Archives for May 2011

Our house is about 75% unpacked and organized at this point (most of the remainder of the stuff is in our bedroom).  If it wasn’t for my in-laws, we would probably be at 20% unpacked!   We had a nurse on Saturday for 8 hours, but we haven’t had a nurse since then so either Daddy or I were on Hannah duty, which makes unpacking and organizing very slow.

We really like our Saturday nurse, which is usually our Monday nurse, but Saturday she definitely was not on her A-game with Hannah.   Constantly texting, watching Law and Order and other not-for-children shows on the television when she should have Hannah type shows on (we let them watch what they want when Hannah is sleeping), keeping Hannah on her iPad videos for much of the day, etc.   She even fell asleep on the couch holding Hannah while Hannah napped — all of this in front of my in-laws and us!   I know I need to confront her on this, especially if she is to become a 4-day week nurse for us but I was just so not in the mood to do it that day.

I got a call from the ER that Hannah was in last week.  Apparently her trach cultures grew out Staphylococcus aureas AND Haemophilus influenzae this time.  A few weeks ago, it was just the staph aureas.  I guess it would be safe to say the last dose of Cipro didn’t knock it out of her and then she got the virus on top of it.  Needless to say, she has spent a lot of time just cuddling and sleeping.   Her demeanor is better than it was last week, so that is a good sign.

It also seems to be a good sign that her O2 saturations overnight are somewhat better.  We are no longer seeing anything in the upper 80s anymore, but more in the low to mid 90s while she is sleeping.  Her respirations also seem to be more regular however she does still have spells of what is either sleep apnea or something else.  They only last a few seconds, but it is still something I need to let her pulmologist know on Wednesday when we see him.

The hardest part of the weekend (besides Daddy and I also getting sick with the flu, did I mention that part?) is having to get rid of a ton of Hannah’s toys.  Daddy and I decided that it would be smart to get rid of the toys that Hannah no longer plays with, which turns out to be at least 2/3rds of her toys.  Honestly, most of the ones I kept she can’t play with either, but I wasn’t ready to let them go just yet.  I’m just hoping that we can get her to play with them again.

Just two weeks after Hannah finished her last round of Cipro for trachiitis, it seems to have snuck its way back into her system.

She was doing okay during the day yesterday, but then about 4:30 pm she started burning up, becoming lethargic, really junky, tachycardic, and her respirations were really fast and shallow. By 5:30 pm, we made the decision to go to the ER again because she was in really bad shape.

They took us immediately into triage and then into a room. Even though we had given her tylenol 90 minutes earlier, her core temperature was still 102.6. They did a chest x-ray, trach aspirate, and took bloodwork. Fortunately her chest x-ray was clear (no pneumonia) and her bloodwork showed a higher than normal WBC (but not terribly high) and CRP.

It was trachiitis again. They prescribed us Cipro again since it does seem to work for her and discharged us. Again, they suggested that perhaps we should keep her overnight in the hospital, but the ER doc we had last time (who was not our doc this time) recommended we take her home since “we know how to take care of her” and that she “trusts us to come back to the ER if something isn’t right.”

Reality is we do have a mini-hospital in the house. There isn’t anything they could do overnight in the hospital that we can’t do at home. And believe me, if something isn’t right, we will be right back to the hospital faster than you can imagine.

What is getting scary about these last two times is how fast trachiitis creeps up on her and knocks her out. Within just a few hours she went from being normal (for Hannah) to a lethargic, choking, and burning up little girl.

We caught it early this time, thank goodness. We apparently need to be hypervigilant when it comes to getting her medical care if these symptoms come back. Even though my gut told me what it was, I needed the confirmation of the chest x-ray and blood work to confirm it and the antibiotic to fight it.

She did okay today. Exhausted, still junky, but in much better spirits.

The last couple of days have been pretty emotional for me.

Our nurse had left early on Monday, so I spent Monday afternoon cuddling with my Little Miss Hannah.  I didn’t mind one bit.   Then I was watching the Oprah farewell surprise show, and when Rascal Flatts came on to perform their song “I Won’t Let Go,” I found myself bawling.

When I first heard this song months ago, I had always felt a huge connection to this song.  Almost as if it is my promise to Hannah that I will always fight for her, even when she is tired of fighting.

Daddy and I both have seen a pretty drastic deterioration of Hannah’s condition in the past few months.   She doesn’t crawl anymore.  She can’t control her hand movements enough to even work the special needs apps on her iPad.   Her strength and tone has significantly deteriorated to the point where she only feels “safe” lying on the floor or being cuddled.  She doesn’t feel very comfortable even sitting in her therapy chair these days.

She is just so very weak these days.  I don’t know what is causing all of this.   Since the decrease in Klonopin, we have seen Hannah become more alert and smile more, which is wonderful.   But she has no energy or confidence to do any type of activity anymore.

It is heartbreaking to see my little girl like this.   I have been having horrible thoughts about the “what if’s” lately, and it scares me to death.

I’m trying not to dwell on this and enjoy every day with her.  I am so thankful that I can still make her smile, grin huge, and just give her all the love that makes her happy.

I am just scared of what the future is going to hold for her…for us.

Tonight, we have Hannah hooked up to both her humidified trach collar and her oxygen.   This is a first.

We actually haven’t needed to use the humidified trach collar (keeps her trach moist while she sleeps) in months in the old house.   I don’t know whether it is much dryer in this house or the fact that the air filter was incredibly nasty (which we just changed out this afternoon), but she has woken up horribly dry to the point she has a bit of difficulty getting a good breath.   This has happened all three nights here, even with me giving her saline bullets many times during the night.

Even after a nebulizer treatment in the morning, it takes a while with a lot of saline bullet drops to get her back to normal.  But the good thing is that she does get back to her normal clear trach secretions.   Ironically, after this past bout of trachiitis, she has been more gooky than usual which is common for her, so it was surprising how dry she became overnight these past few nights.

Also, she is still desatting into the upper 80s/low 90s while she is sleeping.   With the added oxygen, she goes back up to the upper 90s where she should be.

Even though the two aren’t meant to work together (at least I don’t have the proper equipment to do so), I have it gerry-rigged to make it work.  I know the oxygen is helping, and I am keeping my fingers crossed she wakes up more comfortable and moist.

We meet with her pulmonologist on June 1st to work on a game plan as to what changes we need to make.  I’m worried about her oxygen levels dropping while she sleeps, but I also am realistic that this very well may be part of her disease process as it has been this way with many Gaucher babies.

It is incredibly loud in our room right now.  I wonder if they have a quieter humidifier compressor because I can’t hear anything, not even the TV which is just about 10 feet or so away let alone if Abby or Ethan wake up and need me.

New reality?  Temporary setback?  Well, either way, hopefully she will wake up more comfortable and not so dry tomorrow morning.

We moved into our new home this weekend.  My husband, father-in-law, and brother-in-law moved all the heavy furniture themselves.  My in-laws and my hubby must have made dozens of trips back and forth between the two houses to bring more and more things over.   Tonight we celebrated with them with a BBQ in our new backyard.

I LOVE this new house.  It is a combination of a fantastic layout, a massive purge of stuff, and getting my ocean blue painted bedroom again.  It is weird because the house is quite a bit smaller (700 sq feet smaller), yet it still feels big, open, and very comfortable.  The backyard is also great (and even has a built-in space for a jacuzzi at some point), and we love sitting out there with Hannah while the kids are playing.  Even better, the way the house is situated, we get shade in the backyard in the afternoons, which definitely makes it cooler and more comfortable!

My first priority was getting Hannah’s area created and her supplies organized.   It was incredibly important to me that we make the living room look less like a hospital and more like a living space (in the old house, there were med supplies everywhere in the living area).  We gave her the big linen closet for the med supplies, and that still is just not enough so I will have to redo that at some point, but at least it is all hidden.  The only things left in the main living area are her oxygen, her chest percussion vest, suction, and a small basket of go-to supplies under the coffee table.

Another big change is that Hannah is now sleeping in a big girl bed by herself and not sleeping with me!   For the past few months, Daddy has been sleeping in the spare bed in the office and Hannah was sleeping with me.  In this new house, we have our king-size bed AND her twin bed in our master bedroom (and it fits great).  It is going to take an adjustment because I used to doze off at night holding her hand or leg so that if she woke up, I would know it (since she doesn’t have a vocal cry).   But I miss having my hubby sleeping next to me.  Now I have my hubby in bed with me, and Hannah just two feet away in her own bed.  She still has her toddler bed in the living room for daytime naps.

Our nursing situation is still a big question mark.   Today, our normal Monday nurse was supposed to work 7 to 5 today because she couldn’t work on Monday.  Yet, she ended up leaving at 11:30 am because of a family crisis and was too upset to finish the day.  She says she will make up the hours tomorrow (Monday, on the day she originally needed off), so I’m keeping my fingers crossed.  We have a backup nurse for Tuesday, but I don’t know what the rest of the week holds for us.  Our Monday nurse (that left early today) is supposed to take 4 days a week starting the week after next, but I don’t know what the nursing agency is going to do for those extra two days.

My hope is to get our house completely unpacked by Hannah’s birthday, July 25th.   There are so many possibilities with this house, and over time, as we have the money and time, we will make it perfect.  I am really, really loving this house!

Our Tuesday thru Thursday nurse was fired today.   I got the call 5 minutes before the end of her shift from the nursing supervisors to let me know that she wasn’t going to be back.  They couldn’t give me a tangible reason why, but obviously it was something serious enough that it had to be done at that moment.

Hannah LOVED her.  She was absolutely wonderful with Hannah.  I could honestly say she was the best nurse we have had since we started with nursing.  You could tell that she just adored Hannah as well.  She would sing to her many times during the day, and Hannah would have a huge grin on her face every single time.   She always was right on top of all our “daily goals” in terms of feedings, therapies, etc.

Most of all, I felt like I could totally trust her to take care of Hannah’s needs when I had to go out of the house.

It sucks.  I can’t blame the nursing company because obviously there were circumstances that warranted this termination because they know how much we liked her and how we are still in need of a normal nursing team.  I could also tell in the nursing supervisor’s voice that there was a sincere disappointment that it had to be done.

But it still sucks.   The timing is absolutely horrible.  Tomorrow I am supposed to get the sutures removed from oral surgery I had done last week.  We move the furniture to the new house on Friday and Saturday.   There will be weeks of unpacking, I’m sure.  Maybe even more.   Ethan and especially Abby are needing more and more attention these days as Hannah’s disease progression is becoming more obvious.

Most of all, Hannah needs someone she can feel comfortable with and trust.  We have had a parade of nurses since the end of March when we lost our two regular nurses.  I hate doing this to Hannah…all these new faces, new people, and we just leave her alone with them for hours on end (even if we are in the same house).

I have a tremendous, tremendous amount of guilt every time a new nurse starts with Hannah.   It kills me to just leave her alone with a stranger after just sitting with them for about 30 to 45 minutes or so.  They don’t know her cues, they don’t know her wants, they don’t know what makes her happy and comfortable.    And what is worse is that I am usually sleeping the first half of that shift because I was up the night before doing the night nursing stuff.

Right now, we only have one regular nurse, and she works on Mondays.  Thankfully one of our backup nurses was able to cover tomorrow’s shift so I can get my sutures out, do carpool, and get to the new house to pay the painters (I really didn’t want to bring Hannah to the new house with the smell of fresh paint fumes).  Friday and Saturday are covered for this week, but who knows what next week holds.

There is an emotional side of nursing that I don’t think outsiders get.   Yes, we need it to help us try to keep our heads above water each day.  But there is also the guilt and frustration because we are leaving our child to be cared for by someone else, which is a constant reminder that I, as a mom, am not able to get my crap together enough to be able to take care of her and do everything else.

What makes things worse, every single time I leave the house and leave a newer nurse home alone with Hannah, I am scared to death that something is going to happen to Hannah — her trach comes out and the nurse can’t get it back in, she has a tantrum that leads to breath-holding, etc.   It takes me many weeks before I feel comfortable just leaving her with the nurse without feeling that way.

But yet, it isn’t reasonable to be at the house every single minute the nurse is, but I do try.  I just feel like I need to be there for her.

Right now, with the loss of this latest nurse, I feel completely overwhelmed, stressed out, and just very sad.   Sad that Hannah has to deal with the loss of another person that she came to like and trust, and now the roller coaster of new faces, being left alone with strangers, and separation anxiety begins again.