Parker’s Place

Just got back from the OR. Things looked good but they were concerned about how long it would take to let the sedation wear off so they opted to downsize his ventilator tube and extubate at the bedside tomorrow. This IS a good thing because we are concerned about how Parker will react coming out of the sedation and extubating bedside lets us be present and available to him immediately. So, another day of waiting but I think it will be a good thing.

Grandpa Bug is here and got to witness the glory of a hospital transport team down to the OR. How many doctors and nurses and respiratory therapists does it take to get a ventilator dependent kid to the operating room? Answer: LOTS! During the transport they have to unhook the mechanical ventilator and actually hand bag breaths for him. Only once did we have to remind them to keep bagging . . . Imagine me calmly saying, “um, yes, someone please breathe for my kid!”

I believe a margarita and some retail therapy are in order for tonight. Plan now is to extubate bedside tomorrow at about 10 a.m. I will keep you posted.

At 11:15 a.m. today Parker will go back to the OR. They are still hopeful that they can take his ventilator out today, wake him up and get him breathing on his own. If they have any concerns about the graft site they might choose to keep him intubated for a few more days. Overnight they switched his meds to a cocktail that will allow him to wake up quickly as soon as they turn them off . . . as usual, they had to give him a double initial dose and some more bolus doses than would normally be expected. They did get him settled and comfortable and he and his numbers look great right now.

I am much more nervous about today than I was about the surgery. Things seem to have gone really, really well, but things aren’t always as they seem and there is, of course, a risk that Parker will have to be re-trached.

Speaking of the trach. I will clarify a few things because I know some people are confused:

When they did the surgery, they did remove the trach and also removed the stoma. (The hole that his trach went into.) Parker’s stoma had a lot of bumpy scar tissue, all of that is removed and all that remains is a nice, tidy, three inch incision along the fold of his neck. Right now, Parker is being ventilated via an endotracheal tube that goes through his nose and down into his lungs. His ventilator regulates his breaths entirely, meaning they have set how many breaths, how often, how big, and how much oxygen he gets. When he starts to rouse, he does breathe over or around his ventilator which just means that he might take extra breaths or he might take more shallow breaths.

If they do take him off of the ventilator today we will be monitoring him closely for any stuggles to breathe: some could be associated with the sedation and his overall strength. He is also going to be breathing a completely different way than he ever has before. Not only is it different but he has to draw a breathe a lot further to get it to his lungs. It doesn’t seem at first glance that it would actually be harder or any different to breathe out of your nose or mouth than out of your neck, but consider for a moment the extra distance the air has to travel to go from your nose to your lungs. It is almost double. There is also a risk that the ventilator tube itself will have caused some swelling that will make it harder to breathe. And of course, the integrity of the graft site will still be in question for a few more weeks. The graft should integrate into the trachea, form a mucosa covering and just act like it has always been there, but that doesn’t always happen. Sometimes the body attacks the graft, among other issues. We do not anticipate any of these things being an issue for Parker . . . but we did not anticipate life with a tracheostomy the morning of November 2nd, 2006 when Parker joined us.

Fingers crossed for us!

Parker had a good night and he’s having a pretty good day. They are still tweaking his meds every now and then to keep him “happy.” ENT is very pleased with how things look and they are planning to try to extubate (remove the ventilator) tomorrow morning when he is in the OR for a scope. So, if all goes according to plan he will wake up in post-op recovery and not back in the ICU.

They removed his neck bandages today so I got my first really good look at his naked neck. It looks good. Parker had a pretty rough and bumpy stoma from scar tissue, that has all been removed and there is just a 3 inch scar across the fold of his neck. I imagine it will be nearly invisible over the years. His rib scar looks good too. He’s healing up well.

I just spoke to Colin’s mom. His scope this morning went really well. They have given them the option of staying around for a scope in a week or going home and coming back in a week for a scope. They left it up to Colin and he wants to go home to see his big sisters and his dog Tex. So, they are loading up their car and headed home to Texas today. I can’t wait to see Colin and Parker playing together next week when they are back for their scope!

I have looked in the surgical waiting room for Tommy’s parents but I haven’t seen them yet. I’m sure I will connect with them later today at some point. I will be anxious to hear how things went for him today too.

I also met an adorable little red-headed trach boy in the elevator. He’s just started his journey . . . he was trached 6 weeks ago. I had to correct myself when I said “I have a little red head with a trach too!” I still get chills in the hotel when I see things that hopefully I will never have to use again: an aero-chamber for a trach to give asthma meds, an artificial nose, the spare trach kit, suction catheters, etc.

We are definitely not out of the woods yet . . . but it looks promising.

Please keep Parker in your thoughts tomorrow morning. We want a smooth extubation! No drama.

Griffin and Berkeley looked at all the pictures of Parker and Griffin was apparently quite taken by the close up of his hand with the IV ports. “Wow! He’s got lasers!”

They’ve got Parker’s blood pressure well under control but now his heart rate is a little high. There is very much an art to this process. Every kid is different and needs a little different cocktail. I’m amazed at how often the medications and their dosages can change in a day.

There really isn’t a lot to report here. He’s having a good day. There is still a little battle with his bloodpressure so they’ve switched his meds up a bit. To be clear his pressures aren’t alarming they are just trying to keep them from getting that way.

His cultures also showed that he is positive for pseudomonas so they switched his antibiotic. Pseudomonas colonization is very, very common in kids with trachs and since he doesn’t have any symptoms he probably is just colonized and not having an active infection but to be sure they did switch the antibiotic.

This morning when I arrived and met Parker’s nurse I immediately noticed the telltale scar. She was trached for a year when she was 8 years old. I don’t know if I mentioned it before but the waitress in the restaurant at the hotel told us that her son (he’s 36 now and fighting in Bagdad) was trached for his first two years of life.

Colin’s mom dropped by today. He is having a good day. Tomorrow morning he goes back into the OR for a scope. They are hoping that they will get the all clear to head home to Texas in the next day or so. We will try to coordinate our follow up appointments so we can see each other again and they can meet Parker while he is awake.

Tommy’s family is en route to Cincinnati now. I will pop down to the waiting room tomorrow while he is getting his scope to meet them.

So, all in all, things are going really, really well. I’m very pleased with this phase of the process, but I’m anxious to get him back in the OR to see how things look on Tuesday.

After some trial and error it seems that we’ve got Parker a little more under control for now. Today, about every hour he’s been wiggling around, thrashing his head a bit, and we thought he was waking up. So, he was getting bolus sedation medications. Unfortunately, this was causing his blood pressure to drop dangerously low. At some point it was decided that because Parker is a notoriously restless sleeper that maybe he isn’t waking up after all but is just doing his usual restless movement.

Theory is that we were giving a little more sedation than was really needed and that was driving down his blood pressure. But to minimize the movement- even the restless movement- we needed to do something else. So now they are doing a paralytic as well. That seems to last an hour to an hour and a half. The catch with the paralytic is that you really don’t want to be paralyzing someone who is actually awake . . . so they are double and triple checking all the signs that he is sedated before they give the paralytic alone. If they think he might actually be waking they are giving sedation in conjunction with the paralytic.

So far this is working and has allowed us to avoid adding an additional drug to the mix specifically for controlling the blood pressure. Of course, all of this could change overnight . . . still a moving target.

In other news, the drain tube for the surgical site at the rib was removed today. The site looks good. It’s about a 2 inch incision on the top rib on the RIGHT. Still haven’t really found anyone to ask about the whole left hand rib thing that the surgeon we met at the airport told us about.

His fever has lessened, which is good. We should get the cultures back tomorrow, but they expect them to be negative. Apparently it is very, very common for an extended fever after this particular surgery and they assume it has something to do with the healing process.

Parker is still struggling a little with his sedation meds. They’ve switched up the cocktail a little bit to see if they can keep him a little more steady. He’s needing bolus top ups every 1.5 - 2 hours today which means that things are still not quite there. It truly is a moving target. He’s also having some trouble regulating his blood pressure. It is too low. So far though the pulses in his extremities are fine, but they are monitoring it closely.  The poor nurses are running ragged trying to keep up with his care and keeping the meds at arms reach.

We have uncovered a little bit of interesting information that I wanted to share . . . Redheads are notoriously hard to sedate and anesthetize. After we overheard a couple of nurses saying that redheads are always trouble I decided google it. Sure enough, there is lots of good data that backs up redheads needing a lot more sedation and anesthesia meds than their blonde and brunette friends. This seems to be accepted knowledge amongst the nurses but it isn’t a formal piece of training or data they are given in their training. One of our nurses even printed off some copies of the studies that I saw quoted on the dot.coms yesterday.  It turns out that redheads are more likely to remember pain and conversation during surgery! How horrid. I will make it my personal mission to educate any doctors and nurses and anesthesiologists that we meet in the future!

Warning, some of these pictures show Parker on the ventilator. If you don’t want to see this, please skip this post.

Parker had uneventful day yesterday. His night was a bit rough. As we were leaving last night he was getting a little restless and we wondered if he was starting to hit the wall with his current dose of sedation meds. He was. He was restless overnight and needed to have his meds upped. They are also using more paralytic drugs with him right now to keep him still. This is all a normal part of the process, but it is stressful to try to keep him from moving his head and neck and make sure the ventilator tube doesn’t come out while they sort out the additional meds. Thankfully we aren’t having the same delays that we had that first night, but believe me any delay FEELS like an eternity to us.

He has also spiked a fever, which is normal after this surgery, but they just drew cultures just to make sure. He’s also on post-operative antibiotics which should knock out anything that might be brewing.

We are very pleased with everything so far. He seems to be doing well and exactly as they want them to after this surgery. Of course, in this world, we are always waiting for the other shoe to drop. It ain’t over ’til it’s over . . . and even then it isn’t over.

Ian flew back to Toronto today. He is going to spend a day with the boys and then is heading to Michigan for Monday and Tuesday and then driving back down here for Wednesday, when they plan to take Parker off of the breathing machine.

Today . . . I promise I will put some pictures on here. My laptop is not designed for fancy photo editing and storing so is moving very, very slowly. But I should have some time to dedicate to it today. Parker’s big, red curls are captivating everyone who comes into the room!

We spoke to Griffin and Berkeley yesterday. They both wanted to know if Parker got his trachy trach out. Berkeley had lots of questions about how many needles Parker got and if he cried . . .

We spent some time yesterday with Colin and his family. Colin is doing really, really well. He’s getting his “sea legs” back and his narcotic withdrawals are getting less and less with each day. They hope to head home to Texas some time next week. Colin’s big sister’s miss him! We also had lunch with Hannah and Molly. Hannah is a former 25 weeker who has had this surgery among others. She lives here in Cincinnati. Molly is the little girl from Indianapolis that I told you about the other day. Her appointments are going well. Her mom and dad (Joe and Myra) each came into Parker’s room to “meet” him and check out what might be in their future with Molly.

Oh . . . we also had the urology consult. It is nothing really. I have never really had so many conversations with so many people about male anatomy before!

Now I need to go have breakfast.

Parker had a good night. His need for bolus meds (a quick, heavier dose on top of the constant IV drip) a couple of times overnight. Ian and I went to the hotel for the night to get a good night’s sleep. Today will hopefully be uneventful. He will be getting a central line put in so that he doesn’t have to take his meds via a traditional IV.

They’ve placed an NJ feeding tube. Last night we were told he would be on TPN fluids via IV until he is extubated. We aren’t sure why the change but we will ask when they come by for rounds. The ENT last night told us they don’t like to blindly pass a feeding tube in because of the location of the surgery so we are hoping that this wasn’t a mistake . . .

I will try to post some pictures later today.