Thursday, May 28, 2009

Grand Rounds

I'm part of the Family Advisory Board at Maimonides Medical Center. The board is aimed at promoting family centered care, improving the quality of health care for children and families, help develop programs and policies, and to help plan and design new spaces. As part of the board we were asked to present at grand rounds for hospital staff (residents, fellows, doctors, nurses, etc...). This particular presentation is to help these medical professionals better serve their patients and families and give as much of an understanding as we can to what our everyday life consists of. So here is what my presentation looks like. I also made a video and if I can download it I will, I'm having computer issues these days...

Grand Rounds

A Day in the Life of Samuel Leshin

It's very difficult to raise a child with physical disabilities, it's just as difficult to raise a child with severe medical issues, but to raise a child with both is a downright living hell. When you get pregnant and are expecting one of the most wonderful experiences of your life to come upon you, one may think and fantasize will my child be a doctor, a lawyer, the president of the United States. One never thinks will my child walk, talk, eat by mouth.

My name is Carrie Leshin. I am a speech-language pathologist that specializes in feeding and swallowing disorders. I worked at Beth Israel Medical Center in NYC for almost 4 years. There I had extensive experience working with dysphagia of all kinds. Never in my life would I have thought that I would have a child who was born without the ability to swallow.

Towards the very end of my pregnancy I was diagnosed with severe polyhydromnios. When I received this diagnosis I was petrified that the cause was possibly neurological. I prayed for my baby to have a cleft palate, TE fistula, an esophageal atresia… anything but a neurological issue. As soon as my son was born and was put on my chest I knew something was wrong. I asked the doctors while they examined him if there was anything that was wrong. The only thing they noticed and this included the pediatrician and neo-natologist was that Sam's neck was a little floppy and that his left arm did not move as vigorously as his right. Once they put Sam on my chest I noticed immediately how wet and gurgly his vocal quality was as well as his raspy cry. The next thing I noticed was that only the right side of his face moved when he cried and that when I tried to produce a root reflex on both the left and right side of his face I got nothing. I kept saying to all of the doctors and nurses that Sam was not swallowing and part of his face isn't moving. The thing that scared me the most was the wetness of his vocal quality. I kept thinking that he sounded as if he was drowning on his own secretions. When I said this to the doctors and nurses in the recovery room they didn't believe me and told me I was just being paranoid and post partum. Ok let's take a step back for a second and put the logical facts on the table:
1. Mom history of severe polyhydromnios greater than 97%.
2. Baby born with floppy neck, wet gurgly vocal quality, raspy cry, left sided facial paralysis, weakness on the left side of the body and no rooting reflex.
3. Mom SLP with extensive hospital experience in both pediatric and adult dysphagia is absolutely sure that this child is not swallowing.

Now I am being told that I am crazy, but I think this just screams incompetence don't you. Needless to say they sent Sam with me into the maternity unit. Sam was born at 11am and he was not taken to the NICU until 5pm. The only reason why they took him was because I kept insisting that they do and it wasn't until I cursed the pediatrician off and threatened to sue the hospital if my son ended up with an aspiration pneumonia that he was then taken to the NICU. Once in the NICU I was told to leave so that they can evaluate my baby. I told them no and I wanted to know what they were going to do. They wanted to try and feed him. I said absolutely not he will drown he cannot swallow. They did it anyway and that night Sam developed aspiration pneumonia and ended up on C-pap along with all of the other terrible interventions that needed to take place. So in addition to the initial shock of having every single solitary hope and dream fall apart in front of my face, being post partum, healing from a vaginal delivery, I now have to deal with a hospital staff that is totally incompetent.

While at St. Lukes Roosevelt we had no idea what was going on. I was in shock, I was depressed, I was confused and worst of all no one else in the hospital knew what to do or tell me. There was no plan. Finally, approximately 10 days later it was determined that my son needed a gastronomy tube with a nissen fundoplication. Being an SLP and not having all of the facts of what was going on with Sam in terms of a diagnosis I was really against the fundo. I knew he needed a g-tube but I was really scared about the fundo. The NICU docs scheduled Sam for a fundo with their house surgeon for the following morning. The reason why they wanted to do this so quickly was because the surgeon was going away on vacation and he wouldn't be back for 2 weeks. So of course before my husband or I could make any decision we wanted to talk to the surgeon about the surgery and what this meant when we went home etc… The surgeon refused to speak to us until an hour before the surgery was scheduled which was 6:30 am the following morning. At this point I said adios, you will not touch my child we're going to Columbia.

Two days later we were transferred to Morgan Stanley Children's Hospital. There we basically had a million dollar work-up done on Sam which included MRIs, genetic studies, metabolic work-ups etc… It was here that it was concluded that Sam must have stroked in utero but of course not without drama. I can remember like it was yesterday being called into a conference room with a team of doctors, fellows and residents to discuss the findings on the MRI. It was me and my dad and all of these medical professionals getting ready to talk to me about the fate of my child. In short the neurologist said that Sam had bilateral lesions along his brainstem which may be indicative of Leigh's disease. Leigh's disease is a terrible regressive mitochondrial disorder where the prognosis is death by age 3. I was mortified, sick, and suicidal. My entire life ended in that room and all the while these residents and fellows sat there staring at me while they drank their coffee and ate their snacks.

Thankfully that diagnosis was wrong and now we were faced with the now what phase. Since no one really knew of a prognosis we all decided that it would be best to give Sam a g-j tube versus a g-tube with nissen fundoplication. The Columbia surgeons refused to do this so we had to transfer Sam yet again to another NICU and this time we went to NYU. Shortly after Sam's surgery was finished we were able to take him home with 12 hour nighttime nurse duty. We were home for about 10 hours and then back in the hospital but this time taken to Maimonides. Looking back I realize that I was not ready to take Sam home. I was not properly trained nor informed on all of the trials and tribulations of g-j tube feedings. In addition the nurse that they sent us was completely incompetent and knew nothing.

Thankfully at Maimonides the ER doctor was smart enough to admit Sam to the PICU in order for me to be better prepared to take him home. Unfortunately he contracted RSV while there and we were in the hospital for another 10 days.

Now almost 3 years later we still have to bare the heartache and reality of what all of the previous information actually means to our everyday life.

Sam now gets almost 24 hour nursing and approximately 25 hours of therapy a week through early intervention. He has to endure daily medical treatments in order for him to stay healthy. This is what one day in our house looks like on a good day.

Daily Schedule
5:00 am - prevacid
5:30 am- 1st feeding of similac 160 mls/ ½ hr.
6:15 - Sam wakes up
6:30 - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• Pulmocort
• The vest for 20 minutes
• Cough assist
7:00- 7:30am - Occupational Therapy
7:45 - 2nd feeding
7:30 - 8:30am - Special Instruction
9ish am - Nap (usually lasts 45 min)
10:00 am - 3rd feeding
12:15 pm - 4th feeding
12:00 - 1:00 pm - Speech therapy
2:00 - 3:00pm - Physical therapy
3:00 pm - 5th feeding
5:15 pm - 6th feeding
6 pm - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• Pulmocort
• The vest for 20 minutes
• Cough assist
7:00 pm - Bath
7:00 pm - Prevacid
7:30pm - 7th feeding
8:00 pm ish - Bedtime

This is a normal day in our home. It is very rare that the day goes this smoothly as I am at the mercy of several different doctor's appointments every month, nursing call-outs/ cancellations, therapy cancellations and changes, schedule changes to feedings because of illness or tolerance issues or because the therapists come late or re-schedule, insurance mess ups, surgeries and all of the other emergencies that can pop up at any moment on any given day. I have been to the ER with Sam 3 times already this year. Every single solitary day I wake up to having to run a marathon. Every single solitary day I wake up with a pit in my stomach, a constant stabbing, at the amount of stuff we have to do to just give my son the best possible chance that life has to offer him. I love my son very much, but if I knew that this would be my life before I chose to have kids I would not have done it. I wouldn’t wish this existence on anyone and my experience is cake compared to some of the other stories you are going to hear today.

Scott wrote this part...
Movie stars and athletes constantly tell their fans that they are not role models, but they are and if they don't like the pressure that comes with it than they should reconsider. This is analogous to you who are not only medical doctors but psychologists. When helping a child with severe disabilities you are not only helping the child but also helping the parents deal with the overwhelming feeling of loss and helplessness that comes along with raising that child. So when you write a script and send the family on their way, look that mother or father in the eye and ask if there is anything else you can do, any questions you can answer and any glimmer of hope you can provide.

Monday, May 11, 2009

The Best Mother's Day Ever!!!

Mother's Day for me during the past 3 years has been for the most part sad and filled with anxiety, like most holidays really. Its been a time for me to reflect on what I always dreamed motherhood would be for me and then to accept the reality of what it really is. Sam has been doing great and because of this I am able to truly focus on all of the accomplishments that we as a family have made. I have been more thankful than not lately and just so grateful that I have such an amazing husband who is so supportive in every single way.

This Mother's Day Scott let me sleep in and brought me coffee and a blueberry Dunkin Doughnuts muffin in bed. It was heavenly. Then Scott packed up Sam and a picnic and we went to Prospect Park. It was absolutely beautiful! The weather was perfect and Sam was amazing and happy. It was honestly the best Mother's Day ever! Thanks so much Scott you are AWESOME!!!

Can you believe this is Brooklyn???

Sunday, May 10, 2009

Happy Mother's Day….

Scott's Pen

I was thinking about whether or not to write this as if I am Sam or just to simply write this as the husband of a woman who is truly the best mom in the world. I know everyone has a mug or teeshirt proclaiming themselves as the best but let’s put it all to rest…Carrie is the best.

Over the past three years Carrie has been and will continue to be in the near future, tested as a mom like no one else I know (there are a few exceptions). She has met every challenge head-on with determination to see her son get the very best life has to offer. She tirelessly pursues every avenue whether medical, therapeutic or just simply being there when exhaustion has overcome everyone else. Sam is very lucky to have my beautiful wife as his mother. All of the gains that he has made and the visits to the ER he is now starting to avoid with greater frequency are a direct result of Carrie.

I know Carrie has written in the past examples of her day and my Son's challenges so I will not re-write them here. I just want to say thank you from both myself and Sam for staying strong, keeping up with the demands of raising a child with special needs and most importantly showing Sam a love that never waivers, never tires and continues to grow with each day.

We love you,
Sam and Scott

Saturday, May 9, 2009

Over and Done!

After about a 2 month delay Sam finally had his ear tubes replaced, his adenoids removed and his strabismus corrected. Of course this was not without some sort of drama as minor as it may have been...

Sam's surgery was scheduled at NY Eye and Ear. They have a beautiful pediatric out patient surgical facility that was for the most part very organized, clean, comfortable, and the nurses and nursing aids were just amazing. So we get there at 6:15 am to check in for Sam's procedures that should have been for 7:30am. Now during the preliminary pre-op stuff that comes along with any procedure weeks before the actual D-day I specifically asked if I needed to talk to the anesthesiologists prior to coming in for the procedure. I was told no and that all Sam needed was clearance from his pulmonologist and we were ready to go.

So about 20 minutes before Sam had to go down for surgery the anesthesiologist came in to talk to me and as I giving Sam's history I could see his face starting to turn from a friendly pre-op consult type of smile to a holy shit lady there is no way in hell I am intubating your kid. By this point in the day Sam had already been hysterical as the boy knew the second we walked into the hospital this was not going to be a good day for him. Sam was scared to death and crying non-stop since we got there. So of course this leads to him sound even juicier than normal and when the anesthesiologist listened to him he was obviously really alarmed. I told the doctor that Sam is really fine and has never had a problem being extubated. If anything he may need a nebulizer treatment but other than that he can hold his own on room air pretty quickly after they pull the tubes out. Anyway the doctor was still really uncomfortable which made Sam's ENT really uncomfortable... PS they wanted to post-pone the surgery to do it at NYU instead of NY Eye and Ear. Of course Scott immediately lost his shit and his first words were "Who do I have to harass at NYU to get this done today?" By this time the opthomologist had left to get changed and go back to his office up town and a few minutes later the chief of anesthesia came in looked at Sam spoke to me for 2 seconds and said this was not going to be a problem at all let's continue. SO of course Scott goes flying out of the room to get the opthamologist (it literally took 2 months to coordinate this surgery and I do not have another 2 months to get this done).

In the end everything worked out great. The entire procedure with both doctors took a total of 45 minutes from start to finish. Sam did not need nebulizer treatments after.. YAY! He was pretty uncomfortable for the rest of the day but this morning he woke up perfect... smiling, happy, playful, etc... I could not be more grateful that all is well and Sam is doing FANTASTIC!!! His eye looks kind of red but its not as bad as I thought it would be and he is breathing so much better because of the adenoids and he is responding so much better to speech because his ears are perfectly clear!!!

Wednesday, May 6, 2009

What's New in Leshin Land

The Spring season has been a very busy one for us to say the least. Fortunately we have many wonderful things to look forward to and with that of course comes all of the responsibilities, organizing and planning it takes to get to all of those wonderful things that are coming in the next few months.

For starters Sam has surgery this Friday. He is getting his ear tubes replaced and his strabismus corrected. This involves two separate procedures in which Sam will have to be under general anesthesia and intubated. Though both procedures are small the whole intubation process scares me to death. As I've explained before Sam's lungs do not work the same way typical developers do so intubation is a serious thing.

In the meantime... We are preparing for our next bundle of joy to arrive sometime in June, we are building a house, moving in August, trying to get Sam evaluated and into school for September, trying to transfer nurse service, medicaid service in addition to our insurance coverage, medical equipment service, find Sam great therapy for after school, find new doctors, figuring out employment for myself, and I am sure there are about 100 other things I am just not thinking of at the moment. I have to say though I am so lucky I have the best partner in the world. And... we have a lot of support from family and friends so as stressful as this time may sound we have it for the most part under control because of all of the wonderful people we have helping us.

Here's a picture of Sam doing therapy with his SLP. That contraption around his neck is something our fabulous SLP devised to give Sam head and neck support so he can swallow more efficiently during therapy.