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.

This is Not Your Father's Hospital Bed-Part III: Looking Forward Instead of Looking Back

Before Photo: This is what a typical standard hospital bed looks like when they ship it to you. Note the universal headboard and footboard.

After Photo: This is Dear Son's new Tendercare Bed. The Tendercare bed features a patented "slip over" headboard and footboard; the headboard and footboard just slip over the hospital bed. The hospital bed remains fully functional.

I remember being the in the Pediatric Intensive Care Unit (PICU) with Dear Son, just a few weeks ago, wondering if I would get to take him home. We are getting to the point, where one of these times, he is not going to make it. I was hoping and praying that this would not be the time, knowing full well, that all of his time is currently “borrowed”. As the chest x-rays flip flopped, I became more worried, one day they would be worse, the next day no change and then the following day, it would be a little worse. One tell tale clue that things are generally not going well, is how long you stay in the PICU; I usually will ask how long Dear Son will be there, so I can schedule my work around it. When I asked this time, they said two weeks. Today, hospitals move you in and move you out so when you stay in the PICU you, you know you are in serious trouble.

A close up of the nightstand. I made the lampshade.

Luckily, Dear Son made it through. Once he was transferred to the Pediatric floor, I began to think about going home. Once you have been there long enough, you know the steps: PICU first, Step Down, pediatric floor then home. But there was something different this time, Dear Son was getting his new hospital bed and we had been waiting for it to be shipped. We had something to look forward to.

Looking forward to something, is not something that happens very often when you care for someone chronically ill. Your life somehow changes over the years, as his needs increase, my life as I used to know it, disappears. My life and his life become melded into one where survival for both of us, is the only goal.

Before Photo: This is what a standard hospital bed looks like when they ship it to you. Most are used and nearly all come in this awful brown color. In the first photo above, I painted the headboard and footboard black.

I remember many years back, when they recommended a hospital bed. It was very depressing. The hospital beds, most of them used, are shipped to your house. More often than not, they bill the insurance for the bed as a rental, until the purchase price is met, then it becomes yours. Yippee. Not. No one wants an ugly, used, hospital bed as their bed. And what’s worse is that the worse the patient gets, the more time you get to spend there. Not only are they ugly, but your bedroom begins to look more like a hospital room and less like a home. And that is where our new bed comes in.

Gary Owens, started Tendercare Beds, a short time ago. As a woodworker, he created a bed for his wife, Gina, who had a hospital bed of her own. With his slip on, slip off, headboards and footboards, he changed an industry. No longer are hospital beds something to be avoided, but now they are something you can have, and be proud of. It no longer matters if the insurance company only pays for a used hospital bed, because you can make it new with a Tendercare bed. You no longer have to be ashamed to get a hospital bed for your loved one. You no longer have to be ashamed to let someone see your bedroom. But most of all, you don’t have take away your kid’s bed, and replace it a hospital bed. Can you really look your child in the eye, and tell them they are going to get better, when you bring in a used hospital bed? And who looks forward to that?

But with our Tendercare bed, we were definitely looking forward to that. We had placed our order for a black, raised panel bed. It would look perfect in Dear Son’s bedroom. More important than that, he would have a “real” headboard. Not a fake, bamboo blind headboard that I made, so he would have something, but a real one. And we all know that having a “real” headboard on your bed, is good feng shui. And when you are sick, it’s important to pay attention to that.

Here is Dear Son's Tendercare bed with the side rail up. The bed remains fully functional with the slip-on headboards and footboards.

On Monday, our headboard arrived and it did not disappoint. It was absolutely beautiful and brought tears to my eyes. Dear Son had a real bed. A real bed that still met his needs. I could still operate the hospital bed, raise and lower the bed, pull up the side rails, raise the head or the foot of the bed and no matter what I did, it would still look beautiful!

But the best part of all, was seeing Dear Son’s face. We had been talking about the bed for some time now. When he got the hospital bed the first time, from the durable medical equipment supplier, there was nothing to talk about. I had talked to the DME about getting him a brand new hospital bed, so we didn’t have to have an ugly used one, but that was just to make the idea of a hospital bed palatable. But this time, I could get excited about the bed and Dear Son could too! He came home from school and I wheeled his wheelchair straight into the bedroom. He looked right at his new bed and broke out in a big smile. His eyes lit up and he couldn’t stop smiling. Later, when I layed him in the bed for the first time, he looked straight up at the headboard with a big grin on his face. You could see it in his eyes, that he was happy. And that was the best part!

I called Gary to thank him for making this lovely bed for Dear Son. Gary had contacted me when he first started his business, asking me what I thought of his bed. I told him it was a fantastic idea and I thought many retailers would be happy to sell his beds. I told him that I imagined Pottery Barn and Nieman Marcus would want to carry his beds. After all, they are really nice. He made this bed especially for Dear Son and it’s the first time he used the third panel in the raised panel design. You can see this third panel on top of the raised panels on the headboard. I think this bed is just beautiful.

Note the third panel. This is the piece that is above the pillow sham. The raised panels sit behind the pillow sham.Here is a view of the headboard. You can see the two raised panels and then the third panel above. Can you believe it's a hospital bed?

Here is a picture of the head of the bed in the "raised" position. As you can see, the bed remains fully functional.

But what’s really amazing, is that he’s changed an industry. No longer do the Durable Medical Equipment (DME) providers have to sit back and wait for people to call them when they need a hospital bed. No, they can actually tell people that they have a hospital bed they will want. And therein lies the beauty of a Tendercare Bed. A Tendercare Bed is not only a bed that meets your needs, but a bed you will want. You don’t have to be ashamed to get your child this bed, or your wife this bed or your brother or sister this bed. You can order this bed and be proud. But the best part of this bed, is that when they get it, they will cry with tears of joy, not tears of sadness. Because when you get a hospital bed, that’s what used to happen, you would cry. You would cry because you lost your own bed, you would cry for what was coming ahead and you would cry for the life you were leaving behind. If you know of anyone who got a hospital bed, you will know that is true. They not only cry, they will beg you not to put them in a hospital bed. But this time is really different. Now you can cry for joy. And that’s exactly what I did when I saw Dear Son’s bed. I cried. It was beautiful.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Gary Owens is the owner of Tendercare Beds. If you would like more information or to purchase a Tendercare Bed, you can contact Tendercare Beds here.

Dear Son Update- Home!

Photo of Dear Son's hospital bed.

Dear Son was released on Tuesday afternoon, once the 24 hour EEG was completed. The EEG was a mess; it showed subclinical seizures (meaning the patient doesn't shake outwardly but the brain is still seizing) 24 hours a day. As you may recall, when the vagus nerve stimulator (VNS) was replaced, they start the settings lower and work their way up until it is at a therapeutic level for the patient. Because the battery on the prior VNS was low, the settings were really high to compensate for that. They can't set the new VNS to that level, since it could be too high, hence the start at a lower level. As a result of the EEG, Ped Neuro Doc increased the settings and increased one of his seizure medications and they'll send someone out on Friday for seizure drug levels.

The ambulance transported Dear Son home. Since Dear Son's VNS incision is not fully healed, Dad could not lift Dear Son into his SUV to take him home since he might tear the incision. Without a wheelchair van, Dad has to lift Dear Son under his arms to get him into the vehicle.

Once we arrived home, Dear Son sat in his favorite rocker. I turned on his music carousel, the one that he got for Christmas, and he layed his head on the table and smiled. Our cat, Wiggles, came over and gave him a big kiss (sniff) and I helped Dear Son pet him. Dad arrived and gave Dear Son a bath and then Dear Son went to bed.

He will return to school for a half day today and a full day tomorrow. Tomorrow is, "Fun Friday" and Dear Son's favorite day at school. They do all sorts of fun activities from dancing (he gets to pick his partner) to color bingo, his favorite. I thought it was important for him to have some fun after everything he has been through. School has been great throughout this hospitalization. I talked to the Program Nurse yesterday and we agreed to have Dear Son go for a half day today and if Dear Son gets through the half day, he can go a full day tomorrow. If it's too much, they'll arrange for transportation for another half day tomorrow. Due to the holiday on Monday, he'll have three days to rest up before next week. Next week, will be a series of half days so that should make it easier for him.

Thank you for all of your love, prayers and support for Dear Son. I know all of that, coupled with his good medical care, made all of the difference.

Dear Son Update-Almost Home!

Things have improved since last Thursday. Dear Son is breathing on his own as of Saturday afternoon, although he had a little relapse Saturday night and needed more oxygen for a few hours. As of Sunday, he was breathing well on his own, without any distress. His oxygen saturations are around 94-96 now, which is much better.

This is a picture of the bathroom in the hospital room. In every room, there is a series of four tiles that depict children's artwork. The artwork was done by former pediatric patients at the hospital. It is one of my favorite parts of the hospital, because it always brings a smile to my face. Any time you use the washroom in the room, you see these charming images.

Friday was a rough day. The Neurosurgeon was refusing to see me and they were jerking me around. Things came to a head on Saturday morning. I think we have things resolved and I'll share the story when I have a more time. He hadn't come to see me in over two weeks and in light of this ordeal, I think it was appropriate that we have a conversation surrounding this surgery.

Here is a picture of one of the tiles from the series above. It made me laugh.

On a better note, I had the consultation with the Pulmonary specialist Ped Neuro Doc recommended. She is the Section Chief of Pediatric Pulmonary Medicine here at Big Academic Medical Center. She had been here over thirty years and is quite good. She examined Dear Son and talked to me about his lungs. Going forward, we won't need any oxygen or chest pt for Dear Son at home unless he gets to the point where he is coughing and has congestion at baseline (meaning when he's well and it's not due to surgery, like it is now). I am relieved about that. I just need to raise his bed when he's lying, sleeping or feeding and keep him on his right side until he can tolerate lying on his left side. He had some issues lying on his left side due to the fluid in his lungs. She also increased his chest pt and nebulizer treatments to every six hours, up from every four hours.

On Saturday, they did a chest x-ray which was much improved. Both lungs look a lot better. Even though it hadn't been officially read, you could see the improvement. Aside from the x-ray, I can tell by just looking at Dear Son, his breathing is better, his color is better and he wants to get out of bed. Yesterday he started crying when he wanted his diaper changed (just urine) and he's never done that before. I couldn't figure it out until I saw him turn his head to see if the nurse was coming over by him. When he fussed some more, she took her hand and stroked his head and told him she had never seen him cry. He smiled. I think he just wanted her to pay attention to him. A sure sign he's getting better!

Ped Neuro Doc has just been outstanding as usual during this hospitalization. What makes it good is that he knows Dear Son so well and really oversees all of his care. In this case, he functions as our primary doc and does the role of the pediatrician and neurology. Without him, Dear Son's medical care wouldn't be as good. Instead, when these things happen, the docs would just be treating the medical crisis at hand, versus looking at the entire patient and his history, if that makes any sense. He has the ability to step back and look at the big picture for Dear Son. He'll talk about what it means now, what we need to do moving forward and looking back, what we can learn from Dear Son to help other pediatric patients. It's no wonder, he's a favorite of the patients, their parents and the hospital staff.

On a more exciting note, Dear Son's bed is finally finished and ready to be shipped. Gary Owens, inventor and owner of Tendercare Beds, graciously offered to make Dear Son a hospital bed. I've written about it a few times before but if you haven't seen it, be sure to check it out. He makes headboards and footboards that slip on right over hospital beds so the your hospital bed looks like a regular bed. They are just beautiful. I post pictures of it once it arrives.

Thank you for all of the prayers, comments and support. It looks like Dear Son will be released tomorrow, if all goes well. Today, he is getting a 24 hour EEG. If that looks good, we can go home tomorrow. Ped Neuro Doc wanted to keep him over last weekend to give Dear Son more time to recover. Dear Son's been having some seizures, some of which are started from the chest pt. When they turn his vagus nerve stimulator after the surgery, they have to start the settings out low and then increase them slowly. We know the settings were too low, hence the seizures, but we have to go up gradually again and this takes a while. Since the battery was depleting on his old vagus nerve stimulator, they had to keep increasing the settings to compensate for the depletion. When they get the new one, they can't start it where they left off so they have to start lower and work their way back up until they get it to a point that controls most of his seizures.

Dear Son Update-Out of the ICU

Dear Son was transitioned last night to a regular Peds floor. They want to see how he will do with less care. Currently, he is still on 3 liters of oxygen via a nasal canula, receives chest pt via the vibrating vest along with albuteral every three hours. What is still problematic is the chest x-ray. Monday, Dear Son had perked up and on Tuesday, they didn't feel he needed a chest x-ray. I wasn't comfortable because I hadn't see consistency in the chest x-rays and asked if they could do one. They did it and the findings (Findings are the clinical impression by the radiologist.)came back unchanged, but in viewing it, I thought it looked worse because the left lung fluid had increased and the right lung fluid was down whereas the prior day's x-ray showed similar amounts of fluid in the left and right lung. Yesterday they did a chest x-ray (without my prompting, lol!) and the findings on the chest x-ray were worse than the previous chest x-ray. The left lung showed increased collapse and fluid and the right lung still was a bit worse as well. I typically ask to see the chest x-rays every day and I always read the impressions and the findings as well as listen to what the Attending Doc tells me. I would like to see some stability in them with the chest x-rays being the same or better on a daily basis and they agree. Also, while he seemed himself on Monday, he was more subdued on Tuesday. He did have his eyes open but was very quiet. Yesterday, he slept virtually the entire day and opened his eyes only a few times. I would have preferred to see him more alert and active on Tuesday and Wednesday however his behavior seemed to mimic the trend of the chest x-rays. They were concerned as well which they verbalized to me which is why they kept him in the ICU a bit longer. They still were unsure up to last night as to whether he could manage with less nursing care on a regular peds floor and were debating a "step down" (A step down floor is a step down from the intense nursing care of the ICU but more care than a general pediatric floor.). Going forward, they are content to do chest x-rays as needed. They also feel sitting him up would help with the fluid. Since I can't lift him into a chair, Dad came down to lift him into the chair. The hospital has difficulty locating their hoyer lift and while they do have a four man "lift team", the last time I tried to use them to lift Dear Son into his wheelchair for discharge, they couldn't locate the team and only one guy showed up. Some time later a second guy showed up and they said they couldn't lift him and asked me for help. Still unbelievable that in 2009, a level one trauma center for peds, that cares for medically complex children like Dear son, doesn't have hoyer lifts on every floor or even the ability to locate one.

On a better note, the central line has been removed and he has completed his course of Zosyn (Last week, he was on Vancomycin as well but that was discontinued).

Today, we have our follow up appointment with the Neurosurgeon that was scheduled at the time of the operation. He never came to see me after the surgery or while I was there which would have been nice. I think in light of the situation, a little face time with me would have gone a long way. He did show up briefly last week, when Dad was there, and stated it wasn't as bad as he was told, which probably wasn't the best statement to make in light of Dear Son's fragile condition. The fact that he remained in ICU for ten days and the endless discussions over the intubation and whether or not they could extubate, along with everything else, including the recommendation for pallative care, would be very hard to make a case that he wasn't "that bad". On the flip side, showing up and having a conversation with me over the surgery, would have gone a long way. I don't expect things to be perfect, but I do think in this situation, that while a neurosurgeon may not have been able to predict the mucous plug and lung collapse, I do think he could have made a better decision regarding the general anesthesia versus the heavy sedation which prompted the lung collapse.

Next steps are to get an extended EEG, seizure labs, see if he can manage with less care on a regular peds floor and to meet with the pulmonary specialist to see what is needed so we can go home. Ped Neuro Doc mentioned the possibility of being released on Sunday but I'll have a better idea when he gets back in town tomorrow. Dear Son will probably get a Nissen done in about two months or so, or whenever he had recovered.

Thank you again for the good comments and information on the last post and for your continued prayers and support.

Dear Son ICU Update IV- Much Improved!

I managed to get home today to post an update. When I was home on Sunday, I turned my furnace on and got nothing but cold air. I called the leasing office of my apartment complex the next day and they came out to fix my furnace. The heat exchanger broke and they needed to replace it. In the meantime, they broke the gas line. A few jumbled messages from the leasing office staff had me worried. Today I got a call from the leasing office saying there was a problem in my master bedroom closet. They said a sprinkler went off in the hallway and water seeped into my closet. They said they had the carpets cleaned and had giant fans in my apartment. I envisioned all of my beautiful floral prints and some decorative mirrors that I store there as damaged. I rushed home to find that wasn't the case.

Instead, I walked into my apartment and the patio door and bedroom window are wide open with these giant turbo fans blowing. The fans are so loud I can't even talk on the phone. All of my furniture has been re-arranged and pretty much, anyone can walk right in the apartment. The maintenance man came and explained that the sprinkler had gone off in the outside closet (where my furnace is located) when they were working there and they had to call the fire department. The water ran down all the walls and into my apartment dining room and into Dear Son's room. They had giant fans running and all of my furniture moved around. They brought in another vendor who will cut out the wet drywall and replace it tomorrow. Once the carpet is dry, they will clean them for me. Yikes!

As for Dear Son, I think we have finally turned the corner. His chest x-ray today was much improved. The chest pt (and albuterol) every three hours seems to be working along with turning him over every two hours. He is still on 4 liters of oxygen but he is on a nasal cannula. They discontinued the Lasix today, which he was on to help pull all of the fluid out of his system. He still has a central line and they are feeding him very slowly, around 40 ccs an hour, which is roughly a half of a cup or so, if I recall.

The Pediatric Intensive Care Attending (PICU) Doc met with me alone today and recommended pallative care. They have a program for kids that is funded through a grant where they provide care and support for weak or "vulnerable" children and she thinks that Dear Son could benefit from that. It's different from your traditional hospice where the patient is only given six months to live. I also reviewed my notes from Dear Son's medical history and informed her that not only did Dear Son have two MRSA pneumonias in 2006, but he had a right lung pneumonia in 2007, 2008 and a right lung collapse in 2009. My concern was how I could deliver the best home care after this hospitalization and what future admissions would look like with these concerns. We will be meeting with a pulmonary specialist to see what else we can do.

She also discussed having a plan in place for the future. I had been worried about a trach however she explained that a trach is only put in kids when they have airway issues or when someone is vented. In Dear Son's case, should he get another pneumonia, there may come a time when we have to decide if they can do a trach and send him home on a ventilator or if

we will refuse that. An ugly decision for sure.

Our greatest challenge now is still feeding, since they are concered about reflux. They need to insure that Dear Son does not aspirate his own saliva nor his food. I asked Ped Neuro Doc if Dear Son needed a Nissen. When he had his g-tube put in many years ago, it was strictly for meds and not used for feeding. As a result, they chose not to do a Nissen. It was less invasive to omit it and it really wasn't needed. It was a good decision at that time and for many years. Now that Dear Son has these issues, they think they want to have him in for surgery to do a Nissen. They would have to wait eight weeks or so or whenever he fully recovers from this hospitalization.

We are still in the ICU and I expect we will be transitioned shortly, maybe even tomorrow, to a regular floor. They are proceeding cautiously and want to see how he does without the intense care of the ICU. Currently, they do chest pt on Dear Son every three hours where they hook up a vibrating pressure vest to break up the fluid in his chest.

I am going back to the hospital now. Thank you all for your continued prayers and support for Dear Son and his mother. I know all of your prayers and good wishes, along with our medical care, has helped Dear Son turn the corner.

Dear Son ICU Update III

Things have gotten progressively worse over the past few days. As you may recall, Dear Son had surgery on Monday to replace his Vagus Nerve Stimulator with a new model, since the battery ran low. For the surgery, they gave him heavy sedation and Dear Son was unable to process his own secretions (saliva). As a result, he developed a mucous plug in the brochial tubes and his right lung collapsed. Dear Son was admitted to the ICU, placed on a non-rebreather, with 15 liters of oxygen. He was given Vancomycin and Zosyn to help fight the infection.

This photo shows the in re-breather (not sure of the spelling). This allows for a high concentration of oxygen to be delivered to the patient.

On Friday, the chest x-ray was worse, showing there was more fluid in both lungs. Most of what has been problematic for me, is trying to understand exactly what is happening. They cultured the lungs and found out it wasn't a MRSA pneumonia. Since it wasn't a MRSA pneumonia, they discontinued the Vancomycin. Some of the data seems pretty good at times however the chest x-ray doesn't seem to follow. They can not seem to stabalize Dear Son. They have conversations almost daily with regards to intubation with the dilemma being that the ICU Attending Doc feels if he is intubated, he won't be extubated with Ped Neuro Doc disagreeing-he does think he can be extubated. The ICU Attending has been very clear that she does not believe he can be extubated and she said that she does this every day. On the flip side, Ped Neuro Doc knows Dear Son best, he has followed him since he was ten weeks old. His judgement is excellent and he has always been right on where Dear Son is concerned. I also wanted clarity with regards to what exactly was causing his issues; They explained that it was the collapsed right lung along with the infection that was made worse by the fact that he is non-ambulatory.

I also needed some clarity with regards to the oxygen. They are using this in re-breather and in the past they had used the Bi-Pap and C-Pap machines. They explained how the Bi-Pap and C-Pap machines work, pumping oxygen into the lungs and the problem is that Dear Son is so weak that if he were to cough, trying to clear out some fluid, the force of the machines would push back causing him to aspirate into his lungs.

Another issue is that of platelets. His platelets are low and he has had issues with recurring fevers all week. Once the fever goes away, a few hours later, he has a low grade fever and then it rises. We repeat this exercise daily.

Friday night, Dear Son struggled all evening and throughout the night. I contacted the nurse in the middle of the night and asked him to call the doc because Dear Son was working so hard to breathe. His respirations were 40-44 breaths a minute. The doc took a look and said he was fine. I told the nurse that the doc was wrong and that Dear Son was in distress. I usually am not this bold however I do know when Dear Son is in distress and what is normal for him. I don't profess to know the meaning of all of the data however I do know what I see.

On Saturday morning the chest x-ray arrived and was worse. It wasn't only worse, it was horrible. The ICU Attending wanted to do deep suctioning of Dear Son's lungs and I disagreed because they did this while he was on his back and I was certain if they did this, he would aspirate more by choking on his own vomit. In the end, they attempted it and he vomited twice on his back and they suctioned it out. They stopped doing it after that and just used the pressure vest. Ped Neuro Doc came by and said the chest x-ray was, "absolutely horrible". He was extremely concerned. Later that night, I saw the chest x-ray and was flabbergasted. The entire left lung was filled with fluid and 75% of the right lung. The x-ray findings read that there was, "a complete opacifaction of the left lung and a partial opacifcation of the right upper and lower lobes, worse than the previous study". The impression was that it was a worsening of the lungs most likely due to "increased retained secretions".

By Saturday evening, I was feeling pretty down. I had contacted everyone all week and asked them to pray for my Dear Son. He was on many prayer lists. I worried about Mother's Day because it was on Mother's Day of 2006 that he nearly died of the MRSA pneumonia. They did a blood transfusion that day and some three weeks later he recoved. I love my son so much and the last thing I ever want is to have Mother's Day be the anniversary of his death.

On Saturday, they increased the chest pt to every two hours along with changing his positioning. By this time, his eyes were swollen shut, he had been unconscious since Tuesday and unresponsive since his surgery on Monday. His left foot was swelling and they weren't certain why. They increased the Lasix to get rid of the fluid which was somewhat problematic since he wears a Scopolamine patch to dry up his secretions. The patch dries up all secretions and doesn't allow a person to sweat and Lasix does the opposite-it pulls the fluid from the body. I felt bad for Dear Son.

Today, the x-ray was a lot better. Both lungs showed improvement with some clarity on the top of each lung meaning some fluid had subsided. The problem though is that now they feel that he has chronic aspiration meaning he aspirates all the time on a daily basis and occurs when he is lying down. Dear Son can't sit up much anymore so this is a huge issue. In additon, they have recommended we see a pulmonary specialist after the hospitalization is complete to see what equipment I will need in the home to care for Dear Son.

Perhaps the saddest part is that this will always be a recurring issue for Dear Son. As he gets weaker, he will probably get to the point at any time where he needs a trach. I don't think I can do this as I have a very weak stomach and I think it would break his spirit. I asked them if it would be appropriate for Dear Son to have this, considering he has a progressive neurological disease. I asked if he could still get an aspiration pneumonia and the answer is yes, so I am not certain what issues this would resolve. That being said, I don't know how I could really make that decision to not do the trach. I have been pretty firm in my resolve that it was not something I could honestly do however the bigger issue is that I probably could never really agree to do it, if the decision had to be made.

But perhaps the best thing that happened today was when Dear Son said, "hi" to me three times. He was lying in bed and had not come to all week. Out of the blue, as I was sitting in the chair, I heard him softly say, "hi". Not once, but three times! That Dear Son may not know it's Mother's Day but he always delivers. It was the absolute best thing I would hear all day. Dear Son seemed to be breathing easier when I left today. I only hope it continues. In the meantime, I really want to bring him home.

Thank you so much for your continued support and prayers for my beautiful Dear Son. Please continue to pray that he gets well.

5/11/09 Update 8 a.m.- It appears our joy is short-lived. Today's x-ray was worse. I will try and post any updates today after work before I go back to the hospital; I won't have any internet access once I am there. Due to Dear Son's MRSA (once MRSA, always MRSA per Big Academic Medical Center), he is on "contact isolation" which means they won't allow me to use any hospital pcs or anything else down there, even though I don't have MRSA.

*The two photos with the black tubing are of Dear Son using the pressure vest. The pressure vest is hooked up to a machine and vibrates the vest. The vibration helps break up the fluid inside the lungs. That fluid, is then cleared from the lung when the patient coughs. They are using this machine on Dear Son every two hours and for thirty minutes each session.

Dear Son ICU Update II

Dear Son struggled a bit in the ICU last night. As you may recall, Dear Son had surgery on Monday to replace his Vagus Nerve Stimulator with a new model, since the battery ran low. For the surgery, they gave him heavy sedation and Dear Son was unable to process his own secretions (saliva). As a result, he developed a mucous plug in the brochial tubes and his right lung collapsed. Dear Son was admitted to the ICU, placed on an non-rebreather, with 15 liters of oxygen. He was given Vancomycin and Zosyn to help fight the infection.

Last night, Dear Son struggled on his right side. He was breathing so hard that the nurse and I turned him on his left side, which is the site of the surgical incision. He was breathing easier however as a result of lying on that side, his left lung filled up with fluid. To reduce the fluid, they started him on lasix and are also giving him magnesium sulfate and potassium phosphate. They increased the Vancomycin since it wasn't at a therapeutic level. Blood gases, which monitor how hard Dear Son is working are still o.k. and are taken every two hours. He continues to get respiratory therapy every three hours that includes both percussor and albuterol. The albuterol helps the brochial spasm but makes Dear Son work harder since he does not get all of the oxygen he gets when he is on the inre-breather. The anesthesia can deplete the seizure medications so they are taking blood levels of those daily.

I spoke with Dear Son's Ped Neuro Doc to get a better understanding of the situation. He states that Dear Son has a substantial infection and will be there quite a while, at least two weeks. He is concerned that he's not stabalizing and that he may still need to be vented. He does not expect him to regain consciousness for a while.

The Attending Doc spoke with me tonight as well. She respectfully disagrees with Ped Neuro Doc and feels that if Dear Son is intubated, that he can never be extubated. She explained that she does this every day and since he may not be able to be extubated, she is doing everything she can to avoid it. She would prefer it if he wasn't working so hard to breathe but she is watching the blood gases. She also stated that last night, when Dear Son was working so hard, his heart rate was 175-180 and that today it was much better so we have reason to be pleased that while things aren't getting better, they could be getting a lot worse.

In addition, I explained to her that I had been worried that if Dear Son was working so hard and then was intubated that he might not make it. They stated that they are watching the blood gases so they will know asap if he is struggling. One frustration for me, throughout this hospitalization is that sometimes the numbers/data look better than what I see in terms of Dear Son. I know when he's working hard and it takes an awful lot of work for Dear Son to get through his day when he is well. For example, he goes to school, comes home and goes to bed after school then sleeps until the following morning. That takes all of his energy. So you can imagine that when he's not 100%, it would really take even more of his energy.

Finally, I had some conversations with Ped Neuro Doc regarding the surgery itself and the process for sedation. He agreed that they need to have a more formal conversation with Neurosurgery surrounding sedation for children like Dear Son as well as the discharge process for the outpatient surgeries. Perhaps with children like him, they may need to stay an additional 24-72 hours to be monitored.

Overall, I am quite cautious at this point. I am relieved that I have someone like Ped Neuro Doc who knows Dear Son so well (he's treated him for 17 years) involved in the decision making. I also know that if anyone can save Dear Son, it's Big Academic Center's ICU. As for Neurosurgery, the Neurosurgeon implanted Dear Son's device in 2004 under worse conditions and Dear Son recovered. While perhaps a different outcome may have occurred with the use of a breathing tube and general anesthesia or perhaps simply by additional monitoring for 24-72 hours, I do feel that he did try to make the best decision for Dear Son on that day. I recall discussion that morning of whether or not to use a breathing tube. (The majority of the time, they do not use that for vagal nerve stimulator replacement surgeries.) Dear Son is a complex case and it's important to remember that when he made this decision, he made it in his best interest. I don't think anyone expected that this would have happened and I think it's much easier to look back and think that a different decision could have been made when in reality, it would be pretty hard to forsee this type of situation. That's just my take as a mother. I guess what I am trying to say is that while it's certainly unfortunate that Dear Son is in this predicament, I do believe the Neurosurgeon was acting on Dear Son's best interests.

Thank you for all of your comments, thoughts and prayers. I appreciated your continued support. I will try and keep you posted as much as possible. I am home tonight since Dad is staying overnight however I will be there the next few days.

Dear Son in Pediatric Intensive Care

Monday's surgery to replace Dear Son's Vagus Nerve Stimulator went fairly well. The surgery was scheduled for 10:30 a.m. however it did not start until after 1 p.m. Since we don't have a wheelchair van, I have his Dad come along to lift Dear Son into his SUV for transport. Since the incision was under his left arm, he would tear the incision if he did this. I spent the morning of the surgery on the phone with the insurance companies trying to get approval for an ambulance ride home. I contacted Blue Cross Blue Shield, the primary insurance company and explained that it was medically necessary. The benefit plan stated however they would only pay for an ambulance if it was an emergency so they denied it. I was able to get prior approval from the secondary for an ambulance to transport him home. At 3 p.m. he came out of surgery. They explained that he was heavily sedated but that he did well.

Around 5 p.m. or so, they called the ambulance to take him home. Dear Son started choking a bit as if he were going to throw up. They gave him Zofran however some time later, I noticed what appeared to be blood all over his arm, at least from the angle I was sitting at. When I inquired about it, they checked and said it wasn't blood but he had an allergic reaction to the Zofran that turned his skin bright red. Anesthesia was called and the doctor gave him Benadryl for it. I took Dear Son home and things seemed to be going well. To make sure he was o.k. I layed down on the bed across from him when I got home to listen to him breathe. All appeared to be going well. He slept through the night on Monday and all of Tuesday. He never stirred and never woke up.

On Tuesday afternoon, I began to get a little concerned because he hadn't woke up at all. They did explain that he was heavily sedated before I left the hospital, but around 3:30 in the afternoon his breathing became somewhat different and labored. By 6:30 that night, his breathing had deteriorated and he was breathing what seemed to be one breath a second. I don't know how else to describe it, but I know when Dear Son is in trouble. I take his temperature and it's 101.7 however his arms are freezing while his head is hot. Not good. I paged Ped Neuro Doc. He recommended I take Dear Son to Big Academic Medical Center right away. Since I can't transport him on my own, I had to call 911 to get an ambulance to take him to Local Hospital and then Ped Neuro Doc sends transport to Local Hospital for pick up. We agreed on the plan and he began getting the admission to Big Academic Medical Center.

Paramedics arrive and I explain that he'll need oxygen; I give them his history, tell him about his surgery and about the fever. The paramedics take his oxygen saturation and it's 77% with his respiration at 30-33 breaths a minute. They begin oxygen and transport him to Local Hospital. Local Hospital works on him a while and attempts to get an IV in but can't. They have six nurses attempting it and finally use a "quickie ultrasound" machine to locate a vein. Around 9 p.m. the air transport team from Big Academic Medical Center (BAMC) arrives. They explain they need to work fast since they want to get him to BAMC before they need to put a breathing tube in him. I am worried.

Prior to leaving, they ask me to sign a consent form to transport him via the helicopter. Dear Son has been transported five times like this however this consent form is different. Written on the consent form is the fact that I am signing off that I am aware of, "crash and/or death". They've never done that before. I wonder how bad off he really is. As they get ready to leave the room, they turn and ask me if I want to give him a kiss. Things like this make you worry he might die. I kiss Dear Son and they ask me for my cell phone number so they can call me and tell me where to meet him. (I am going home to grab my overnight bag and meet them at the hospital. They have everything they need to treat him. I have an emergency information sheet with diagnosis, meds, contact names, the works.) They said it might be the ER or the Peds Intensive Care Unit (PICU). Usually, this isn't a major concern, since I drive to BAMC and then they just tell me where he's at, not a big deal. So the fact that she is calling me personally, is really worrying me.

They call me on the way down and he's in the PICU. When I get there, they are working on him. I wait for them to vent him however they don't. They've taken a chest x-ray and suspect a right lung pneumonia or an infection from the surgical wound. His wound seemed fine Tueday morning but by afternoon it had started to bruise. He's working awfully hard and I really don't like it. They work on him all night, trying breathing treatments but nothing seems to work. They state the numbers on the monitor aren't bad but what is odd to me is that his physical condition is deteriorating. He is working far too hard and as far as I am concerned, we need to do something. I tell them repeatedly throughout the night that he's working too hard. Interestingly enough, Big Academic Medical Center would tell me later that Local Hospital told them Dear Son was septic and going to die. I am not convinced Local Hospital knows what they are doing. Despite the numbers on the monitor, doctors repeatedly show up throughout the night and finally, around 4 a.m., neurosurgery stops by to check out the incision. They think it's pretty good but everyone is still pretty concerned.

By morning, the Attending Doc comes in and states that Dear Son is still working far too hard. I agree with her. They do a chest ultrasound and she states that they will attempt to run a pigtail catheter into the lung (actually the air space next to the lung) to try and drain the fluid. The lung has partially collapsed and from the looks of the x-ray there is fluid. They attempt that but don't find any fluid. They then put a central line into his groin since the IV's keep blowing. He had an arterial line but in when he came in and that was still o.k. If that doesn't work, they will need to intubate him however the problem is that if they intubate him, they will not be able to extubate him. She asks me how I feel about that and I tell her that I know from the way he is breathing that we need to help him or he'll tire out. I can't worry about not being able to extubate him without doing what we need to do to help him.

On the inside, I feel terrible. I hope Dear Son is strong enough to come through this but I am beginning to wonder. Things don't appear to be going very well. Dear Son has never come to nor opened his eyes since Monday and the prospect of him being on a ventilator forever is humbling.

Ped Neuro Doc comes in to speak with me and says he has reviewed the x-ray with Dr. Y, the radiologist. Apparently, the brochial airway on the right is blocked with a mucus plug and that caused the lung to collapse. The lung collapse is what they saw on the x-ray (meaning it wasn't fluid). They suspect that the sedation from the surgery inhibited Dear Son's ability to move or cough thereby inhibiting his ability to swallow and process his own secretions. As a result, he aspirated his own secretions and developed a mucous plug. (Remember he wears a Scopolamine patch normally to dry up his secretions since he can't process them normally.) This makes sense to me since Dear Son didn't move or stir at all on Monday night or Tuesday.

The Peds team however thinks that chest PT (where they pound on the chest and back) may break up the mucous plug, which will get air into the lung and help him breathe easier. Ped Neuro Doc doesn't think it will work and even if it does, he thinks Dear Son is breathing far too hard and needs assistance. He recommends he be vented but does tell me that he thinks he can be extubated. I am relieved. He knows Dear Son best and has cared for him since he's been ten weeks old. He also functions as Dear Son's primary care doc. He does an outstanding job. I am relieved in some respects that we all agree that Dear Son is working far too hard.

Peds does 40 minutes of chest PT and manages to break up the mucous plug and get air in there. The x-ray looks better and they think he is breathing easier. They show me the x-rays and I have to agree. I still am not comfortable when I look at him and see him breathing so hard but they try to convince me that he is breathing easier. I think it made a slight difference but I still think he's breathing hard enough that I worry it's going to exhaust him. He's been breathing hard since 6:30 Tuesday night and he still isn't much better. He still is not awake.

Overall, I am very concerned. Dear Son had a relatively simple surgery to replace his Vagus Nerve Stimulator and yet he wasn't able to manage it. I still don't believe we are out of the woods but I certainly feel better than I did this morning when they said that he'd never be extubated. After all, this is the PICU at a Level One Trauma Center. They do this every day. If anyone knows, they know.

As for now, I have just left the hospital to come home for a few minutes while Dear Son's Dad is staying there. I'll keep you posted when I get a chance. I don't have pc access there due to contact precautions (Dear Son previously had two MRSA pneumonias there.) Dear Son is on two antibiotics: Vancomycin and Pipercillin. They are checking his blood gases every two hours to see if they will improve. They are moving him over from side to side every two hours so he doesn't have any more lung issues on either side. This is hard for Dear Son since his left side is still bruised and sore from the surgery. I am sure that isn't too comfortable to lie on that side. They continue to treat his fevers. They will continue chest pt in order to avoid intubating him. They expect that we will be there for a few days.

Please pray for Dear Son. I will update you when I can.