It has really been a rough couple of months.  I sat in my office tonight after another stressful and nonstop day, and I looked at the piles and piles of paper that I need to start to organize.  Much of it has to do with Hannah but not all of it.   I would need about 24 collective hours just to get that organized (and that doesn’t even count the other rooms that still need unpacking and organizing).  Each day more piles up as more comes in.

Our insurance company extended our home nursing by a few more days.  Basically starting the 7 days over once she was discharged.  But it is not enough.  I’m really terrified as to how we are even going to exist without any nursing help after next Wednesday.  Hannah is such a constant.   She can not be left alone for more than a few seconds.  With her movement disorder and her body’s lack of overcoming the movements, she is at constant risk for aspiration, choking, or other issues — like when she throws up from the rotavirus, we have to make sure her head it turned to the side so it comes out and she does not choke or aspirate.  Her G-tube is very slow healing so we have to make sure that she doesn’t wiggle out of her infant bouncer and knock it out (it is too fresh for us to put back in on our own yet).

Hannah cannot do anything on her own anymore.  She can’t sit up.  She can’t hold a toy.  She can’t even keep her mouth closed unless she is sleeping.  Depending on how far away she is from her next Klonopin dose, she may even not be able to keep her pacifier in her mouth.  It is absolutely heartbreaking.  Hannah’s body is just a shell of what it once was.

The worst part is nighttime.  I don’t like sleeping now.  Her crib is in our room, but she only sleeps for a few hours and then lies awake squirming in the crib, her body moving constantly so she can’t go back to sleep.    Even as I am typing this, I hear little cries from the crib because she is awake, and I have been typing in this paragraph for over 10 minutes already after going back and forth.

Night nursing is an option for us during these 7 days.  But then we would not have any day nursing.  Without day nursing, Ethan and Abigail would be pretty much pushed away because Hannah is that much of a constant.   We decided that we had to have day nursing just so we can spend a few hours with Ethan and Abigail, just to try and give them some sense of normalcy.  Not much, but some is better than none.   It is another horrible catch-22.

What is going to happen when our 7 days of nursing is over though?  I applied for Medicaid through the Katie Becket option (similar to Texas’ medically dependent children’s program) but that could be up to 9 months.   I’m really nervous about how we are going to survive as a family until Hannah can become at least somewhat independent, even just for 5 to 10 minutes at a time without having to be monitored.   I have a call into our case manager at Aetna to start the appeals process, but I am not expecting much since their “rules are clear.”

So here I am at 1 am, listening to Hannah awake in her crib.  She is in a continuous feed right now through the night, so just taking her out of the crib is not an easy option anymore, especially since she is tied to the trach collar as well.

I guess I am just very angry right now.  Incredibly, incredibly angry.  I’m angry at the doctors at TCH for oversedating Hannah to the point where she may have lifelong significant neurological damage that was NOT caused by her Gauchers.  I’m angry every time I see that trach in her neck because it represents that anger that she she was oversedated.  I’m angry that my husband was laid off and is still unemployed even though he has sent out over 150 resumes.  I’m angry that I can’t get my house in order just to feel some sense of normalcy.  I am angry that we keep getting hit with one thing after another (like Daddy’s car not starting and needing to go into the shop tomorrow and Abigail’s double ear infections).  I’m angry that I can’t spend time with Abby and Ethan just “being” because there is just no time to do that.

Most of all, I am angry at myself for letting the doctors at TCH do this to her.  They did not do it on purpose.  But I knew that it was just too many medications.  I know her metabolism from her Gaucher’s made her difficult to sedate, but I just feel like I should have reached out more to someone, I have no idea who.   I feel like I have let her down, let all my kids down.

I know it could be so much worse for us.  I do know that.  But damn do I wish I could have my Hannah back to the way she was.

Hannah has been in the hospital since Saturday.   I just talked to Daddy, and she has been doing really well over the past two days!  She is tolerating her feeds well, she is not throwing up anymore, and she looks good.  Even better, she is almost done with the Ativan withdrawal!

As for me, well, her virus got me as well.  I spent the last 24+ hours pretty much asleep in bed, dealing with the same symptoms she had (just not as severe as she had!).   I think my body just has been so exhausted over the past couple of months, not getting any real sleep, that it just took hold of the opportunity to get sick and knock me out.    Even though I still have the “symptoms,” I am mostly just incredibly sore all over my body.

The worst part?   Kenny, one of our dogs, got out yesterday morning, and I got a phone call from a walker who found him about 1/2 mile away from our house!  He met me at the corner of the main street, and I was so dang appreciative.  As soon as he was out of site, I threw up all over the sidewalk, nice huh?  I’m so glad that it was really early in the morning because I didn’t see any cars!   Glad no neighbors saw me walking back either, would not want to meet them this way!

Daddy has been with Hannah for the past 36 hours, thank goodness.  I really, really hope she can come home today.  She has her first Cerezyme treatment tomorrow with a GI followup on Thursday and Neuro on Friday.  Not to mention, Pulmonology on Monday, and meeting our new pediatrician on the 16th!   She will definitely be “monitored.”

Yesterday was very rough.  Quite a few exploding diapers with water diarrhea and a couple of times, she spit up what she was being fed.

Our day nurse yesterday never commented on it, and looking back, there were so many red flags that he should have caught and should have sent us to the ER immediately in the late morning after what we had been telling him was going on.  That being said…

Last night, we were giving her dinner through her Gtube.  About halfway through (about 100 mL over 30 minutes), she spit it all back up.   She became pretty lethargic after that.   It was at that point, we decided to get her to the ER.

Once in the ER at Sunrise Childrens (where we were just discharged from 5 days ago), they took her into a room immediately.   She was dehydrated, and her belly was quite extended.   The doc did a full workup on her including CBC, metabolic panel, chemistries, etc., as well as getting chest and abdomen xrays to see if there was a bowel obstruction causing all of this.   She also had a fever of 103.2, so she was given tylenol.

We kept bringing up the Ativan withdrawals, but everyone we talked to did not think it was related to the ativan.  In the ER room alone, she had 4 exploding diapers.  It was almost a joke because we kept having to get a nurse to help us change the linens or get new blankets or diapers or something.  Thank goodness we brought her meds because we were able to give her 9 pm and 11 pm doses on schedule.

Even though Hannah’s chemistries were relatively good, because of her condition and just recent discharge, she was admitted last night for IV fluids and bowel rest.   Her admitting diagnosis was “viral gastroenteritis.”

After getting settled in a room back on the 4th floor around 2 am, she ended up with one more exploding diaper.  She woke up at 3:30 am, completely awake and restless.  I stayed up with her until 6 am, but finally I had to wake Daddy up at 6 am to take over because I just could not stay awake.

When I woke up around 7 am, I overheard him talking to the residents about when her last diarrhea was.  Apparently the resident was pressing on her belly, and sure enough, another exploding diaper!   It became a very easy question to answer at that point.

What was a wonderful surprise was that after that last exploding diaper, she crashed.  Peacefully asleep for almost two hours!  Obviously her stomach was really bothering her all night long.   She had one more little diarrhea diaper (didn’t explode), and that was sent off for cultures.   After that, she napped for more than 3 hours.  This is most she has slept in weeks!

Sure enough, the “rapid culture test’ came back rotavirus.   So we just have to “ride it out” with IV fluids, bowel rest, and to try and get her fever and heart rate down.

The only possible bright spot is that maybe none of this was related to the Ativan after all…. (and yes, we are continuing to wean in the hospital!)

We have been going nonstop since we brought Hannah home on Tuesday.   We were fortunate enough to get 11-hr a day nursing on Wednesday and Thursday, and we will get more nursing this weekend (8 and 6 hours), and then 11 hours a day Monday through Wednesday.  Then it will be a fight with our insurance company because they only do it to “transition” into the home, but with Hannah’s situation, especially the withdrawals, we need someone here longer.

Nursing has been a godsend to us, and it truly has kept our sanity as we adjust to this new life with Hannah’s new requirements, our new home, and our new city!   We had the same nurse for the first two days, and she was fantastic.  I loved her.  Even better, Hannah really took to her, which was surprising to me because she does not like anyone she does not know!  I watch our nurse with her, and she is so good with her, cradling her, singing to her, and just be very loving to her.

I wish we had nursing today.  But there was a scheduling problem, so we were on our own today.

We started the Ativan weaning process yesterday.  We were at 1 mL 4 times a day originally, and then yesterday we dropped it down to 1 mL 3 times a day.  We think Hannah is having a rough time with it.  She started with constipation yesterday and a bit of spitting up (which is unusual for her).  We ended up giving her a suppository because it had been a couple of days, and she exploded with success.

Today, she had three exploding diarrhea diapers, the last one this evening the worst.  She is also spitting up some, and her stomach is getting more.  Tonight, after her 9 pm meds (the same ones we have been giving every night for a couple of weeks), she threw them up about 2 minutes after we gave them to her.   I’m nervous about how much of her meds came back up because her chloral hydrate, keppra, and klonopin were in that batch!

I called the nurse on duty, and she gave us some suggestions to get her through this period if it is withdrawals, such as adding pedialyte instead of free water and how to look for signs of dehydration from the diarrhea and vomiting.  We are also to start her meds an hour early tomorrow morning (which is a duplicate of her evening meds).

I hate watching her go through this.  We don’t know if it is withdrawals for sure, but it seems to match everything we ready about Ativan withdrawals.

And as I type this, we just finished cleaning her up again after another exploding diarrhea episode.  Fortunately, Daddy just came back from getting the Pedialyte!

Argh!  This just sucks.

Okay, so we actually got discharged yesterday, but it has been nonstop crazy here!

I will elaborate more later, but we are figuring things out here.  Lots of follow up appointments to be made.  Lots of supplies to be organized.  Thank GOODNESS for home nursing and our 12 hours a day for the next week (unknown what we get after that) because Hannah can only either be held or lie on the floor and have to be watched. 

I’m so glad to be home, but wow, I feel like this is a whole new world now with all this medical equipment and living by a clock for medications and things that have to be done!  My mind is racing a thousand miles and hour, and even trying to write a coherent blog post is difficult LOL.

But, after 44 days in the hospital, Hannah is finally home!!!!

Now that we have been here for over 24 hours, we have noticed a huge change in Hannah’s personality.  She is just full of life now.  She smiles a lot at us, she cries when the nurses come in (like she used to cry when people she didn’t know well came close to her), and she actually sat and watched the entire 22+ minutes of Mickey Mouse Clubhouse — twice!

They brought down her pentobarb yesterday to the unit of 4 (not sure of the dosage, but we started the weaning process at 10).  She still has bouts of being miserable because of the withdrawals, but she gets quite a bit of benefit from Tylenol.   We are going to go down 1 unit every day of pentobarb until weaned off that.   Then I believe we start the Ativan wean and finally the nighttime chloral hydrate dose (which helps get her to sleep at night).

We stumbled upon a wonderful change in that Hannah has been dealing with a lot of gassy issues since we started feeding her via Gtube and even, to a lesser degree, before her hospitalization.   It got to the point that we had to vent her tummy with her Gtube after every feeding just to relieve the pressure (Mylicon only helped a bit).

So when we got to Vegas, they did not carry the formula that we had been using (Compleat Pediatric).  Instead, they started her on Vital Jr. nutrition, their Gtube formula (nonflavored).  Her gas has disappeared!!!  We have tried venting her a few times, and there is hardly a bubble to come out!  We know now that it was the previous formula that made her really gassy (the same one we used in her bottles before all this started).   Fortunately, we only have a small number of cans left here (that we will keep as an emergency), but I think this “stumbled upon” change has had a huge effect on her comfort level!

Hannah’s chorea movements are still improving.  She finally is no longer pulling out her hair.  Up until yesterday, her movements were such that her arms would flail to her hair, and she would grab on to it (because she likes to try and grab hold of things, especially our fingers).  But because she did not have control of her grasp reflex, she could not let go of her hair, so she would end up pulling out little clumps of hair when her movements were really bad.  Yesterday, I noticed when her hand went into her hair, she grabbed it, but she was able to let go before pulling it out.

So the only areas of concern we have to watch for are the withdrawal symptoms, which we can better control at home by keeping her busy by the kids and our extended family, her tachycardia (heart rate averages 150 to 160 when awake and napping, but drops down to about 110 when deep sleeping) related to her withdrawal and high metabolism, and getting her going on PT and OT to help her regain the strength and skills she has lost (which will be set up for home by Case Management).

The amazing news is that they are talking about discharging her tomorrow or Tuesday at the latest (depending if everything can be organized in time for Monday)!   Everyone here feels that she will recovery more quickly being at home in a normal environment that being in a hospital bed, especially since she can be closely monitored with Home Health nurses and many followup visits to various doctors.  So, orders were being prepared all day today for medications, Home Health nursing, multiple specialist and pediatrician visits, and we will be working closely with the case management specialist on getting Hannah all the equipment we need to bring her home.

Hopefully, hopefully, hopefully, we can bring our baby home!!