Discharged Today

Dear Son was discharged this afternoon from the hospital. The gastroenteritis ran it's course and he appears to be back to his normal self. He should be able to return to school tomorrow. The best part is that I finally got some answers and we were able to rule some things out.

His pediatric neurologist came in today and felt that the scopolamine patch contributed to Dear Son's vomiting issues due to it's effects on the central nervous system. He made some changes to the amount/volume of the formula Dear Son is getting and we'll see if Dear Son does a little better after that. If not, we may need to change the rate at which I feed him via the feeding pump. I felt much better after this since I wasn't comfortable attributing all of his issues to the gastroenteritis simply because both of the vomiting episodes that preceeded each hospitalization occurred immediately at the end of his feedings. I am glad he was able to figure this out.

Shortly thereafter, the nurse from the g-tube clinic came by and he confirmed that the Mini Button that was recently installed appeared to the be the right size and should not be causing any obstruction. (As I previously mentioned, Dear Son had obstruction issues related to a g-button several years ago.)

Upon returning home, I googled the scopolamine patch and found this article indicating decreased absorption of oral medications due to decreased gastric motility and decreased gastric empyting. Knowing this will make it easier to problem solve from this point forward. Should Dear Son continue to have issues with the volume of the formula he is getting, we can always switch from two cans of the current formula to one can of a higher calorie formula to reduce the volume in addition to decreasing the rate should that be needed.

Finally, I was glad that Dear Son didn't have a Nissen. If he did, he would have been even more uncomfortable due to the motility and decreased emptying since it would have made it more difficult for him to vomit.

Hopefully, he'll sleep well tonight and things can get back to normal. There was a high point to the hospitalization however. Last night, Dear Son was sleeping while I was reading a book. I glanced over from time to time watching him sleep when I looked over and saw him smiling in his sleep. It wasn't just a grin but a great big smile. It was beautiful to see and even more beautiful to know that he was happy. It must have been a pretty good dream because he was smiling for quite a while. The last time I saw him smiling in his sleep was when he was a baby. I can't begin to tell you how much I loved that moment.

Back to the Hospital

Over the weekend, Dear Son remained lethargic and continued to have watery, loose stools every one and a half to two hours. He was exhausted and was unable to get out of bed. On Sunday, his abdomen seemed rather hard after his feeding and I contacted the Pediatrician on call thinking that his abdomen did not seem normal to me. They told me it was probably fine and we agreed that I would call in the morning and come in. A few minutes later, he vomited his formula rather forcefully so I called the Pediatric Neurologist at Big Academic Medical Center and he said to bring him to the hospital. Dear Son would vomit another five times in the next hour.

They admitted him on Sunday and the Attending Doc (Peds not Peds Neuro)admitted they probably released him too soon. They treated him for dehydration and I was fortunate to catch it early. They stopped all feedings and he has been on IV fluids only. Today, we began adding some things back and are checking to make certain he does not have a stomach motility issue along with the virus (There are motility issues related to his genetic mutation.)The Attending mapped out a plan however there was a snafu with the nursing staff today so the plan did not go as written. (I had to work today so I was gone for a few hours and when I returned I noticed that things had not gone as directed.) I had hoped he would be released tomorrow but we'll see. A stool sample was obtained previously however the results are still pending. While it is doubtful that would change the direction of the care, it would be good to have the confirmation.

A few years back, he had issues with a too large feeding tube that blocked the stomach opening and recently he switched to a larger size, although it was still a low profile balloon. We are trying to get that reviewed so we can rule that out.

While most likely, it was simply gastroenteritis, we need to err on the side of caution. Because of the vomiting, I wanted to get some confirmation first that the volume or amount of the feeds he was getting was fine and secondly that the volume or rate that it goes in is not too fast. For example, was there a problem that there were too much fluid in the stomach because it was pumping or going in too fast or was it a motility issue of the stomach not emptying or finally was there any kind of obstruction. I mentioned those to the Attending based on Dear Son's history and she agreed that we needed to rule some things out.

I will attempt to keep you posted although it is very difficult since I have very limited internet access and the access I have is rather clumsy at best. I am hoping there aren't a lot of errors in this post since I am only able to get a partial view of the screen and can't see the entire text.

Hospitalization and Botox Update

Dear Son was released from the hospital yesterday for treatment of gastroenteritis. He came home from school on Tuesday and seemed fine and was actually quite happy. He had a late supper (via the g tube). He was half way through his dinner when I had left his bedroom for ten minutes. When I returned I had noticed some white foam around his mouth and thought he might have had a seizure. I turned on the light to investigate when I noticed he had vomited severely (through his mouth and nose) and was lying in vomit and an enormous volume of liquid stool (the amount is beyond words). I became quite alarmed at the sheer volume of the situation since I had never seen anything quite like it. I paged the doctor immediately thinking something terrible had happened. While waiting for the return call, I cleaned everything up. (This was a feat in itself since I couldn't lift him off the bed without the hoyer lift. This meant, I had to figure out a way to do the entire bed change, clean up and new sheets without lifting him out of the bed.) It took a half hour. I was concerned he may have aspirated since he was on his back when I came into the room and I had left him propped on his side. When Dear Son vomits, he tries to problem solve by rolling on his back which is dangerous.

No sooner than I had it cleaned up, he began to vomit more severely and I called 911. We went to local hospital and then transferred to Big Academic Medical Center. The concern was aspiration and dehydration. I was up the entire night on Tuesday and it didn't feel very good. Fortunately, a fever never developed so he was taken off IV fluids and we were able to come home last night. They assured me it would not get any worse.

Since we got home, he has continued to lose a lot of water via his bowel so my main concern right now is dehydration. I am giving him more fluids than normal. He seems a bit warm so I am watching for any fever.

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Botox Follow Up

For some time now, Dear Son had been experiencing severe night time choking. In January, we tried botox injections for him however the result was short lived. It lasted around three weeks and the effects tapered off over time. Typically, they'll try the botox injections every four months if they work. Since the effect did not last until the next injection time, the ENT nixed a second attempt. Our next step would have been removal of the saliva glands and if that didn't work, a trach might be necessary. I really didn't want that to occur.

I spoke with Dear Son's Pediatric Neurologist regarding the issue and he suggested we try a scopolamine patch. Dear Son has been using it since April 1st or so and the results have been downright amazing. The patch worked right away and stopped nearly all nighttime choking. Prior to the patch, Dear Son might spend the entire night choking so severely that he didn't get much sleep. The patch reduced 99% of his nighttime choking and he's been sleeping very soundly ever since. He sleeps so soundly and quietly now, that it took me a few days once he got the patch because I didn't hear him breathe at all. It's been a few weeks and now that he is getting some really good sleep, he seems much happier and more like his old self. He came home from school on Tuesday and gave me a ton of kisses while sitting in the rocker. (He leans his head over towards mine for me to give him a kiss or if I put my hand near his mouth, he licks it, that's how he kisses.) I can't get over the dramatic transformation.

Interestingly enough, the insurance company had initially refused approval of the botox and had recommended scopolamine. The pediatric ENT had some conversations with the insurance company and explained to them that scopolamine is an adult prescription and not recommended for children. He explained that Robinal was the pediatric equivalent of scopolamine. We had tried Robinal however it did not work for Dear Son at all; the fact that the scoplomine patch working is fantastic! We are lucky to have such a good pediatric neurologist. In addition, since Dear Son is sleeping well, I am finally getting some sleep.

Removing the Wig

If you are a Good Morning America viewer, you saw Robin Roberts announce her decision today to remove her wig and appear on the air with her nearly bald head. Robin has been battling breast cancer for a few months now and detailed her struggle on GMA. As part of that reveal, she chronicled her decision to shave her head when her hair fell out, then appeared in a fashion show in February without her wig and finally appeared today with her own hair, now that it has started to grow back. In doing so, she made a comment somewhat to the effect that her hair represented the life she was holding on to and not where she was now. The statement was in many ways profound.

One of the most challenging aspects of caring for Dear Son, at least for me, was giving up my career, many years ago to care for Dear Son. Over the years, it was a struggle. It was not enough to manage his declining health or his loss of milestones, but without a career, there was never really enough money left to do much of anything so along with the career went any kind of goals. Because I loved what I did, I found giving up that life to be very difficult. It was hard not really fitting in anywhere and working menial jobs so I could care for him. The boredom level was extremely high and I felt punished somewhat, that because we don’t have daycare in this country for the disabled, that I was forced to live this life.

Earlier this year, I had the opportunity to attend a black tie event for the Respite House. It was a lot of fun planning for the event and getting dressed. Earlier that day, I was busy caring for Dear Son and happened to change a record number of diapers. I remember thinking about how nice it was to have a corporate type event to look forward to that evening and to be able to get dressed up and go out. At the dinner that evening, I remember the food and how good it tasted. It reminded me of the many corporate dinners I attended. Part of my job was to entertain clients so it happened fairly regularly that I would take them to dinner and an event, so eating out was a pretty normal part of my job. I’d travel to different cities and always managed to get in some personal time each time I went out of town. In addition to the client travel, we’d have our department meetings in some fun locations. As the evening went on, I met a lot of wonderful people. It was a really fun night and during that time, I would slip back into the Corporate world that I left behind, if just for a few minutes. Ironically, as soon as I’d remember back to a corporate event, I’d shift my mind back to Dear Son, as if the two could never really co-exist in the same evening, let alone the same event. During the fundraiser, they showed a clip of the Respite House that involved many of the nursing staff caring for the children. It was many of the same duties I did at home. It felt odd to be sitting at the fundraising table, when I was really a caregiver, as if my dirty little secret would be revealed anytime soon.

Make no mistake, I love Dear Son deeply. I’d never trade what I do for anything or anyone. But that didn’t mean that a part of me wouldn’t like to go back, to a time when I had a job that I loved and made a real income. In my dreams, I would often wish for a time when I could work full time and that’s part of the reason you will always hear me stressing the importance of daycare.

But something happened over these last few weeks. It was a bit of minor thing but it was huge for me. It started with the botox. As you are aware, one of Dear Son’s biggest issues was his lack of saliva control due to his deterioration. He’d choke on his salvia night after night and I was afraid he would aspirate and get pneumonia or worse yet, choke to death. The botox was great however it peaked at around the three week mark and then choking began to return. At that point, I had a conversation with the ENT over the phone about possible next steps. The next steps had included removal of the saliva glands, along with a Nissen and if that didn’t work, then we’d have to consider a trach.

I thought of the trach and was not very excited. I am rather squeamish and have a very weak stomach so the trach bothered me on many levels, one of which was how Dear Son would ever manage that and secondly, how I would ever be able to care for that myself. It would be very selfish if I had to deny Dear Son care he needed based on the fact that I had a weak stomach. On the flip side, the thought of caring for that would be very stressful. I began to have some conversations with a nursing friend of mine with regards to what a trach entailed and how it might work for Dear Son. She’s a pediatric nurse and cared for many Special Needs children, and many with trachs. I worried a lot about Dear Son being able to have a trach at all since he can’t hold his head up very well. I learned there were different types and there were things that we could maybe do to help him with this. Even though a trach might be far off, it’s always better for me to have some time to think these things through, as I don’t care much for surprises.

Once I understood how they worked a little better, came the larger decision…how would I ever tell Dear Son? Although we weren’t at the point where a decision for trach would need to be made, I began thinking about how this might play out. Typically, whenever I make a change for Dear Son, or the doctor makes a change, I tell Dear Son about it. I tell him what it going to happen, why it’s going to happen and I try to be pretty honest about it. I look him in the eye and always tell him that I wanted to let him know before it happens. I usually do this when he’s ready for bed and when we have a little quiet time or when he’s ready for a nap. I try to tell him a day or two before when it will happen since if it’s too far out I don’t want him to worry. I also make certain to include just the information that he needs and not elaborate on it too much. More often than not, he’ll lick my hand, which is his way of giving me a kiss. It means, “Thanks for telling me, Mom.”

But as I imagined the scenario in my head, I couldn’t imagine ever telling Dear Son that we were going to have to cut a whole in his throat. I could only imagine how that would break his spirit. Here is a young man who has been through a lot in his life. He has a body that didn’t work very well and a body that he spent years on in therapy trying to get it work somewhat like a normal person. To make matters worse, he ended up losing the very skills that took years to attain. And now, I was going to tear a whole in his throat. In addition, this would only present more issues for him, the panic of whether or not someone would or could help him if I wasn’t around and a whole host of different scenarios. I couldn’t imagine that.

On top of that, was how it would affect another hospitalization? What happened if he got another pneumonia? What exactly am I doing? Am I extending a life out of selfish purposes or am I really doing things to help him when he’s sick? At what point is too much or at what point is enough?

After serious consideration, I decided that I would not do a trach. I made the decision that whatever happened, it was not going to happen for Dear Son. All other factors aside, I couldn’t imagine having that conversation with Dear Son. And that was it.

After I made that decision, I was rather proud of myself. For the first time in a long time, I was able to be proactive about a decision that would potentially save or extend his life. And I felt good about it. For so long, all of the decisions were always about extending his life or doing whatever I needed to do to make him well or to make things easier for him. I don’t regret any of them. It was always very comfortable for me. They were always the right decision at the right time. But this one was huge. For the first time, I made a decision based on where we were right now, not where I’d want him to be or rather, to extend his life at any costs. I made the decision from a position of strength. By making the decision now and thinking about it far in advance, I could really explore all of the options. I didn’t feel I was taking anything away from him by not choosing to do it but rather I was giving something to him. I was allowing him to keep his spirit. I was allowing him to keep his body in tact. I was allowing him to be him, no matter what happened. And whatever happens, it will be o.k. I will love him no matter what works or doesn’t work anymore.

So today, when Robin Roberts said she was making a decision based on where she was now and not holding onto the life she had, I had to agree. For the first time, I made a decision on where we were now, not trying to hold onto the life he had, or we had, at any cost. And that felt really good. Sometimes, we have to let go to move forward. And sometimes, we have to be pushed. This time, I did it all by myself.

The Memory Keeper's Daughter

I remember distinctly the relief after my prenatal testing when I found out the baby would be “normal.” No more worrying. I don’t know what I would have done if I found out the baby wasn’t going to be normal. I mean, it’s not like I wouldn’t have the baby, it’s just that it would have been a different experience, maybe taken the fun out of the pregnancy. Back then, in 1991, having a baby with any kind of retardation seemed like a pretty big deal. It was like the “worst case scenario” of the pregnancy world. Since that time, I’ve seen some real “worse case scenarios” but back then, that seemed about as bad as it could get.

Of course, my Dear Son wasn’t normal. He wasn’t normal on day one or any day after that. He had breathing difficulties and turned blue within the first twenty four hours. He had “suspected seizures” on the first day and the journey began.

The first few years were a bit of a blur. It was a lot to learn the whole “system” of healthcare. I remember going into a school in one of the early years, when he was in elementary school. They were getting ready to transition him to the regular school system and I had asked to see several classrooms/schools so I could better understand the placements being considered. I asked to see two of the schools they were considering that had children “below” Dear Son’s level and two schools “above” his level. (When I say “schools” they were actually different classrooms although all of them were also located in different schools.)

One in particular was quite scary. It had a lot of retarded or severely delayed children there. It was past capacity and the day I visited seemed very short staffed. I remember walking in there and thinking it was like a pediatric version of “One Flew Over the Cuckoo’s Nest.” I was totally scared. There were kids running around, one was standing on his head, and it was total chaos. There were about forty to fifty kids in the room. One little girl came up and grabbed my hand and held it. I wanted nothing to do with this group, but I couldn’t not hold her hand. All I could think about was getting out of there fast. Looking back, I think there were many children with behavioral issues in addition to their mental disabilities. There were some with physical disabilities as well but I knew it was not the place for Dear Son.

Over the years, I became more comfortable being Dear Son’s mother. Make no mistake, I always loved Dear Son, I had never been around anyone disabled so I didn’t know what to do. I wanted to be a good mother but it takes a while to learn how to do basic things. Prior to having Dear Son, I never had any desire to work with Special Needs children or adults. I am not sure that I still do, however I am no longer afraid of them.

Fast forward to last year when Dear Son was at the Respite House. On our last day there, there were three mentally and physically disabled children receiving therapy in the main room. As I looked at each child, I saw how beautiful they were. I saw that first. I looked at them and for the life of me, I thought they were perfect. Although they had issues, none of that mattered anymore. I thought about that a bit and realized it took me sixteen years to get to that point. Maybe I was there sooner, who knows. But I can certainly thank Dear Son for changing all of that.

So it was really interesting to watch Lifetime’s, “The Memory Keeper’s Daughter.” It reminded me of the time, when Dear Son was born, and having a child with Down Syndrome or a disability was something no one wanted. I mean, why else are we testing for that?

As I watched the movie open, I saw the baby and thought of how beautiful she was. I remember the baby looking the nurse in the eyes when she was going to drop her off at the home. As the movie progressed and they visited the “home” it was upsetting to me to think that disabled children were given away or are still “put away” in a home. In fact, it’s still a pressure today, to think about “putting them in a home”, something I never want to do with Dear Son. The movie hit home with me and was very difficult to watch because now after having a baby with disabilities, I can not for minute, imagine life without Dear Son. During the commercial, I went into his room, to check on him and whispered, “I love you” to him.

All of this made me think about how different it is today. The internet has changed a lot of things. All of the bloggers with special needs children, especially the younger ones, don’t realize how lucky they are to have the internet. Back when Dear Son was born, there was nothing. It was much more isolated back then to have a child with disabilities. It’s not like you could “google” anything when you had an issue.

But more than that, is how time is changing. Recently, my niece and I began having more e-mail conversations surrounding pregnancy, now that she is pregnant with her first child. She is a beautiful young woman and it’s really wonderful to see how excited she is about this baby. I think she has taken a picture of her pregnant belly nearly ever day so far, or so it seems. In every picture, her face is absolutely glowing with excitement. She is smiling ear to ear and is so happy. A few weeks ago she told me she was expecting a girl. In addition, she decided to name her Gwen. She began referring to Gwen in all of the e-mails. I thought that took a bit of the fun out of things and that I always liked it a bit more when people didn’t announce the sex of the baby until it was born. I didn’t say anything though.

As the weeks passed, we continued to write. I opened one e-mail recently and she mentioned that she was no longer going to have any more tests done on the baby. She said it really didn’t matter anymore because if she found out she was having a baby with disabilities, it wouldn’t change anything. She was already in love with Gwen and nothing would change that so she figured she would just enjoy the remainder of the pregnancy. I should also mention to you that her husband has MS. And then she said something quite interesting:

“You know, I think by naming her already, it has made her a "real person" to us. Everything is Gwen this and Gwen that :) I think we have bonded with her that much more just by naming her. She's no longer "the baby" or "it," she's our little Gwenyth Faye :) That's why when the counselor was telling me about all sorts of other tests we could have done, I decided against all of them. I had the initial screening and the 20 week screening done, and everything looked fine. I have no interest in testing my blood to see if I am carrier for cystic fibrosis. I'm not the type of person to say, oh you know what, this baby isn't going to come out perfect so let's scratch this one and try again. I truly believe that God doesn't give us more than we can handle. I like to look at obstacles like opportunities.”

She went on to talk about the changes her husband made when he was diagnosed with MS and how those were positive for them. Then she wrote,

“I know at times, more often than not, it might get overwhelming caring for Dear Son, but you're so good with him and you love him so much. I have never seen you get frustrated or yell at him, not once. I'm sure you may feel frustrated at times, but it's so nice to see how you take such great care of him. You have never once acted like Dear Son is a burden on your life. I love that you are so passionate with all that you do for Dear Son. I think it is remarkable.”

As I thought back over the years, I thought that we are finally beginning to change the way people think about people with disabilities. Maybe they are no longer “challenges” but “opportunities.” Or maybe, they are just who they are meant to be, “beautiful babies.” Thank you Dear Son for showing me the way.

Designed to Sell

In July of last year, I started a business as a Professional Organizer. Recently, I completed my first “home staging” job and thought you might like to see the results.

Home Staging is a relatively new area in real estate. Home Staging involves decluttering, de-personalizing and organizing your home to show off it’s best features while eliminating the negatives. More often than not, this involves doing much needed repairs along with painting and cleaning. Most people don’t know where to start and that’s where a home stager comes in. Examples of a home stager might be: an Interior Designer, a Professional Organizer or a Real Estate Professional.

Recently, I was called to this home to assist the seller. The seller was recently divorced and the husband had removed most of the furniture and left the home with many needed repairs. She had a few real estate professionals who advised her to sell the home “as is”. I had met this client to help her organize her home office and I mentioned that this home could be fixed up and that she could get a lot more money. I’ve always had the ability to take the worst room or house and see it’s “potential”. In this case, I think it turned out quite nice.


Let the Staging Begin

For this client, I helped her declutter, organize, created a space plan for the furniture, and selected a color palette for each room. We agreed on a budget and I shopped for each room. In addition, I organized all of the kitchen cabinets and placed labels on every one as an added feature for a buyer. No more moving in and not knowing where to put anything!



The Kitchen



"Before" Pictures

"After" Pictures

These are the "after" pictures of the kitchen. The baseboards and moldings have been repaired and painted white. The floor has been updated. I made custom valences and drapes to go over the window and patio doors. I found a striped tablecloth at Target that tied in the kitchen and living room colors so I decided to use it and make the drapes and valences. I don't sew so I managed to make them all by using the finished edges of the tablecloths and then used an iron on mending tape. I measured precisely and then matched the stripes so the "repeat" was correct, much like you would do if you were hanging wallpaper. I made both window treatments, napkins and the kitchen towel that is hanging on the stove. I stayed within the household budget by doing all of the window treatments, curtain rods, rings, wood for the valences and "L" brackets for $65. You can see part of the window treatments below. I had to close the patio door drapes in order to take the pictures since the outside light was so bright. I added a matching cotton rug and fresh tulips to complete the staging. In the plant window, (I don't have an "after" picture of that.) I purchased some white pots from IKEA and planted an herb in each pot. I thought perhaps a buyer who likes to cook, might want to have their herbs in the kitchen and cook with them. I know I'd like that since I love to cook with fresh herbs.

The Living Room

This is the "before" picture of the living room. The client preferred to keep the bright yellow color on the walls instead of neutralizing it. I worked the color palette around this and chose white, yellow and brown as the colors with aluminum as the metal element. The walls and roses are yellow, the baseboards, drapes, vases and candles are white and the sofa, curly willow and decorative accents are brown. The client had the armoire in the basement and the desk in the foyer she was going to toss. It was painted a dark green. Instead, the desk was repainted and I built the wood elements of the room around the color of the armoire. I added a coffee table, baskets and side table from IKEA, along with white vases and candles. I added metallic table lamps with modern white drum shades. I chose aluminum elements in the curtain rods and floor lamp. Drapes were from Pottery Barn. I made the rose floral display in the foyer.

The Lower Bath

Here is a "before" and "after" picture of the lower bathroom. The bathroom was decluttered, organized and then "staged." I used accessories the client had in her home, just used them in new ways. The vanity was painted white and the handles on the cabinets were updated to a polished chrome.

An Upstairs Bath

I didn't have a "before" picture of this bathroom however here is one of the upper bathrooms "after" staging. All that was done, was painting the walls white, using a new set of towels the clients purchased and then adding some fresh tulips and a candle to make it nice. I chose the tulips because the green in the leaves matched the green stripes on the towels.