Photos of Dear Son at school during music on "Fun Friday".

Dear Son returned to school on Thursday for a half of a day. It's always hard to know precisely when to send him to school after a hospitalization. On the one hand, I want him to have some fun, especially after this hospitalization. He loves people and school makes him happy. On the other hand, I worry about pushing him too fast and I don't want a relapse. But staying home is sometimes boring for him.

I spoke with Ped Neuro Doc before we left and he said he could return to school on Wednesday or Thursday. Dear Son had been alert at the hospital and trying to get out of bed for a few days. I contacted the Special Needs Program Nurse at school and we agreed to try a half day on Thursday and then a full day on Friday, mainly because Friday is "Fun Friday" and they play a lot of games on that day. I really wanted him to be there for that.

On Thursday, he went to school for a half day. He didn't seem to know what was going on when he arrived but later, when one of the boys acted up, he woke up a bit, excited over the action and was back in the swing of things. As the day progressed, his eyes got heavy however the classroom nurse told me he seemed a little irritated he was sent home after only a half day. She made the analogy that it's kind of like going on vacation for a while and then coming home. Sometimes it takes a day or so to get acclimated again.

On Friday, he was back in full swing. He played color bingo, his favorite, and had music therapy. He took a forty minute nap during lunch. He had such a great time on Friday and was so happy, that his teacher sent me these photos in the middle of the day showing how much he enjoyed himself. Yay for Fun Friday! I guess I made the right decision after all!

After school, we sat outside for a little bit and then I put him to bed to sleep. He sleeps for a while and then woke up later in the evening. We will be staying put this weekend and happy about that. My plan is to take him for some walks and maybe even go to the local Memorial Day parade on Monday.

Next week should be pretty easy for him. There are a series of half days of school due to finals. That should allow him plenty of time to recover.

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.

Surgical Preparation for Special Needs Children: A Parent's Perspective

We started the day like we normally do. Dear Son had completed his feeding via the tube and I was getting ready to get him dressed for school. I leaned over his bed and gave him a big hug. I take his left arm and put it around my neck. I tell him he needs to give his mother a hug and I proceed to hug him and kiss him on his neck. Some days, his arm is tight and when I put it around my neck, he nearly chokes me. That’s the way it had always been but this year, he’s been making such nice progress at school using his arms, that some days, when I put it there, he will not choke me and instead has more control. On this day, I ask him for a kiss however at seventeen, he does not want to do it. While I kiss his neck, I love to watch his face, his eyes are sparkling and he is laughing. His face is full of joy as he teases me. I know he loves his mother but he’s just having a little fun. That is who he is…a very sweet young man. After the hug, I proceed to get him dressed for school.

Some time later that evening, at he was lying in bed getting his dinner fed through the g tube, he began to have a seizure. The seizure was small at first but began to gain in intensity. It started with some small hand shaking and some agitation but soon began to build. I took the magnet off of his wrist and put it over the vagus nerve stimulator which is implanted under his left armpit. Holding it there for three seconds will send a charge up to the vagus nerve and stop the seizure. This particular evening, it did not work. The seizure was not stopped and began to grow. As it did that, I became more concerned, doing whatever I could to stop it. I used the device again and again and finally, the seizure subsided. Dear Son came to a bit. I was standing there asking him if he was doing o.k. and telling him that things were going to be o.k. One of my hands was on his arm and the other on his bed when he leaned forward, and kissed my hand. Being special needs, he kisses differently at times, for him, a kiss is a lick. It’s always been his way of thanking me for helping him or for talking to him about something that has bothered him. I thanked him for the kiss and thought back to the morning where he was teasing me and not giving me a kiss and then that evening, when he was in trouble, kissing me right away. That is the beauty of these children. They live every day from the heart. Some times you get what you earn and other times you don’t but when you do, it means a lot.

We have a saying Dear Son and I, that I coined some time ago. It is, “where you go, I go”. It means that wherever he goes, I will be there to pave the way, to protect him. That nothing will ever happen to him without me questioning things and being his voice. Because he is non-verbal, I need to stand up for him and to protect him. He can not tell someone when something is hurting him but I will go to bat for him to make sure that a particular test is necessary for him or to see if there isn’t another way to do the test that would be less invasive or more comfortable for him while still allowing medical personnel to do their jobs. And this week has been no different.

Early last week, I received a phone call that Dear Son had a surgery date to have his vagus nerve stimulator (VNS) implanted. I had contacted the secondary insurance a few days prior to get approval and they could not give approval without a surgery date and Big Academic Medical Center would not give a surgery date with prior approval from the insurance company. I had them speak with each other to get this resolved and they had called me with a date. As I mentioned previously, the diagnostics had come back on the device and it showed that his battery was wearing down making the device less effective, hence the seizures. Initially they were going to replace the battery however more often than not, they typically will upgrade the device with a new model. The newer model is reportedly more sensitive and should allow for easier activation with the magnet.

Prior to a surgery, I typically have a lot of questions. My main concerns are making certain that Dear Son is taken care of and that we avoid any problems. Big Academic Center wants the same thing however sometimes a “one size fits all” approach doesn’t work well. For this surgery, the instructions I have is that he should receive nothing to eat or drink after midnight, and that he can take his seizure medications with a little bit of water. I need more information that that. Due to the large amount of medication he receives, I will see if I can give him 60 cc of formula with them so his stomach won't be irritated.

My other concern has to do with him choking on his saliva. Dear Son has severe swallowing issues related to the progressive neurological disease. If he were to lie on his back, he will choke to death on his saliva. Currently, he must be on his side at all times when he is lying down. Dear Son can not roll himself over so if he were to get in a situation where he is choking, he can’t help himself. Even if you tell the docs that, people sometimes forget. In addition, he wears a Scopolamine patch to control his secretions. When I ask them if this will be a problem for surgery, for him to wear his patch, they inform me that they will use a different drug for this, called Robinal. Robinal did not work for Dear Son so I explain that this isn’t a good option. After some discussion, they agree to let him wear the patch for surgery.

When I speak with the nurse practitioner about his seizure medications, she informs me that they can give several of the seizure medications via IV. Our surgery is at 10:30 a.m. and we are instructed to be there at 8:30-9 a.m. I tell her that he normally receives his medications at 6:30 a.m. and if he gets them that late, he could have seizures. She ends up calling the anesthesia doctor and gets approval for me to give his six seizure medications with 60 ccs of formula at 4:30 a.m. This will help prevent any seizure issues during surgery and also help avoid a reflux issue from the irritation of giving meds on an empty stomach.

Finally, I ask questions about the programming of the device. Earlier this year, when Dear Son was hospitalized, we had a new person (to me) program the device and the following day when he was going to be discharged, I was told someone would come to check the device to make certain the settings were accurate and no one showed. As a result of this issue, I wanted to make sure that I understood what would happen after the surgery. I wanted to know if they ramped up the device or started them at the previous setting. The nurse practitioner seemed peeved that I would question her and told me she did this everyday and that she could understand that I was “anxious” about the surgery. I explained to her that I wasn’t anxious but that I needed to understand what was done since sometimes people at Big Academic Medical Center don’t always communicate very well with each other. My concern with the vagus nerve stimulator was that if the settings were set too high, that he would be shocked and it would be painful. Some of the patient notes that I read on the internet had described the shocks as more powerful and painful with the new device; since Dear Son is non-verbal, I wanted to know how to avoid that. She explained that for non-verbal kids, when they cough a lot (coughing is a side effect of the VNS), she knows the setting is too high. Finally, I asked about the incision and school. I needed to know when he could return and she informed me that typically the neurosurgeon doesn’t want the kids to go back to school until he has seen them in follow up a week later. So essentially, Dear Son will be out of school a minimum of one week. This would have been good information to have a little bit earlier since being self-employed and working part-time, I need all of my income to keep a roof over my head.

In the end, I am pleased that they were able to schedule him so quickly. The neurosurgeon is the same one that implanted the device in 2004 and the surgery went well. Not only is he a great pediatric neurosurgeon but he has an amazing bedside manner and is perhaps the nicest man you will ever meet. The Nurse Practitioner does a great job too. She was the one that I spoke with in 2006 who helped me arrange for a transfer to Big Academic Medical Center when Local Hospital failed to diagnose and treat a MRSA pneumonia and he nearly died. Her ability to contact a doctor on a Friday night and help me arrange for a transfer saved his life.

That being said, there are things that could be done different by hospitals to make surgeries easier. Our case above is a little unusual in that normally you have an anesthesiology consult in person prior to a surgery where many of these issues would have been addressed. Due to the speed of this date, this was done over the phone. One thing that would have been helpful was knowing that he couldn’t return to school for a week or more. I am self-employed and work part time while taking care of Dear Son. It’s not always easy to cancel jobs at the last minute and lose revenue when these situations arise. Even knowing these things a few days ahead would have been good.

Last night, I began to think about getting Dear Son home from the hospital. Typically, his Dad lifts him into his SUV to take him home since I don’t have a wheelchair van. With the incision under his left arm, he won’t be able to lift him without tearing the incision open. We can’t lift him another way since it would still require grabbing him under the arm. So last night, I went on-line to see about renting a wheelchair van to get him home. The place I found, requires a three week advance notice to rent a wheelchair van.

If we can do this, I will take his hoyer lift sling to the hospital and hope that they can find a hoyer lift for us to use to get him into the wheelchair. You would think that Big Academic Medical Center would have this type of equipment there however that has not been my experience. The last time he was hospitalized and I asked for help lifting him in the wheelchair, they brought in a “lift team”. This was a new concept to help patients and they identified four individuals as the “lift team” who would lift the patient. Well, they could only find one that day and finally rounded up another person. Both men weighed around 120 pounds each and when they saw that Dear Son was seventeen and weighed 170 pounds, they said they couldn’t do it. I couldn’t believe they couldn’t locate a hoyer lift at a Top 100 Pediatric Hospital.

In summary, my advice to other parents when their child has a surgery is the following:

- Ask questions so you understand the entire process.
- Don’t be intimidated by medical professionals. It’s your child and asking questions to better understand the process is fine.
- Make sure the surgical procedures help guarantee the best outcome and maximum comfort for your child.
- For outpatient procedures, get clarity on how long your child will be out of school and what the activity level is appropriate.
- Make certain to get a prescription so they can return to school.

For hospitals, I’d recommend the following:

- Review your procedures to guarantee the best outcomes. If patients are coming in for vagus nerve stimulators, which are only implanted for patients with uncontrolled seizures, having a policy that states only water can be given with meds may not make sense. For these patients, who probably are on multiple seizure medications and who more than likely have reflux issues, you may want to review the policy.
-For all outpatient procedures, be clear on what the patient can and can not do after surgery. If they need to be off of school for a certain period of time, notify the parents early. Add a line to the surgical instructions you mail out that says, “Patient most likely can not return to school for x days.” You can modify it after surgery but since most people need to work, they need to know in advance.
-Think beyond the surgery with regards to what instructions would be helpful and check the box on the surgical instructions. For example, something simple like, “For non ambulatory patients, a hoyer lift must be used for lifting until incision is healed.” Some wording like that, would help give me a heads up with regards to transportation. Also, for patients like us, without a wheelchair van, do you have other transportation alternatives available to get the patient home? And where would I find that information? Could that information be included on the sheet?

I am relieved that Dear Son will have his surgery tomorrow and I realize that swapping out the device is not a big deal compared to other surgeries however without proper planning, the potential for a bad outsome is increased. Had I not discussed the saliva issues or medication issues, Dear Son could have choked on his saliva through use of the wrong medication or vomited his seizure medications. Either one of these scenarios could have had a fatal outcome on a relatively simple surgery. I expect things will go well tomorrow and look forward to better seizure control with his new device. And tomorrow, I’ll be right by his side, after all, we have that saying…"where you go, I go”. Hopefully, I’ll have made is easier for him.

Lovely Afternoon Tea~Tablescape Thursday

Some days, you need to take a few minutes, pour yourself a cup of tea and let the sun shine in. For an "Afternoon Tea", I am going to use one of my favorite teapots. I started collecting teapots in 2006 after going to a teapot show in Chicago. I was so enamored with them, that I thought I would start a collection. After all, every good home needs a collection of something.

This teapot is very special to me. I found it in the gift shop at Big Academic Medical Center in 2006. My Dear Son was hospitalized and on a ventilator with a MRSA pneumonia and nearly died. He was hospitalized for over three weeks and vented most of the time. He came home for a week and was re-admitted but I'll never forget it. I was very fortunate to have some wonderful people who saved my Dear Son's life and allowed me to see him grow up.

I always stay with my Dear Son when he is in the hospital or when he goes anywhere. He is on multiple medications several times a day and requires total care. When he was on the mend, I went into the gift shop and saw this lovely teapot. I purchased the teapot, cup, saucer and biscuit holder.

Here is a closer picture.

I decided to use this ornate mirror, that normally hangs in my foyer, as a beautiful tray. The detailing is not only feminine but pretty. The mirror reflects all of the light coming in through the window. Using the mirror as a tray is a great way to add a little drama to an ordinary day. It's also a wonderful way to make things more special, if you are having a guest over.

Another view of the tray and the linen monogrammed napkin.

Here is a close up of the tray.


The faux bearskin rug adds some luxury to the tablescape. You can see the biscuit holder next to the tray. Does anyone really store biscuits in there? I store my iPod accessories in there for my workouts.

I love the way the light filters in on the crystal lamp. I originally saw a crystal lamp in a magazine and cut out the page and put it in my home file. The one I saw was an antiqued brass and fluted crystal floor lamp with a solid crystal base; it was made by Decorative Crafts. When my sister died, I found this lamp in her apartment, hidden away. It was nearly identical to the one I had saved in my home file. The only difference was that it had a long, tall shade and the base was giltwood, not crystal. I have since replaced the shade and at some point will probably have a custom silk shade made for it. What a nice find and a nice memory of my sister. Also, if you look closely, you'll see some black and white fur behind the floor lamp~that's my cat lying in the sunshine.

A larger view of my living room.

In this last photo, you can see the botanical print on the wall; it is one of a pair. I purchased the teapot because it matched my prints. My two favorite things in the world are flowers and children. Nearly every print in my home is of flowers, with one exception, the print over my bed. I started collecting botanical prints many years ago for my birthday.

I hope you have enjoyed my "Afternoon Tea" tablescape. Perhaps you can join me next time. In the meantime, be sure to check out other lovely tablescapes here at Susan's blog, "Between Naps on the Porch".

Note: I work part time as a Home Stager and Professional Organizer. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful".

Metamorphosis Monday-Before and After

This will be my first entry in the Metamorphis Monday, hosted by Susan at, "Between Naps on the Porch". As you may or may not be aware, I am a Home Stager and Professional Organizer and run my own business. While regular readers of my blog have seen this makeover, I decided to rerun this when I saw Nate Berkus on Oprah today showing his makeovers for under $500. This is a "no cost" staging makeover I did last year for a client. Total cost was: $0! I did this room and some others in four hours. I used things that the client had purchased and had sitting around her home. I believe everyone has things they can use, they just need to see the things they own in a different way.


Here are some "before" pictures:

And now the "after" pictures!

I originally posted this last year when I did it and you can read the full story, "here". Hope you enjoyed this!

Medical Update

Dear Son had another seizure today before school. The seizure kept escalating and normally, I'll use the magnet on his wrist to activate his Vagus Nerve Stimulator* and that action will send a charge through the VNS typically stopping the seizure. Well, that didn't work today. The seizure started in his bedroom as I was getting him dressed for school. The seizure continued in the wheelchair, and then as we waited for the school bus. I thought at different times, it was lessening however I couldn't get the seizure stopped. We were waiting outside for the bus and when it started getting pretty bad, I went inside to grab my phone in case I needed to call 911. The nurse who rides his bus was there so I had her come inside and help me get him into his bed so I could give him some Diastat (a type of rectal valium used in emergencies to stop seizures).

As we got inside, the seizure was getting a lot worse. I was trying to use the hoyer lift to lift him out of the wheelchair to get him into his bed when I realized I was running out of time. I ordered the nurse to grab the Diastat from the drawer in his nightstand and I lifted his 182 pound body out of the wheelchair and onto the floor where I administered the Diastat. Things still weren't getting any better and I thought for certain I was going to have to dial 911. Things eventually improved and I called him off of school. By the time the seizure was stopped, and I had him back in his bed, it was over an hour later. Not a good way to start the day for either of us. It was a nerve wracking day.

A week or so ago he had a bad seizure so I called Ped Neuro Nurse to see if we had got the diagnostics back on his VNS. As you may recall, in early March, they took some diagnostics from his VNS to send to the manufacturer to see if the battery was getting low. The battery has a life of 7-11 years however Dear Son's settings are so high that they thought the battery might be getting low. She e-mailed the manufacturer and I learned that the battery only had 2-3 months left. Well, the diagnostics were taken on March 11th, so his VNS was coming near the end of it's battery life. I had been worried about the VNS stopping and was afraid Dear Son might die if this device wasn't working. I spoke with her again on Wednesday and she had started the insurance approval process. Once that was complete, they'd check with neurosurgery to see when we could get Dear Son scheduled.

Once I had that news, I had to call the school nurse to inform them that the battery may not work. As part of Dear Son's emergency plan, they are instructed to use the magnet three times within three minutes prior to calling 911. I told them that if it's not working, they may need to call 911 sooner. Well, in order to do that, I needed to speak to the head nurse to make sure that everyone was clear on that and to see if they needed a written letter from Ped Neuro Doc in order to do this. The head nurse said no, that she would inform all of the people who care for Dear Son, of the new instructions. Dear Son has a nurse who rides the school bus (She takes care of Dear Son and another medically fragile student.) and has a CNA/Medical Assisstant that cares for him in the classroom.

After today's seizure, we had to speed things up. The primary insurance doesn't require pre-certification while the secondary insurance does. I called them and we got most of the issues ironed out today. On Monday, we'll get a surgery date from Neurosurgery and then the approval should be done.

The VNS works really well for Dear Son. It was implanted (under his arm) in 2004 and took about a year or so before I really noticed the improvement in his seizures. Since that time, it works pretty well. When he has a seizure, I just hold the magnet over the device which is implanted under his armpit and it will activate it immediately. (The device is on 24/7 and sends charges regularly; in a seizure, holding the magnet will immediately activate it versus waiting until the next charge.) He still is on multiple seizure medications, in addition to the VNS, to control his seizures. As you may recall, Dear Son's seizures were caused by a mutation of the ARX gene. With that mutation, children are born without any gaba, a key inhibitory neurotransmitter. He also has a progressive neurological disease. He had been having more seizures over the past few months and in January, his device was increased to the "rapid cycling" to give him better seizure control.

I have been a little on edge lately, worried about him. He's been having more seizures, some small and some larger and I guess I worry the most about sudden death. I have read that some kids with seizures can die unexpectedly. I worry his device will stop working and then he'll have a seizure and die. I am not a worrier by nature, and try to stay calm, however knowing how much he needs this VNS and the fact that it's not working very well lately, has me concerned. I will feel a little bit better once the surgery is scheduled. At that time, they will most likely upgrade his device to a newer model, versus simply replacing the battery.

Note: *A Vagus Nerve Stimulator, or VNS, is a device used to control seizures. The device is implanted under the armpit. When activated, the device sends a charge/shock up to the vagus nerve and for some unknown reason, that disperses the seizures. There are many settings on the VNS, and the VNS runs 24/7. A magnet, typically worn on the patient's wrist, is used in an emergency to immediately active the device. A Vagus Nerve Stimulator is like a pacemaker for the brain.

Tablescape Thursday~Breakfast at Tiffany's~

The inspiration for this week's tablescape was the yellow tulips, courtesy of Trader Joe's. Originally, I had another set of blue dishes for this week's tablescape however when I sat the tulips on the apple green toile runner, I knew this was it. Let's take a look around and see what makes this tablescape perfect for breakfast.

The foundation for the table is a white tablecloth layered with an apple green toile runner.

The table runner adds color without being overdone. It works because the green in the runner is repeated in the green leaves of the tulips. I placed two of the place settings on the toile runner and the other two on the white tablecloth to add visual interest to the tablescape.

A side view of the table.

I love candles for eating, no matter what the time of day. It always makes the meal seem more relaxed and more enjoyable.

I used my white Spode fine bone china as the base and added a cream colored linen coaster. The linen coaster is embroidered and just beautiful. I thought it was a pretty monochromatic touch. My initial is not really "A" however when I found these at Home Goods, there were only a few initials left so I chose the prettiest one. I would love to have some made for my home. The crystal water goblets are, "Lenox Monroe" and the flatware is Lunt, "Hillsboro" pattern.

For this tablescape, I used my depression glass candle holders; the pattern name is, "Candlewick" by Imperial Glass. Technically, it's not really a depression glass per se however it is often grouped in that category and is referred to as such. I purchased these around ten years ago at Far Out in the Country Antique Fair, because I liked the pattern. I use them in my bathroom when I take a bath, always by candlelight. I never knew the pattern name until this weekend, when I visited an antique shop in my area. They actually have clear dinner plates and dishes in this pattern. I really like it.

Perhaps most interesting is how they photograph. The light from my chandelier catches the detailing on the base making it appear as if they light up. I love this photo.

I used white and cream for this tablescape. The tablecloth, china and taper candles are white and the linen napkins and votive candles are cream. The crystal water goblets have a gold rim around them which repeat the yellow from the tulips.

.

Another view of the linen napkins.

A view of the candle holders.

I hope you enjoyed this week's tablescape. Please make sure to visit other beautiful tablescape's at Susan's blog, "Between Naps on the Porch".

Note: I am a Professional Organizer and Home Stager. My business name is, "Dream Organizers" and my motto is, "Keep it simple. Get organized. Make it beautiful."