Oliver had an uneventful day. I didn’t spend much time with him, because we took the kids trick or treating at the hospital. Fentanyl and Versed were both discontinued today, and Methadone and Ativan increased. Extubation was put off and might be performed tomorrow. The ventilator was turned down to 12 most of the day, except for the two times he was sprinted, at zero. It was a few hours each time. I think he did OK. I noticed his sats drop slightly, his heart rate go up significantly, and his body run hot. I think it must have been due to the lack of Fentanyl and Versed, or that the ventilator was not helping him breathe anymore. His CO2 is still high. Progestemil was added to his feeds, and the total calories now is 30. This is the highest they’ve ever been. I remember seeing 25 at one time.

Dr. Hunt, “Mary” is a cardiologist that Claudia really likes. I like her too, she’s got great energy and she’s wonderful with kids. She stops by often, just to talk to Ingrid. She came by today, wearing bright jammies and funny glasses. Claudia asked her about Oliver’s latest echo. She told Claudia that they don’t think Oliver’s aortic stenosis will change (deteriorate) now, because he’s gotten bigger. She said they’ll be able to perform the Ross procedure, sometime in the future, maybe a year out.

Oliver is with Aunt Maureen tonight, who was sweet to stay with him while we take our little ones out for Halloween. I hope they’re having a relaxing evening.

Oliver had a good day. His echocardiogram showed no change, which is great! He did just fine with only half the amount of Fentanyl and Versed. The only time I saw him in pain was when a couple of hours would pass, and he accumulated mucus that needed to be suctioned out. Immediately afterward, he’d go back to sleep.

Even though Claudia requested to have his sedatives decreased, I didn’t see Oliver awake much today. I heard he was up for two hours around noon, but when I got there at 2 he fell asleep and stayed mostly that way until I left at 6:30. He woke up twice in that time, and stayed awake for 15-20 minutes. He looked at his balloon and ignored me, but I was glad to see him happy.

The ventilator went from 30 to 18 today. Every so many hours they turned it down and then took a blood sample after half an hour, to see how his body was coping with less ventilator. He passed the test each time. His CO2 was still in the 60s, but it didn’t change much with the ventilator decrease. This is good news. Dr.C doesn’t think he’ll get extubated tomorrow, but I think it’s ultimately up to the attending, who is someone else. Dr. Franzone (Deb) still hopes to do it tomorrow. The nurse said they typically extubate when patients have the vent at 10 or less. I could see that happening by tomorrow. But I don’t want to rush them; it’s better to do it right the first time. The reason Dr.C was thinking no is that he wants to see the pneumothorax completely taken care of, and the infection done. The chest xrays today all looked better than the previous, but I didn’t find out if it’s gone or not. He still has mucus coming out, and I don’t know how the lungs look in terms of the infection or if they’re fully inflated yet. Dr.C said no bronchoscopy, either. He said he’s going to defer to his colleague who believes that no matter what they see, they would still follow the same course, which is to extubate; so he’d rather just extubate and see how it goes.

He looks a little scrawnier today than he did last night. Apparently, he was 300mL overly wet yesterday, so he got more diuretics today. Now he’s in the negative, so they’ll cut back the diuretics. It’s hard to get it just right.

For those of us with Oliver, I realized today that something on his right side is hurting – either the incision or the chest tube or something else. If he can’t seem to settle and he’s on his right side, switch to the left, it might give him relief. It seems to me that he can only lay on that side comfortably for about 1-2 hours. Also, the Captopril made his blood pressure drop too low today; the nurse said this happened yesterday too. Make sure they double check the amount tomorrow – it’ll be a new nurse. Lastly, the very nice RT, Luis, told me that it’s good to take advantage of Oliver’s intubation, as a way to clean deep inside his lungs. This means we should make sure the nurse does a good job of suctioning, a complete job, because once he’s extubated, that gunk down there will be much harder to take out. I noticed today it took about 3 times to get all the mucus out each time. Maybe be tomorrow there’ll be less, though.

Oliver slept through the night, with no “PRNs” (extra doses) of sedative needed. Yay! He’s been needing it lately, since his Methadone was cut down. What happened is that there’s a worldwide shortage of IV Methadone. They’ve actually discontinued its manufacture! Only the oral form is available, and that’s what Oliver’s started up again yesterday. But it takes a while to kick in, in the oral form. Now that we think the oral one has kicked in, they’re going to start weaning him from Fentanyl and Versed. He can’t be on his full dose when they extubate him, because he’s going to need his alertness for breathing on his own.

The air in his cavity is almost all out. They’ve removed the old chest tube but will leave the new one in place until after extubation. His sats look good. Yesterday’s blood draw showed that his CO2 was high, almost 70. At 3am they took another sample and it was 68. But remember that Dr.C was not concerned about his, he said that Oliver’s body can (does) handle the high CO2, and this is not a reason to keep him intubated.

Today they are adding Progestemil to his feeds, to fatten him up. They’re also taking another echo. This one is going to be his “baseline”, in case he comes back after going home.

The ventilator was turned up to 30 yesterday for his chest tube procedure and they never took it back down. So, he is barely breathing over the machine. This has to do with the sedatives as well. Today they will drop it to 26. Someone mentioned sprinting him but Claudia would rather do Dr. C’s approach, which was to just lower it more and more until it’s almost nothing, because that’s what worked last time. Dr. C may not be around right now though. Although, the nurse told us that he is invested in Oliver’s case now, and when he’s invested he does stay involved. Dr. Deb Franzone (sp?) is here until 7am tomorrow, so we’ll find out tonight if they still plan to extubate tomorrow. I know Dr.C wanted to do another bronchoscopy before he’s extubated but I’m not sure when that will happen.

I’m going to the hospital soon.

Oliver had a restful afternoon. Around noon, they put the other chest tube into his abdomen. This is to get that remaining air out of his chest cavity. They sedated him more and even paralyzed his body, so he was out for a lot of the day. The proning yesterday was pretty effective; the doctor told Claudia it got about 40% of the air out, and that his lungs were inflating more. They’re using the new tube to get out the rest today. In the evening, they took another xray and later the results showed that it has been effective in getting the air out. Not all of it is out yet, but it’s working. We still don’t know if this is solving the trachea collapse problem, and we won’t know until they do another bronchoscopy. They were talking about doing that Friday.

One of the nurses Oliver had a couple of days ago, Kristy, requested to be Oliver’s primary nurse. This is really great, it’s so much better to have consistent care than the usual rotations. I know Claudia likes her and is happy to accept. Kristy has a 10-month old baby at home and she said she wanted to care for a baby because they don’t get many of them in the PICU.

In terms of his infection, I saw a lot and a lot of mucus come out. Also very green poop. These are good signs that his body is clearing the infection. Happily, I did not see much accompanying discomfort on Oliver’s part. He did have a little bit of gas, but only right before he pooped. The only other discomfort I saw was the mucus trapped in his chest. When you’re intubated, you can’t cough and clear it out yourself. So you have to wait until someone notices and goes in and suctions it out. The suctioning is very uncomfortable to Oliver but you can really see the relief afterward. Usually, that is the only thing keeping him from falling asleep.

Oliver’s feeds were increased today to 20mL/hour, then to 24. By the time I left at 7pm, he was looking fabulous. His skin was plumping up again and rosy. He actually opened his eyes for about 30 minutes and looked at his balloon. He looked content and relaxed, but not out of it. This is the first time I’ve seen him this way in a while. His eyes still have that sunken look, but not nearly as much as yesterday. I bet by tomorrow that will be gone. It gave me such a good feeling to see the old Oliver coming back!

I think there’s a lot I’m forgetting to say…I’ll come back later and update more if I remember. Ingrid’s fussing and I can’t think!

Look at him in these pictures. Doesn’t he look amazing?

Oliver had a pretty uneventful day. No procedures that I know of. He’s still intubated so he’s sedated all the time. He was very gassy last night, and vomited a few times. Today he still had some gas but seems comfortable.

The care conference was cancelled due to miscommunication. However, Dr. Cornfield came in (on his day off) to talk to us, along with another doctor named Francine. They took us to see the results of the CT angio. Here’s what they said.

There is a pneumothorax, or collapsed lung, due to the accumulation of air in the pleural cavity. It’s pretty sizeable. Check out the photo down below. It’s from Wikipedia, but it looks exactly like Oliver’s.

It’s is a cross section of a person, like if you sliced them like bread. The person’s feet are coming at you. The big white thing in the middle is the heart. The two gray areas on either side are the lungs. See how the left side looks all filled in, but the right side has a big black space? That’s what Oliver has. It’s a result of the surgery on his lobe. What happens is that the surgeon has to sew sections of the lobe together and if any little bit is left unsewn, air can escape and form this air pocket in the thorax. In Oliver’s case, the ventilator is pushing air forcefully in, and it is escaping out of his lung and into the cavity. This air pocket prevents his lung from fully expanding as it should, and it causes pressure throughout. The doctors also showed us a cross-section of Oliver’s trachea. Most of it is open, but then you get to this one part where it’s kind of squished like a pancake. It is being pushed on by one of his major blood vessels. Dr. C said he can’t say for sure, but that it looks very suspicious that this blood vessel is precisely in the same location where his trachea is collapsing. They theorize that if we remove this large pocket of air, the lung will reinflate properly, and the pressure will be removed off of this blood vessel, which will then stop pushing on the trachea. I asked if Oliver still has malacia and he said yes, his trachea is softened in this spot. The cure for malacia will be growth and time.

He does have a chest tube in place, from the surgery, for the purpose of draining excess fluids. However, it’s in his back, and the air bubble in his body will always rise to the top. For this reason, we put Oliver on his tummy and now we’re waiting to see if this will get that air out. We won’t know until tomorrow morning’s xray. But this could potentially fix the whole problem. If it doesn’t, they’ll take out that tube and replace it with one that’s meant for air (much thinner), and they’ll place it exactly where it needs to be, to get that air out.

Secondly, the doctors saw an area of diseased lung. Also, this morning’s culture returned positive for a critter called Klebsiella pneumonia. He has pneumonia and antibiotics have been started. They actually started him on antibiotics a day or so ago when he had some fevers, but now they know which bug it is so they changed to one called Cipro. This should clear the infection in 3-5 days.

So the overall plan is 1) remove the pneumothorax, 2) treat the infection, 3) obtain a clear, healthy xray (these are taken daily), 4) extubate him. The soonest they would extubate him based on all this new information is Friday.

Other changes today: they restarted his feeds again, at 10mL/hour, just breastmilk. They turned down the ventilator. He is now doing as much work as the machine. This is very good.

There’re a couple of things I don’t quite understand. One is, even if we take the air out, won’t the lung still be leaking? Doesn’t that hole need to be sewn? Also, I thought they said his lungs had reinflated already. I read that pneumonia can cause pneumothorax. So maybe I misunderstood at the meeting, what the actual cause of his pneumothorax is.

Anyway, I know that we are all feeling optimistic again after today’s meeting. And this is great for Oliver, to have his cheerleading squad energized and ready to go again. When I left him, he was sleeping very peacefully on his tummy. Here are a couple of too-dark pictures I took, and one that mom took earlier. Ingrid said, Oliver got a haircut mommy! But actually what’s happening is that his newborn hair is falling out, and some fuzzy blonde down is coming in. Also, his eyes look sunken. Claudia said it’s probably because he hadn’t eaten for several hours. I think it could also be that they overcompensated yesterday, and tried to remove all that extra fluid by giving him extra diuretic.

Uncle Dan and Aunt Jo are sitting with Oliver tonight. Happy Anniversary, Claudia and Tom!

Oliver’s scan is done, but the doctors haven’t been in yet to tell Tom and Cecilia the results. I will definitely add this once I hear. But I wanted to pop in and pass on something nice. Cecilia said that Oliver had a pretty good day, despite all the interventions. The IV into his hand went in on the first try and didn’t seem to bother him. He was up a lot of today, playing and calm. Tom put the string on the balloon in his little hand and he was having fun watching it. I’m not sure where that balloon came from, but it’s a great addition to the room. Cecilia said they’re still giving him Benadryl. So maybe they do think he had an allergic reaction? Or maybe they just figure it worked last night, so let’s keep it. 

Tom just called and he’s going to call it a night soon. The PICU seems to be hectic tonight and he doesn’t think they’ll have time to come by and talk. We should definitely know tomorrow.

As requested by my very helpful family, I have added this adorable (dumb) ruler to help me better keep track of Oliver’s age. Isn’t it great!? Let’s keep it up a while and see how we feel about it…

I talked to Claudia this morning, very briefly. She sounded upbeat. She talked to Pain Management. They were outraged that nobody paged them yesterday when Claudia was asking to talk to them. They gave Claudia their card and said they are on call 24 hours. She said it sounds like Oliver was experiencing withdrawal yesterday. They’re going to restart his Ativan and Methadone; he’s going to need them soon anyway, once they extubate him. I guess (hope) they’ll discontinue Fentanyl and Versed at that point. About the Fentanyl reaction, she said she was glad to see that his face was no longer red. Also that it’s true that Fentanyl and Benadryl should not be given together, in general, because they’re both sedatives. But, here in the controlled environment of the hospital, they do it all the time. 

Today Oliver is scheduled to have a special kind of scan, called angiography. This one will allow the doctors to see the blood vessels to the heart. I think it only takes like 5 minutes. Tom is going to be there instead of Claudia this time. He is also scheduled to have an echocardiogram.

I’ll probably go to the hospital this afternoon.

***

It’s 4pm and Tom just called with an update. They haven’t done the scan yet. Someone is coming in to put in an IV in preparation for the procedure. He said Oliver looks much much better than yesterday, no more puffiness. 

The doctors are saying that Oliver’s bronchomalacia is likely congenital. Tom agrees this sounds plausible after hearing them out. The malacia (softening of the walls) was there in the right lung and caused it to collapse way back when, then caused the left lobe problem, and now the trachea. They don’t expect to see any blockage in today’s scan. They’re saying he should be able to get off the ventilator, since he’s done it before. They’re thinking the swelling and pressure from the operation is causing the tracheomalacia, and that time and growth will heal that.

They’re going to wean him from the ventilator like they did before, under Dr. Cornfield’s supervision. Right now he’s set at “20″ on the ventilator. Once he’s down to “4″ he’ll be doing enough of the work on his own; this is the amount needed to overcome the collapse. We need to get him off of it as soon as possible, so that his lungs can begin working again, and growing strong. 

Good news again: today’s echocardiogram shows that Oliver’s heart function has not decreased since the last echo about 2 weeks ago. It’s good to see that his heart is still working well even under all this incredible stress! If I heard Tom right, there may have even been a slight improvement. But this is just the preliminary result; they plan to analyze it meticulously later.

Tomorrow at 1pm there’s a care conference (Tom and Claudia will be there) to discuss the game plan.

Oliver had a very restless day. Despite the heavy drugs, he had a really hard time getting comfortable. I don’t know if this contributed, but he was very puffy/ fluid-heavy. Claudia says it’s because they didn’t give him his maintenance medicines yesterday, some of which are diuretics. What it seemed like to me, is that something was bothering him so much that he was able to stay awake even though he was on drips of Fentanyl and Versed.

One possible explanation is that he wasn’t receiving enough of those strong sedatives. The pain management doctor told Claudia that when patients return to a drug they previously used a lot, that they often need higher doses of it to get the same effect. I think they were giving Oliver the standard dose of these two, but they also had orders to let him have it more often, “as needed”. We had to use this option more than once today, which is unusual for Oliver. We never actually got him to a comfortable point using Fentanyl and Versed, even with the extra doses.

The second possibility we thought of was drug withdrawal. It doesn’t make sense, because Fentanyl and Versed are like much stronger versions of Ativan and Methadone. For this reason, they discontinued his Ativan and Methadone yesterday. But Oliver was clawing at our hands, he was flailing his arms, he wasn’t making eye contact, he was burning up. The doctor looked at his pupils and they were not dilated, so she didn’t think this was the case. Even stranger, his heart rate through all this was totally low, 100-110, and he didn’t cry even once. His eyes were closed almost all day.

Another possibility is that the discomfort he was feeling was not actually pain, but something else equally as awful. I noticed his little fist would go up toward his cheek or neck as soon as you let go of it. It looked like he was desperately trying to claw at something there. In the earlier part of the afternoon, he was putting his fist in his mouth, which looked to me like hunger. He was only taking in 5ml/hour of breastmilk. In the past, he was given 20ml/hour, around the clock. There’s no way he wasn’t feeling hungry. We talked the doctor into increasing the feed to 10ml/hour. The reason they don’t want to give him oral feeds is the fear of aspiration while he’s intubated. Oddly, they are not as concerned about the fact that this will cause him to lose more weight, and sabotage his main goal, which is to gain weight. Anyway, later in the day, his hand was going up to his neck and his cheek, as if he was trying to rip off the feeding tube (it was on that side), or the central line that is hanging off his neck. I began to think he might be extremely itchy. We talked to the nurse and doctor about this and they gave him some Benadryl. He had been given his Fentanyl and Versed an hour early, just 10 minutes before. But this didn’t seem to have any effect. Just a few minutes after the Benadryl (via IV), he finally settled into sleep. We don’t know if it was the additional sedative effect, or that he was actually itching. I just looked up the side effects for Fentanyl and they include itching and swelling of the face. But no one seemed very concerned about Oliver, they were just focused on getting the right combination of drugs in him to help calm him. He also had high temperature for a lot of today, and I wonder if he was just feeling that icky feeling like when you have the flu. I would think the heavy drugs would help him that way. The doctor also checked the central line and it did not look infected at the injection site. All this rambling is to say that I am worried that he was having a reaction to the Fentanyl or Versed. But they don’t worry about this, because his throat can’t close while he’s intubated.

I’m relieved that we left him sleeping and comfortable, finally. I have a feeling he’ll sleep through the night, since it was a rough day.

So let me leave you with some positive news about today. Oliver’s chest x-ray showed that his lung has re-inflated, except for one little pocket of air that they’re going to keep an eye on. If it doesn’t resolve on its own, they’ll go in and do a minor procedure. The CT scan did not happen today, but they’re saying tomorrow late morning it will. They’re going to do a special kind of scan, one that will show them more. The plan is still to extubate him on Tuesday when Dr. Cornfield gets back. I’m not sure I understand what is going to prevent that lung from collapsing again once the ventilator is out. I’m sure it will all depend on the scan’s results, anyway.

Here are some photos for you. Thank you Karen!

The bronchoscopy revealed that something is impeding Oliver’s trachea from the outside. There was no mucus or blood clot on the inside. The doctor was able to expand the tube when she applied pressure, but then it would close again once the pressure was released. He was intubated for the procedure, and heavily sedated, so he’s out for the night. With the ventilator in place, Oliver’s respiration and oxygen saturation is right where it needs to be; the ventilator forces the tube open with its pressurized air.

So now that they’ve had a look inside, they want to do another CT scan, this time on the left lung, to see what is impeding his trachea. One of the theories is that when they removed the hugely enlarged lobe, all the organs shifted to fill in the new space, and that now something is pressing against his trachea. Or it could be his heart, which is still enlarged. One clue is that after the lobe surgery, we know that he was able to breathe properly. It was only a day or so later that he began to have problems.

As usual, we just don’t have all the information we need right now. We’re back to that awful and scary place of the unknown. The doctor who performed the bronchoscopy today told Claudia that his condition could resolve itself with time, but, this could take from 2 weeks to 2 months. Oliver needs to grow bigger so the cartilage will grow. His therapy would include steroids and wearing the CPAP or the ventilator. Both of these choices would require that Oliver be sedated continuously. Two more months of hospital life, plus the ventilator or CPAP, plus sedation, then weaning all over again – you can see how absolutely disappointing this is for Claudia and Tom.

Dr. Cornfield did give us his opinion tonight, even though he was not involved directly. He first admitted that he hadn’t talked to the other doctor yet, the one who’d performed the bronchoscopy. He then went on to say that he’s seen kids recover from this and live healthy lives, even after being intubated multiple times over. He reminded us of how far Oliver has come, and he said that his gut and experience tell him that Oliver is going to be fine. Off the top of his head, he named off some treatments that they could use to manage it, and he didn’t think surgery would be necessary. He’s going to be out Monday but he’ll be back Tuesday and he said they could extubate him then. I guess that means he’d go to the CPAP from there. He tried to put a positive light on things but it’s just too soon to really know.

Something about today feels different in a significant way. I think we have reached a turning point. I’m thinking about what a strange place Oliver is in. He is so close to being healthy, almost enough to go home. At the same time though, he is only a step away from danger. He’s healthier than ever but still extremely fragile. I know we are all feeling down about what has happened lately. But more than that, I think we are feeling worn down. For those of us taking care of him on a daily basis (and maybe for some of you, too), something has to change. Each of has to find whatever it is that will carry us through this next phase of Oliver’s journey. I know we will do it, because we have to. And I know it will change our lives, for the better. This is the magic of Oliver.