Dear Son Medical Update #11

Last night I took Dear Son to the emergency room. His breathing had been quite labored since we had been home and I worried he might die on me. That was frightening to say the least. Last night, around 5:30 p.m. or so, he began yelling out in pain and was having a hard time breathing. I paged Ped Neuro Doc however Dear Son kept yelling out and was breathing so hard that I ended up taking him to the ER. He had been running a small fever all day, around 101 or so, and I had been doing all of his chest pt and nebulizer treatments every four hours with an extra nebulizer treatment during the night. Despite that, he had been struggling to breathe most of the time, especially when he was lying down, so I had kept him in the recliner for most of the day. I was afraid to lie him down in his bed.

It was a lot of work to get him dressed, into the wheelchair, into the car and then in to the emergency room. When we got there, his oxygen saturation was around 86-87 and finally settled around 91 within the five hours we were there. His temperature was normal although I had been giving Motrin and later Tylenol to keep it down. I had been doing this regularly since we left the hospital. Overall, I think moving him around must have helped his lungs a lot (plus the fact that he was sitting in his wheelchair, which had strong side supports and can hold him straighter) because his breathing seemed much better in the emergency room. I think it also helped me just to have him evaluated. I had been working so hard to make sure I was doing everything possible to help him get better and because he had been working so hard to breathe over the last two days, I felt death was imminent. I was a bit afraid of him dying on me and what would happen, etc. so the visit helped give me some peace of mind. I know we are getting to the end of the road with him since his lungs are so weak. I think I finally understand what the ICU docs meant last May when they were concerned about whether or not they could get him off of the vent. I see now how hard it is for Dear Son to breathe and better understand that getting off the vent isn't that easy. I also hadn't felt comfortable enough with him over the last two days to even take a shower without having someone around to watch him. I have to remind myself that he was on the non-rebreather at 12 liters of oxygen less than a week ago and that he has only been off of the oxygen and breathing on his own since Wednesday.

He slept good last night and opened his eyes for a little bit this morning so I felt better. He'll probably be out of it the rest of the day. While I certainly felt he was highly unstable for the past two days, I feel this morning that he's a little better and would rate his status as guarded.

Dear Son Medical Update #10

Photo of Dear Son last night at home. While it looks like he is awake, he is sleeping.

Since my last post, Dear Son's fever has continued to drop. As of midnight it was down to 100.1 and although it was up slightly this morning around 101, I am not too concerned with the fever since this is the only time that it has increased since we left the hospital Thursday afternoon.

I have continued giving him nebulizer treatments and chest pt every four hours and Motrin every six hours. I am sitting him up the recliner for four hours and then moving him to his bed for four hours with the head of the bed raised almost all the way up. He still sounds very noisy and rattles quite a bit. I can't say that I feel very confident of his respiratory status right now. I did ask a nursing friend of mine to see Dear Son yesterday since he was so noisy and to see if I needed to take him back for medical treatment. She evaluated him and thought his left lung sounded good whereas the right lung was dimished. She felt that the rattling was o.k. since it meant the secretions were breaking up but that he wasn't wheezing. She thought he looked good as did Dad.

Around midnight, I moved him from the recliner to his bed to do the chest pt. I finished everything around 12:45 a.m. however he was so noisy and his breathing seemed labored that I moved him to the recliner at 1 a.m. where he remained until now. I did not feel very good about it at all and contemplated calling 911. I thought about what they might do if I did-they would do the nebulizer, do chest pt, do a chest x-ray and blood work to see if he had a bacterial infection. I am doing the nebulizer and chest pt and I am fairly confident that without a fever, he doesn't have a bacterial infection. They could suction him however and that would help but I just didn't know. (As an FYI, I am out of durable medical equipment dollars for the year so on January 1st, I can order a suction machine; our secondary insurance doesn't cover respiratory at all.) I guess the real issue was that I did not want to go back to the hospital for any reason. I went on-line to see what it said about chest rattling and if I should have him seen. That wasn't a good idea because when I google it, it came up with chest rattling as a final sign before death. I nearly had a heart attack then!

My plan this morning is to page Ped Neuro Doc in an hour or so and see what he says. I imagine I won't be able to get him over the holiday weekend but I'll attempt it. If he's not available, I am going to call another good friend of mine who was a Director of Nursing at a place with all special needs children. She oversaw kids with trachs and vents, all of which were special needs for years. I've never had her evaluate Dear Son before however we've been friends for a few years now and she knows Dear Son. Other than that, I'll continue to watch him and if I see any further deterioration, I'll just have to bring him back him and let them look at him. At least I'll have some clarity. Probably my biggest issue is that he really hasn't come to since I brought him home. He's opened his eyes in the morning however he hasn't really come around during the day or evening at all. He is aware when he needs to be changed but other than that, he's pretty much unresponsive and sleeping most of the time.

11/28/09~Noon Update: I just spoke with Ped Neuro Doc and he thinks that we are probably o.k. since he doesn't have a fever and we are doing all we can. He said we could increase nebulizer treatments to every two hours but that can get old. I did tell him that I actually gave him an extra nebulizer treatment at 1 a.m. last night and the night prior to help Dear Son out. He said they may try to get a visiting nurse out here on Monday (I don't have a nursing benefit on either insurance though.). He asked me to follow up with him tomorrow. After that, my nursing friend called and she is going to bring out a pulse oxygen meter to give me more information.

Note: Dear Son is eighteen years old and suffers from a progressive neurological disease along with intractable seizures, dystonia and severe mental retardation due a mutation of the ARX gene. He most recently had the swine flu and a viral pneumonia and was hospitalized from November 1st to the 26th.

Dear Son Medical Update #9

As I mentioned previously, after I left on Sunday, Dad stayed with Dear Son and they didn't perform any deep suctioning. I spoke with Dad and they had not done anymore suctioning down his nose nor did they suction him at all, even after Dad asked. On Monday, they did do some suctioning but only in the mouth, according to Dad and not down his throat. Dad managed to sit him up in the wheelchair for quite some time and over the course of the day, things seemed to get better. They took him off the IV fluids, ramped up his feeds and said they'd release him in 48-72 hours. All of this seemed quite unbelievable to me, considering the condition he was in on Sunday. They seemed to believe that he was a lot better.

This was all pretty unbelievable to me and I was not sure what was going on. I had difficulty getting medical information from Dad since he doesn't ask the same kind of questions that I do. After they switched to the high humidity face mask, they had started to wean his oxygen.

On Monday evening, I paged Ped Neuro Doc to try to get some answers. I said I was confused at the sequence of events since he was suddenly doing better and they were make some pretty dramatic changes. They hadn't done any suctioning, hadn't ordered a chest x-ray, removed the IV fluids which he was on and were ramping up feeds. He was quite surprised as well and agreed to speak with the ICU Attending Doc the following day. I had also asked him if it was safe to remove the IV fluids since he couldn't go back on full feeds (full feeds include formula and water) and also asked him to set the schedule for the feeds. He had done this on past admissions and it took weeks to get Dear Son back to previous levels.

On Tuesday, he saw Dear Son and had spoken with the ICU Attending Doc. She had stated that they had performed pretty aggressive deep suctioning on Dear Son and it was effective. Ped Neuro Doc said that he had seen Dear Son and was shocked at how he looked. He said he looked 100% better and he would not have believed it if he hadn't seen it. Dad had put Dear Son up in the wheelchair and had him up on Monday for 1.5 hours. I am not sure if that helped or what turned things around however it was good that things were looking up. It still seemed like things were going incredibly fast given he was on a vent some eight days prior and he was still quite fragile.

Late Tuesday evening, around 6 p.m. or so, the ICU team moved Dear Son to a regular floor. By this time, they were aggresively turning down the oxygen. On Wednesday, they continued to wean him and by mid afternoon, he was down to a half of a liter of oxygen on a nasal cannula. He continued to desat throughout the day and began running a fever on Wednesday evening. Respiratory treatments which included nebulizer treatments with albuterol, chest pt, the vest and cough assist were reduced to every four hours from every two hours previously. He was still on potassium and they were weaning the Methadone. He has been sleeping most of the time and hasn't really been alert like he was on Monday or even on Tuesday. It is not unusual though for Dear Son to sleep for weeks after a discharge.

On Thursday, Thanksgiving, I was really anxious to go home. Despite a rising fever, Dear Son had been off all oxygen since around 3:30 on Wednesday with only one desaturation. It had been explained to me that a person can have some desaturations at home normally however because they are not hooked up to a monitor, you don't know. At the hospital, since the monitors are hooked up, you can follow it easier. Prior to removing all of the oxygen, his saturations were around 97-100 and once it was removed, he stayed around 94-95.

During rounds, we discussed his status and possible discharge. We talked about his increasing fever however the Pediatric Attending Doc said that it is not uncommon for kids with central nervous system disorders to have uncontrolled fevers. He said that if a mother were to call in to speak with a physician and tell them that the child had a fever of 103, but the child was not vomiting, did not have any respiratory distress or other signs, they would tell her to watch the child. He said that the course of treatment is the same at the hospital and if they are just watching the patient, then I could do that as easily at home. (I should mention that he had a problem with a fever last Saturday and he ran it for some 48 hours. They had performed blood cultures and nothing grew.) On Wednesday, they performed more labs and then again today they did another blood culture. All of the lab work to date has been negative. So although he did have a fever, there wasn't anything to indicate that he had a bacterial infection of any kind. He also was not having any respiratory distress. The Attending also explained to the residents that because he's been in the hospital that there is a tendency to think that they should keep him when in fact if a mother called from home and if they'd tell her to watch him, then the advice isn't any different just because he's in the hospital. Essentially, if they'd tell a mother who called in to watch her child at home and if the same circumstances presented themselves for an in-patient then the advice to watch the patient would be the same and you can watch them at home as easily as you can in a hospital.

I also indicated that I had a nebulizer and that I could perform chest pt and the nebulizer treatments with albuterol at home. They had prescribed a vibrating vest for him however I explained that we had exhausted all durable medical equipment (DME) dollars for the year so I couldn't get that. (Dear Son's primary insurance has a $2000 DME limit per year.)

During rounds, I also clarified with the Attending on what I needed to do if the fever continued to climb. I asked if there was any number where I should be concerned and seek medical attention. He stated that as long as there weren't any other symptoms, that the fever alone was not an indicator for medical attention although if it were 106 or 107 then I needed to seek medical attention regardless. I specifically asked if it reached 104 let's say, do I need to call and he said no. He reiterated that kids with central nervous system disorders run high fevers so I am o.k. unless he's in respiratory distress. With that they agreed to discharge Dear Son.

I had to wait for Dad to come pick us up since he needs to lift Dear Son. Throughout the day, Dear Son's fever continued to climb. It went from 100.8 on Wednesday evening to 104 by 2:30 Thursday afternoon. We left at 4 p.m. Needless to say, I was slightly uncomfortable about that however I knew that the CBC and blood cultures were normal so there wasn't any bacterial infection. Without a bacterial infection, there wasn't any reason for antibiotics. In addition, they explained to me previously that Dear Son had a 14 day course of Vancomycin and Zosyn in the ICU and he also had another 48 hours of antibiotics earlier in the week in the ICU and yet no bacteria grew in any of the cultures.

We arrived home around 6 p.m. By 7 p.m. his fever was down to 102.9, by midnight it was down to 102.5 and now at 3:17 a.m. it's down to 101.2. I am doing nebulizer treatments every four hours along with chest pt. Around 8 p.m. I moved him from the recliner to his bed and he slept until midnight when I got up and gave him his seizure meds, nebulizer treatments and chest pt. At that time, I thought he sounded pretty noisy and his breathing was more rapid. I can't say I've really felt very comfortable since he's been home in terms of his status, but I'll just have to watch him. Since he sounded so noisy, I got him up and put him in the recliner at 1 a.m. and did a second nebulizer treatment to open the airways. That's what they would do if we went to the ER. At this point, I think we'll have to wait and see. I would like his breathing to get a little better before I'll feel good about this. I'll probably keep him upright for another hour then do his nebulizer and chest pt.

As for feeding, he'll remain on continuous feeds for a few weeks meaning he gets his feeds/water very slowly 24/7 to prevent aspiration. They also increased his Vagus Nerve Stimulator settings while we were in the hospital.

So in summary, Dear Son is now home where I will continue to monitor his temperature and respiratory status. He is on g tube feeds 24/7. I continue to give respiratory treatments with the nebulizer and chest pt every four hours. He sleeps most of the time and is not really alert. He opened his eyes once on Thanksgiving so we still have a ways to go. Although he was quite alert on Monday, he really hasn't been that way since. It will be weeks before he will be strong enough to go back to school.

Thank you for all of your prayers, wishes and support for Dear Son and our family. Your support means more than you could know. Please continue to pray that his breathing gets easier and that he makes a full recovery. I hope the discharge was the right decision and sincerely hope and pray we can avoid a re-admission.

Home

We just got home tonight. I pushed hard for Big Academic Medical Center to release him today despite the fact that he was running a fever that kept increasing all day. When we left, it was 104 however everything else seemed fairly stable, blood cultures were negative and he had been breathing on his own for 24 hours. I'll update you in full some time tomorrow. I have a pretty aggressive respiratory schedule to keep up with and I need to stay by his bedside to make sure he's stable. The trip home exhausted him. He's still sleeping most of the time and not very alert yet. I can't say that I think he looks very good at all right now but time will tell.

Dear Son Medical Update #8: Do or Die

Dear Son-Marks on his chest are from the central line. Bruises on his inner arms are from trying to locate a vein for the IV.

Things have gone south since I last wrote. On Friday or so, Dear Son began running a fever. He ran a fever for over 24 hours and yet they were unable to determine the source of the fever. They did some blood tests and a blood culture however no bacteria grew so the good news, if any, was that we didn't have a bacterial pneumonia. They did however start an antibiotic for 48 hours to cover it.

The lungs continue to get worse. On Saturday, Ped Neuro Doc told me that he was approached by the ICU Attending Doc and the Pulmonary Section Chief and they were worried Dear Son is not getting better. They are not sure what more they could do. He told me the odds that Dear Son will survive are around 50%. He states that they really need to do some deep suctioning on Dear Son, something that I had been quite opposed to. I have a rather weak stomach and the main reason is that deep suctioning requires a tube be placed up Dear Son's nose and then down to remove the fluid from the lungs. Bottom line it hurts. I have never met anyone who has ever recommended it nor anyone that does it that ever had it done. I can't condone something that will hurt like that for a child that can not speak, can not push someone away when something hurts, etc. I had a similar test done once and I couldn't complete the test because it felt like someone sticking a needle up my nose. It was intense pain and I would not do it for Dear Son. I had made that pretty clear.

Ped Neuro Doc felt however that based on his conversations with these physicians it was something that needed to be done. I reluctantly agreed to let them do it however I did not feel great about that decision.

What was also troubling to me is all of the different messages that I receive there. Because Big Academic Medical Center is a teaching hospital, the Attending Docs do rounds with the residents. The problem this week was that the Attending Doc never once came to Dear Son's room and had a conversation with me. Yes, I have made it know that I expect to be there for the rounds but the rounds forum and purpose is for teaching. I don't feel it's private and I don't care to ask questions regarding life issues while standing in the hallway with the cleaning people, reception people, people faxing, every nurse standing in the hallway and anyone else. That's not fair to Dear Son or to me. It amazes me in this day of HIPPA how a patient's privacy is not respected.

I told Ped Neuro Doc that it is troubling to hear things that they don't know what else to do when the Attending Doc and Pulmonary Doc never even stepped a foot in Dear Son's room all week despite the fact that I have been here 24/7. He said that the Attending Doc is timid and I said that was a personality trait and that he needs to do his job. It is costing over $100k per week in the ICU and at that rate, I felt I deserved at least a knock on the door and two minutes of face time or more to have them express their concerns and to answer any questions I may have. I also told him that we began seeing Pulmonary Doc in clinic after his May hospitalization. We saw her in August and have a follow up appointment in December. If she can't come around when Dear Son is sick and make a visit, then I won't need to see her when he's well. The entire purpose of having a doc and having them follow your child in clinic is so they know the patient and better decisions can be made.

Throughout the day, I also have multiple nurses, respiratory therapists and residents come by to check out Dear Son and listen to him. They all say, "he sounds great". Now at some point, these types of conversations and lies have to stop. If the patient isn't doing well, it does no good to have multiple messengers relay the fact that they "sound great". It isn't doing anyone any favors. And to have the Attending and Pulmonary Doc not show up at all is unacceptable. To be fair, the two prior weeks Attending Docs did come to Dear Son's room every day and talk and answer questions. As for residents, the rounds are interesting as well. It was amazing how many times they relayed inaccurate information about the patient during the rounds. In cases where the Attending never bothered to come in the room, who would have been there to correct the information had I not bothered to participate?

Late last night, they began deep suctioning. I didn't watch the first one but remained in the room. During the second deep suctioning, just two hours later, I stood up to see and was horrified at the amount of blood that was suctioned. In addition, Dear Son bled for an hour later and some 90 minutes later, this is what his face looked like. I requested to speak with Attending Doc but got on a Fellow. I stopped the deep suctioning. Dear Son looked like a boxer had smashed him in the face. I felt good about stopping that.

Photo of Dear Son's face 90 minutes "after" deep suctioning. They planned on doing this every two hours.

This morning however Ped Neuro Doc came by. He said the chest x-ray is much worse and there isn't any choice but deep suctioning or he'll die. He told me to leave the room and I told him that I worry about the pain from the suctioning for Dear Son-it doesn't matter if the leave the room or not if I know Dear Son is in pain. Despite the fact that we don't agree on this matter, I do have tremendous respect for him and he always does a great job following up on Dear Son, taking time to see us while he's in the hospital and always giving his best in making sure that Dear Son gets the best care he can. Not only is he a good neurologist but he is a good primary doc as well. I am lucky to have such a great advocate for Dear Son.

Dear Son's Dad was scheduled to arrive at noon and was going to stay through Tuesday. I told him he needs to call off work and stay with Dear Son all week since I can't be there for that deep suctioning. We argued a bit about that. I told him he had to stay with Dear Son since I did not want Dear Son to die alone.

Right before I left the room today, I asked the nurse to give me a minute or two to say good-bye to Dear Son. He left the room and I kissed Dear Son and told him I loved him. I told him that I was sorry I had to leave but that I didn't agree with them putting the tube up his nose and that they think it will make him better. I said his Daddy will be here with him. As I turned around I saw the door to our room was left open and the nurse was standing right outside the door. I was really angry. I have sat in that room for three weeks now with tight infection control procedures and the door was never allowed to be open for more than a few seconds to go in/out and here this nurse couldn't have the courtesy to give me a few private moments with my son. Outrageous.


I left the hospital today and was beside myself. I have spent the last eighteen years taking good care of Dear Son and looking out for him. I never dreamed that as things get down to the wire that I couldn't be there. I just can't stomach the fact that he can be hurting. Being your child's best advocate isn't always pretty and it can be uncomfortable at times but you have to do it.



After I left, I called Dad several times to see how things were going. After Ped Neuro's Doc pleas to me for deep suctioning, not once in the last ten hours have they asked about deep suctioning Dear Son.


This has really been a nasty hospitalization. I doubt we will ever come here again should he survive this. The conditions here have also made it challenging. The room is extremely hot at night, freezing in the morning, there is no air circulation and it's noisy. The pressurized bed is loud and blows dust around the room. With the infection control procedures, I am not allowed to go anywhere but the bathroom. So I can't buy any meals in the cafeteria or restaurant nor can I use the microwave or even heat up a cup of water for a cup of tea. It's like being in an airplane for three weeks. If that weren't enough, the public bathroom and shower are about a quarter of a mile down the hall. There are only two public bathrooms on the ICU floor and when you try to take a shower, people knock on the door for you to hurry up. I am not showering very much.

I guess I am also a bit angry. We were scheduled to get the swine flu vaccine and they ran out. Had Dear Son had the vaccine, the Section Chief of Infectious Diseases said he'd most likely be home with a cold and not here. It's really hard when I worked so hard to get him that vaccine (I was able to get the seasonal and pneumonia vaccine though.) and then to have this type of hospitalization. Missing the Make a Wish trip just bothers me to no end-I so wanted to see him happy. We went from planning the best birthday ever to him having the worst birthday ever and being on a ventilator. You wonder sometimes in the big scheme of things, why the hospitalization couldn't have happened after the trip. This is our 60th hospitalization. People have fun every day and you wonder sometimes why it couldn't happen for Dear Son.


In addition, my sister's birthday is tomorrow. She died from colon cancer on March 1st of this year. My mother had colon cancer and was cancer free for six years and now they think it's back. My aunt died from her second bout of colon cancer two years ago. As a result, my mother's physician wants all of us siblings to go for genetic testing. I told my mother that I wasn't interested since I have enough on my plate right now.

At this point, I just want to bring my son home. If there is nothing more they can do, then I'd like to take him home and love and care for him until it's time.

In summary, Dear Son has been in the ICU at Big Academic Medical Center for over three weeks now. He suffered from the Swine Flu and a viral pneumonia. He lungs have collapsed (addelectisis) from the pneumonia and they are doing chest pt, nebulizer treatments and vest therapy to help clear the airways. Yesterday they switched him from the non-rebreather (12 liters of oxygen) to the high humidity face mask to see if that would help.

Thank you for your continued prayers for Dear Son.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also suffers from a progressive neurological disease.

Dear Son Medical Update #7

Since my last post, Dear Son has fluctuated quite a bit. After the vent tubing was removed, he had repeated issues with desaturations while on the high flow nasal cannula. On Tuesday afternoon, he crashed again and desated around 80 or so (you should be around 95-100). At that point, they removed the nasal cannula and put on the non-rebreather (sp) at 12 liters of oxygen. In addition, they increased the pulmonary toileting, as it's called, to every two hours. Essentially, they do the therapy vest, the cough assist, chest pt and the nebulizer treatments to help open up his airway and lungs. He crashed again at 4 a.m. today but was stable after that.

I spoke with the Attending Physician this afternoon and it appears that we will probably be in the ICU another week or so. Dear Son needs to come off of the non-rebreather before they will transfer him to another floor.

They are working on decreasing the pain medication that he was on while on the ventilator. Because it's a controlled substance, they need to wean him off the medication slowly.

Dear Son has also been losing a lot of weight. He lost 22 pounds in two weeks. The swelling has been eliminated with the Lasix so I asked if he still needed it. They discontinued it today.

He started feeding yesterday. He is on continuous g-tube feedings at 25 ccs an hour, which isn't very much.

The good news is that he opened his eyes today. I think today was the first time that I felt good about this admission. I actually felt he wasn't going to die and would recover. While the doctors thought he could recover, I can't say I was really convinced in light of the issues he had this week. I had been a little jumpy all week worrying they might have to re-vent him. I honestly don't think I could have made it through that.

On Tuesday, I contacted the Director of Nursing regarding the sores behind his knees and the other issues. She checked out the wounds and had wound care do an evaluation of his issues. She'll follow up with me later this week. I think we are moving in the right direction.

So in summary, Dear Son has been in the Pediatric ICU at Big Academic Medical Center since November 1st with the swine flu and a viral pneumonia. The swine flu has run it's course and Infectious Diseases has completed their course and now we are simply treating the viral pneumonia. At the present time, they are:

• Weaning him off of the pain medication.
• Continuing pulmonary toileting to clear his airways and lungs.
• Treating the wounds.
• Continuing g-tube feeds very slowly.
• Continuing the non-rebreather at 12 liters of oxygen.

Overall, this has been a pretty rough hospitalization for him and for me. I was so terribly sick the first two weeks he was there and now am feeling a bit better. I was also terribly depressed thinking he was going to die and that I wasn't going to see his eyes and smile again. I worry that with all of the pneumonias he has had, that one of these times, he won't make it. The good news is that I have really good doctors taking care of him. Ped Neuro Doc in particular has really done a nice job and is always really optimistic. It really helps when we are here that he takes the time to see Dear Son even when we don't have a seizure issue. It makes a big difference during times like this.

I probably won't post again until Sunday but do appreciate all of your thoughts and prayers. I just came home tonight for two hours to pick up some things and then I need to get back to the hospital by midnight to give him his seizure medications.

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.

Swine Flu Medical Update #5~Happy Birthday Dear Son

This will be quick since I am short on time.

Yesterday, we had some setbacks. When they decreased the PEEP settings on the vent, it was a little hard on Dear Son and they had to increase the oxygen back up to 50%; the setttings remained there all day. At 2:10 a.m. Wednesday morning, Dear Son began having seizures which they treated with Ativan since the VNS did not control them. Around 7:15 a.m, he began having seizures again however his blood pressure went way up to 202/110 and remained there. They gave him 4mg of Ativan total and then had to call Ped Neuro Doc. Labs were taken again, he was given a bolus of a seizure med and late in the day, he increased one of the seizure meds after the labs came back. Dear Son has trouble when he lies on his right side since he has a right lung pneumonia.

The central line has begun leaking however they are watching it and they areo.k. with it.

Chest x-ray looked better yesterday; keep in mind chest x-rays lag behind.

I spoke with the Section Chief of Infectious Diseases yesterday. He's in charge of prescribing the antibiotics for Dear Son and is an expert in fevers and all kinds of infectious diseases. They will discontinue the Tamiflu now and after he's off the vent, discontinue the Vancomycin and Zosyn.

He also had a discussion with me regarding a trach for Dear Son to keep the airways clear. I will not do a trach for Dear Son and will explain my position on that (as it relates to Dear Son) at another time when I have more time. I told him I was very comfortable with my decision and that I had researched it and had many discussions on the topic with several folks some time ago.

In summary, Dear Son remained on the vent. He had to stabalize a bit before they can extubate him and ideally, they'd like to see the PEEPs decrease to 5 or 6 with an oxygen of 40% before they extubate. They may try to switch the vent setting to a C-Pap setting to see if he can handle that. Either way, when they extubate him, he will require Bi-Pap support or additional support.

I can't say that I felt too great about things yesterday however the Attending Doc remains confident that they can get him off of the vent.

I am not feeling very well myself hence all of the running back home. I have an ear infection, sore throat, cough and generally am feeling pretty miserable. I started on some antibiotics yesterday.

Today's Dear Son's 18th birthday. We won't do anything today since he's unconscious. I did tell him we'll have a party when he's well.

Thank you for your continued prayers and support for Dear Son. I did get a few more questions answered regarding the Swine Flu but I'll have to share them another day. I have 15 minutes to get out of the house and back to the hospital. I greatly appreciate all of your comments. I am sorry I can't respond to any of them. Thank you for your e-mails as well.

Dear Son Swine Flu Medical Update #4 & Swine Flu Q & A

After a horrendous day on Saturday, Dear Son started to stabalize on Sunday. I really did not feel very optimistic about things on Saturday and if the truth be told, I was really quite down and could not even remotely anticipate that things might ever change. I was so distraught thinking that I'd never really see my boy as the happy boy he is. Being thisclose to a trip that would have lasting happy memories was like pouring acid on a wound. After his last hospitalization in May, I was determined to get this kid out of there and have some fun and feared I had waited too long. The thought of losing him was overwhelming.

Your comments, thoughts and prayers have been a great source of strength for me. While I can't update you from the hospital, I can read your comments there. I know a lot of you think that I am really a very strong person however when it comes to Dear Son, probably not so much. While I am fiercely passionate about caring for him along with overly doting and syrupy, I am probably not too strong. Add to the fact that I have an incredibly weak stomach, all of this constant suctioning and getting rid of secretions only adds to the stress. I think I'll feel much better when he's off the ventilator and when he can open his eyes.

Dear Son does appear to be stabalizing somewhat or at least taking some baby steps in the right direction. In the last twenty four hours, the fevers have disappeared. They were able to increase the feeds and made the decision to start him on his g-tube feeds to try to normalize his potassium levels and to give him some strength to help him breathe on his own. His potassium remains low; they were giving him potassium directly and as of yesterday began adding it directly to his IV fluids.

In addition, they started him on Lasix to get rid of some of the fluid that he was holding. I had questions regarding the Scopolamine patch and adding the Lasix since the Scopolamine patch dries up secretions, doesn't allow him to sweat and helps hold/retain his urine whereas the Lasix does the opposite. They explained that the Lasix works directly on the kidneys as opposed to the Scopolamine patch which is an anti-cholinergic. I also wanted to know what the effect of the Lasix would be on his potassium levels since it's getting rid of the water. They said it was a good question and that with the Lasix you can excrete the potassium and since he already had low potassium, they'd have to watch it. He should be o.k. though since not only are they giving him the potassium but when they increase his feeds, the electrolytes will normalize themselves.

In addition to increasing the feeds and adding the potassium, they are going to more aggressive in decreasing the vent settings to get him to breathe some on his own. On Sunday, they got the oxygen settings on the vent down to 45%, with a PEEP of 10 and breaths of 16; they decreased him on Monday to 40% oxygen, with a PEEP of 10 and breaths of 12. While the oxygen setting of 40 is typically o.k. for extubation, his PEEP was rather high at 10. They decreased that to 9 later in the day and decreased it to 8 today. The breaths were at 12 and there were times yesterday when he didn't breathe over the vent* at all and then other times when he might be 3 breaths over and as high as 9. If all goes well, they will try to extubate him on Wednesday or Thursday. They had previously discussed that if and when they do extubate him, they will probably have to transition him to the Bi-Pap machine to help him breathe as opposed to letting him breathe on his own with no ventilator support.

The chest x-ray was actually worse yesterday than the day before. The right lung appeared to have more collapse and the left lung lower lobes a little worse as well.

They are continuing his chest pt which helps clear the secretions from his lungs.

Blood gases are done every six hours and labs done every twelve hours which is an improvement.

So to summarize, Dear Son remains on a ventilator at Big Academic Medical Center Children's Hospital. He is on Vancomycin/Benadryl, Zosyn, Fentanyl for pain and Tamiflu (The Tamiflu was a five day course however they they decided to keep him on it to minimize flu symptoms. When they saw the renal electrolytes trending up, they decreased to the Tamiflu to once every 48 hours until he is off the ventilator.) They have added potassium, started him on g-tube feeds and decreased the ventilator settings. His chest x-ray looks worse however it is not uncommon for chest x-rays to lag behind. He has a central line, an arterial line and a foley for urine. His blood pressure is remaining relatively stable. Dear Son remains unconscious and it still holding quite a bit of fluid.

In addition, I met with the Section Chief of Infectious Diseases at Big Academic Medical Center. He's the guy who decides on the antibiotics for this hospitalization. I asked him several questions related to the swine flu:

• Q-Is it true that it takes two weeks for the swine flu vaccine to be effective? A-He said it probably never gets to the point where it's really 100% effective. Typically what a vaccine does is to make the flu milder.
• Q-Will he get the vaccine before he leaves the hospital. A-No.
• Q-Now that Dear Son had the swine flu, can he get it again this season? A-No.
• Q-At Dad's place of employment, once they heard Dear Son had the swine flu, they sent the Haz Mat team (complete with mask and gear) in to clean his desk. Is this an appropriate level of concern? (I should tell you that I couldn't stop laughing when I heard they did this.) A-No. People are overreacting to the swine flu.
• Q-At Dear Son's school, they offered to come in and clean the classroom after hearing that Dear Son had the swine flu. Is that necessary? (Normally, the classroom is kept extremely clean as the staff is quite diligent about hand washing and sanitizing with the four students in Dear Son's class.) A-No. Normal cleaning is fine.
• Q-Any deaths at Big Academic Center from the swine flu. A-No.
• Q-Is the swine flu seven days? A-Any flu is 7-10 days.
• Q-If Dear Son got the swine flu vaccine, would he be on a ventilator? A-No. If he got the vaccine, he most likely would be at home with a cold (milder version of the swine flu) instead of on a ventilator. *Note: Dear Son was scheduled to get the swine flu vaccine at Big Academic Medical Center and they ran out. This was 6 days prior to him getting the swine flu.
• Q-Does Big Academic Medical Center have a website where I can get more information on the swine flu. A-Check out http://www.cdc.gov/ for information.

Late last night, around ten p.m. Dad called me regarding Dear Son. His central line was leaking blood so they gave him something to break up the blood clot but it didn't work. They decided to use another port and will make a decision today as to whether they will replace that line.

Thank you for your continued prayers for Dear Son. Today is probably the last day I will be able to post for a while. Dad came down last night so I could go home and sleep since I have to work today. If you'd like to read all of my posts related to the swine flu, click here.

**Note: Dear Son is seventeen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also has a progressive neurological disease.

*Note: When you are on a ventilator, it is doing all of the breathing for you. You want the patient to begin breathing "over" the vent so they begin to do some of that themselves. The easiest way to understand this is thinking about the extubation. When they remove the vent tubing from you, they typically have a lot of doctors standing around the patient. As they remove the tube, they essentially wait for you to "catch" your breath or start breathing on your own. It's pretty scary when this happens because you are essentially waiting for the patient to breathe. The patient then gasps for air and you hope they begin breathing on their own. The danger in being on the ventilator too long is that when you body gets used to the machine doing the breathing, it gets much harder to wean you off of the vent. In addition, when the patient is ill and weak, it's harder yet. For patients like Dear Son, who have a progressive neurological disease, the job becomes that much tougher since their baseline status (meaing what they can do when they are well) is so weak. In addition, the first twenty four hours after extubation is critical. At that time, they will know if the patient can breathe on their own or if they will have to put them back on the ventilator.

Dear Son Swine Flu/Pneumonia Medical Update #3

Thank you all for your prayers and well wishes for Dear Son. Here is a status update.


The good news:

• Dear Son is off the norepinephrine (blood pressure medication). This is a huge deal according to the Attending Doc.
• He is running fewer fevers.
• They started him on g-tube feeds at a rate of 5 cc per hour and as of today, increased him to 15 cc per hour. The added nutrition will help make him stronger and help him recover.
• Blood gases are done every six hours, as opposed to every two hours.

The not so good news:

• He still requires a lot of help from the ventilator. I had hoped that perhaps he'd be vented another day or so however they told me it would be another week or so. Even if the settings are decreased, there are still a lot of other things he needs to do before they can take him off of the ventilator. He needs to get stronger, be able to breathe on his own, etc.
• The chest x-ray still looks pretty bad. His entire right lung is filled with fluid and the lower part of the left lung. His left lung looks worse than yesterday.
• He remains unconscious. He is retaining some fluid and his eyes are swollen shut. He left eye is so swollen you can barely see his eyelashes.
• He had a pretty big seizure yesterday afternoon around 3 p.m.
• His potassium is low.

I spoke with Dear Son's doctor at length yesterday to get a better understanding of the intense concern over the swine flu. I had thought that the MRSA pneumonia would be worse than the swine flu since it is a bacterial infection that is hard to treat however the swine flu is proving to be a bigger challenge. He spoke to our ICU Director and she relayed a story of a Texas hospital where all of their swine flu ICU patients died. While the swine flu is more prevalent in the western suburbs where I live, he does feel good that Dear Son is off of the norepinephrine. He also has great confidence in the ICU team here at Big Academic Medical Center. He said in the last ten years, he thinks this ICU team is the best he has seen anywhere. They are especially good with respiratory issues.

At Big Academic Medical Center, they have a strict Isolation Policy Guidelines. You can either wear a gown/mask and gloves at all times when you are in the room with a patient with the swine flu or you can choose not to wear any of it. If you wear the gown/mask and gloves, you can remove them when you leave the room and go anywhere in the hospital, which includes the restaurants, laundry room, family vending area (with microwaves). If you are a parent and choose to "room in", meaning stay with your child, you can forgo the gear however you are not allowed to go anywhere except the bathroom. Since I stay with Dear Son 24/7, I am not leaving the room to go anywhere except the bathoom. The gloves, mask and gown are very hot and I can't wear that 24/7 without sweating to death. The room door must also be closed at all times. I caught a cold and lost my voice from the vent in the room since it blows air on me when I sleep. On the flip side, it's really uncomfortable in there since there isn't any air circulation with the room closed all the time. I totally understand the precautions however it's making it challenging in terms of food. I have to bring my own food and can not use the microwave or anything else anywhere.

Dad took vacation days to visit Dear Son this week at the hospital. When they heard Dear Son had the swine flu, they sent in a Hazardous Materials team in to clean his desk. I asked the docs if this concern was appropriate and from the swine flu cases they are seeing, this is appropriate.

In summary, Dear Son remains hospitalized in the Pediatric Intensive Care Unit at Big Academic Medical Center with the swine flu, a viral pneumonia and MRSA. His ventilator settings are 45% oxygen, 10 PEEPS and 24 Ppeak. He is on Benadryl (to prevent Red Man Syndrome from the Vancomycin), Vancomycin, Zosyn, Fentanyl (for pain), Tamiflu and potassium. He gets daily chest x-rays, chest pt and nebulizer treatments every four hours and blood gases every six hours. He has a central line, an arterial line and a foley for urine.

I was really down and out yesterday with regards to Dear Son. I need your continued prayers to help him get well. I really need to see Dear Son open his eyes again and to see him smile. I remember back in 2006, when he had the MRSA pneumonia and I was hoping for more time to see him grow up. Now that I've seen him all grown up, I want more. I want more time with him. I want to see him laugh again and go to Florida for his Make a Wish trip. In reality, it will take him quite some time to recover.

I do have confidence in the ICU team and and fortunate to have such good doctors. Ped Neuro Doc has just been outstanding. He takes such good care of Dear Son. Whenever he's been hospitalized, he always comes to see him even if he's not the attending that week. This alone has been really helpful. When you are in these types of situations, it really helps to have someone that knows Dear Son so well and is able to give me real answers in terms of his recovery. I've been in a few situations with Dear Son at Big Academic Medical Center where I thought that the only hope I had was a miracle and Dear Son pulled through.

Please continue to pray for Dear Son. If you have any prayer groups, that would be great as well. I have always believed that in addition to having a good medical team that the power of prayer makes such a difference for Dear Son. Thank you for all of your wonderful comments, thoughts and prayers. While I am unable to write any posts at the hospital, I can read your comments on the big screen t.v. in the room. Your comments have given me strength to help me get through this with Dear Son.

To read all swine flu/pneumonia updates for Dear Son, click here.

Note: Dear Son is seventeen and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease. You can read more about him in the Journal of Neurology. The link is in my sidebar.

Dear Son Medical Update #2~Diagnosis: Swine Flu, Pneumonia, MRSA

On Monday, Dear Son (DS) tested positive for Influenza A. As you may recall, Dear Son is at Big Academic Medical Center and was being treated him for the flu and a viral pneumonia. During that time, I met with the Section Chief of Infectious Disease(SCID), who is an expert in unspecified fevers, and he was confident that they had figured this out. While the blood cultures and swine flu test were still pending and would take a few days, this is what Dear Son was treated for. I didn't share the flu information when I updated you earlier in the week, because at that time, while they suspected the swine flu, I didn't have the test results back. I met with the Section Chief of Infectious Disease and he had explained to me that 88-90% of the patients there that tested positive for the Influenza A, would test positive for the swine flu and that's exactly what happened with Dear Son.

What was problematic for me was that in early October, I spoke with Dear Son's physicians with regards to getting the swine flu vaccine, along with the seasonal flu vaccine and the pneumonia vaccine. Dear Son had a pneumonia vaccine in 2002 and I had met with the Section Chief of Pediatric Pulmonary in August for an office visit to determine if he needed to get another pneumonia vaccine (Normally you need only one in your lifetime but because DS has chronic lung issues, it was recommended he get another one.). I wanted to know if I could get all three vaccines done on the same day, Monday, October 26th, because DS was off school and it's hard to get him around. Dad must go with on all office visits because we don't have a wheelchair van and he has to lift him. They had conversations to determine if he could get them all in the same day, how many injection sites they needed to do and if they would have the vaccines by then. We also needed to determine which type of vaccine he needed to get (live or dead) and it was determined that with DS's pulmonary issues, he could only get the injectible version and not the nasal mist. It was set up and he was approved to get all vaccines on that day.

When we arrived on that day, they were out of the Swine Flu injectible vaccine. Little did I know that this would be a huge problem for Dear Son. On Saturday, October 31st is when his fever started. I specifically asked the Section Chief of Infectious Diseases what the incubation period is on the swine flu and was told 1-5 days. I asked him where DS got the flu and he thought he most likely got it at school. I also asked if DS would have gotten the swine flu vaccine on Monday, the 26th, if he still would have gotten the swine flu. He said that if DS got the vaccine, he probably would not have gotten the swine flu. Please understand that it would have still be possible for DS to get the swine flu with the vaccine, however he was saying it most likely would have prevented it. I learned all of this information earlier this week but didn't want to update the blog until I had the actual test results that were positive for the swine flu and I got those yesterday. He is also having conversations with those departments to determine why the vaccine was promised and not delivered for someone like DS. Typically, the city gets the vaccines, they go to the hospital then are distributed to the departments and they allocate the vaccines to the appropriate patients. In our case, they aren't certain what happened and I should note that we came down just for the injections and neurology clinic as not in session that day, another department was.

In addition, once Dear Son tested positive for Influenza A, they required me as his primary caregiver, to start on Tamiflu and gave Dad a prescription as well to help prevent the swine flu.

In addition to the swine flu, Dear Son has a big infection in his right lung. It is nearly all white on the x-ray. At this point, the blood cultures haven't come back with a bacterial infection so it is still considered a bad viral pneumonia.

Pediatric ICU policy states that all patients must be tested for MRSA. As you are aware, Dear Son tested positive for MRSA in 2006 and had two MRSA penumonias and was vented at that time as well. Many of you read my Mother's Day blog where I almost lost Dear Son on Mother's Day but the blood transfusion saved his life. Dear Son tested positive for MRSA this week as well. I asked the Section Chief of Pediatric Pulmonary, who is DS doctor, if that meant the pneumonia was a MRSA pneumonia and they can't say. What is does tell us is that he has a pneumonia and he has MRSA which means that they need to treat him with antibiotics for the worst case scenario. (As an FYI, typically with a MRSA pneumonia, you have really high fevers, say 105 or so and because it's a bacterial pneumonia, there are protocols for the length of time they will be on antibiotics. For example, often Vancomycin, a powerful antibitoic will have a ten day course.)

So to update, Dear Son has the swine flu as his primary diagnosis and then a bad pneumonia and MRSA on top of that. The swine flu can have a fever component (If I recall the SC of ID said that less than 10% of patients with the swine flu have a fever.) Dear Son remains on a ventilator.

On Tuesday, Dear Son was started on the ventilator at 100% and by Wednesday, his settings had decreased to 55% oxygen. A simple way to evaluate what is going on is when the vent settings are going up, you are getting worse and when they are going down, things are getting better. Dear Son continued to have fevers on and off. They were able to stabalize the blood pressure with norepinephrine and also stabalize many things: glucose, sodium, potassium and magnesium. He remains on the norepinephrine though to keep his blood pressure up.

On Thursday morning they attempted to get a chest x-ray which required Dear Son to lie on his back. Normally Dear Son can not manage his secretions when he is well on his back and I told them that he could not lie on his back for any time longer than necessary. They ended up having him on his back some 20-25 minutes at which point I said I had to turn him on his side. I could hear the secretions and while they can suction him, I honestly can't stand that and would prefer to prevent these kinds of things. For the record, I have a horribly weak stomach and when he is on the ventilator, it is ungodly stressful for me and for DS. The nurse thought she knew everything and was going on on how Dear Son was doing just fine on his back, his oxygen saturations were lovely, etc. I left the room to go to the washroom and came back and she was totally white faced. Dear Son's had desatted and as a result they had to turn the vent settings up from 55 to 100%, except that now they had a problem because he wasn't getting enough oxygen even though they were at 100%. There was nothing more they could do. She asked me if it might be possible he was having a seizure since she couldn't get his oxygen up and I said no but I swiped the magnet for his VNS anyway. At this point the charge nurse was in the room and x-ray was standing there wanting another chest x-ray because the x-ray was bad. It was now 5:45 a.m. I told them that they might want to hold off on the chest x-ray until the Attending Doc comes in around 8 a.m. (Yes, they have docs on call all the time and typically the AD is there around 6:30 or so.) At that time, they could talk to her, DS would have had two hours to stabalize and they would have a full staff there to help DS should things get worse. I said they could still do a chest x-ray at that time however since they couldn't get his oxygen up and the vent was at 100%, there was no place to go. I was trying to avoid a crisis when everyone wasn't there. They agreed.

It took a few hours before DS stabalized. He remained at 100% for around two hours or so. I explained to the nurse that while it may seem that Dear Son can tolerate things, he really can't. I think she learned that they need to listen to Mom:)

He continued to have fevers throughout the day and when I left last night, he was on 75% oxygen on the vent with a PEEP of 8. The plan was to try and decrease the vent settings and increase the PEEP to help him out more. (A PEEP is essentially where they have pressuried air that holds the lung air pockets open after they exhale so they don't compress. These are my words for the PEEP explanation.)

Dad had to leave earlier this week after coming down with a fever. He got sick after spending one day in the room. I left last night and have a terrible sore throat and can't speak.

So to summarize, Dear Son is at Big Academic Medical Center and has the swine flu, a bad right lung pneumonia and MRSA. He is being treated with Vancomysin and Zosyn as the antibiotics, Fentanyl for pain, Tamiflu and norepineprine to stabalize his blood pressure. They continue to treat his fevers with Tylenol and Motrin. They are giving him chest PT every four hours and take blood gasses every four hours. He has a central line, an arterial line and a foley for urine. He is also having more seizures so they took all seizure labs yesterday. He had a good night last night and the vent settings have been reduced to 50% oxygen.

They expect the swine flu to last seven days and during that time, he will be pretty sick. They will continue to treat him with the antibiotics and the plan is to increase the PEEPs to try and get the vent settings down.

I spoke at length with Dear Son's Pediatric Neurologist, who is DS primary doc. He has been his doc since he was ten weeks old. I asked him if he thought Dear Son would live. He thinks that Dear Son will live however he is not sure how easy it will be to get him off of the ventilator. He explained that unlike other physicans, he spends a lot of time in the ICU and knows these physicians well. He stated that for those patients who have had the swine flu there, they have been very sick for a good week or so. He is very confident of the ICU team in terms of managing these types of issues. I also wanted to know if the fact that Dear Son is so weak at baseline and has a progressive neurological disease if that makes it harder. While it does make it harder, he has other patients that are more severe than Dear Son and have been in the ICU for other issues and the team has been able to pull them through. While his words were comforting, I still do not feel very good about this situation however it did help a lot. I pray that he is correct.

I do know however that getting him off of the ventilator will not be an easy task and they have told me that they will probably need to get him some support before he can breathe on his own. I have had conversations with several of his physicians around this issue.

I would also strongly recommend that if you have a child with chronic health conditions like Dear Son, that they get the swine flu vaccine. I asked the Section Chief of Infectious Diseases who is most likely to get the swine flu and he said children with asthma and those with chronic illnesses.

Thank you for all of your prayers for Dear Son. It is very comforting to know that everyone is praying and pull for Dear Son and for us. I am beside myself with grief over this situation and it's killing me not being at the hospital right now. I am going to try and get some rest.

I do have pictures of Dear Son in the ICU, that I took with my new camera however I'll try and get those downloaded later today. I wanted to get the update done for you first.

I also want to thank Laura, Angela and the people at the Make a Wish Organization who have confirmed that they will re-schedule Dear Son's Make a Wish Trip once he's better. In the meantime, we'll just hope that he's on the mend for his 18th birthday next week.

To read all swine flu medical updates for Dear Son, click here.

Note: Dear Son is seventeen years old and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. You can read more about him in the Journal of Neurology by clicking the link in my sidebar.

So Long Make a Wish Trip...Dear Son in the ICU on a Ventilator

We were scheduled to leave for Florida for Dear Son's Make a Wish trip next Monday... but now that won't happen.

On Saturday evening, Dad picked up Dear Son around 7:30 to take him overnight. He works 12 hour days so that is when he picks him up. Around 10 p.m. Dear Son broke out in a fever (he had been totally fine all day Saturday) so he called me and said that he had a fever. He said he was going to give him some Tylenol and I told him to watch the fever since Dear Son can deteriorate fast meaning his breathing can get very labored. I asked him to call me at midnight when Dear Son gets his meds if things get worse. I talked to Dad the next morning and Dear Son still had the fever so I told him to give him the "adult" dose of Tylenol. (Dad had given 500 mg. and the bottle said you could give up to 1000 mg. which he did.) Dad had difficulty controlling the fever with Tylenol and around 3:30 in the afternoon he called me and said that it was too early to give more Tylenol but the fever wasn't going down. He was bringing him back home to my house.

By 6 p.m. I had arrived home and Dear Son still had a fever. His breathing wasn't great but it wasn't terribly hard yet. His fever was around 101.4, I really don't remember right now but I knew he had to be seen to figure out the source of the fever. Dad wanted to take him to a local ER but I wanted to take him to Big Academic Medical Center since I knew if things headed south, they could treat it and it would save a trip from the local ER transferring him to Big Academic Medical Center. I paged his pediatric neurologist (who functions like our pediatrician) and he said to take him to the ER immediately.

We arrived at the ER and they took his history. Some time later (I don't have a lot of time right now so I'll try to give you the abridged version.) the Supervisor of the Physicians (that's how he referred to himself) came in and checked him out. He said the physical exam shows sepsis and they are treating him as such until they have more information (they took blood work). He asked if I wanted to donate Dear Son's organs (I said no.) and asked me if thing proceeded what decisions have I made (meaning do I want a Do Not Resusitate) and I said that no, I could never do that. The ICU doc came down and assessed him and they asked me the same questions. How depressing...

Around 2 a.m they transferred him to the ICU. The fever continued to go up and they couldn't get control of it. They put him on an In-rebreather at 12 liters of oxygen and had started him on Vancomycin and Zosyn. Neither appeared to be working. Dear Son has an allergic reaction of sorts to Vanco-he gets Red Man Syndrome. It's not a "true" allergic reaction but it means they have to run the Vanco very slow and give him Benadryl which they did. Of course, being the Dream Mom Super Organizer that I am, I have his allergies or reactions to Vancomycin and Zofran documented on his Emergency Information Sheet.

In desperation yesterday (my words), the ICU Attending told me that she contacted Infectious Diseases. She said that they may have to vent Dear Son but she wanted them to come and look at him to see if they were missing anything. She said that they can't get control of his fever. They had been giving him Tylenol and Motrin to get it down and it wasn't working. (As an FYI, I had taken Dear Son on 10/26/09 and gotten his seasonal flu shot and pneumonia vaccine at Big Academic Medical Center but couldn't get the swine flu injectable vaccine because they ran out.) They had previously contacted Dear Son's Pulmonary Doc (She's the Head of Pediatric Pumonary.) there and informed her what was going on and had gotten instructions for the chest pt vest and nebulizer schedule. They had been giving Dear Son nebulizer treatments as soon as we got to the ER so this was just a more schedule. As Dear Son deteriorated, they called her again to see if she could come see him right away. The ICU doc said that they were going to turn the In-rebreather up to the maximum setting to help Dear Son. By now he was on 18 liters of oxygen which is the maximum for that (Some places the max is 15 liters from what I understand but here it's 18 liters.).

Eventually, the Big Wig at Infectious Diseases thinks he's figured it all out. He's really nice and it's a good conversation. He thinks it's a viral pneumonia and they put Dear Son on the Bi-Pap machine at 100%. Dear Son does better and we are all happy. Once he gets some rest from breathing too hard, they'll try to reduce it to 60% over time. His fever begins to come down and we are now one happy family.

During the day, Dear Son had been crying out repeatedly, which was stressing me out and I couldn't figure out what was wrong. I asked if there was something for pain for him but eventually, when I saw his fingers moving, I figured out it was seizures (fevers can raise the seizure threshold) and I used his VNS magnet and they stopped. He didn't cry anymore and things were good.

I left the hospital last night after Dad arrived to get some sleep at home. I have to work today and then I would come after work and be there the rest of the week.

That was yesterday. I had a good night's sleep and Dear Son appeared to be on the mend.

In the last hour, things have dramatically changed. His fever began to spike in the morning and his breathing deteriorated. I just got a call that they had to put him on a ventilator asap and put a central line in. Things are not looking good.

I need to cancel work and get back down there. I don't know when I can update you again. Please pray for Dear Son. I don't know if this post makes sense or if I included everything but I don't have time to proof it right now.