a large leak (air around the trach tube so she could still get air by mouth, a good thing since she wasn’t trached because of breathing problems) so that it would screw with the vent settings because vents are supposed to control all air pressure.  But with a leak, Hannah can still get air around the vent pressures.

Finally around midnight, the RT took her completely off the vent as a test and just put on a humidified trach collar (which we use at home) with 30% oxygen (room air is 21%).  Hannah’s breathing stabilized almost immediately because she stopped fighting against the vent.

The RT called the doctor, and he agreed to let Hannah stay this way and keep the vent on standby.

Because Hannah was so much more comfortable without the vent, we were able to actually LOWER her Precedex (never gave her more Versed or Fentanyl), and her heart rate, respiration rate, and oxygen saturations have been doing really well since!

They just came in and did blood work and another chest x-ray.   I don’t know how long we will have to stay here.  “For a regular child” (as the doctor said to us earlier this evening), she could have just a “couple of days” admittance.  But with Hannah, it is a “Let’s see how she does” situation.  Daddy and I are hoping no more than 5 or 6 days but we will see.  Last time, a week turned int 6 weeks because of complications.

But now she is stable and doing well.   Thank goodness we kept the trach because having that airway and access to help clean out the gook in her lungs has been critical!   If she didn’t have the trach, she most likely would have had to be intubated again – and we don’t need that hell again!  I asked her night nurse how she is comparing to a “regular kid,” and she says that Hannah really is doing well.

Daddy and I keep going back to last week’s ER visit.  Did they miss something then?  We don’t know.  Doc here says that it likely could have been a virus then that turned into pneumonia over the week.   Her white blood cells were normal a week ago, but they were 11.4 at Cerezyme two days ago and 18.5 in the ER less than a day later so something definitely hit her hard.

She isn’t out of the woods yet, but she is working towards the right direction!

Yesterday we registered our little miss Hannah for school, officially!

It was really exciting because I kept thinking “Wow, all three of my kids are in this school!”  I never thought this would happen.

Hannah also had a very special one-on-one meet-n-greet with her new special ed teacher, Ms. T, and her class assistant.  The classroom was bright, colorful, and incredibly “preschool-ish” which was exactly the atmosphere we had hoped for.  I think Hannah was a bit overwhelmed and overstimulated at first because she was a bit apprehensive when we walked in the room (It also didn’t help that we had just woken her up from a 20-minute nap when she fell asleep in the hallway.).    Ethan and Abby were so excited to see Hannah’s classroom as well.

But once we took Hannah out of her wheelchair stroller and moved her to various parts of the room, you could see that she was definitely showing an interest in what was around her, especially the red and yellow duplo blocks that she even tried to reach out and play with!!  (Yes, it was at that moment, seeing her try so hard to play that I knew this was the right decision.)

Hannah’s teacher sat on the ground with her, and Hannah surprisingly seemed to take to her within minutes!   Hannah sat on her lap, and she talked to her so sweetly.  Ms. T. even put Hannah on her (Hannah’s) knees to sit, and Hannah used her arms to balance on Ms. T’s legs.  Within about 10 minutes or so, Hannah was already snuggling up in her arms.  We just had to laugh – that’s our Hannah, the cuddler!

We talked about Hannah’s goals, how the class would work since her goals are obviously much different than most (if probably not all) of the peers in her class (including a few typical development peers).

But as I reiterated to Ms. T., our goals are for stimulation and socialization.   We want Hannah’s quality of life to be the best it can be.  I know it will be a rocky start until she gets used to it, but if today was any indication, I think this atmosphere (4 days a week, 2-1/2 hours a day) will be a much welcome and fun change for her.

We also talked about nursing, which we are working on.  We already knew that Hannah was one of the more medically fragile children in the school district, and we know having a dedicated nurse for Hannah will also put the teacher at ease so she doesn’t have to worry so much about Hannah.  We want nurses that Hannah is comfortable with, obviously.  The school has even agreed to let me come in and be Hannah’s “nurse” in the event we don’t have a nurse show up or can’t make it.

Daddy and I walked away feeling really good about this.   I feel this is the right decision for her.  We owe Hannah every opportunity she is capable of handling, and if it proves to be too much for her, then at least we gave it a shot.   But with the people we met today (principal, office staff, special ed teachers, school counselor, etc.), I know we are in the right place to try.

September 26th is when school begins for Hannah.

Oh, and did I mention that she has to wear a uniform like Ethan and Abby?   I love it 🙂

 

Hannah is doing better than she was a few days ago.

We haven’t seen a fever in a couple of days, and she is not spitting up anymore (perhaps it wasn’t reflux related after all?)  Also, the hospital lab called me yesterday to tell me that her trach culture grew out nothing out of the usual, meaning definitely no trachiitis.

She is still definitely worn out and drained.  Took 3 naps today (even though the second one was only about 20 minutes long because we had to wake her up).  Doesn’t want to play much at all and just wants to cuddle.

Perhaps she just got a stomach bug?  Would explain the spitting up (and eventual aspiration of what she spit up), would explain the fevers, and would also explain the uncomfortableness she has felt when she was being fed.  Of course, we have no way of knowing for sure.  But then, can you get a stomach bug if you are fed the same formula every day?

Tomorrow we meet with her pediatrician to do a follow up just to make sure she is still ‘on the mend.’