Monday, November 16, 2009

Swine Flu Medical Update #6

Dear Son is still in the Pediatric Intensive Care Unit at Big Academic Medical Center. Since I last posted on Thursday, a lot has happened.

11/12/09 Thursday~On Thursday, his chest x-ray looked the best since he's been in. They were able to lower the PEEP settings on the vent from 7 to 6 and they did a two hour C-Pap trial where they switch the ventilator to the C-Pap mode which means that it has no rate (Dear Son has to breathe on his own instead of the vent supplying the breaths) but it does have a PEEP. The PEEP setting helps Dear Son since it pushes air into his lungs and essentially keeps the air pockets open (instead of collapsing) when he exhales. He does o.k. on the trial but they decide to hold off doing another trial until Friday.

He has not been on any feeds since admission on November 1st. On Thursday, they did a partial trial of up to 25 ccs an hour which was successful so they decide to resume full feeds at his pre-admission rate. I am a bit surprised at resuming them so fast and ask if that's appropriate. Last year he had his motility rate tested and while his motility rate is normal, it's clearly slower when he's sick. We know that from several previous admissions and the last admission it took four weeks to get him back to his previous feeding schedule. I ask if I can at least go slower and they let me. I reduce his feeds by a half of a can to four cans of formula plus his normal water. That's still a lot considering he's sick and hasn't eaten in two weeks. However their concern is that he needs to be as strong as he can if they are going to try to extubate him and the increased feeds should resolve his blood work issues.

In addition to his respiratory issues, I am annoyed and concerned with wounds or sores he is getting here. They put elastic type support stockings on Dear Son's legs right after admission and then these pressure cuffs over them. They were too tight. They never took them off or changed them and now he has large sores that span the entire back of his knees. He has a sore on his penis from the catheter/foley, his genitals are red (you get that when they don't clean you properly) and he has some pressure sores on his right ear. He didn't have any of these when he came in. I have addressed this with the nurses, the fellow and the attending physician however no one seems concerned. I will end up addressing this issue for three consecutive days as well as asking the attending to specify the number of times/day that he needs these items treated.

On Saturday, I had an ICU nurse that had worked there twenty years. I showed her the wounds when I asked her to treat them and she told me that it never should have happened. She asked that I report it to the ICU Nurse Manager. Finally, as of yesterday, they were beginning to treat these items on a regular basis. I told the attending that he didn't have any wounds when he came in and I don't want to treat any wounds when he goes home. It is a lot of work treating this and when the patient gets wounds, it's really an indication of a lack of good care. When I care for Dear Son, I don't have any issues like that. The most he's ever had was a sore on his right ear where his ear bends when he lies his head on the pillow.

11/13/09, Friday~Things got off to a good start on Friday and went straight downhill after that. During rounds they talked about his plan. His chest x-ray was worse and it looked like an addelectisis (sp) on the right lung versus a true lung collapse. As a result, they won't do the Bi-Pap when he comes off the vent. Their original plan was to get him off the vent and then have him on the Bi-Pap until he could breathe on his own. They agree to try to lower the ventilator settings to give him a shot at extubation. They state that they need to extubate soon or the chance of getting a bacterial infection from the plastic increase tremendously. The Attending Doctor states there will never be a perfect time to extubate however they want to give him an 80/20 chance versus a 50/50 chance and the C-Pap trial will be a good indicator of that. I really like this Attending ICU Doc and Dear Son had her in the past as well as during our last ICU hospitalization in May. I have total confidence in her so it's great to have somebody there that I know.

In preparing for extubation, they decrease the Fentanyl, his pain medication, and decide to use Morphine instead. The goal is to start getting him to wake up. As you are aware, he's been unconscious since admission.

Personally, I can't wait to get this vent tubing out. The ventilator makes it extremely challenging to move and care for Dear Son. They gave Dear Son this air mattress type bed to prevent bed sores however this bed overinflates the lower half of the bed and makes the upper part of the bed lower than the bottom part, which isn't what we want. Because of the mattress, turning Dear Son over is a lot harder since you can't get the bed flat. Yes, you can put the bed in a flat position but since it's a fancy bed and no one can figure out how to deflate the bed for rolling him over, it's pretty tough. I am typically the strongest one there so I choose to turn his hips and let the staff manage Dear Son's vent tubing and upper part of his body. I appreciate the fact that they use the mattress to decrease the odds of pressure wounds but wish they had a manual or staff that knew how to deflate the bed for changing. I've deflated the lower part myself for changing however it still never lies flat.

The nurse today (Friday) is concerned about getting behind. He doesn't like the fact that I have the rate of the feeding pump lowered to 200 ccs an hour (a little less than a cup an hour) and keeps pressuring me to increase it. Dear Son throws up twice in the morning, has a seizure during chest PT but other than that, the 5 hour C-Pap trial is considered a success. In light of that, I agree to increase his feeding rate to 300 ccs an hour, his pre-admission rate. He has lunch at this rate and I get ready to give his seizure meds and start the dinner feeds.

Around 5 p.m. or so, Dear Son has a bowel movement and needs changing. The nurse and I begin to change Dear Son when he starts vomiting a lot. As he begins to vomit on the ventilator, I ask for the doctor to be paged. I tell the nurse I can't understand why he is suddenly vomiting and he tells me that Dear Son is sick and he'll vomit. I said no, he hasn't vomited since admission and this doesn't seem right. The nurse however wants to continue cleaning the bowel movement up and I tell him that we are not doing anything while Dear Son is vomiting. I explain that we need to let him finish vomiting before we can finish changing him. He disagrees. I tell him that we will clean him up as soon as he stops vomiting and calms down. I am not sure how much more we can do. I think it's unreasonable to try to change someone when they are vomiting. He leaves the room and Dear Son finally stops vomiting. I let him rest and wait for the Attending Doc to arrive.

The larger issue is that Dear Son has begun to wake up from the decreased pain medication and he's feeling the vent tubing, which can be uncomfortable. As a result, he's choking on it. In the past, Dear Son has tried to pull the vent tubing out when he begins to wake up so I am concerned that without additional pain medication, he will continue to vomit and choke and we'll have an ever bigger issue with aspiration. In addition, I worry that the increased stress of him wanting the tube out plus more vomiting, will weaken him make extubation riskier and decreasing his success rate. I decide to ask her if we can extubate now instead of tomorrow. I know this probably won't be a popular decision on a Friday night but I feel that if we wait until tomorrow, it won't work. I also know at this time, that it's really possible that Dear Son won't make it. I tell myself that regardless of whatever happens, I am going to be comfortable with it since I have done everything I can to help Dear Son and believe in my heart that this is the right time.

The Attending Doc arrives and I explain that I am concerned with the vomiting. I said he hadn't vomited at all since admission and now that the flu portion should be almost over (flu lasts 7-10 days), I don't know why he is vomiting. She asks to see the vomit to see what it looks like. I am concerned about aspiration and ask if he can still aspirate over the vent and she says yes. I ask her if we could extubate and explain that Dear Son doesn't like the tubing and we either keep him sedated so he doesn't feel it or extubate sooner. I tell her I think he'll be weaker tomorrow if he continues fighting this and vomiting. She agrees on the spot without hesitation and calls in staff to help us.

At this point, she's concerned about aspiration as well so she's going to extubate with him on his side. We have to finish cleaning him up so we all work together to turn him over. We have about six people working on this now since turning him over is no easy task. When we turn him over we have to pull him back away from the edge of the bed so we don't hit the vent tubing on the bed and dislodge it. We had cleaned up half of the bowel movement and as we turn him over to finish it up, they have trouble with the vent tubing and suddenly Dear Son is in major distress. If that weren't enough, as we turn him, the stool beneath him has pooled on the bed and I can't lean over to grab his hips without leaning into the stool. As we try to clean it up faster, Dear Son begins choking on the tubing and vomiting some more. The backs of his knees that were treated with Bacitracin earlier now make his legs so slick that turning him is a total disaster. If that weren't enough, the pressurized bed is lumpy and turning is almost impossible. We try to center him in the middle of the bed but there is vomit on his shoulders now and he's slick. As the vent alarms start going off, everyone is beginning to panic when suddenly they discover that the radial arterial line has become dislodged and there's now blood everywhere. The Attending Doc yells out that we have to close the hole or he can hemorrage to death. Within three minutes, we went from a disaster to total chaos! It takes several minutes before they get everything secured and we can get Dear Son turned over and cleaned up. I then leave the room so they can begin extubation.

By this time, I am quite nervous and concerned. We had just been though a pretty chaotic situation and it's hard not to be converned. I am pacing the hallways and praying for him but I am basically a nervous wreck. By this time my back had really started to hurt so I decide to sit down near the elevators to pray for Dear Son. I close my eyes and can't seem to concentrate even well enough to pray for him. I felt I should be helping him so I decide to visualize myself with my hands on his shoulders, caressing him, telling him it will be o.k. and holding him in place for the doctors while they extubate him. Suddenly, I visualize several white angels all holding him on his side, with me holding his shoulders while they extubate him. As I visualize us holding him, suddenly, a total calmness comes over me and I felt as if at that point, it was done and it was successful. I don't know that for sure but it was the most unusual sense of calm I have ever felt. After what seemed like forever, I returned to the room.

Extubation has gone well Dear Son is now breathing on his own. They have him on a high flow nasal cannula at 8 liters of oxygen. He looks pretty good but he's in a lot of pain. The Attending Doc says she'll write the orders for some pain medication otherwise he'll crash in four hours from withdrawal (With certain drugs you can't just take the patient off of the medication cold turkey.). Dear Son is now breathing with the nasal cannula but is in a lot of pain. The nurse has to wait for the orders to be written and the Attending Doc is now with another patient.

In the interim, they give me the o.k. to deliver his seizure meds, which are now very, very late. At this point, I am hoping that he got them in enough time and that he won't have any seizures. As I wait for the pain medication to arrive, I kiss Dear Son for the first time and hold his hands. With the Swine Flu hysteria here and as sick as I had been, I didn't want to kiss him for fear of making anything worse.

About an hour or so later, the Attending Doc opens the door. She tells me that I did a great job advocating for Dear Son and that this was 100% the right decision and right time to extubate him.

Around this time, the night shift arrives. Our night nurse knocks on the door, points to himself and then to me, and gives me the thumbs up. He'll be Dear Son's nurse tonight and we've had him before in the ICU. He's really nice and took good care of Dear Son before so I know it's going to be a great night.

Dear Son continues to cry out until he gets the pain medication. Once that's in him, he really starts to look good. He's calm, the oxygen saturations are good and it appears to have been successful. The next 24-48 hours are critical though. If his saturations don't stay up, they may have to re-intubate him.

By 10 p.m. his oxygen saturations are really stable. I go to bed around midnight and sleep the best I've slept in the past two weeks. Dear Son does fairly well all night and by morning, they have weaned the oxygen to 5.5 liters.

11/14/09, Saturday~After the shift change, they decrease the oxygen to 4.5 liters. They tell me I can start feeds again at whatever rate I feel comfortable. I decide to give him only enough formula with seizure meds and no more until he's really stable from a respiratory standpoint.

As the morning goes on, Dear Son begins to look poor. The nurse thinks he sounds worse and talks to the doctor. They order a chest x-ray and the chest x-ray comes back terrible. The lungs have filled up with fluid since the extubation and now look the worst since admission. Without the PEEP setting on the vent pushing the air into his lungs, the right lung has totally collapsed. Actually, they think it looks more like an atelectasis than a true lung collapse which explains why the PEEP setting helped as much as it did. They end up having to increase his oxygen and eventually bring up back up to ten liters. Saturday evening he has another seizure and they give him Ativan. They order chest pt and nebulizer treatments every two hours.

11/15/09, Sunday~ Dear Son beings yelling out at 2:30 a.m. with a seizure. I use the VNS but it doesn't stop the seizure. I worry that the seizures may tire him out and also that they may escalate. We really need to keep Dear Son calm so he can focus on breathing. They give him Ativan and we are able to stop the seizure.

The chest x-ray looks much improved with the increased chest pt and nebulizer treatments.

As the day progresses, he begins to have more pain and is unable to keep his oxygen saturations up. He continues to desat to 87% on his right side where he has the lung collapse. If we can't keep his oxygen saturation up, they may have to re-intubate him and put him back on the ventilator. He has multiple desaturations throughout the day so things have not really stabalized.

At this point, we have to continue the chest pt and nebulizer treatments and hope he gets stronger. I am going to speak with Dear Son's Ped Neuro Doc (He functions as his primary.) on Monday to get some direction on the feeding schedule. I wasn't comfortable increasing the feeds with his respiratory being stable. In addition, Dear Son normally feeds while lying on his right side, so the food goes out of his stomach. Now that the right lung is collapsed, he can't lie on that side which means he'd have to feed on his left side. Dear Son has a feeding tube but not a Nissen which means he doesn't have anything to stop the flow of his formula from refluxing. Looking back, I am almost certain that the vomiting on Friday was due to the increased rate of his feeds, the fact he was on his left side and the slower motility. The vomiting occurred at around 5 p.m. Friday, when he was positioned on his left side. The vomit was mostly formula and since lunch was started around 11:30 a.m. and was still in his stomach at 5 p.m. I am guessing that I am probably right. So in light of the reflux issue, a slower motility and his respiration not being stable, I really want concrete direction on his feeds from Ped Neuro Doc. He's really good with that and when he created his schedule in May, it took weeks to get Dear Son back to his previous feeding level and it worked beautifully.

So in summary, Dear Son remains in the Pediatric Intensive Care Unit at Big Academic Medical Center with a diagnosis of Swine Flu and viral pneumonia. He is off the ventilator but is still not quite stable. He has started to regain consciousness and has opened one eye for me twice. His right eye remains swollen shut. They expect that as they continue the lasix, the swelling will decrease and his eye will open.

I will try to give you another update on Tuesday. Thank you for all of your comments and well wishes for Dear Son's birthday. A special thank you to Angela for the beautiful birthday flowers for Dear Son.


MFA Mama said...

Oh, wow, you and Dear Son have certainly been through the wringer! Good on you for putting your foot down and advocating for him so well. It's hard when you've got medical staff "gatekeeping" and you're worried about making the best possible decision.

HECK YES to the motility issue! My youngest has intermittent gastroparesis and chronic low motility for unknown reasons, and any time he gets ANY kind of virus his gut slows (and on one memorable and miserable occasion shut down completely to the point that he couldn't even absorb clear liquids via his GI tract to hydrate himself). Viruses ABSOLUTELY affect GI motility and you are entirely correct to insist on baby steps with the volume and rate for Dear Son's feeds while he is still recovering. For one, too much formula or formula given too fast will just fill his stomach up and sit and make him feel sick, which will stress him out and suppress his respiratory effort, and for two he's very likely to vomit if they push him to the outer limits of his current volume tolerance and that is risky indeed with aspiration as a hazard for him on a good day. Kick, scream pitch a wall-eyed fit, do whatever it takes but do NOT let them advance feeds faster than he can handle that; they may be medical professionals but you have more experience caring for someone with Dear Son's condition than all of them put together and they need to respect your expertise. I would suggest seeing if you can use a more concentrated, calorie-dense version of Dear Son's formula in order to deliver maximum nutrition (so that he has the energy he needs for healing) with minimal volume while you work on getting him back to his baseline volume tolerance. As far as hydration, since he's got IVs anyway let them hydrate him via IV for the time being--it isn't as if he's leaving the hospital any time in the immediate future and it's safer and more humane than insisting on full enteral hydration for now.

Also watch out with the narcotic pain relief. You absolutely have to wean that stuff slowly to avoid withdrawal (which is very uncomfortable and stressful and can also cause seizures, which Dear Son needs his seizure threshold altered like he needs a hole in the head), and you might have to make some noise if they are late with a dose. Dear Son needs as little stress as possible right now, and pain and withdrawal will interfere with his recovery.

Wow I'm opinionated. Don't you feel sorry for the nurses when one of my kids is at Club Med? Feel free to take or leave any of the above or tell me to mind my own beeswax, but Dear Son feels like an Internet nephew to me and I'm a little worked up on his behalf. I won't even comment on the sores...

Dream Mom said...

Thanks, MFA Mama. I did have them keep the IV fluids going and I forgot to mention that in my post (it was quite lengthy as is!). Ditto for the pain relief. I was on top of that as well.

As a general rule, you never have to worry about me speaking up! On the flip side however, I really appreciate you sharing your story with motility to help reinforce the message that we need to take special care for these special needs kids.

It's always odd to me that some professionals expect so much of these kids; they expect them to do more than any of us would do. We certainly wouldn't go back to our full meals after a bout with the flu nor would we be moving around when vomiting and yet as mothers, if we don't say something, some people would do what they want to do. And what about the kids without Mamas that speak up? There are so many good professionals out there but there are just as many who don't understand or who don't have the frame of reference needed for these kids.

Anonymous said...

Big hugs DM. I'm so glad you are there for DS and advocating on his behalf.

So many medical professionals forget the power of a "medical degree from life experience" and refuse to listen to caregivers. Each patient is different and will react uniquely to treatment. With all you've been through I'm confident your decisions are the correct ones. You know him more than anyone else.

Still sending hugs and prayers your way, to Dear Son, Dear Dad, and his medical caregivers... May they all find the strength, wisdom and faith to help you all through this.

Michelle said...

well, he is making progress, that is a blessing. Still in my prayers, DM.

deb said...

Still praying for you all, Dream Mom.
Every. Single. Day.


Jean said...

I, too, am keeping you both in prayer--God just brings you to mind often through the day. All of us out here know it could be us in your shoes right now. We do wish we could do more than pray--but we will do that!

My little gal also has chronic gastroparesis, and when I read your post, it shocked me that the "professionals" don't get that g-tube fed kids just don't turn around on a dime. Very frustrating, I'm sure.

But as everyone mentioned, you are doing a heroic job advocating for your Dear Son. May you feel God's power holding you up this week.

Christina said...

Dream Mom-
As a former PICU RN I could picture every minute of your weekend with Dear Son...I am glad the staff are listening to you and respecting your input now. I can't tell you how many times I've had physicians order a rapid increase in feeds similar to what happened with Dear Son...And those specialty air beds are so difficult. Peds hospitals are tricky- usually (good) adult hospitals have lift/turn teams who can regularly come to help the nurses turn and reposition larger patients, but peds hospitals usually do not have this option.

I am praying for you and Dear Son. I am so thankful that God gave you peace and the beautiful vision of the angels there around Dear Son. I will pray that you will continue to know His "Peace that passes all understanding" and that you will feel the wonderful love of God surrounding both of you in that room.

Jan's Funny Farm said...

I have been reading your posts on your son's hospitalization and I am amazed you are able to write so clearly in the midst of all this.

I pray for you both.

Jan's Funny Farm said...

I have been reading your posts on your son's hospitalization and I am amazed you are able to write so clearly in the midst of all this.

I pray for you both.

Anonymous said...

We continue to hold both of you in our prayers. I wish there was more that I could do to help you.

(((hugs))) Thim

Anonymous said...

Dream Mom, I am interested in asking about your son's medical bills and how they are paid for.

I am interested because a relative just had a bad injury at work and it might turn into a chronic disabling condition. I might need to look into all sorts of options about insurance, payment, etc. It is still too soon to know the outcome. It is not comparable to your son's condition, but it is certainly a scary thing to face. It's easy to see how someone can "fall between the cracks."

I send all best wishes for you and your son. You are so brave.

deb said...

Continued prayers for all of you....

Jaymie said...

Just wanted to let you know that you're in my thoughts and prayers.

Kristin@Boulevard Interior Design said...

DM, You are amazing. I'll keep you both in my prayers.

Donna Karis said...

My son was in a similar situation 10 years ago - due to a nasty virus. I know it's an excrutiating difficult time. You and Dear Son are in my thoughts.

Dream Mom said...

Thanks, everyone.

Anon743-We have private insurance for Dear Son.

Because your relative had a work injury that may become a permanent disabling condition, you may want to consult with an attorney to discuss your options. They may be able to seek a settlement based on the cost to care for your relative over their lifetime. I am not really the person to be able to give advice in that type of situation.

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