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.

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