Update on Zadie

Zadie (on the right) with her brother,

Jonathan, and sister, Beatrix

It's close to a year since Zadie had surgery to close her trach stoma.  She's doing great!  She's in kindergarten now, and is in gymnastics and dance classes.  She loves to draw and play with her brother and sister.  Overall, she's a typical 5 year old.  Most people who just met her recently have no idea of everything she's been through, and I couldn't ask for more than that. 

In the fall, we started noticing that she wasn't hearing very well.  At first, we thought it was a "listening" problem, but then we realized it was more likely a hearing problem.  We took her to the doctor and found out that she had a terrible ear infection along with lots of fluid in her ears.  Interestingly enough, even with a raging ear infection, she never once complained about her ear.  She failed a hearing test and was put on some meds to help clear up the infection and fluid.  After a few more visits to the ENT, and the fluid wasn't clearing up very well, as well as another failed hearing test, we were able to get her an appointment with one of the pediatric ENTs from CHOP, but at their satellite office in Princeton.  Princeton is a whole lot closer than Philly! 

We were basically expecting to hear that the fluid was still there and that she'd need tubes again.  She's only had tubes put in once, at the same time as her palate repair at 11 months.  Kids with Pierre Robin Sequence often need tubes throughout their life.  Because of the way their anatomy is, they're more likely to have fluid buildup.  Zadie's been pretty lucky in that she has only had tubes put in once. 

The ENT looked in her ears and right away said they looked great.  He didn't see any fluid.  After we saw him, she was given a hearing test.  The test went great!  There were slight issues, but nothing of major concern, and the issues could have been just because she was on the tail end of an infection/fluid problem.   

Next up, some dental issues, but nothing major yet.  And she has a follow up appointment with her pulmonologist in a few weeks.  I'm going to ask him about a sleep study for her.  She hasn't had one since before she was decannulated and she does snore sometimes, so I want to make sure she's sleeping ok. 

MRI and beyond...

Since Zadie's last sleep study showed some central apnea (the first time in her life that central apnea has been even mentioned), the doctor wanted her to have an MRI of her brain to make sure there were no issues there that would possibly cause central apnea.  Being that she has a trach, she would have to be under general anesthesia for the MRI.  And because she'd already be under, they decided to do an MRI of her spine as well.

When we arrived for her MRI, they asked several questions about any implants or devices.  The trach Zadie normally wears, a Bivona, has metal in it, so that can not be worn in an MRI.  I was aware of this and had brought a back up in a different brand, Shiley, which is made of only plastic.  They also asked about the ear tubes Zadie has had since she was 11 months old.  Those tubes were put in during her cleft palate repair at St. Joe's Hospital in NJ, not at CHOP.  Apparently, some ear tubes have metal components in them, and no one thought to ask ahead of time for the operative report to confirm that there was no metal in them.  So, CHOP had to contact St. Joe's and send over a release signed by me to get the operative report.  That was really frustrating, but only turned out to be an hour or two delay.  She was in the MRI for about two hours, and was pretty cranky when she woke up.  Some positive feedback I received right away from the anesthesiologist was that he didn't see any apneas while she was under anesthesia.  He had mentioned ahead of time that if there were any apneas while she was under, there was a possibility of her having to stay overnight.  Thankfully, we avoided that.

Since we had the MRI on Friday and a follow up appointment with a pulmonologist on the following Monday, both in the Philly area, we decided to make a weekend out of it and drove out to Lancaster, PA.  Zadie was really hungry and thirsty when she woke up, and she drank juice and ate a bunch of cheez its, and it probably was a little too much too fast and she puked all over herself in the car.  But, that seemed to be the only ill effect of the day.

We had a great weekend in Lancaster, and woke up early on Monday to be back for the appointment with the pulmonologist.  Right after we left, I got a phone call from the sleep doctor's office with the results of the MRI.  They were normal, thankfully!  I mentioned to the woman that we had an appointment for a follow up with the pulmonologist and she checked the doctor's schedule and said we didn't have an appointment.  I had a funny feeling that was the case, since I hadn't received a confirmation call.  So, instead of going to an appointment, we had a fun last day of our trip and spent the day in Hershey.

We were able to schedule the follow up appointment with a doctor in New Jersey, and we're going to that tomorrow.  The ENT's office wants the pulmonologist to look at the results of the sleep study and make a recommendation for further steps.  Since her O2 levels were low for part of the study, the pulmonologist might just want her to be on some nebulizer treatments on a regular basis to open up her lungs.  Then we'll have another appointment with the ENT at CHOP in October.

Dr. Javia does not decannulate in cold and flu season, and since we will next see him in October, I've accepted the fact that Zadie will have her trach for another winter.  This enterovirus that's in the news right now is a bit scary and all the more reason to keep the trach for now.

Not the answer we were expecting...

The nurse at the ENT's office told me that Dr. Javia was "pleased" with the results of the sleep study.  She said he wanted us to meet with the sleep doctor, Dr. DelRosso, (since this doctor works out of the pulmonary department, I mistakenly thought she was a pulmonologist - she's not) to go over some numbers to see if she agreed that Zadie was ready for decannulation.  We were pretty encouraged and even though I tried not to get my hopes up, we really thought we would get a green light to decann.  We were wrong!

Getting vitals!

First, the doctor didn't even seem to know why we were there.  She asked if we had done the sleep study to see if Zadie was ready to be capped (Zadie's been capped for over a year).  She also said more than once that she hadn't reviewed the study.  We made this appointment over two weeks ago, why hadn't she prepared?  In the middle of the appointment, she left the room for about twenty minutes to take a better look at the results.  She said that Zadie now has central apnea, which she never had before.  While her obstructive sleep apnea is now greatly reduced (an AHI of 1.8 at this study compared to an AHI of 75 at the last study), she now has central.  Central apnea is when the brain doesn't tell the body to breathe.  There is no surgical fix for it.  And there is no obvious cause of it for Zadie.  Dr. DelRosso said that reflux and asthma are two causes of it, neither of which Zadie has symptoms of.  She also said it was possible that it wasn't true central apnea, but just oxygen desaturations.  Out of the whole night (7 or 8 hours of sleep), Zadie's oxygen saturations (sats) were below 90 for 3.5% of the time, or 15 minutes total.  To us, this doesn't sound significant, but apparently it is.  The doctor also said that Zadie's sats dropped pretty dramatically during short pauses in breathing.  Whereas most kids can hold their breath for 20 seconds and have no desats, Zadie's sats dropped significantly during 5 second pauses in breathing.  Again, no reason why this could be happening.  Dr. DelRosso's only theory is that now that Zadie's airway is open (and was previously obstructed), her body is not used it and is overcompensating.  

The first step was to get a chest xray to make sure that Zadie's lungs look ok.  We had that done yesterday while we were at the hospital.  They also took an xray of her head so the doctor could look at her adenoids to see if they had grown back at all (they had grown back somewhat between her adenoidectomy in September to her tonsillectomy in May).  Since xrays are all digital now, we went back to the doctor's office to see if she could look at them right away.  She did come back and see us and looked at the xrays while we were there.  She said everything looked good.  The next thing would be to decide if Zadie needed an MRI of her brain to rule out anything going on there that would possibly be causing the apnea.  Her office called me today and said that Dr. DelRosso had consulted with the sleep lab director and they decided that it was best if Zadie got the MRI.  Because she has the trach, she has to be under general anesthesia.  They will be doing an MRI of her spine at the same time since she'll be under.  

Chest xray

Head xray (you can see BJ's fingers holding her head back!)

Meanwhile, I had left a message for Dr. Javia's (ENT) office.  I wanted to talk to him about how blindsided we were about the results.  Dr. Javia actually called me himself and said he was sorry for the miscommunication.  I'm not sure what I was looking for from him, but I'm just very upset that I feel like we're getting nowhere.  We're spinning our wheels trying to get Zadie decannulated and new stuff keeps popping up and keeping her trached.  We want to get another opinion, but at the same time, to start over with someone new would absolutely delay decann.  I feel like we've invested so much in CHOP that we have to keep sticking it out with them.  Dr. Javia called me back a second time this afternoon to say that he had spoken to Dr. DelRosso and she said that decannulation is still a possibility, but they want to rule some stuff out first.  I don't know if that means decann is a possibility this year, but we're already in August, and they will not decann during cold and flu season.  I have a feeling we'll be seeing another winter with the trach.  

The good thing is, Zadie is good.  She's happy and healthy and doesn't know anything different. I just hate to see her continually have to go through all this stuff.  This will be her ninth time going under general anesthesia, if I'm remembering correctly.  

I'm interested in hearing from others where central apnea has popped up out of nowhere and what was the cause and outcome!

Sleep study

Zadie had her third sleep study a few weeks ago.  I went with her this time and it was all pretty uneventful, which was nice (unlike her first one, which I went to with her, and her second one, which BJ went to with her because Beatrix was three days old).  I was very nervous leading up to it, since she's 3 now and has tons of attitude and getting her to do anything she doesn't want to do is difficult.  I also thought she'd be upset going to the hospital, getting the hospital bracelet on, etc, after her rough time after the tonsillectomy.  But, she took just about everything in stride.  The tech attaching her leads was great and had the perfect personality and really engaged Zadie.  And the other tech came up with a paper doll book from somewhere which Zadie loved and kept her occupied.  She barely cried at all, in fact!  She started off snoring pretty significantly, but after the tech and I adjusted her position a couple of times, she settled down and had a fairly restful night.  She woke up whimpering a few times, but that was about it.

Waiting to get started

Stacking rolls of tape

New habit...chewing on her finger

Happy!

Bunny ears

Nasal cannula was the tough part last time...this time the tech told her that since she had the bunny ears, she needed whiskers like a bunny!  It worked!

The tech told her she had to squeeze her nose anytime it itched (rather than rubbing it and possibly messing up the cannula)

The next week, I talked to the nurse from the ENT's office.  She said Dr. Javia was very pleased with the results!  I couldn't believe it!  I never expected her to say that.  She said that her AHI (apnea hypopnea index) was 1.8!  The last study, it was 75!  Unbelievable improvement.  I'm not sure we can thank the tonsillectomy totally for that, but it just might be that all that pain and suffering actually accomplished something for her.  The nurse told me that Dr. Javia wanted Zadie to have a consultation with the doctor from the sleep lab to see if he agreed that the numbers were good enough for decannulation!  I still can't even believe that this conversation is happening.  I'm still trying not to get my hopes up too high, but it's hard not to.  We're going to meet with the pulmonologist tomorrow and we'll see what he says.

Third trachiversary

Today (July 5) is three years since Zadie had her trach placed. All day yesterday, I kept thinking of July 4th three years ago, when we were woken up by a phone call from Zadie's neonatologist. She had had a rough weekend, having lots of trouble breathing after her Gtube surgery a few days before. The morning of the 4th, the doctors decided she needed to be intubated and because of her tricky airway, they couldn't get the tube in. We had to give permission over the phone for her to be put under general anesthesia (for the second time in just a few days!) in order for them to intubate her. When we got to see her later, it was rough. That was probably the hardest day up to that point. Her little arms were pinned down to the bed so that she couldn't pull the tube out. I felt awful seeing her look at me, like she wanted me to help her.  It was one of the worst days of my life, seeing her like that, and not knowing what was ahead of us.  

July 4, 2011

Once she was intubated, Zadie's neonatologist, Dr. Ruben, was very nervous about her pulling the tube out, since she was a big, full term baby (much different than the preemies she was surrounded by in the NICU).  Seeing an experienced NICU doctor nervous definitely made me nervous!  She told us that day that Zadie needed a tracheostomy.  This was the first time that a trach was even mentioned to us.  It wasn't a suggestion or something to be discussed.  It just what was going to happen, and as fast as possible.  When the surgeon said he didn't have time until two days later, Dr. Ruben pushed him to make time the next day.  

So, on July 5, 2011, at 5 weeks old, Zadie had her trach placed.  It was the first day since the day she was born that she didn't have any tubes or tape on her face.  I had been wishing for it to be gone, but I didn't want it this way.  Still, it was wonderful to see her pretty face and for her to be able to be on her back comfortably (with her breathing issues, she had to be on her side or belly in order for her to breathe properly.)  

July 5, 2011

Fast forward three years, Zadie's a big sister (still working on being gentle), a little sister (annoying her big brother every chance she can get) and does just about everything any other 3 year old does.  Today, she went swimming!  I can't wait until she gets the trach out, but she's doing just fine with it.  Next step...sleep study on Thursday night!  

July 5, 2014

Tonsillectomy

It's been a rough week!  Zadie had her tonsillectomy at CHOP on Tuesday.  She was scheduled to stay over one night.  The whole family went down to Philadelphia for the surgery.  She was scheduled later in the day, which was nice for getting a later start, but since she had to fast for the surgery, we all had to fast!  The surgery went fine.  Her adenoids had grown back a bit, so Dr. Javia shaved them down again.  I know that adenoids can grow back, but it's only been seven months since her adenoidectomy!  I hope they'll stay small.

Immediately after surgery, before she woke up

Cracking a little smile! A couple of hours after surgery

The plan was for BJ to stay in the hospital with Zadie overnight.  Jonathan, Beatrix and I were lucky enough to get a room at the Philadelphia Ronald McDonald House.  I will write more about the RMH in another post, because it was such an amazing place.  It was my first time at a RMH, and while I've heard nothing but good things about them, I just couldn't believe it.  For a "suggested donation" of $15 (meaning they will take less if you can't swing the $15), you get a room that's just as nice as any hotel, plus a fully stocked community kitchen that's open 24/7 and several play areas for the kids.

Jonathan and Ronald

Zadie required a little bit of oxygen overnight while sleeping, which is not unusual for her after a surgery or when she's sick.  We're fully equipped with oxygen at home, so this didn't concern us.  Of course, the hospital wanted her completely off oxygen before she was discharged.  I understand their position, but for a kid like Zadie, to keep her in the hospital just for something like that (when we can perfectly handle it at home) is silly.  She was drinking fine, which was the big requirement.  They had also put her IV in her foot, which really bugs me.  She's almost 3 years old, potty trained, and she can't get up and walk around!  She's always been very hard to find a vein, but I think they could have tried harder to find a vein in one of her arms/hands.  They do it once the kids are under anesthesia, so it's not like they're fighting a wiggling child.  I kept asking them about taking it out, but they wouldn't take it out until they knew that she was being discharged.  But, I wasn't going to let them keep her another day if that meant she was confined to the bed/chair that much longer!

They finally released her and we were on our way.  I was kind of (no, really) missing her Gtube, just because she was really fighting us to take her pain medication.

Thursday and Friday (two and three days after surgery), she fought the pain medications really hard.  We had to force her to take it just about every time, so she definitely wasn't getting full doses.  Probably because of that, she wasn't drinking as much as she should have been.  So it was a bit stressful.  She was drooling horribly a couple of times, which indicated her pain was out of control, since she wouldn't even swallow her spit.  I felt bad that we weren't helping her more.

Friday evening, she took a late nap and woke up about 7 pm, very miserable.  She was drooling and I went to wipe her mouth when I noticed bright red blood in her mouth.  Everything we were told and all the paperwork we were sent home with said any amount of blood is cause for concern and to call the ENT immediately.  She coughed up a big load of mucus and it was streaked heavily with blood.  I called the ENT resident on call (since it was 8 pm on a Friday night) and as soon as I told her what was going on, she said, "you have to take her to the nearest ER right now."

Waiting in the ER

So off Zadie and I went.  There was no more blood by the time we were at the ER, and the ER doc looked at her tonsils and saw no blood back there.  He said he'd call CHOP to consult with them.  I figured that they'd send us home.  I was wrong!  They wanted to admit her to keep an eye on her in case she started bleeding again.  Apparently, sometimes there's a small bleed and then later on, a larger bleed.  I would normally fight against her being admitted, but I had done enough googling while waiting that I was scared enough to agree.  I read about kids who had died from bleeding to death after a tonsillectomy.  The tonsils are very close to major arteries, and sometimes, when the scabs start coming off, a kid can bleed out.  A friend of mine messaged me on Facebook to tell me about a scary experience her daughter had after her tonsillectomy.  Very scary.

Like she owns the place!  Waiting for discharge, roaming the halls.

The hospital kept Zadie until about 3 pm on Saturday.  There was no more blood, and she was drinking pretty well.  We had finally gotten to a point where she would take her meds willingly if she could give them to herself (push the syringe), so from then on out, things just improved.  She would take her meds when she was supposed to, she was eating a little here and there and drinking better.  We started gradually spacing her meds out longer and she did well.  Yesterday, Saturday, about 11 days after surgery, was the first day she didn't have any pain meds and did great all day.  She's definitely lost weight but I'm hoping she'll re-gain what she lost.

Next up, another sleep study, which is scheduled for July 10.

ENT visit

We took Zadie to CHOP in Philly today for a visit with her ENT, Dr. Javia.  After her bronchoscopy and sleep endoscopy in March, he said there was a possibility that the tonsils need to come out, since they were pretty large.  This was pretty disappointing since she was just in the OR in September to have her adenoids removed.  Apparently, at that time, the tonsils were so small that he didn't feel they needed to come out.  Recovery from a tonsillectomy is much worse than from just an adenoidectomy, and I do appreciate that he only does what he feels is absolutely necessary.

However, now that Dr. Javia has confirmed that he feels she needs a tonsillectomy, I do wish he had just taken them out in September.  Two birds, one stone?  She's scheduled for the tonsillectomy for May 6, which is just over three weeks away.  After that, we'll be able to schedule her for another sleep study to see if there is any improvement to the obstructive sleep apnea.  Since her airway looked beautiful in the March scope, if the tonsils don't prove to be the problem, then hypotonia of the upper airway will be the likely culprit.  There is no surgical repair for hypotonia, it is just something that Zadie will have to outgrow.  Since there's no other reason for the trach right now besides the OSA, Dr. Javia said that decannulating (removing the trach) and putting her on a CPAP mask is a possibility.  She would have to get used to the CPAP mask before decann, though.  I'm not sure how she'll do with a mask on her face!

I hate to put Zadie through another surgery!  I know it's for the best and she won't remember much (the older she gets, the less we can say "she won't remember any of this!") but it's just no fun.  The older she gets, the worse things like surgery and hospitalizations and blood draws get.  But she's a trouper and soon enough, this will be in her rearview mirror.

ENT visit

This past Monday, we took Zadie to see her ENT, Dr. Javia.  Since she had failed her sleep study so horribly, we went to see what the next steps would be.  Unfortunately, Dr. Javia doesn't really know WHY she failed the study so badly.  It could be hypotonia of the base of her tongue/upper airway, so that it falls back and partially blocks her airway while she's sleeping.  There is a possibility of more granulation or scar tissue since the adenoidectomy in September.

So Zadie will be having a sleep endoscopy and a bronchoscopy in March.  The sleep endoscopy is similar to a bronchoscopy in that they're looking at her airway, but from what I understand, the anesthesia is a little different so that it mimics sleep so that they can see what is going on inside when she's sleeping.  If they find any scar tissue, they can take it out then.  If nothing needs to be done, she should be able to go home that day.

Unfortunately, if it's the hypotonia, nothing surgically can be done and we would just need to wait for her to grow out of it.  And there is no way to know how long it would take for her to outgrow it.

Meanwhile, we are waiting to hear from the insurance company about her nursing hours.  The ENT's office sent the company the notes from this week's visit.  Since there are no plans for decannulation at this time, I am hoping that we will be able to keep at least some of our hours.

On another note, we saw a few other trached kids in the waiting room.  And we met a little girl (not trached) with PRS!

Zadie is a big sister! And other updates...

Zadie and Beatrix!

It's a while since I posted anything.  The big news in our house is the arrival of Beatrix Rose, Zadie's little sister!  Zadie really, really loves her and always wants to help with her.  Obviously, having Beatrix has made things a little more interesting around here.

A few days after Beatrix was born, Zadie went to Philly with her daddy to have her follow up sleep study.  Since she did badly on the one in July, her ENT, Dr. Javia, suggested we remove her adenoids.  He was hoping that they were the cause of her apnea.  We were hoping that the follow up sleep study would be improved enough that decannulation would be a real possibility.  Unfortunately, less than an hour into the study, the technician removed Zadie's cap.  From then on, she was sleeping as she does at home, with the trach open, and therefore not really getting any benefit out of the study.  It was pretty discouraging, since there was no point in being there any longer, but they stuck out the night (Zadie was sleeping already anyway).  We held out some hope for a positive result, but when I talked to the nurse a couple of days later, she told me that the results were much worse than the results from July!  The apnea hypopnea index (AHI), which is the number of recorded apneas or hypopneas per hour, was 12 in July and 75 in November!  The link I provided has a different measure of what is severe from what CHOP considers severe, but on either scale, 75 is severe.  And that's why they took the cap off.

No like sleep studies!

I don't know why it was so much worse.  She was a little congested, but not enough that we thought we should reschedule.  I really wonder if there were any errors made in setting up, but there's no way to know.  We will be heading down to see the ENT again; he wants to look at her airway in the office and then decide the next step - maybe another bronchoscopy or maybe another sleep study.  Neither is a really easy option.  Zadie would be put under for the bronchoscopy and sleep studies are really miserable, so I feel really bad she has to go through either (or both) again.  And, since Dr. Javia is at CHOP, it's a two hour drive to do anything.

Otherwise, Zadie is doing really well, health wise (knocking on wood).

Letter from insurance company

This past week, we were informed that our insurance denied Zadie's nursing hours (again).  Again, they said that Zadie's care was purely custodial, meaning basically babysitting, which is outrageous considering we can't leave her with just anyone.  Dr. Javia's office at CHOP took the first step in appealing with the peer-to-peer review.  They spoke to the medical director at the insurance company, but they still denied the hours.  The ENT's office then filed an expedited appeal on our behalf (they were really proactive about it, which I appreciate!) and the insurance company was supposed to give an answer by this past Friday.  Instead of an answer, they reinstated the nursing hours temporarily while the appeal went to medical review.  So, for now, Zadie has her nurses back.  I still haven't gotten the official denial letter from the insurance company.  The only correspondence I've seen from them is a really poorly written fax that was sent to the nursing agency.  It's kind of mind boggling how someone who apparently doesn't know the word tracheostomy (instead, it's referred to as a "tube in her neck for breathing") can determine whether anything is medically necessary!

Follow up on Sleep Study

We went to Philly on Monday to see Zadie's ENT to discuss the results of the sleep study and to talk about the plan going forward.  The nurse on the phone had told me that Zadie had moderate obstructive sleep apnea, but Dr. Javia told us it was actually severe.  He thinks the culprit might be her adenoids, so she is scheduled for an adenoidectomy on September 30.  Her tonsils have always looked fairly small, but there is a possibility that they will be taken out at the same time.  While she's under for that procedure (or procedures) she will also get a bronchoscopy to really look at the airway.  About 4-6 weeks after her surgery, she will get another sleep study.  Even though we'll already be in November by that point, Dr. Javia didn't totally shoot down the possibility of decannulation (losing the trach) this year, although he usually doesn't do it in the cold and flu season.  I'm not getting my hopes up for decannulation this year, though.  I think chances are pretty good it will have to wait until the spring.  It would have been nice for the trach to be out before the new baby comes, but it is what it is.

Zadie showing off her boo boo from getting blood drawn.

Sleep study...

Zadie had her sleep study on Sunday night.  It started off pretty eventfully, as her Gtube balloon (the tube is held in by a water filled balloon - read more about it here) burst and the tube fell out.  I didn't have a replacement with me and the sleep study staff insisted that we go to the ER to get a replacement.  I was pretty upset, because I didn't know how long it would take for the replacement, and I really wanted the sleep study to happen.  But, the CHOP ER staff was wonderful and we had a new tube in within 2 hours and we were back to the sleep lab.  I have learned a lesson: always take a replacement tube!

Zadie showing off her new tube

So now that we were back in the sleep lab, we started to get ready for the study.  Since she didn't get a good nap that day (she slept for a total of about an hour, in two increments, in the car) and we already had to mess with her to get the new tube in, I was worried she'd be very uncooperative.  She did great while the respiratory therapist (RT) started putting the electrodes on her head and body.  She got to pick which color wire was put on next.  I said to the RT, wow, she's being really good.  She said, yeah, this part isn't the hard part.  We found out what was.  The nasal cannula.

All smiles for first electrodes

Wrap my head up in gauze?  Ok!

A gauze hat with bunny ears?  Great!

Nasal cannula...not cool.

Once the nasal cannula was in (it measured the carbon dioxide she was breathing - it had a little attachment for her mouth in case she was mouth breathing), she was very unhappy.  She cried on and off until she fell asleep.  The RT brought her a coloring book and crayons and she would be happy with that for a short time but then start crying again.  We really tried to keep her from crying too much, because the cannula couldn't get too wet and neither could the tape.  I really didn't want her to have to replace the cannula.  Zadie would just think she was getting it off and then to have to put it back on would be awful.

Occupied with a new coloring book and crayons..

Zadie didn't know what to do with herself.  She was crying on and off, she wanted to be off the bed (but she couldn't be, since she was all wired up and connected already), she wanted me holding her, she wanted me on my own bed, she wanted her milk, she didn't want her milk.  I finally got her to lay down by telling her I'd come back to her bed if she put her head on the pillow.  She did, and I did, and she fell asleep soon after that.  The RT told me when it was safe to move (she could see from her readings when she was in a deep sleep).  She slept fairly well, but she did snore a lot (just like Daddy!).  I knew that wasn't a good sign.  But she would sort of wake up every so often, crying.  I finally got to sleep, and then she woke up about 4 am and puked.  Her cup of milk was still on the bed, and I think she drank it and it wasn't very fresh.  We got her cleaned her up and she went back to sleep pretty quickly.

Despite it all, a smile at 4 am!

We were woken up at 6 am.  The RT cleaned up the wax out of her hair as best as she could and we were sent on our way.  Zadie was so happy!

So happy to be heading home!

I got a call from the ENT's office today and she briefly went over the results.  Zadie did have some apnea and that has to be addressed.  We have an appointment to see the ENT on August 12 to discuss the plan, but there's no way I'm going to be able to wait that long to find out what the plan is, so I'm going to call tomorrow and try to get more information.

The sleep study is two days away!!!

I'm getting very anxious as Zadie's capped sleep study is practically here!  I'm worrying about every aspect.  I want her to be 100% healthy so that something as simple as a cold doesn't hurt her results.  I want her to be tired enough to sleep easily with a million wires all over her and in a strange bed, but with a two hour ride to get to the hospital (CHOP), it's pretty inevitable that she will nap that day.

I am really excited that this will possibly be the beginning of the end of trached life for Zadie, but I'm really trying not to get my hopes up.  I am trying to stay positive, though, and not think about any negative possibilities.

Please keep Zadie in your thoughts on Sunday night for a peaceful and easy sleep with good numbers!

Persistence is key!

Since I made the appointment for Zadie's sleep study a few weeks ago, I've been calling every other day to check for cancellations.  Today, my persistence (or pestiness?) paid off!  A lovely woman by the name of Mary set Zadie up with an appointment on July 21, a full month earlier than the original appointment (and less than two weeks away!).  I'm very excited and hopeful that this will go very well.

The sleep study is scheduled!

The sleep study is scheduled.  Unfortunately, it's not until August 21!  I guess the doctor wasn't kidding when he said it would be about two months away.  The lady I talked to said that there are always cancellations and that I can call every other day to check.  So I guess that's what I'll be doing for the next two months!  Hopefully we'll be able to get in sooner.

CHOP update

We all took a ride down to Philly today. It was a crazy rainy day which made the trip even longer.  Because of the weather, I guess a lot of the appointments before us were running late.  Zadie's appointment was at 11:20 and we didn't see the doctor until after 2!

Dr. Javia looked at Zadie's ears.  She has an infection in her left ear, which we suspected.  Since she has a tube in there, it didn't seem to be hurting her, it was just draining a lot and she kept picking at it.  She was prescribed antibiotic drops for that.  The tube in her right ear fell out and is still sitting in her ear canal.  He said it will eventually fall out of her ear.  Even though she didn't pass her hearing test in that ear in April, possibly because the tube is out, we will just monitor it for now and will not take any action.

Since Zadie is doing so well with the capping, we are now cleared to get scheduled for a sleep study.  Unfortunately, Dr. Javia said it might be a couple of months until we can get in.  But, he recommended that we keep calling to ask about cancellations, etc.  If the sleep study goes well, then Zadie will be scheduled for decannulation.  When she had her bronchoscopy in September, Dr. Javia noticed that her adenoids were rather large, and they will possibly be a problem.  We won't know that until the sleep study, though.

I'm waiting for the sleep study department to call me with a date.  I'm very anxious about all of this.  They will not attempt decannulation in the winter, so we have a limited amount of time to get everything done.  It will all happen eventually, though, so if it doesn't happen this year, all is not lost.  I'm just really hoping it does!

As all good trips to Philly end, we stopped at Pat's for some cheesesteaks.