Archives for September 2011

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.’

These past three days have been really tough and emotionally draining.

It started a few days ago.   Since about Sunday, Hannah had just not been acting like herself.  Very clingy, not wanting to play, just not feeling great.   She was a bit more gookier than usual in her trach, but it was still white and not yellow/green/brown (which would lead us to believe it was trachiitis).

Thursday was more of the same.  But then in the afternoon, her nurse came in to tell me that Hannah was running a fever of 102.7 on top of everything else.  Immediately we gave her Tylenol.   Even after an hour, it only went down to 102.3.   Then she started going into respiratory distress.  She was starting to have problems getting good breaths, so I made the decision to take her down to the ER.

Oh, and did I mention that Daddy just happened to be out of town for work that night?

My inlaws came to the rescue and picked up Ethan and Abby, and then Hannah’s nurse and I headed down to the ER.  Her oxygenation was decent at that point, still feverish, so we packed her up in the car and took off.

It was the ER visit from HELL.  Same hospital we have been going to since we moved here over a year ago.  Long story short, I could tell that the physician on call had no clue what to do with Hannah after all her bloodwork and chest x-ray came back normal (ruling out bacterial trachiitis and/or pneumonia).

Also, Hannah was poked and prodded so many times I was ready to tell them to back off!   First Hannah’s IV came out, blood pouring everywhere.   Then they got the second IV in, and then respiratory had to do some additional bloodwork to check her oxygenation efficiency — it took then THREE times with three separate finger/toe pricks and two different respiratory therapists to get blood that would work to be tested!

Finally, the ER doc was ready to discharge us, although I could see that she wanted to admit Hannah just because she didn’t know what else to do because she was thinking it was a virus.    But as I told her, unless you have something you can look for, observe for, or have a gut feeling as to what is going on, there is nothing that they can do with an admittance for observation that we can’t do at home where she is comfortable (as we do have a mini hospital here!).

Then when they took the IV out, we noticed that Hannah’s hand was completely puffed up and turning purple!   The vein had blown and the IV saline (fluids) that were being given had infiltrated!   Hannah’s left hand was four times bigger than her right and very scary looking!!   I even took a picture of it there because I was so worried about permanent damage (but Daddy won’t let me post it because he doesn’t want to see how bad it was because he is afraid of being more even more stressed out).

All the ER doc did  was continue to apologize, but I was expecting more.   Tell me how to make it better.  I kept offering ideas like should we put cold on it?   Should we elevate it?   “Oh, yes, you should do that.”   UGH!

We left the ER (5 hours later), and I felt horrible for Hannah because we left with her in worse condition than when we got there!

Fortunately, after 24 hours later (and keeping her arm above her body while she slept), her hand was back to normal.

Yesterday and today, she was still feeling not so great, fevers in the 101 range, etc., but manageable with Tylenol and Motrin overnight and then she was pretty mellow during the day.

Then around 4 pm today, Hannah’s nurse woke me up (I had crashed because I was exhausted) because Hannah’s temp had hit 104.5!   Immediately we started with the Tylenol, cold shower, cold washcloths, fluids, etc.  It was a constant race to work to get her fever down as fast as possible.

It took us a good hour before her temp went down to 102.3 (all her temps are rectally taken for a core temp – not fun!)   But that entire time, I was debating whether or not to take Hannah to the ER or call the paramedics to help us better access her (our pulse ox was acting weird!)

The scary part was that she would desat quite a number of times into the low 80’s.   We had broken out the oxygen and that kept her in the upper 90s.   Once we got her temp down into the high 101s and lower, her oxygenation started to go back to normal without the need for oxygen.

Finally, a few hours ago, her fever broke and she has been sleeping comfortable for about 4 hours now.  I’m still monitoring her oxygen saturations and breathing, but for now we are under control.  Although I just have a feeling we are not out of the woods with this virus or whatever it is.

NOW for my vent…  It is so friggin’ frustrating not being able to have someone who can help us figure out what is going on with her!   The entire time, I sit their weighing whether or not to take her to the hospital by saying “what would they do that we can’t?”  I feel like no one ever knows what to do with Hannah. and *I* have to be the one to tell them what to look for or explain in great detail to docs who sometimes don’t completely listen.

It sucks that we always have to be the ones “in the know” as to what to do and never get a chance to rely on the expertise of someone else because Hannah is always “so different” than what they are used to seeing.  I feel like if I go back to the ER (since we got all the bloodwork and chest xray done already, results not back on the viral panel), *I* would have to give them other things to look for or test for.

So emotionally exhausting and friggin’ frustrating!!  Worst of all, I still am not convinced we are dealing with a virus (WBCs are normal) and these high fever spikes a few days later, but I’m not sure what else it could be and really don’t have a physician who is really willing to figure this out.   (Although we have an appointment on Wed with her pediatrician to go over the viral results that should be back by then).

For now, she is fever free and sleeping.  I hope it continues.

Hannah has started to develop some what-we-think-are gastrointestinal issues.   There are really two separate issues, but I digress…

Constipation.   This started a couple of months ago (a few weeks before we started the Keppra wean).   Where once she was somewhat regular, it became more like a few days in between.   It had gotten to the point that after 4 days, she was so backed up and tight that you could see the obvious pain and discomfort it was causing her.

Suppositories do not work on her (well, they do about 1 out of 10 times).   So we started with the Miralax and a lot of tummy massage and leg movements.  After seeing her GI doc when this started, he suggested using 1/2 cap of Miralax once a day, every day just to help her along.   He thought it could be part of her neuromuscular degeneration process in that her motility isn’t as good as it once was.

Then it got to the point recently where after a few days, we had to also give her prune juice, just a few ounces, to help the Miralax along.   That was only twice, but now we have a big ole’ 64 ounce of prune juice in our fridge just in case.

So far, that seems to have help her “go” at least every other day.

The other issue, and this to me is the more serious one, is the spit up issue.  It started with a few times a week (again a few months ago), and now we are at at least a few times a day if not more.

She will be doing whatever, and you will see a lot of secretions and sometimes even formula come pouring out of her mouth.  Not a lot, but enough to soak up part of a washcloth.   The formula is the one that makes me nervous is because she is fed by G-tube, and this “whatever” is causing the formula to come back out of her mouth!

Also, she has been a bit more uncomfortable during her feeds over the past month or so.  Sometimes, even when she is sleeping, she will act agitated when we start a feeding.   Not horribly so, but at those times (about 25% of the time), you can tell it definitely affects her.

So I called the GI doc today.   Hannah’s local GI doc just recently relocated out of state, so I was transferred to the doc who was replacing him.   He asked a lot of questions and I did remind him that even though she is Gtubed, she does not have a fundoplication.  Since he had never met Hannah nor does he realize how truly complicated she is, I took it for what it was.

What *I* think may be happening is that either her reflux has gotten worse (even on 15 mg of Prevacid twice a day) which is causing her to vomit or spit up whatever is sitting on the top of her stomach or perhaps she may have some kind of stomach irritation (ulcer, inflammation, etc.).    On top of that, I think that she then may be aspirating what she is refluxing up, because on the rare occasion, we see formula come out of her trach (which of course wants me to get answers immediately).

He had mentioned considering changing her G-tube out to a GJ tube (goes lower down), but I don’t really think that is the issue.

Perhaps it is time for a fundo (which many Gtube kids have).    But a fundoplication means surgery, and that scares that crap out of me.

So we agreed that she needs some testing done to see what is going on.   He suggested doing a gastric emptying study as well as an endoscopy so they can see the path everything is taking.   Since she has to be put under for these procedures, I asked him if he could coordinate doing a broncoscopy at the same time with Hannah’s pulmonologist since it hasn’t been done since she was trached, and this is something that we definite would like to have done (especially to see if there could be the possibility of getting out the trach).

In the meantime, we are going to slow down her feeds even more.  Even though he was surprised at how little we are giving her at a time as it is.  I hope that they can get these scheduled quickly, but this is Vegas, and I’m not holding my breath.   Although I do think I may call her pediatrician and see if she can help move the process along!   If she is aspirating this stuff, this could be very serious!

I just hate not knowing what is bothering her and why she is spitting up, especially the formula!