Archives for July 2010

Today was a rough day.

It started when we found out that the people who put the offer on our Texas house are terminating their offer because they “talked to someone on our street” who told them the reason we had lined our backyard with bricks was to control flooding during the rains, which is totally not true!   We put the bricks around our backyard so our littler dog could not get under our fence.  Besides, who in their right mind would think that one layer of bricks around a yard would even control flooding!

Doesn’t matter at this point, I guess.  It seems as they are terminating their offer, and we have to put the house back on the market.  Too good to be true.

We met Dr. Kami Larsen today, Hannah’s new pediatrician.  She seems like a good fit for us so far.  It was a pretty easy appointment, especially now that we are just in the recovery mood, and we had already seen almost all of Hannah’s new specialists.   She was chosen for us because she has a reputation for being really good with “chronic complicated kids.”

We got our handicap placard today as well.  Dr. Larsen made no hesitation in signing our form.  The part that hit me in the gut was that she said this disability (unable to walk without assistance) is a permanent one.   I was hoping she would be the “moderate” disability, as in 6 months to 2 years.  But in the long run, I guess it is best.  Our handicap parking placard is good until the year 2020.  Yep, 10 years.

I would have never have thought about getting the handicap placard before this hospitalization.  But seeing how weak Hannah is now and with this Vegas heat, we have been dropping her and me off in front of each of the specialists buildings because she just wilts in the heat now.   At least this will save us having to walk with all her accompaniments now (loaded diaper bag, Gtube supplies and trach supplies, and suction machine).  It is no longer just a “pick up and go somewhere” plan now.  We have to bring everything with us.

Hannah had her speech and occupational therapy evaluations a couple of days ago.   Hannah slept through all of her speech evaluation and most of her OT evaluation.  But it was fine.  We mostly talked about Hannah’s history, where she was at, where she is at now, and what we hope to get out of therapy.  They both recommended twice a week, but I am trying to weigh too much therapy plus the 20-minute each-way drive versus not going twice a week.  Plus, not to mention, she also has physical therapy once a week starting this Monday.

Tomorrow is a new day…

We have had some happier news in the past couple of days, and it has been very welcomed, believe me!

First of all, our Texas house is in escrow.  Yep, it was put on the market on Saturday, and we had an offer on Monday.  We countered, and we agreed on a price.   We almost got our asking price!   The house was on the market for only 36 hours, which in this economy is a miracle!   We signed the paperwork today, and the new owners want to close on August 12.  I am keeping my fingers crossed that this goes through because this would save us from having us to pay rent here in Vegas plus our mortgage in Texas.  We were warned it could take quite a few months to get it sold, but nope — less than 36 hours!

Our nursing was extended until August 10th, thank goodness!!   Our insurance company cut us back from 12 hours a day and 7 days a week to 8 hours a day for 5 days a week.  But you know what, considering that we were told that they may cut us off after today, we are ecstatic!!  We will get our favorite day nurse 3 days a week, which is wonderful, because Hannah has really become attached to her.  She is just a great person, and you can tell that Hannah has truly captured her heart!

Yesterday, Daddy and I had a lunch date.  On our own, with no kids.   Our favorite day nurse stayed home with Hannah (after strongly encouraging us to go and that she and Hannah will be fine) and Ethan and Abigail were with my in-laws.  Even though we spent the first 2-1/2 hours at the DMV together, we actually went to Sunset Station casino and had a quiet lunch and walked around for a bit, holding hands.  It had been so dang long since he and I had spent any time together (outside of the hospital).  I think our last date was 18 months ago when our neighbor babysat all three kids!

Also, what is nice about having our nursing extended is that Daddy and I can spend some more quality time together.  If my inlaws want to take the kids for an afternoon/evening while we go out, our nurse can go with them and take care of Hannah, leaving my inlaws to just be able to play with her and have fun as grandparents without having to worry about trach care, gtube feedings, and medications.

Tomorrow is Hannah’s speech and occupational therapy evaluations at My Left Foot Children’s therapies.  It is a local private children’s therapy group.  We still have our intake with Early Intervention next month, but in light of what has happened with Hannah, I think that having more focused and experienced PT (on Mondays) and OT will really make a different right now even if it means we have to drive to them instead of having it at our house.

I have to tell ya, just having our house in Escrow right now and knowing that we have some nursing help for the next 4 weeks has just lifted a huge load off my shoulders.  Of course I’m nervous that the house will fall through, but at least we are moving forward right now instead waiting for someone to make us an offer!

Two weeks from today, Hannah will be TWO years old.    It really is amazing to think how the last two years have played out.

Now more than ever, I realize how age truly is just a number.  Even before this major setback for Hannah, she was not at a 2-year-old level.  I see other kids who are around her age, who are so far more advanced developmentally than she is.   Now, she is even farther behind the “typical” 2-year-old.

And that is okay.   She is on “Hannah’s developmental plan.”   There just came to a point where I just accepted what it was.   The delays are difficult to accept sometimes, I’ll be honest.  I go through spurts of sadness and frustration as to why it had to be this way.   But for the most part, I am at peace with it.

Especially now.  Hannah is still alive.  She fought back from the lowest point (there were quite a few days in the hospital that I begged her to keep fighting because I was so fearful of losing her), and she has come out still fighting.

With her movement disorder, she still tries so hard to do things.   She has even been able to get her pacifier a number of times now.   It is 100x harder for her to pick up the pacifier and get it to her mouth, but she tries so damn hard to get it there, especially with her almost non-existent fine motor skills at the moment.   She still will lay on her back and try and get her arm and hand to  hit the keys on her favorite toy piano just to hear the music.   She tries over and over and over again.

Her birthday is coming up in just a couple of weeks.  Before her hospitalization, we had planned on a small family party with a few close friends that weekend.  However, Daddy and I have decided to wait a few weeks longer for her party, just to give her more time to recuperate.  We owe that to her.  We will still do a very intimate birthday “something” with just our family on her actual birthday.    But we do want to celebrate this amazing milestone with those who care about Hannah — this birthday is a BIG DEAL.

We met with Dr. Maller today, Hannah’s new local neurologist.   She was very attentive to hearing Hannah’s long story, and she seemed to pay attention to all the little things along the way, which I appreciated.  We talked about the oversedation, her Gaucher’s, and most of all the chorea movements and possible seizure disorder.

She modified our current plan of action, and it all makes perfect sense to me, especially after she educated me more on the Klonopin that Hannah has been using to control her movement disorder.  Apparently, Klonopin is another benzo drug, just like the ones we had been trying to wean her from!  Not only that, but Klonopin also increases secretions — not something that makes a lot of sense to give for a newly trached baby!

So she started Hannah on haloperidol this evening – 0.125 mL at night for 3 nights and then twice a day.  This is exactly the same drug that my uncle, who is a pharmacologist, suggested that the docs at Texas Children’s Hospital try to control her movement disorder.   After researching it online, there is a lot of resources that mention it is used specifically as a treatment for chorea.   We have to keep a close eye on her (not that we aren’t already doing so) to look out for side effects.

But the “hope” is that this drug may knock out her movement disorder once we find the right dosage.    If it does help, then we will start to wean down the Klonopin as soon as we are done weaning down the chloral hydrate (which should be in about 10 days).

Our long-term hope is that once all those meds are out of her system then her chorea movements will subside on its own and we can wean her from all medications.

I am to call Dr. Maller in a week to give her an update, and we are to see her again in 2 weeks for a follow up.

Keeping my fingers crossed….

Wednesday, Hannah had her first Cerezyme treatment at the Children’s Center for Cancer and Blood Diseases here in Las Vegas.  We met Dr. Jonathan Bernstein, and I loved the man.  He seems like just the kind of doctor I like to work with — very interested in learning more, outgoing, willing to spend quality time with us, and just a genuine caring man.    That was a huge weight lifted off my shoulders because Cerezyme is Hannah’s lifeline.   Her first LV treatment went off without a hitch.

Yesterday, Hannah had her GI appointment with Dr. Dezenberg.   Our day nurse came with me, and she was a huge help!    After meeting Dr. D yesterday and meeting his partner, Dr. Barron, a few days earlier in the hospital, it was another great “personality” match for us.    He checked Hannah’s G-tube, and he said it was really look great, healing-wise.  He had to burn off some of the granulated tissue surrounding it with some silver nitrate, but since it was slow healing he prescribed us a couple of ointments to get it healing a bit better.

But he thinks that we could definitely start getting Hannah on her tummy again, with monitoring of course!  We also talked about a new feeding schedule since her stomach is still thrashed from the rotavirus and has not been able to keep foods down like she was last week.  So she is going to be pretty much on a continuous feed, 5 hours on with 1 hour off, at a very slow rate until we can build her up again.  So far since this afternoon, she has been tolerating it pretty well.

The rest of our schedule is like this:
Today:  Neurology, Dr. Maller
Tuesday:  Pulmonology, Dr. Parks
Wednesday:  Speech and OT evaluation at a private therapy group
Next Friday:  Meet our new pediatrician, Dr. Larsen
Following Monday:  PT evaluation with private therapy group
Few weeks:  Evaluation with Early Intervention

I’m very interested in what Dr. Maller has to say, especially with regards to this choreathetoid movement disorder.  I’m also need to find time to really start searching out an expert on choreathetoid movements and see what is out there for Hannah because there just has to be something out there that can help her.  If anyone has any suggestions or knows of anyone, let me know!

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.