Monday, July 23, 2012

How to Travel with a Trach Baby

We just recently returned from an 11 day trip through the south.  We really briefly considered taking one of our nurses with us, but we really wanted our first family vacation to be just us.  We had a great time, and here's my advice and tips for anyone considering traveling with a trach baby!

  • There's no such thing as traveling lightly with a trach baby.  I started to put all of Zadie's supplies in a big tote bag, and then decided just to go for the third suitcase.  I had to bring enough supplies for 11 days plus enough extras just in case!  Also, the night before we left, Zadie was desatting a little while sleeping, which means her blood oxygen levels were a little low.  The orders are for her to be on oxygen if her oxygen levels stay below 92%.  We had planned on bringing oxygen tanks, but they only last a few hours each, so if she really needed oxygen on the trip, the tanks wouldn't help too much.  So we decided to bring the huge oxygen concentrator with us.  Wouldn't you know it, she didn't need a bit of oxygen the entire trip!  Though I truly believe that if we hadn't brought it, she would have needed oxygen and we would have been sweating it.  
  • Keep the suction machine at arm's length.  This is something most trach parents do anyway, but we were driving for hours most days, and it wouldn't have been great if we had to pull over every time she needed suctioning.  I kept the machine right behind me, and Zadie's seat was in the middle.  If she needed suctioning while we were on the road, I just turned around in my seat and suctioned her rather than pulling over.  We pulled over plenty as it was with a 4 year old who apparently has a bladder the size of a walnut.  
  • Don't expect to be in and out quickly of hotels.  We didn't stay in any one place too long; the longest stop was four nights.  Normally, it's not such a big deal to stop at a hotel for one night, pull out the clothes you need for the next day, and zip up the bag in the morning.  But, with Zadie girl, we had a luggage cart completely full for each stop.   Three suitcases, Zadie's humidifier, her apnea monitor, her pack n play, her pillow and blanket, plus toys for the kids.  And getting packed up in the morning took some time, in addition to doing all of Zadie's trach care before hitting the road.  It was nice when we were in a hotel for more than one night and we didn't have to do all the unpacking and packing.  
  • Bring an extension cord, a 3 prong adapter and a power strip.  The power strip was key.  I'm glad I thought of it!  Actually, it wasn't me, it was BJ.  But with all the stuff we had to plug in and charge every night, it would have been rough without it.
  • Have fun!  We did!

Wednesday, July 18, 2012

Visit with the surgeon today

Zadie had another follow up with her surgeon, the Italian Stallion, today.  He's Italian, of course, and kind of dashing and he wears red clogs regularly.  Anyway, I didn't expect much of the visit except for him to look at her palate and say it looked good.  I know that it's holding steady up there because Zadie was sucking yogurt off my finger yesterday and has really good suction!  She also drinks really well from her sippy cup.

So, I was surprised that the director of the craniofacial team came into the exam room also.  He began asking me questions about Zadie's progress with eating.  I told him how she's doing, and then he asked who is following her about her trach and what they think about her getting it out.  I thought that was odd, because he's from the craniofacial team who is supposed to be following her and guiding us along.    We don't really have anyone following her specifically for the trach and should we?  I don't know.  We have the ENT, but we've only met him once, and at the time, he said that Zadie will probably have her trach until she's closer to 2, so we won't be looking to decannulate (remove the trach) much sooner than that.

I then mentioned that I was going to be calling the ENT soon to make an appointment to talk about possible downsizing the trach and working on the speaking valve.  Zadie's almost 14 months old and because of this stupid trach, she doesn't make any noise.  She should be talking and saying words by now, and she doesn't make a peep.  So with that, the doctor says, "Yeah, you should be talking to him about that, because we're behind already, she should be making noise and speaking by now."  Well, thanks, pal.  I wasn't upset enough about the fact, now you made me feel worse and now I feel like I'm holding her back because I haven't been pursuing things enough.  Blah.

So, hopefully we'll have an appointment with a pulmonologist next week who we can talk to about the status of the trach.  I'll get an appointment with the ENT and one of the speech pathologists to talk about downsizing and working with the speaking valve.  Then we'll have another meeting with the craniofacial team about the plan going forward.  I really hope that we someday get to the point where we feel like someone is driving the bus and directing Zadie's care!  I had this anxiety months ago, but I thought it was resolved.  Apparently, I was wrong.

I also have to find an eye doctor in our plan to make sure Zadie's eyesight is ok.  There is a genetic syndrome often associated with Pierre Robin called Stickler's and while Zadie doesn't appear to have it, she still needs to see an eye doctor.  Kids with Stickler's often have eye problems.  She also needs to get an appointment with a dentist.  Lots of appointments in the next few weeks!

Thursday, July 5, 2012

Happy Trachiversary!

Today marks one year since Zadie was trached.  A year ago yesterday, on the 4th of July, we were woken up by a call from the hospital.  That's never good.  But the call was a few days coming.

On June 30 of 2011, Zadie had a G tube surgically placed.  Her eating hadn't progressed enough and the hospital wouldn't send her home with a nasogastric (NG) tube, the temporary one that goes through the nose to the stomach.  They didn't want to keep her in the hospital just for eating issues, so it was decided that she'd get a G tube.

She went through the surgery just fine.  It was scary for us to leave her with the surgeon and anesthesiologist, but it went quick.  She was intubated for the surgery, meaning she had a tube inserted down her throat to help her breathe through the surgery.  Since she had such a tricky airway (part of her condition, Pierre Robin Sequence, causes the airway to be funky), they were worried about intubating her, but didn't have trouble once she was under anesthesia.  They extubated her (removed the breathing tube) the following day.  She had always had trouble breathing in certain positions, but before the G tube surgery, if she was laying on her belly or her side, she was ok.  She also had a nasopharnygeal (NP) tube, also known as a trumpet, inserted in her nose when she was about 10 days old. The purpose of that was to help keep her airway open more.

Now, after the G tube surgery, she was pretty miserable.  Not breathing easily in any position, and her oxygen saturations were not great.  The surgery was on Thursday, she was extubated on Friday, and by Sunday morning the 3rd, she was on oxygen.  She was holding her own, though, and we kept being reassured that her airway was probably just swollen from the intubation.  I kept asking if the intubation possibly damaged her airway, but the doctors kept saying it was just swollen.

So, on the morning of the 4th of July, we were woken up by a call from Dr. Ruben, Zadie's neonatologist.  She said that Zadie's breathing had worsened to the point that they needed to intubate her again.  They tried to do it while she was awake, but were unable to, so they had to put her under for it.  Since we weren't there, we had to give our permission over the phone for her to go under anesthesia to be intubated.  During that phone call, Dr. Ruben also told us that Zadie would need a tracheostomy as soon as possible.  This was the first time we had heard that word in relation to Zadie!

When we went to see Zadie later on, she was already out of anesthesia and intubated.  They had her little hands pinned down to the bed so that she couldn't pull the tube out.  She was looking at me like she wanted me to help her.  That was probably the hardest day of all the days in the NICU.  It was the first time I was afraid that we were going to lose her.  I was crying and trying to get the nerve to ask a question that was floating around in my head.  I finally got the nerve and asked, "Is she going to be ok?" Her nurse just looked at the doctor, who said, "Her problems are all mechanical.  She's not a sick baby. We just need to fix her mechanical problems."  The fact that she didn't say, "Yes, she'll be fine" was not lost on me, but I did feel better having asked.

Since it was 4th of July, it was hard for even the doctors to get a hold of the surgeon.  When they finally did, he said he could do the trach surgery on Wednesday, the 6th.  Zadie's doctor wasn't satisfied with that.  She insisted he do it the next day, on the 5th.  The fact that she was so nervous and anxious to get the surgery done made me very anxious and nervous!  The doctors in the NICU were used to little bitty preemies, not robust full termers who could easily pull out tubes.  Zadie's doctor was very nervous that Zadie would pull out her tube and it would be so difficult for them to get it back in, that it might be a very bad situation.

So, on July 5, 2011, we walked our sweet little girl down to the OR for the second time in 5 days and she was put under anesthesia for the third time in 5 days.  Again, the surgery went quick and she did well.  When we got to see her, it was like seeing a different baby!  She was laying on her back (previously had always been on her belly or side) and she just seemed happier and more comfortable than she had ever been in her 5 short weeks on earth.

When I think back to that time, I realize how little of a clue I had about what lay ahead.  I understood what a trach was, I knew some people had them for awhile, but I could never have predicted what our life would turn out to be like.  I hope that Zadie is able to lose the trach by her next trachiversary, but I'll be ok with it if she's not.  It saved her life.