14 days post op

Zadie had her tonsillectomy two weeks ago today.  She is eating and drinking pretty much like normal, she hasn't had any pain medication for over two days, and her breath smells much better.  So I figured we were past the whole recovery period.  Then this morning, I walked into her room to check on her one more time before work and I see this:

It was pretty shocking to see the big blood stain on her pillow.  She didn't have a night nurse last night, but I do check on her periodically through the night, and she's hooked up to a pulse ox that alarms if her heart rate goes too low or too high or if her oxygen levels go too low.  She had a quiet night, and she must have had her head on this stain the first time I checked on her this morning, because I definitely didn't see it.  BJ checked on her in the morning as well and didn't see it.  I noticed dried blood on her lips, so I could only assume that the blood came from her mouth.

I called the ENT's office when they opened and the nurse there asked how big the blood stain was, and when I described it, she said that Zadie should be looked at in the ER right away.  She said while it wasn't usual to have bleeds that long after the operation, it wasn't unheard of.  So once again, we go off to the ER!

Zadie really hates the hospital now, and cries even when they're putting the hospital band on her ankle and when they're weighing her.  She was really upset after getting weighed, and that's when the tech took her temperature with the forehead thermometer, and it came up as 101.  Zadie's nurse and I were both surprised at that, since she hadn't had a temp earlier.

When the doctor came in, he didn't really know what to do.  He looked at the tonsil area as well as she would let him and said he didn't see any blood.  He listened to her lungs and asked about the congestion (she has a bit of cold/allergies right now).  He suggested a chest xray to rule out pneumonia because of the "fever" and her congestion!  I suggested that we try the temp again when she's calm before we go running to get a chest xray, because I was pretty sure she did not have pneumonia.

After that, he really didn't know what to do, and even asked me who he should call.  When I hesitated, he said, "well, since CHOP is so far away, maybe I'll call the pediatrician."  I told him the ped is not going to know at all what to do, so CHOP is probably the best bet.  Then he asked me for CHOP's phone number.

Later on, the tech came in to take Zadie's temp again, and it was 98.2.  I was glad that I knew enough not to just immediately agree to a totally unnecessary chest xray!  Meanwhile, he had consulted with CHOP, and their suggestions were the same as a week and a half ago, transfer her to CHOP (no thanks...just for the distance) or admit her for observation.  This time I asked what we could do to avoid the admission.  We agreed that we would hang out in the ER for a couple of hours and see how it goes.  And Zadie entertained herself!

It was clear that Zadie was quite well, so she was discharged with a "You know where to find us, we're always here!"  

We don't really know why she had more bleeding.  But hopefully that was it!

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.

Lots of updates!

Zadie had her bronchoscopy/sleep endoscopy in March at CHOP.  Dr. Javia said her airway looks great, with no obvious issues!  This is good news, but also bad news in a way.  At least if there was an obvious issue, there might be an explanation for her obstructive sleep apnea (OSA).  But, as it is, there are no clear reasons.  Dr. Javia did say that her tonsils were bigger than the last time he saw them (which was when he removed her adenoids.)  That's the last possibility for a cause for her OSA, other than just a hypotonia of her airway, which is something that can't be surgically corrected, she'd just have to grow out of it.  We are taking her to see him this coming week so he can look at her tonsils again and think about having them removed.  We'll be pretty upset if she has to go under for another surgery, when he could have taken her tonsils out when he was in taking out her adenoids in September, but at the time, he didn't think it was necessary.  Dr. Javia also said that there is the possibility of decannulating (removing the trach) and putting Zadie on CPAP.  We are very interested in this possibility.  I can't imagine it will be easy to get her to wear a mask on her face to bed, but I know other kids do it.

A couple of weeks after the CHOP visit, Zadie developed what looked like a pimple on her belly, right under her Gtube site.  It got bigger and redder and I ended up taking her to the doctor.  He took a swab of the pus inside and put her on antibiotics.  It turned out to be a staph infection.

Staph infection by Gtube

She ended up having a reaction to the antibiotic, Bactrim, so we stopped that, but her pediatrician felt that she'd been on it long enough and it was ok to stop.  

Red cheeks - reaction to Bactrim

Rash on chest that spread everywhere - reaction to Bactrim

Meanwhile, she was weighed when she went to the doctor for the staph infection, and she had gained weight since January, when she went to see the GI!  Between the weight gain and the fact that the Gtube site was getting yucky (and, I imagine, contributed to the infection), we decided to pull out the tube.  We waited until morning so that her stomach was empty, and just pulled it out.  It was a very exciting day.  I wasn't sure what we'd have to do to keep it from leaking, but it closed up very quickly, within a few hours, and we never had any leakage from her stomach.  Since she had some granuloma (scar tissue) built up around the site, it's not looking the prettiest, but I'm hoping as she grows that the scar tissue will lessen and be less noticeable.

One tube down, one to go!

In other news, Zadie has had two evaluations with the child study team from the school district so far.  One was with the speech pathologist and the other was with the learning consultant.  From what I understand, she did very well in the evaluations, which is great, but it also means she most likely won't qualify for the district pre-school.  It is pretty impressive that a kid who has had so many factors against her barely even has a speech delay.  Both Pierre Robin Sequence and having a trach are major causes of speech delays and issues.  But she is doing really well!  I'm back to work at the daycare now and when her nurse went on vacation last week, I took her to work with me.  Even though the class I have is a little younger than her, she wanted to stay with me and she did very well with the whole preschool/daycare thing.  She loved wearing her backpack and having a lunch box and she loved playing on the playground with the other kids.  One way or another, by the fall, I would like her in a preschool so that she gets out in the world!  She'll be turning 3 next month, so her speech therapy with Early Intervention will end at that point.

She's currently obsessed with Frozen, just like every other little girl in the world.  She's going to have breakfast with Elsa tomorrow morning, which should be a lot of fun!

I'll leave you with a picture of Zadie and her big brother and baby sister from a photo shoot we did about a month ago.  Super cute!

Jonathan, Beatrix and Zadie

Early Intervention transition

It's hard to believe, but Zadie will be 3 years old in less than four months!  Since Early Intervention only covers children until they're 3, we had the option of getting her evaluated to transition to the school system for preschool.  We decided to see if she qualified.  We had the initial meeting with the child study team for the school system last week, and they agreed to do a psychological, social, educational and speech evaluation on her.

We're not sure whether she will qualify, since she really is doing quite well, with speech being her only issue at this point, but her medical issues may help her get qualified.

In nursing coverage news, the insurance company approved Zadie's nursing hours until April, when they will be reviewed again.  They usually approve in six month increments, so I'm not sure why it's a shorter period before another review.  I do wonder if it has to do with the bronchoscopy she'll be having in March; they might be waiting to hear the results of that.

I had posted this on Facebook and haven't mentioned it here yet, but Zadie's GI doctor has discontinued her overnight feeds!  She weighs over 30 pounds now, which is around the 50th percentile.  This is amazing progress considering just over a year ago, she was in the 5th percentile for weight.  We have to make sure that she at least maintains and ideally gains some weight in the next month or two.  If she does, we have the option of completely removing her feeding tube!  This is such exciting news!  We will most likely keep the feeding tube for at least some time, since she still has the trach and will be having procedures and possibly surgeries in the future.  The feeding tube is a very good thing to have at times.  I'm really proud of how far she has come.  When she was born, she couldn't even suck from a bottle, and there were several months where she took nothing by mouth.  Just 2 years later, the fact that she's thriving without the aid of the feeding tube is really remarkable.

Zadie's current favorite word is NO and her current obsessions are turning lights on and off and closing doors!

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!