Parker’s Place

Parker had a great night. He slept all night on room air, no issues. At about 6 a.m. he coughed and started to struggle a bit and had another spell. This time, he really never recovered from it. His saturations were low and his CO2 rates were too high. They re-intubated him at about 7 a.m.

The new “plan” is that he will go back into the OR on Monday (probably in the afternoon) for another scope to see if they can figure out what is going on. The operating theory at this point is that there is some swelling and/or a granuloma (scar tissue) near the graft site that is somehow combining with junk from the lungs and making it hard (impossible) for Parker to breathe which sends him into a panic and he spirals out of control.

We questioned how it could be he could be doing so well and then just suddenly be crashing if it is granuloma. Apparently, there is a type of granuloma that is more like a flap so with certain types of movement or constriction of the airway it flaps out creating a blockage. This is what they suspect.

Parker is pulling his old tricks and being difficult to sedate but they seem to have things under control for now.

And . . . furthering our own private version of “it’s a small world:” our nurse today grew up in Iowa and her aunt lives in Brooklin and recently retired from teaching French at BGM. I won’t say her name here without her permission . . . but I’m sure some of you know who she is!

What a day! ENT came up to scope Parker. He wasn’t happy but it didn’t trigger an episode, which is huge. The vocal cords looked good so the concensus was that probably there is still some extra swelling in the lower airway and that maybe a bit of saliva or secretion caused a reaction that Parker couldn’t clear on his own- partially due to the “newness” of his airway, partially due to swelling and partially due to age and size. They don’t seem overly concerned.

He’s back on room air and they’ve let him eat a little more. He is getting pureed food and we are thickening his water to slow it down a little bit. It isn’t uncommon for there to be some sputtering and gagging with thin liquids after this surgery and it isn’t uncommon for their to be a bit of aspiration. We haven’t seen any sign of that but we are not going to take any chances. He is still getting most of his nutrients via the feeding tube. But, hopefully tomorrow that will change.

Parker did spend some time today sitting up and looking at books in his bed and right now he is resting quietly with his daddy watching “Take Home Chef” on TLC.

Parker had another episode. This one was different. He was sleeping, coughed, and went into the episode. This does not fit the usual pattern of his breathholding. So, he is back on the nasal canula and not going to the airway floor today. Assuming it doesn’t happen again, they will probably take the oxygen away again this evening. ENT came by. We asked that they do a flexible scope bedside to see if we can rule in or out some possibilities. That will happen this evening too.  I will update when we know more.

Parker is breathing room air. No more nasal canula. He was also allowed to drink some water and eat some vanilla pudding. Today we will work towards transitioning him away from his feeding tube. He’s napping now and he sounds great. He’s been a little “junky” (snot in the lungs) but he’s learning how to cough it up and learning what to do with it. Remember, he’s always coughed things up to his trach before. Now when he coughs it lands in his mouth. We do try to suction his mouth but that isn’t proving to be very popular.

Parker had a good night. His only breathholding spells were like clockwork when he needed his methadone. The spells were short and he recovered without extra oxygen and he didn’t de-sat nearly as deep. These are all good things and he’s been cleared to move down to the airway floor. Hopefully that will happen today.

Already this morning he’s been sitting up and playing with the suction lines and stethoscopes. He’s definitely gaining strength and awareness. We hope that today he will get to eat something by mouth which will be an added bonus.

At 5:30 a.m. I felt the bed shaking and thought to myself: ”That sure feels like an earthquake.” Well, about 6 a.m. I turned on the TV and sure enough, there was an earthquake in Evansville, Indiana and people all over the tri-state felt it.

Parker has improved slowly over the course of the day. He is still very, very weak and very easily upset. But, his oxygen requirements are way down and he cracked a wee bit of a smile for us. So, we see the light. He will definitely stay the night in the ICU and depending on how he does overnight and tomorrow he may get to go down to the airway floor tomorrow.

Ian’s mom arrived at our house in Whitby and will overlap with my mom for a day. The big boys are enjoying the arrival of spring and being spoiled by their grandmothers. I am amazed constantly at just how well they have grasped all of what has been asked of them since Parker’s birth. Most other parents that I talk to agree that older siblings so often rise to the occasion. Griffin and Berkeley both wanted to learn to participate in Parker’s care and we included them where we could safely do so.

Tonight I will stay at the hospital with Parker while Ian goes to the hotel. We are going to switch off so that someone is always with him while someone can get a good night’s sleep. It is amazing how exhausting this is. I’ve taken a long nap everyday.

Good morning. Parker had an OK night. A few more breath holding incidents. He still hasn’t really woken up. He is more alert at times than he was yesterday. He holds your hand and he responded positively to my singing to him this morning (no laughing from those of you who have actually heard me sing!). When he is awake he is disoriented and clearly in discomfort. Last night we decided to add morphine to his meds just to take the edge off of his discomfort. I say discomfort because I don’t think it is all pain. I’m sure there is some pain, especially in the rib area but I truly think it is discomfort.

Because of the breath holding they are reluctant to wean him aggressively from his supplemental oxygen. Because he’s still on so much oxygen they aren’t letting him eat which I’m sure adds to his overall discomfort. It is really a double edged sword, but we are managing as best as we can.

The other thing at play that has surprised us is how slowly he is waking up. He was running through the sedation meds like they were candy, so we assumed that he would be much more awake by this time. It seems though that some kids absorb lots of sedation into their tissue and now that he isn’t on those meds any more, those that were absorbed are coming back out into his bloodstream and still need to work out of his system. Of course, this only happens to some kids!  Story of our lives.

The big thing we are hoping for today is to keep inching back on the oxygen so that we can hopefully let him have something to drink and eat which I’m sure will help turn things around.

It’s been an interesting afternoon. Parker has essentially slept the entire time. The doctors assure us this is normal partially because your circadian rhythms are messed up after a week on sedation. And, partially because a week on sedation is really not restful sleep. The sedation meds don’t allow you to through all of the sleep cycles so really he hasn’t had “good” sleep in a week.

He also had a couple of really severe breathholding incidents. Let me give you an idea what happens: when Parker gets mad or hurt and we don’t get it headed off at the pass he holds his breath. He turns a deep purple and his arms and legs are stretched and stiff. His hands are curled up in tight fists and his toes are pointed and his eyes roll back in his head. After a few seconds like this, he passes out at which time his natural reflex to breath kicks in, he pinks up, wakes up, looks around, wonders what on earth is going on and goes about his day. We’ve learned at home how to mostly avoid triggering the episodes or stop them before they get too far in but we don’t always manage. They are scary, but the whole thing is over in less than 60 seconds so they have really become a part of life for us. We can weeks and not have one episode and then we will have three in one day. Mostly, we are just trying to keep him safe so he doesn’t fall down and get a collateral injury while he is “out.”

So, no surprise, he did this a few times here today. Because he is wearing a monitor that measures the saturation level of the oxygen in his blood we know that he de-saturated into the mid-thirties during this time. Normally, your oxygen level should be between 98-99. Obviously, too many of the episodes would be very dangerous to your organs, so we do have to monitor it.

The doctors are not particularly worried at this point, they (and we) would expect him to do this and we will just dial up his oxygen flow during the episodes. If they continue for days, we will start to get worried. One thing that will help is that we are going to start feeding him again soon. He is prone to more episodes when he is hungry, so I believe that will help out. Hopefully tomorrow he will wake up enough that we can even start giving him some sips of drink by mouth.

Last night we went out to dinner with Molly and her family. They are the family that is here from Indianapolis. They are a delightful family and Molly was a lot of fun. She taught us some new signs. I can’t remember if I mentioned it before, but Molly is going to be a big sister and I can tell by the gleam in her eye that she has much to teach her little brother.

We also finally got to meet up with Tommy’s family. He is every bit as adorable as his pictures and it was a treat to meet them. When we started down this path I had no idea the wonderful people we’d meet. The families who took time to answer our questions (and I have a lot of them), the families whose unconditional love for their children is inspiring, the doctors, the nurses, the kind strangers at the mall . . . we have been so lucky to have all of these people in our lives.

We are hoping for an easy re-introduction to food and an uneventful night and hopefully a Parker who is a little awake tomorrow. I promise to keep you posted.

They pulled the ventilator tube out at 8:30 a.m. It was hit or miss there for the first two hours and I was really concerned they were going to re-intubate. But, over the last hour he has done well. He is on a nasal cannula to give him supplemental oxygen and he still desats if he starts really crying but other than that he is holding his own. He’s still learning how to breathe this new way and he has to learn what to do when he coughs junk up in his mouth . . . he’s never done that before.

He’s got the shakes from withdrawal and although I’ve never seen someone on a drug withdrawal before I don’t think it is that horrible. As as result, we’ve asked them to space his next dose of methadone further apart because he still hasn’t fully woken up. He’s starting to open his eyes briefly and around a bit but only for a few seconds. He doesn’t have enough strength to hold his own head up yet.

We aren’t out of the woods yet but things look at lot better than they did an hour ago. He’s even been babbling “mama” and we can hear a wee bit of his cry which is absolute music to our ears.

We will update later as we get a better picture of what is going on.

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.