Four years ago . . .

I can’t believe it’s been nearly four years since Parker’s LTP surgery! Next week will be the anniversary of the surgery date. I have to confess the road we went down after the surgery was not the one we expected. Parker really has a way of taking the slightly more complicated route!

I thought I’d update . . . in a nutshell . . . nine months ago our family moved to Indonesia. Ian’s company asked if he would like to take an opportunity here. First thing we did was look at a map. We had a vague idea where Indonesia was but, embarrassingly, we didn’t know exactly. The second thing we did was call down to Cincinnati Children’s hospital and have some candid conversations with his team. As exciting as this opportunity was for our family, post LTP life wasn’t exactly smooth sailing and we’d really been down to Cincinnati on a 3-6 month basis for the entire four years. Obviously that wasn’t going to be possible if we were living (literally) half way across the world.

Dr. Cotton gave his theoretical blessing, suggested that we would need to come home annually for a scope and asked us to come down one more time before we left for good. Given that every other time we had been there there was always a surprise I held my breath. Honestly, I will not forget the knots in my stomach as I waited for the team to meet me in the post op room. Dr. Cotton came in and said, “See you in three years. Have an amazing time in Indonesia. Come back if you need us, but he looks great and if we don’t see him for three years that is ok.” I couldn’t believe it. Was I hearing this right? The prospect of going three whole years between visits was not really something I could fathom.

So, here we are. Living the life in Jakarta (read more about our experiences here: www.wedancedanyway.com). We packed up and moved around the world.

Parker has almost caught up on his speech. He can be a little breathy. Sometimes his breathing is noisy and I get nervous but then it goes away. He’s learning to swim. It’s a challenge for him to navigate breathing and holding his breath but he manages and gets better every day. I’m still active on the tracheostomy forum. I get emails once in awhile from families who find this blog and have questions about the LTP process. I will never lose the fear that something could happen. Or that his airway will stop growing. Or that HIS kids will have paralyzed vocal cords. But every day that goes by I dwell on those things less and less. And that is a good feeling!

Here’s our man! Blue eyes, red hair, and every bit the pistol that gave the nurses at Cincinnati a run for their money on the airway floor after his surgery. More gray hair will be earned from this child than the other two combined!

Tuesday!

We are having a good week. Parker isn’t all that thrilled to be here and he is short tempered but he is doing the best he can.

Sunday night we had our sleep study. That’s where he sleeps like a champ even while hooked up to ridiculous amounts of leads and monitors and I freeze all night because it is like a refrigerator in the room.

We don’t have the results yet but from what I saw (and I looked a lot on account of the “no sleep” thing) his o2 sats were great and his co2 looked fine too. So, I don’t expect any weird news from the sleep study.

Monday we went to voice clinic and ENT clinic. Today we went to pulmonology and GI clinics.

Why are we here? Why so many clinics?

Partially this is routine follow up. For the forseeable future we will need pretty routine follow up on the reconstruction surgery that Parker had two years ago. Hopefully sometime soon we will graduate to a “come back in a year” schedule but we will know more on Thursday.

Partially this is follow up from a bunch of things that were a little bit “off” from the last routine visit. For starters there were some signs that Parker was having some reflux and/or microaspirating. There was some very, very mild lung damage and cobblestoning of the surface of his eosophagus. These were all new symptoms for Parker. So he was put on an acid reducing medicine. When he goes into the OR on Thursday they will be looking to see if the damage is still there and if it is better or worse.  Reflux is one of the bigger risks associated with a failure of the reconstruction surgery that he had. So it is important to keep it at bay to minimize the risk of needing to have the surgery repeated.

They will also be taking some biopsies of his eosophogeal tissue and placing an impedence probe. The probe will be in place for twenty four hours and is a highly sophisticated way to measure the incidence of reflux. It also measures the pH level and tells exactly where each incidence of reflux makes it up to.

The other big issue at play is that about three months ago we started noticing some change in Parker’s breathing. It wasn’t dramatic and it wasn’t consistent. But, over the last few months we’ve noticed that several times a day he has some periods of time where it sounds like he is having increased work to breath in his upper airway. He isn’t stressed or bothered by it, on the contrary he seems totally unaware. The episodes appear to be no rhyme or reason to them but they have gotten more dramatic in nature and more frequent.

Top theories at this point are: paradoxical vocal cord movement (times when Parker’s cords spontaneously do the opposite of what he is telling them to do), reflux incidents that reach the vocal cords causing some kind of temporary reaction, edema caused by allergy, and finally structural change in the upper airway.

Every doctor has a theory or two and everyone agreed that the only way to really know was to get in there on Thursday and take a look. So, all three doctors will be in the OR looking and putting together a hypothesis. We are, of course, hopeful that what they see is not structural. In truth there could be several things at play here! We are fortunate that he has become symptomatic at a time when it was previously planned that we would have all three areas of expertise present in the OR at the same time. All three doctors routinely consult and work together on the multi-disciplinary team at the hospital which is always a good thing for patient care.

Tomorrow is our free day. Grandma is coming for the day. Not sure what our plan is yet as it is supposed to be 95 degrees here!! 

Thursday morning is our scheduled OR time! It is much later than we are used to. Should be interesting to see how Parker does with the whole “no eating” thing!

Funny how fast “see you in six months” gets here!

Tomorrow (Sunday) it is time once again for Parker and I to head down to Cincinnati Children’s Hospital. This time we know we are going to be there for a week (unlike last time) so I will be sure to pack plenty of undies and diversions for Parker.

Basically, we are following up on all the things that were seen in March. I will update daily but here is the schedule:

Sunday night: Sleep study.

Monday: ENT Clinic

Tuesday:  GI clinic and Pulmonology Clinic

Wednesday: Free Day!

Thursday: OR for a bronchoscopy, lung wash, eosophogeal biopsy and impedence probe placement.

Parker will be admitted to the hospital on Thursday to monitor the impedence probe.

Friday (knock on wood) we will head home after the pull the probe.

I’m still scratching my head a little bit about how my kid with a single (albeit complicated) airway issue suddenly finds himself with not only an ENT but also a pulmonologist and a GI specialist.

There are lots of questions and new things for me. So rather than try to explain what is going on in one long post I will update daily and try to explain what each of the departments are looking for.

We will also have plenty of free time and hope to catch up with some old friends while we are there. There also happen to be several families from tracheostomy.com who will be there at the same time, so time and schedules permitting we might be able to connect with some of those families!

On a sad note, this week, one of Parker’s best supporters here in Grand Blanc, passed away. Pam was the mother of my very first senior portrait client here and we hit it off immediately and became friends over the last two years. Pam lost her battle with chronic leukemia on Wednesday morning. She leaves four children whom she doted over and adored. I last saw Pam several weeks ago and despite my attempts to ask her how SHE was doing she was adament that we talk about Parker and what was next for him. I’m so sad that I will not be able to attend her funeral on Monday but Ian and I will be going to her visitation this evening.

Pam’s mother and father grew up in the Lafayette, Indiana area and she still has family in both Dayton and Buck Creek. She loved Arni’s and we never saw each other without promising that someday we would try to open an Arni’s pizza in Grand Blanc.

More oldies but goodies!

I have a friend who shall remain nameless, but she is apparently an email pack rat and she has my missing emails from Parker’s first four weeks! Thank you!

In order, from the first announcement of his birth to where we started yesterday:

Date: Saturday, November 4, 2006, 7:54 PM
Hello Friends,
 
I wanted to send a quick note out to tell you all that baby Parker has arrived.
 
Parker Edwin Upton was born at 10:07 a.m. (I think!) on Thursday, November 2nd. He weighed 8 lbs. 1 oz. and is cute as a button.
 
Parker did not take a breath for the first three minutes of his life and required quite a bit of work, including oxygen and chest compressions to get him going. After that he was fine until about 8 p.m. that evening when he turned completely purple and was taken from our room and admitted to the nursery. By 11 p.m. the decision was made to have Parker transferred via ambulance to Sick Kids hospital in Toronto- the hospital where he was born did not feel they were adequately equipped to handle an emergency situation with him should he require more significant intervention than was needed to break him out of his now common “purple spells.”
 
For those not familiar with Sick Kids it is one of the pre-eminent pediatric facilities in the world.
 
An acute transport team from Sick Kids arrived, assessed Parker and assumed his care and took him downtown. Ian and I headed home to try to get some rest, we knew he was in good care and we didn’t know what kind of road laid ahead.
 
The next day he saw a LOT of specialists and it was ultimately determined that his left vocal cord was not moving and when he cried the lack of movement of the left cord combined with the normal movement of his right cord meant that at times his airway was entirely blocked leaving him unable to breathe and his oxygen levels dropped significantly.
 
So, right now we are trying to figure out if the problem is damage to the cord associated with the work that was done on him just after birth or if there is paralysis caused by structural abnormality or nerve compression. The former is more likely, given that there was a lot of work done on him at birth and also given that most of the abnormalities that would cause the paralysis would also manifest in other ways but thus far he is a totally healthy, normal kid unless he cries and then he can’t breathe!
 
We are awaiting an MRI tomorrow or Monday so they can finally rule out structural problems. It is better if the problem is associated with damage from birth as it will likely resolve itself fully in a few weeks. Unfortunately, that means that he would have to stay in the NICU for a few weeks because even though the episodes are now resolved quite easily with oxygen and calming him down, there is always the possibility that that wouldn’t work and he would need to be intubated or require something even more drastic.
 
There you have it. The story of Parker’s arrival. We are thankful that Ian’s mom is here to help us with the big kids while we spend time at the hospital with Parker. My mom is coming early next week and will be here for a few weeks as well. Grandmothers and great neighbors and friends here mean we are able to juggle everything we need to for now!
 
Attached are some pictures from Parker’s first day- from birth up until his departure  to Sick Kids. He sure had on a lot of bells and whistles! We will keep you posted on his progress as we learn more about what is going on.
 
http://mylifewithboys.typepad.com/photos/parker/
 
Suzanne & Ian

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Date: Sunday, November 12, 2006, 9:40 AM
Hello,
 

 
First, my apologies to those on this list that are just now hearing about our newest addition. Things have been a little crazy and we’ve only sporadically had time to “officially” and “publicly” welcome Parker to our family.
 
A little re-cap: Parker was born on the 2nd after a complication free pregnancy and delivery. Unfortunately, he didn’t take a breath for about three minutes after birth and required some intervention to get him going, but after that all seemed quite well until about 10 hours later when he turned purple and his airway closed off entirely.
 
Within hours he was transported to downtown Toronto to SickKids Hospital and has been in the NICU ever since. For those Americans who constantly ask us about the state of Canadian healthcare: we only have glowing reports to give about the care he has received at SickKids. We are indeed very lucky to be so near a hospital with such a remarkable staff and amazing reputation worldwide!
 
Here is the update since my last e-mail: previously, we thought only his left vocal cord was paralyzed but in fact both are. From the beginning, the assumption has been that the work done on him at birth caused damage to the cords that would just need some time to repair, but obviously, we and the doctors want to rule out any other issues that might cause or complicate the issue. He’s been through many, many tests and all but one have turned up nothing unusual. In addition, his “purple” episodes are becoming fewer and farther between and require less intervention on the part of the nurses. Some even resolve themselves without the oxygen mask. This is good news and is one very strong indicator that we are dealing with damage and not structural abnormality.
 
The cardiologists performed an echocardiogram where they learned that Parker has a blood vessel that is in an unusual place (for those interested in medical terminology: aberrant subclavian artery). They described the vessel positioning as a variant of normal because it is believed that nearly 1 in 200 people have this kind of artery. In most people, the artery is asymptomatic. In Parker’s case, the artery slightly compresses his esophagus. This is not likely the cause of his episodes but it can be exasperating the situation, in which case surgery may be required to tie off the artery. (Apparently it is not medically necessary.)
 
So, as of today, we are waiting to hear the cardiologist’s thoughts on whether or not the artery is complicating Parker’s case and if more tests (MRI and CT Scan) are in order to make further assessment. Additionally, he is still fed through the nose tube and will have an upper GI/feeding study on Tuesday to see if it is safe to start trying him on a bottle.
 
He is more awake and alert each time we visit him and he definitely very aware of and interested in his surroundings! The nurses suggested we bring a mobile for him to look at so he doesn’t get too bored in his little crib.
 
More updates to come as soon as we get more details!
 
Cheers,
Ian, Suzanne, Berkeley & Griffin

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And this last one is from my mom to her circle of family and friends:

Date: Monday, November 27, 2006, 8:25 AM
Hi all,
 
So much happens so fast! Last I wrote Parker had begun to develop signs of oxygen deprivation in his intestines. They believed they caught it very soon, and indeed they did. He was off his feeds for seven days and on three antibiotics. The condition did reverse itself and my understanding is that today they will begin to slowly reintroduce his formula along with the antibiotics and then take him off the antibiotics.
 
Last Friday they took him to surgery to do a rigid bronchoscopy. Apparently that is the gold standard for determining what is going on in the neck/throat region of the body. It came as no surprise that they simply could find no cause for the paralyzed vocal chords. All the research we have read is that in many, many cases they simply are not able to pin point a cause. The cause is idiopathic. The research also says that for no known reason this condition can just reverses itself, sometimes in weeks, sometimes in months or years, and sadly, sometimes never. I am praying for weeks!
 
What did surprise us was the doctor did not put in the trach at that time. He felt if he held off for one to three more weeks that hopefully Parker would be one that would begin to show signs of recovery and maybe the trach could be avoided all together. As it turns out, Parker apparently had a rather severe episode Saturday night along with some bradycardia (slowing heart rate) and they called Suzanne and Ian to say they were going to intubate him and put him on a ventilator, and now he is back on the fast track to get him into the OR again to do the trach for sure.
 
Suzanne has been the picture of grace under pressure, but this has put her in tears. She still has tremendous confidence in all that is happening, but as she said, to see her little Parker with his hands tied so he doesn’t pull out his vent, his head shaved for the IV, and not to be able to hold him is breaking her heart. Please keep praying for everyone involved in this entire picture!
 
Thankfully, Ian’s sister is there right now and will be there through yet another surgery. I am going back up next week.
 
Hope everyone had a wonderful Thanksgiving and long weekend…..Chris

Oldies but goodies . . .

A few weeks ago we visited the Lang side of the family in Iowa. This is the first time much of the family had an opportunity to meet Parker. It seems like just yesterday we were there for my cousin’s wedding and had just found out we were having a boy, there were many lively discussions about what his name should be!

Turns out, my Grandma Lang kept many of the emails that I sent to family and friends to update them on how Parker was doing, before I started the blog. Since I know this blog is read daily by families being told their little one has bilateral vocal cord paralysis or families who are facing a tracheal reconstruction surgery, I thought I’d post these emails.

I will post them in order. They start when Parker was four weeks of age and had just been trached. I’d love to get my hands on anything previous, if anyone reading might have them, please let me know.

Here we go:

Sent: Thursday, November 30, 2006 6:07 PM

Subject: Parker has a new way to breathe!
Happy 4 week birthday to Parker! And what a 4 weeks it has been.
 
On Tuesday Parker had a tracheotomy put in and he is recovering nicely from the surgery. He can finally breathe properly (a relief for everyone) and the clock is finally ticking down the days until he can come home (another relief!).
 
It was a bumpy road to the trach: still more tests revealed nothing. Nothing else wrong with him or nothing else that could tell us why he has the vocal cord paralysis. Last week he developed some complications from the lack of oxygen flow through his little body. The doctors caught it early and he responded beautifully to the treatment and has made a full recovery. (For those who like to google as much as I do: Necrotizing Enterocolitis).
 
About two weeks ago the doctors first uttered the word tracheotomy to us. At first it seemed shocking and dramatic, but as it become more and more clear that it might just be the only way to get him out of the hospital we warmed up to the idea. After all, we just want to get our little guy home and on with life as normal.
 
Most of the doctors seem to think that there is still a very good chance that the paralysis will resolve itself on its own in a matter or weeks or months. So, at first we pushed to wait a few weeks on the trach. It didn’t seem like a good idea to go putting a hole in our little guy’s neck if he was just going to get better a weeks later. The doctors agreed. Then he developed the complications and we all reversed course and wanted the trach sooner rather than later- especially because on Saturday night little Parker had to be put on a ventilator and have his little hands tied down to keep him from pulling it out. The operation to get the trach couldn’t get there fast enough for us.
 
If you’d asked me three months ago if I would have been ecstatic to get a phone call that my tiny newborn would be headed to the OR tomorrow to get a tracheotomy I would have laughed out loud. But, that is exactly the way we felt on Monday when the call came. We’ve learned in the past few weeks that one’s idea of “good” news can change in a hurry.
 
So, all that is left from here on out is for Parker to heal up without any complications and infections and for Ian and I to learn all about how to take care of a baby with a trach. We have to learn to change it, suction it, and monitor it (and him) for signs of complications. We also have to get re-certified in infant CPR and learn how to use all of the machines and monitors that go along with a trach. We have to outfit our home with lots of gear like suction machines and humidifiers. And, because to start with someone will have to be in the room and awake with Parker 24/7 we will have to hire a team of nurses to be in our home much of the time.
 
The staff at SickKids tell us that all of this can take anywhere from 4-8 weeks. We will know more about the timeframe in a week or so when he moves out of the NICU to a big kids floor and we formalize our training schedule.
 
Nurses in our home. Going to the grocery store with suction machines and spare trachs. Noisy monitors and humidifiers. A baby whose cry can’t be heard, only seen. This is what our new normal life is going to be like and we can’t wait to get on with it.
 
We do remain hopeful that one day we will go to the SickKids Ear, Nose and Throat clinic and they will tell us the good news that Parker’s vocal cords are starting to move. Some studies show that about 70% of these cases spontaneously resolve in 6 months or less. If not, then we will look forward to the next phase which is surgery that might happen as early as 2 years of age. It seems like a lifetime away, but then I just remind myself that it was only yesterday that we welcomed Berkeley to the world (4 1/2 years ago).
 
I promise to send more pictures soon. The only ones we have of the trach are right after surgery when he was still hooked up to the ventilator. I’m headed to the hospital tonight after Berkeley’s first parent/teacher conference and hopefully I will remember my camera.
 
Love, Suzanne

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Sent: Sunday, December 10, 2006 9:00 PM
Subject: Celebrate with us! Parker is out of the NICU!
Parker graduated to a big boy room on Friday. This is great news for us and for him- his little world is expanding. The move on Friday was a fitting end to another roller coaster week for our little peanut.
 
 Last weekend he started vomiting and after a series x-rays, ultrasounds and blood tests it was determined that he had pyloric stenosis. This is the enlargement of the muscle between the stomach and the large intestine. As the muscle enlarges it closes off the passageway and food is unable to pass out of the stomach. The problem is minor, not uncommon in boys and unrelated to the vocal cord paralysis. Unfortunately, it did mean another trip to the operating room on Tuesday to fix it. Lucky for us (and him) the doctors were on top of it and decided to take advantage of the time to go ahead and put in his “G” tube. The G tube is a surgically placed feeding tube in his stomach- ordinarily they wouldn’t have put it in until closer to his discharge but they didn’t see any need to put him under general anesthesia again to do it. So, this was Parker’s third trip into the OR in about 10 days. We really hope to never have to visit the 2nd floor of Sick Kids ever again!
 
He seems to enjoy his new surroundings. Seeing a TV for the first time was quite inspiring. He thinks it is really neat! Berkeley and Griffin are happy that general pediatrics is much more fun to visit than the NICU. There is a play room, the nurses give them Freezies, and they can actually bring toys and food into the room and hang out.
 
Today was especially exciting because Parker was able to get off of his IV for the first time in a few weeks. This means that the only thing left permanently hooked up to him is the oxygen saturation monitor but the nurse let us take it off today and walk around the room with him. Free at last! Once Ian and I get a few trach changes under our belt we might even be allowed to take him in a stroller down to the atrium of the hospital and let him join us for lunch and a walk! He has no idea what awaits him.
 
We still don’t know exactly when he will get home but we suspect it will be early in the new year. Whenever it is, it can’t get here soon enough.
 
That’s all for now. I hope our roller coaster days are officially over and from here on out it is smooth sailing!
 
Hugs!
 
Suzanne

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Sent: Wednesday, December 27, 2006 9:19 PM
Subject: We have a date . . .
hello all.
 
good news at the hospital today.
 
parker’s discharge date has been set for January 3rd.
 
there are only two things that could keep him in longer: if he happens to get sick or if our insurance dilly dally’s on their approval of our home care. we really don’t anticipate either.
 
also, parker had a feeding study today. as you know, he has been fed exclusively through a feeding tube (first nasally, and now through a surgically placed tummy tube). the feeding study went really well. he did aspirate on just liquid but he didn’t on a liquid thickened slightly with rice cereal.
 
the study was quite interesting to watch. he drank sugar water with barium colorant added and then thickened up with the cereal. they do a running x-ray and recorded it on a dvd.
 
so, starting tomorrow morning we are going to be able to start feeding him with some bottles. we have to start cautiously, as there is still a chance that he can aspirate. but we are optimistic about things. everyone feels that once he gets good at coordinating his suck and swallow that he will move quickly away from the feeding tube and that we will be able to start introducing solids at a normal time and rate.
 
how quickly we get to have the tummy tube removed remains to be seen. there are a few issues at play. the amount of cereal he needs added isn’t so much that he can’t take all of his feedings by bottle ultimately, but he might tire easily at the bottle as he had not ever had to work to eat. so, we will start to limit his time at the bottle to 15 minutes and then whatever is remaining will go through the tube. also, he’s had some weight gain issues and since he hasn’t burned any calories to eat through the tube and will now be burning a lot more calories to eat through the bottle we have to balance getting to be a real baby and eat normally with making sure he can intake enough calories to keep gaining weight. we can also correct this latter problem by giving him more concentrated formula or adding fat to it. we have to work out the details with his dietician.
 
that’s our story and we are sticking to it.
 
we’ve taken a room at a hotel a block from the hospital for the next two nights. so we will be letting the big boys swim and play downtown while one of us is with parker all day and evening for the next few days. we are even going to be allowed to take him out to the hotel for a few hours if we want to.
 
suzanne

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Sent: Tuesday, January 16, 2007 10:07 PM
Subject: Welcome Home, Parker!
Dear Family and Friends,
 
Well, I’m just a little late in sending this out, but we have been busy!!!
 
Parker came home from Sick Kids on January 3rd- after 9 long weeks. (The average in-patient stay at Sick Kids is 8 days – and this is a hospital that cares for the most critically ill children from all over Canada and in some cases, the world!)
 
He is doing remarkably well at home. He grows stronger by the day and is getting better and better at eating by bottle. We hope to be able to have his feeding tube removed in a few months.
 
Berkeley and Griffin are adjusting nicely to life at home with a baby who requires a lot of care. They both are as patient as you could expect them to be with everything. Don’t think for one minute though that I don’t go through parts of each day with at least one kid hanging off of my leg while trying to mix a bottle and cook dinner at the same time!
 
We have a night nurse whom we love and we are working on creating and staffing our remaining nursing schedule. Fortunately, we don’t really have to have a nurse here all the time as we once thought. We do have to remain close to Parker at all times, but so far that is working out ok. It helps that he seems to be quite capable of sleeping through much of the commotion that our home seems to be constantly in.
 
Having a trach makes Parker a high maintenance guy and he is completely worn out by things that most babies and parents would take for granted, but we expect his energy level to increase with each passing day. I imagine that by the fall we will look longingly back on the days when he snoozed all day!
 
Thank you all for your thoughts and kind notes during this time. When we started this journey we thought it seemed like an eternity when the doctors told us he might be in the hospital for two weeks. Those weeks turned into months and while in many ways those 9 weeks were the longest of our lives, they also went by really, really fast.
 
For now, we are hopeful that the vocal cord paralysis will resolve itself in the not too distant future, but realistically, we assume that Parker will have the trach until he is a solid candidate for surgery sometime around age 2. There is some data that suggests that vocal cord paralysis of unknown origin might resolve in up to 70% of cases. Those seem like fairly decent odds until you learn that the chances of actually having vocal cord paralysis of unknown origin are less than one in a million. Several people have suggested we play the lottery!
 
  -Suzanne

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Sent: Wednesday, April 25, 2007 9:36 PM
Subject: A Little Update on Parker . . .
Hello family and friends,
 
We’ve had an interesting few months with Parker home. He’s doing fantastic: growing and thriving and generally keeping everyone on their toes. Berkeley and Griffin still love their baby and fight over helping care for him.
 
Here is a little recap:
 
Parker came home from Sick Kids on January 3rd. He had his first follow up appointment with ear, nose, and throat doctor (ENT) on February 5th. At that appointment the ENT did a scope down Parker’s nose to check things out. Astonishingly, we learned that the vocal cords were moving. It was such a surprise that Ian and I really couldn’t even ask any questions, we simply couldn’t believe it and we couldn’t think straight. It was decided that we would wait until Parker’s feeding study on March 7th to determine a plan of action. It was a very, very long month. So much was riding on this study. Well, the study went well and we were able to see the ENT again that very day without an appointment. Another scope reconfirmed that the vocal cords had regained full or near full function and that we could make a plan for decannulation (removal of the tracheostomy.) A few days later we received a call from the ENT’s nurse telling us that the decannulation was scheduled for May 3rd. We were disappointed that it was 2 months away, but this is an elective surgery. All that was left to do was wait and keep Parker healthy. We battened down the hatches on an already stringent decontamination policy in our house.
 
Our anti-germ management has worked. Parker has been very, very healthy despite two brothers who don’t always like to follow the “rules.”
 
Unfortunately, though, last Saturday morning I noticed that Parker seemed to be working a little too hard to breath. I packed all three boys up to run down the road to a clinic that we love. Ian was at work and I figured I would get a pat on the back and sent home being admonished for being an over protective mom. To ease the pain of going to the clinic on one of the first warm days of the year I promised Berkeley and Griffin we would get happy meals for lunch (Teenage Mutant Ninja Turtle Happy Meal toys are worth a lot in our house!) 
 
Boy was I wrong. We were sent away by ambulance to the local hospital. I won’t go into details about our stay in the ER, but suffice it to say we were very unimpressed with their ability to cope with a child with a trach and a feeding tube. We demanded to leave and took him home that night.
 
The next morning his nurse suggested that he wasn’t responding quite as well to his meds as she would like and she suggested that we take him to the ER at Sick Kids just as a precaution. We did. He was admitted on Sunday afternoon and has been there ever since.
 
It is asthma. No surprise really as Ian and Griffin are both asthmatic and Berkeley has had a few episodes when reacting to animals. We’ve added to our kit at home an aerochamber that fits over a trach and a portable nebulizer unit.
 
We hope that Parker will come home tomorrow, we will know more in the morning. He is doing well and they assure us that it is completely normal for a baby this age to take this long to get over an asthma attack. They are also taking extra precautions because of the trach and because we want to keep him on track for next week’s decannulation.
 
His ENT paid him a visit today and assured me that everything is still in place. If Parker is still in the hospital on Monday we might have to consider postponing but for now we hope to have a face breather come Thursday afternoon next week.
 
We remain so grateful for the amazing staff at Sick Kids. They truly are an amazing, world class hospital and have been such a gift to us through this entire thing. I am saddened daily when I read the treatment that other trached children receive at their hospitals. I naively assumed that there were more “standards” of care, but I was very, very wrong.
 
We will keep you posted. Please keep us in your thoughts as we navigate through this (hopefully) last week of caring for a child with a trach. We look so forward to hearing Parker’s gigantic belly laugh for the first time. We even look forward to hearing his cry! We’ve never heard him cry, can you believe it? I’m sure in a few months we will long for the good old days when we couldn’t hear him, but until then . . . .
 
Love, Suzanne

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That’s it. As most of you know Parker was not decannulated as planned in these emails. He developed trachealmalacia. So we kept the trach another year and embarked on the reconstruction journey that is this blog.

He Dances . . .

 

On Wednesday evening Parker had his first dance recital. I have to admit, I hope one of my boys takes up dance. I love to dance and really need to get myself signed up for that tap class I keep meaning to take.

He was a fine sight in his costume complete with sparkly bow tie and cumberbund, he did all of his moves and was really into it. All of the kids were great. There was the little boy who cried the entire time and the little girl who wanted to walk off the stage to her mommy and daddy. The pre-k boys did some great break dancing. It is really a fun night to watch all the little ones.

As I watched my little boy dance his heart out I couldn’t help but be a really proud mama. When I think back on his first days I know it was hard to imagine then what life might look like now. We had no idea, truthfully, what the future held. Thankfully, he sings and dances and talks and sasses his mama, just like every little boy should. I really am proud. But there is something more. I have come to realize that each passing milestone and event in Parker’s life will be full of joy and sorrow for me. Joy for him. Sorrow for all the angels we know that won’t ever dance.  And for their moms. For their moms who I’ve laughed with and cried with over the past three years, I shed a special silent tear on Wednesday night.

Of stinky breath, drool and pee in my shoes!

Thought I’d better update.

Knock on wood, tomorrow morning we will head home. We aren’t out of the woods yet in terms of a bleed out but I suppose the feel comfortable with us leaving at this point. Parker really misses his daddy and his brothers and despite my best efforts to have fun while we are here, he is ready to go home.

On Thursday we were able to meet a family from Kentucky whose son is formerly trached. They met us at Cincinnati Museum which includes the Duke Energy Children’s Museum. Lots of fun and both boys fell asleep in the car on their way home! For dinner we met my elementary school friend, Tony, at the Cheesecake Factory. We haven’t seen each other in years but we’d recently reconnected on Facebook. It was fun to catch up.

Friday we went to a fun little indoor playplace in Covington, Kentucky. On our way back to the hotel to meet Grandma we got a call that we had a room at Ronald McDonald House. The hotel graciously let us check out without charging us for the night and we headed back down to the hospital with Grandma in tow for our first experience in RMH.

While we were living in Canada we had the extreme luxury of having Ian’s company pay for our hotel bills on each of our visits. We always opted not to stay in RMH during those times so we didn’t take a room away from another family. It’s been a great experience to stay here and if our medical adventure requires any more long stays we certainly won’t hesitate to stay here again. This RMH is the third largest in the nation, it houses up to 78 families at any given time.  There are playrooms, craft rooms, laundry rooms, mediation rooms, exercise rooms and two huge kitchens. There is lots to eat and lots to do. And, of course, there are lots of families to meet and kids to play with. The best part is we are literally right across the street from the hospital.

Saturday we went to the zoo. We met two other trach families there and Parker really enjoyed the warm day with kids his age. He didn’t like the birds but loved watching the polar bear swim.

Today we are just kind of hanging out. Grandma is headed back home and we are just taking it easy and organizing ourselves for our drive home tomorrow. Parker’s throat does hurt him and it is like clockwork when he needs his pain meds. Hopefully in another week that will go away.

Oh. I guess I’d better explain the title of my post. It is getting better, but Parker’s breath is just downright gross. If you’ve ever had your wisdom teeth out you know what I’m talking about. At night he seems to think that I have to sleep facing him. That means I’m usually contorted into some odd position to avoid the dragon breath! He’s also been drooling a lot. Not really a surprise but he sure hates it. At first he was down right hysterical because he was “dripping.” Now it is just at night. Thankfully these are both temporary side effects.

Now, about the pee in my shoes. Lots is going on at home . . . I woke up one morning to a text message from Ian with great news. Griffin woke up on his own the night before to go to the bathroom. This is first as he’s still wearing pull ups at night. It sounds like amazing news until you learn that he walked into our bedroom in a sleepy stupor then turned around and walked out. Ian went to follow him  and found him in Parker’s room with his pants down peeing in my running shoes. All I could do was laugh. And, remind Ian to wash my shoes!

Life sure is an adventure.

More pictures from our visit are here: http://www.facebook.com/album.php?aid=192205&id=573401017&l=2a617bcca0

Parker strikes again . . .

Nothing. Surprises. Me. Anymore.

Looking back I wish I’d started this blog just after Parker was born. I didn’t. I had a healthy e-mail list but unfortunately, I didn’t save any of the e-mail updates I sent out. When it came time to do Parker’s reconstructive surgery I knew I wanted to start a blog. I wanted it for myself as a record. I wanted it for friends and family to keep up hour by hour or day by day. And I wanted it for all the families who would go through this after us. I know, nearly two years later, that there are families who read the blog looking for some notion of what it is like for those few weeks before, during and after the reconstruction.

When I named the blog “The Road Less Travelled” I had two things in mind. First, just this whole trach, medically fragile thing. Second, kind of like a secret joke to myself, I figured that somehow, on this path, Parker always manages to do things differently.

I’m telling you this now because this trip to Cincinnati was no exception. Here’s a recap.

Sunday afternoon we arrived and to blow off some energy we went to the Newport Aquarium. Lots of fun. Parker even tried to pet a shark but his little arms were too short.

We checked into the hospital for his sleep study and Parker was an absolute peach. He did everything the nurses asked him to do and he did it with a smile. Things were looking good!

Overnight he did pretty well but I was annoyed because I thought he had a good night, meaning I didn’t think he snored and struggled as much as I see most nights at home. When I lamented to the respiratory therapist she assured me that Parker “showed his true colors.” In fact, she said she was going to find the doctor ASAP and get some information to the pulmonary team before we went into the OR because he’d had at least one 30 second event during the night. An event, in sleep study terms, means that for thirty seconds he didn’t breathe. I learned later that during that time he desat immediately into the 60s and stayed their for the whole event. Not good.

We actually went into the OR nearly two hours late on account of everyone trying to get all the information into the right hands. They came out during the surgery and informed me that Parker needed an emergency tonsillectomy and adenoidectomy.

Now, I’m a planner. I like to understand what is going to happen. I like to have lots of back up plans for all the things that can potentially happen. Since I knew it was likely that the tonsils would need to come out this year I’d asked a lot of questions over the last few months. I was assured that they would never take out the tonsils in an unplanned surgery as it messed up the OR schedule too much and since I was out of town I would need to stay in town for a week or two after to make sure Parker didn’t have a bleeder.

So when we packed for the trip I didn’t pack extra undies. So you can imagine that as soon as I got over the shock that things were so bad during the sleep study that they needed to back up the OR schedule to take Parker’s tonsils out ASAP then I started trying to remember where the mall was because I knew they were going to make us stay around for a little while.

Parker likes to break the rules.

And there is more.

The pulmonologist talked to me after his portion of the scope and showed me some interesting pictures of Parker’s airway. I immediately recognized the trademark “cobblestoning” in his esophagus. He’s never had it and it wasn’t present at his last scope in July but I have seen enough scope images from other trach kids to know what I’m looking at and it usually means reflux. To make matters worse, there is evidence in the tissue in Parker’s lungs to indicate that he is not only refluxing but that he is silently aspirating the reflux causing some damage to his lungs. Hopefully over the next few months we can get this under control and reverse any damage and certainly avoid causing any more. At any rate, it seems we will have at least one more visit with our pulmonolgist friends.

There is some good news: the graft site from Parker’s reconstruction surgery looks wonderful, healthy, perfect and even better it has grown since his last scope. You may recall that sometimes reconstructed airways don’t grow adequately to support the airway and an additional reconstruction is required. We aren’t out of the woods on that yet, but it is really comforting to know that his airway is growing at this point.

So, we were admitted overnight for observation. Having a reconstructed airway complicates just about everything and the edema post tonsillectomy can be taxing. They have also asked us to stay in town until next Monday. We are amusing ourselves with shopping and complimentary tickets to area attractions for kids.

ENT is hopeful that the removal of the tonsils and adenoids will resolve many, if not all, of the nighttime issues. But only time will tell and, of course, we don’t have the full sleep study results yet.

You may recall that Parker has had his adenoids removed one time before. I distinctly remember Dr. James saying when he did the surgery that “Adenoids can grow back. It’s rare, but it does happen.” I laughed and said if anyone’s would it would probably be Parker’s. Here we are, two years later with fully regrown adenoids that were completely blocking the nasal passages.

Yet another reason why . . . Nothing. Surprises. Me. Anymore.

Tomorrow I will try to get a card reader and upload some images from our stay!

Seven months later . . .

It’s been seven months since I updated this blog. That officially makes me slackerific! Here’s the lowdown since July:

We trialed a drug that we had reason to believe might reduce or eliminate Parker’s cyanotic spells. Instead it put him to sleep. After three weeks of a kid who could barely keep his eyes open to function we called it a day.

After Parker woke up from his drug trial something miraculous happened. He found his voice. Something clicked and he really started adding words to his spoken vocabulary. By the time he started speech therapy again in September it was remarkable to read back on his educational plan that had been written in May for an essentially non verbal child. Since then, he’s basically not shut up. His vocabulary is on par with other children his age (including important phrases like “We will, we will rock you” and “I have a great idea, Mommy!” He does have a lot of work to do with his actual speech. He often lacks clarity and that is frustrating for everyone but we are managing just fine.

Along with this vocabulary came an opporunity for Parker to articulate what he was feeling just before an episode. He was then and is now adament that he “can’t breathe.” With this, we began coaching Parker that he needed to slow down and try to breathe when he felt frustrated or out of control. In short, the number of cyanotic episodes has significantly decreased since summer. In fact, now they are almost exclusively associated with an injury. The bummer side effect to all of this is that Parker is now potty trained and since he pees every time he has an episode it causes a bit of a mess. And when you are wearing eighteen layers of clothes to sled in the back yard it sure is interesting!

While I am delighted that the episodes are now few and far between, I find myself re-sensitized to them and I have a mini panic attack during each one. I am helpless and fearful. Constantly wondering “Is this the one?”

Parker does still have noisy night breathing. In fact, the impetus for this update is our trip back to Cincinnati the end of this week. On Sunday he will go to the sleep lab for a sleep study and early on Monday morning we hit the OR (funny, kinda like “hitting the gym” in my world!) for a bronchoscopy with Drs. Cotton and Wood (ENT and Pulmonolgy).

It is possible that the time has come for a tonsillectomy. They are tricky on the reconstructed airway. But I will go into more detail if that is on our schedule for 2010.

The weather is really iffy this week but hopefully we will have an easy drive and time to go the aquarium and meet up with some friends on Sunday before the sleep study.

I will keep you posted. And I won’t wait seven months this time!

Love, Suzanne

New stuff . . .

I’ve been slow in updating. Part of that is because we’ve been so busy! Part is because, honestly, we’ve been digesting.

As you know, Parker had a sleep study done a few months ago. Per the sleep study, his ENT wanted us to discuss the possibility of placing on CPAP breathing support at night.

Another issue re-surfaced after the sleep study. Most of you will need a little back story on this one: when Parker was about 4 or 5 months old he started having these spells. From the beginning they were obviously triggered by a couple of things: he was mad, hurt, or scared. If we were out of his sight for too long, or his brothers took a toy away, or he fell and hurt himself, these were all sure triggers. The spells are scary. Essentially, he passes out and as soon as his body loses consciousness he finally starts breathing again.

We talked to every doctor we know and described the episodes in detail. Everyone independently assured us that our feisty redhead was holding his breath and that he would outgrow it and our job was to try to avoid the episodes and also avoid collatoral injury if one were to happen.

I never bought it. Those who see me often know that I never, ever felt that was what was happening but despite many late nights on the internet researching I also never came up with a plausible (in my mind) alternative.

Finally, after two years, Parker had two episodes in the recovery room after his hernia repair. He was wearing an O2 monitor and each time his levels dipped into the 40s. The nurse calmly assured me that that was NOT breathholding. I went home and hit the internet again. This time I found an article that resonated. I was certain that what this article described was exactly what was happening to Parker. I passed the article to his ENT team at Cincinnati and they agreed to refer him to Dr. Robert Wood.

In Cincinnati CPAP is managed by the pulmonolgy department. That turned out to be our lucky break. We were going to need to see pulm anyway for CPAP so we got referred to Dr. Wood who is the head of the department. He runs a world class and award winning department just as Dr. Cotton does for the ENT department.

A week ago we saw Dr. Wood. I braced for an appointment where we talked a lot about Parker’s airway history and a lot about CPAP and if I was lucky I might get 3 minutes to say my thoughts on these spells. I couldn’t have been more wrong.

To make an already long story a little shorter, the bottom line was that after lengthy discussions, Dr. Wood agreed that what was happening with Parker was not likely typical breathholding and very likely what was described in the article. He believes that Parker is having an abnormally strong emotional reaction to some stimuli and they are causing an anxiety attack of sorts that renders him unable to breathe temporarily. Further, he is concerned that these attacks have the potential to be very, very dangerous. There is the obvious concern that he will hurt himself falling (he’d fallen down the stairs just a few days before our appointment). Second, Dr. Wood feels there is a possibility that one of the episodes could cause a cardiac arrythmia that could be hard to recover from.

End result was that Parker is currently trialing a medication called clonidine. The drug is used for a myriad of things – lowering blood pressure, meth detox, ADHD, brain injury, among other things. It also acts as a mild sedative or anti-anxiety drug. The article (actually a research article) showed some significant promise in limiting or eliminating the episodes with the drug.

Parker has been on clonidine for a week. He slept for most of the first 5 days but yesterday and today he is mostly back to his normal self. He has not yet had an episode since we put him on the drug. That is good but I don’t count those first 5 days. So, the jury is still out as far as I am concerned but things look promising.

If you are still with me. Wow. There is more.

That was a Thursday. On Friday we went into the OR together with Drs. Wood and Cotton. In looking at Parker’s airway and reviewing the results of the sleep study it was decided that Parker’s apnea is not severe enough to warrent CPAP. In fact, with the exception of tonsils that will eventually probably have to come out, his airway is looking really, really good.

Then the other shoe dropped. Dr. Wood said that there were several concerning events during the sleep study. Several times during the night Parker desat into the low 80s or low 70s for no apparent reason. They weren’t associated with an apnea or really anything else that they could tell from the sleep study. His average sat during the night was 94. That didn’t phase me, because that was pretty typical during his time that he was trached. Dr. Wood wasn’t impressed. In fact, he didn’t like it.

The conclusion was that there is something else. Whatever it is is not airway related. Next stop: lungs and heart.

We are going back in three weeks for a high res chest CT scan and an echo cardiogram. We will also meet Dr. Wood again in pulm clinic to discuss our clonidine trial.

We have no idea what the future will bring. For now, we remain thankful for the fact that Parker in many ways is a very typical little boy. He knows his letters and shapes and is learning to ride a bike. He learns new words each day, though his favorites remain NO and WHY.

Our journey continues . . .