Archives for May 2010

No extubation today.  Hannah’s chest xray looks unchanged since last Tuesday, and they are still suctioning a lot of yellowy junk from her lungs, so they wanted to give her another day on the vent.  They ended up doing another CPAP trial again today, for 60 minutes, and she did great.

They seem to believe she won’t have any problem breathing off the vent — the big question mark is what will she do if she feels the congestion again — will she have another breath-holding spell which may turn into seizure?  Will she just gag and cough like she normally does?

She is still incredibly hard to keep sedated.  Today they have used a combination of Versed, Fentanyl, Chloral hydrate, Pentabarb, and Precedex (the last two which are really heavy duty).   She still has a lot of difficulty staying sedated, even at incredibly high levels of medicine.  They are going to start weaning her down off the IV drip sedation (Versed, Fentanyl, and Precedex) and started giving her methadone and Ativan via IV.  So she has been on SEVEN different sedation meds today, used in combination.

The nurses in the PICU have nicknamed her the “Texas Tornado” because she really does thrash around when the sedation starts wearing off.  She tries to break out of her wrist restraints (succeeded a few times), pull out her Central line in her leg, and she is giving herself her own physical therapy in her legs because she kicks a lot.  She also keeps trying to turn herself on her stomach, probably because she never sleeps on her back!

We will see if they will be ready to extubate tomorrow.  If they do extubate, she will be in the PICU for at least an addition 24 hours once that is done just to monitor her and to wean her sedation meds.

We will see what tomorrow brings for my little “Texas Tornado.”

It is hard to believe that she has been here at TCH for one full week now.  Tomorrow will be the beginning of the second week.  Geez…

For the most part, today was a status quo day.   She did a trial CPAP test for 60 minutes to see how she would tolerate a CPAP off the vent.   She did well on that.  Their hope, as of this morning, was to do another CPAP trial test tonight for 60 minutes and then if she does well, then extubate her tomorrow.

Sounded like a great plan up until about 3 hours ago when I went to visit her, and she had spiked a fever of 103.5.  She had been at 99.8 and 101.8 since we had been in the PICU (Wednesday), so this was an unwelcome surprise.  They took urine, blood, and sputum cultures and sent them off to be grown out to see if her Adenovirus is kicking up a notch or if something else is brewing.  Honestly, I hope she caught something bacterially so it can be treated with antibiotics, but who knows.

They gave her tylenol, and about an hour later she was back down to 100.4.

The nurse thinks they are still planning another CPAP trial tonight and possible extubation tomorrow.  However, I am a bit nervous about extubation tomorrow.  Screw that, I am HELLA nervous about it.  I have heard other Gaucher family stories about extubation leading to reintubation because of laryngospasms and even trachs as a result of it.   I’m a nervous wreck right now just thinking about it.

We will see how she does overnight.  At least if they extubate, they know what they are prepared for, as they are going to be bringing ENT in just as a precaution.

Another problem that they are having is trying to keep her sedated.  They are using continuous fentanyl and versed with ‘as needed’ fentanyl and versed plus they even tried choral hydrate and pentabarb today.  Nothing seems to last and give her good sedation anymore.  Most likely it is because she is hypermetabolic, but it sucks see her so agitated and unhappy.

She is definitely getting more restless and agitated.  She has gotten out of her wrist restraints a few times now, and she just wants that tube out.   I feel horrible because she looks at me, and I know that she is wondering why she has this tube in her mouth, why is she restrained, and most of all, why the heck am I not picking her up!

I will admit that it is starting to take a toll on me.  I have not hugged my baby in almost a week, and all I can do right now is hold her hand, rub her forehead, or find another 2″ space on her body that is not covered with a tube, wire, or lead.  I want to hug her so badly.

I’m in one of the nap rooms of the Ronald McDonald house right now.   This place has been a godsend, I tell ya.  The main RMH is about a mile away, which is used for families of longer-term patients.  This one in the hospital is just for PICU and NICU families.

Today I had lunch with a group of moms, provided by the RMH, and they were all new parents.  The mom that I saw last night came down and sat next to me and thanked me for coming to her last night.  I told her how happy I was to see her.  Her new baby girl, a week old, is having significant respiratory issues and apparently had turned blue repeatedly while they were in there, requiring being put on a vent.   They were warned last night that the baby will most likely require a trach.  Small world, huh?   But I really was so glad to see her and to know that she was doing okay.

Hannah did great through the night.  They gave her a dose of Lasix overnight because her urine output was getting low, most likely a side effect of the medication she has been given.

I was there when they did rounds on her this morning.  Very interesting being in a teaching hospital.   The resident wanted to try and extubate her today, but the attending (whom I have talked to every day since she has been in the PICU) said that he wants to wait and see how she is on Monday.  Had she been a ‘normal’ child, they would have attempted a “extubation trial,” but as the attending said, he does not want a ‘trial’ with Hannah due to her Gaucher’s and it’s problem with laryngospasms.  So they really will only extubate her when they feel she is ready.

Again, the attending had said to me with a huge smile on his face, “She really is doing great.  Just as we had hoped.”

She does look good though.  Definitely getting more fiesty, and I am starting to see more personality shine through.  She is having to be sedated more now because she is waking up more and less lethargic.  But she has been trying to turn over onto her stomach and side to sleep (they have her on her back), and she is grabbing at all the lines and tubes on her left side with her hand.  They had to move her down towards the end of the crib to keep her away from them — even WITH wrist restraints.   Also, she got lose from the wrist restraint once and tried to pull out her tube.

I had to laugh when they told me that — THAT is my  Hannah.

If all goes as hoped (I have learned not to say “planned” here in the PICU/NICU since nothing seems to go as planned with many of the parents I have met), she will be extubated on Monday and put on a CPAP machine.  Hopefully from there, we can go to the PCU (intermediate care unit) and eventually up to a regular room on the 10th floor where we started.

A sense of relief came over me today when they were saying that she is ready to be extubated.  That means she has definitely improved since Monday when this all started.  I am also relieved that the attending also agreed to wait until Monday to give her a few more days to get the junk out of her lungs from the pneumonia and virus.  I don’t mind the extra couple days being on the vent if it means that the light at the end of this tunnel is very close by and not a distant dream.

I just left Hannah, and I was in a great mood, ready to write a very positive update.  I had just left my kids and husband who came down for dinner and was walking back to the Ronald McDonald house.

In the hallway by the NICU, I saw a mom who I had met in the RM house and have seen around the hospital during the past week.   She was crouching down by the wall in the hallway, crying hysterically.   I went up to her and crouched down next to her, just rubbing her shoulder, and tried to talk to her.  She didn’t say anything, she was just too upset.  Her husband came back about 2 minutes later with a wheelchair (she had given birth a few days earlier), and he had tears streaming down his face.  I left them alone and walked back towards the RM house.  I turned back to look at them, and he was consoling her, still crouched on the ground.

Just yesterday, she was saying to someone on the phone how her new baby was doing better.  They were pleased with his progress.

I don’t know what happened to her baby tonight.  But I can only imagine.  Those weren’t tears of a little setback.  Something disasterous had to have happened.  I could not get them out of my head the entire walk back to my room.

But Hannah had a wonderfully stable day.  Her color looks better.  Her fever is still hanging between 99+ and 101+.  The night nurse gave her a bath, washed her hair, and put her hair in pigtails.  She looks adorable.

They turned down another setting on the vent, something called a SIMV (how many breaths a minute it makes her breath) because she was breathing on her own over the setting.  However, they weren’t ready to bring down the amount of oxygen yet because they wanted to give her more rest.

They stopped one of her antiobitiocs, vancomycin, because that culture came back negative.  She is still on the antiobitioc for the pneumonia, the seizure meds, Protonix for her  reflux, and Versed/Fentanyl as sedation.

The doctor came up to me this afternoon and said “She is doing great.  I am very happy with her progress.”   It put me in a great mood all day long.

That is until I walked by that family tonight and saw how fast that could change.

I know Hannah is not out of the woods yet.  But she gave us no surprises in the past 48 hours, and she is doing what she needs to be doing — resting.  For now, that is good enough for me.

I actually had to look on my computer just now to see what day it was.  I can’t believe it is already Friday!   Sunday, Hannah was playing with her toys, cuddling, and just being Hannah.   Today, well, you know…

I was able to get a room at the Ronald McDonald house upstairs from the PICU last night.  It was the first time in 4 nights that I had spent the night in a real bed.  This place is wonderful.  I have been taking advantage of their “nap rooms” for the past two days, between 1 pm and 5 pm, I can come and take a nap and a shower.  However  the first night in the ICU, I was not able to get a room because they were full.  There are only 5 rooms for the whole PICU area (the real Ronald McDonald House is about a mile away, this is just an inhospital one), and I felt like I won the lottery last night.   I crashed around 11:30 pm and did not wake up until 7:30 am.  I feel so much more refreshed.

She is stable still this morning.  It was such a relief walking into the PICU this morning and just seeing her comfortable.   The night nurse had given her a bath and washed her hair and then put her hair in pigtails.  She looks so adorable!   The nurse said that she did great all night with no issues.  They are suctioning a lot of ‘junk’ out of her lungs, which is great.  She still is running a fever, but it is still within the 99.8 to 101.8 range, which has been her norm during the last few days.

The doctors did their rounds just a bit ago, and the plan is to just let her rest.  They are going to try and wean down her oxygen from 40% to 20% during the day to see how she tolerates it.  She is also on full feeds right now, at 40 mL an hour, which is fantastic.  The nurse tells me this morning “Well, we do notice she is a bit gassy today.”  I laughed and said “Oh, that’s normal.  So she MUST be getting better.”  She also had her first poop in 5 days, so we know she is okay in that department!

The nurse nicely asked me to leave this morning.  As soon as I walked in and started talking, Hannah became very agitated.   I was with her, and she looked straight into my eyes.  Instead of seeing this little catatonic stare for the past 3 days, I saw life in her eyes.  She saw me.  She knew who I was.  She wanted her Mommy.   So I plan to just be very low-key around her today just to give her more rest.

On a separate note, yes, we are still planning to move in 2 weeks.  But obviously there have been a chance in plans.  Hannah is going to be here for a while.  It could be up to a month or so.   The plan now is for Daddy to drive with Ethan, Abby, and the dogs to Vegas, as planned on 6/4.  They will stay with my inlaws and start their life in Vegas.  Thanks to my father-in-law, we have a house all secured for us, and he is working on getting all the utilities and everything going.  Once Daddy gets to Vegas, he will fly back to be with us for a few days.   I will stay here with Hannah as long as she is here.  Hopefully, they will move her upstairs within a week.

This is the best plan for Abby and Ethan.  They get to finish out their school with their friends, as we have prepared them for.  Then they will be completely distracted by being in Vegas with their grandparents, cousins, aunts, and uncles.  My family lives just 5 hours from Vegas, so they can come out and visit with them as well.  Let Abby and Ethan start their summer and have fun.

It is weird to think that I will never see my house again though.  Daddy has already packed up Hannah’s play area and will be packing up her room today.

But this is for the best.  Because of Hannah’s “delicate” state due to the Gaucher’s, the docs here are not going to discharge her until she is really ready to be discharged so that the odds of her having a setback after discharge are less.  They will not discharge her early and let her recover more at home.  When she leaves here, so I have been told, she will be strong enough to leave.

I have mixed emotions about leaving the medical team she has here even more so now.  She is in the best place she needs to be.   But I also know that I have learned quite a bit medically from this experience, and if it were to happen again, I know exactly how to help guide the docs in Las Vegas in terms of what worked this time.  It is not like Vegas is a rural hospital area or anything, but it is not TCH.

Last night, Ethan and Abby came for dinner and a visit.  My gosh, did I miss them!  I know they missed me, but I think I missed them more.  They spent about 3 hours here, and we were able to hang out in the family area of the RM house.  Abby and I spent some time chatting in the “quiet room” because she has been missing me really bad.  Yesterday at school, she was crying and told the teacher she wanted to talk to me.  Her teacher could not get hold of me, so she called the house, and Abigail was able to talk to Daddy.  It helped.    Daddy is going to bring them by again tonight for dinner and to hang out.

Off to take a shower in my RM house room.  I have to check out in an hour.  I hope, hope, hope that I get a room again tonight, but I am not holding my breath.  Just getting this one last night was a huge break and gave me the rest I needed to keep being there for my little girl.

“Stable” is the word of the day.   For the most part, Hannah has started to stabilize instead of getting so much worse in such a short amount of time.

We got a lot of answers today.  We know what we are dealing with.

She tested positive for the adenovirus.  It is a crappy virus that really hits even healthy kids really hard  So add that to Hannah’s already delicate situation, it was like a mac truck on her.   Unfortunately, like most viruses, there is no treatment.  She just has to ride it out.  That part sucks.

She still has pneumonia.  She is given two antibiotics for this, and she still is running a fever between 99.8 and 101.8 most likely because of it.

Seizures.  She is still on seizure medication.  However, her 24-hour continuous EEG showed normal activity, no seizures.  So that is a good sign.  At least, for now, the seizure meds are working OR she just is not having any more seizures.   The seizure situation is now taking a backseat to the virus and the pneumonia at this point.

She is still intubated.  Probably will be for at least a few more days in the best scenario.  Because children with Gaucher’s are so susceptible to significant laryngospasms with extubation, Dr Roy (Hannah’s ENT) and I really stressed that we do not want her extubated until they are really sure she is ready.  No let’s take out the tube and see how she does.  I would rather her be intubated for a few extra days than to have the tube taken out just to find she isn’t ready and needs to be reintubated.

She is doing well on the vent.  It is at 40% oxygen, and they were able to wean down the PEEP (pressure needed to open her lungs) down to the minimum of 5%.  That means this evening, her lungs were well enough to open up on their own and use the oxygen the vent was bringing in.  Before, she needed help getting her lungs to open up big enough to use the oxygen from the vent.  So THAT is a good sign.  There is talk about starting to bring down the amount of oxygen she needs from 40% to something like 30% or so tomorrow.

They started feedings today, thank goodness.  Poor girl has had no food outside of fluids in 4 days (she didn’t eat well the day before all this started).  She has a nasogastric tube (tube through her nose into her stomach) and they just started giving her Compleat Pediatric (what we use at home).  They are starting off very slowly just because her stomach has been so empty.  Hopefully, these calories will start giving her more energy to fight this virus.  Because she is hypermetabolic, she uses up many more calories than the average person for everything she does, including breathing.

The best news of all, is that an hour ago, she recognized my voice.  I started talking to her (just as I have done dozens of times today), and this time she opened her eyes really big, got really agitated, and started to tear.  It was exciting and heartbreaking at the same time.  I tried calming her down, putting my hand on her forehead, and she relaxed a bit.  As soon as I took my hand off and heard me talk again, she did the same thing.  The nurses ended up sedating her again because it is not good for her to do that.

But she recognized my voice, my touch.  That moment right there made my entire night.  It was the first time she recognized me in over 24 hours.  That has to be an improvement, right?   At least I will tell myself it is and be able to sleep with just a bit more hope tonight.