Autism + Sinai Hospital =

UPDATE... Since writing this post I have spoken at length with the Director of Guest Relations at Sinai Hospital in response to my letter and blog post. During the course of the grievance process the Director received letters from both Dr. Williams and Ms. D'Souza in response to mine. Dr. Williams and Ms. D'Souza and I have very different opinions of the interaction we had on July 22nd.

I also want to say that since writing this post I have spoken to a handful of friends who have children who are or were patients of Dr. Williams and one time or another and had nothing but positive memories of their interactions with her and her staff.

The memory I have of our interaction cannot be erased and replaced with a more positive interaction. The lesson I have learned from this situation is I must be further empowered to speak my mind at the moment I feel myself or my child are being disrespected and not let days pass before making my opinion known.

Lesson learned.

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On Wednesday morning I was alarmed when I noticed a large red and painful knot just under the skin on Noah's abdomen when I changed his diaper. I called Dr. Stein's office and the nurse told me I should take him to see Dr. Holly L. Williams, the Chief of Pediatric Surgery at Sinai Hospital, that day. The sooner the better. After all, a child with a history of constipation and bowel obstructions is at increased risk for an inguinal hernia.

Dr. Williams was not at her office at the time of our appointment due to being delayed in surgery. In her place we saw her nurse practitioner, Precilla D'Souza, who examined Noah and quickly noticed he did not have a hernia but very red and inflamed lymph nodes which she said were most likely caused by an infection raging somewhere in his body. I then showed her the large abscess located on Noah's bottom. She immediately noted that the abscess was obviously the cause of the inflamed lymph nodes and was most likely another staph infection that may have entered his blood stream which can be very dangerous for anyone, especially children.

Noah and I stayed in the office while Ms. D'Souza went to speak with Dr. Williams in surgery. She returned twenty minutes later and told me they felt it would be best to admit Noah to the pediatric unit to begin immediate IV antibiotics and then perform a surgical procedure to open up the abscess, drain and clean out the infection. I wholeheartedly agreed given this was the second round of staph in only a month and this strain seemed much more aggressive and serious.

We then made the trek to the pediatric emergency room where I was told Noah would begin his first round of IV antibiotics while we waited for the bed upstairs on the pediatric wing. We waited for about an hour when an intern came to ask me quesitions. I was attempting to explain Noah's medical situation while also keeping an eye on him as he was getting increasingly restless and was hungry and requesting food every thirty seconds. However, I had been instructed not to give him anything to eat and so that was causing him more anxiety which in turn made him want to run around in circles and push himself on his back across the floor. Apparently this behavior was all a bit much for the intern because she attempted to move us to a different room but this only exacerbated Noah's behavior.

This is when it started to get ugly...

I cannot stand it when people think that if they talk LOUDER to a disabled person they will somehow understand them better. But this is exactly what the intern was doing. She was very loudly telling Noah that everything was fine and she just needs to ask him Mom a few (hundred) questions. Noah did exactly what I predicted. He ignored her and continued to cry and ask for a pretzel and run in circles all at the same time. I was feeling my blood pressure rise into the back of my throat.

We were then asked by the nurse to move into the actual pediatric emergency room where they had a private room ready for Noah. In all Noah had made over 5 transitions to new rooms since our arrival at the hospital and now he was DONE. He sat down on the floor next to the nurse's station and gave in to tears of frustration. I can't say I blamed him one bit. I tried to lift him up to carry him in my arms but he thrashed and kicked and screamed. Clearly, he had reached his limit. Thankfully Noah is under 40 pounds so I scooped him up and bravely entered the room to face the next round of questions.

This is when we met Dr. Williams. She came in with the intern and asked for a rundown of why we were there. This is the SAME doctor that had agreed with Ms. D'Souza that Noah needed to be admitted immediately for IV antibiotics given his history of staph infections and current breakout with a large abscess. Apparently, that plan had changed in the hour that had passed. Dr. Williams did a very brief exam of the abscess (that took myself and the intern to hold him down to complete) and said she thought it best to send Noah home on oral antibiotics and give him frequent warm baths to help the abscess drain naturally. She was talking in rapid fire mode so that I was unable to interject so I could explain to her that Noah will not take oral medications. He has NEVER taken oral medications. One of two things happen when you attempt to give Noah (and his brother Sam) any medication orally. He will either throw up promptly upon gagging it down or if you put it into his juice in a cup he was take one taste and completely stop eating and drinking for the remainder of that day, sometimes even longer. It sounds crazy but it has happened every single time. Sam once went 2 days without taking any food or drink from me for fear I had put the medicine into what he was consuming. This is autism at its worst, it doesn't make sense. At least not to those of us who are not affected by it.

When Dr. Williams stopped telling me how the plan had been changed I told her Noah would not take oral medications and has been receiving all the antibiotics he requires via injection. Unfortunately staph is resistant to all antibiotics that are available as an intramuscular injection. I already knew this after the previous month's round of staph. I asked why we were no longer considering admitting him for IV antibiotics and she said he would be better suited for administering them orally due to the fact he was very combative and getting an IV in him would be very difficult. I knew from a previous hospital visit with Sam that it was possible to administer a sedative that would calm him and help him sleep while the IV was put in place. I thought this would be best considering it was already past 6:30 in the evening and chances were very good he would then sleep the rest of the night unfazed by the IV and the medication being given. This sure seemed like a win/win to me! Apparently this was not possible. Dr. Williams explained that because Noah had eaten at noon they could not administer a sedative to him until at least 8 hours had passed and the only person who could place the IV was a PICU doctor who had left an hour previously at the end of his shift. Call me crazy but do you mean to tell me that if a small child comes into the pediatric emergency room in the middle of the night they turn him away because the PICU doctor is not available to start an IV? No, they call him or her in and have them do their job. So at this point I was really confused. I felt like she was giving me (and Noah) the runaround.

I shared my concern with the decision to send Noah home without antibiotics and only warm baths as treatment for a child that had been described by Ms. D'Souza as being 'A very sick little boy'. Once again I was told that in Noah's current state it would be very difficult for the nurses and doctors to subdue Noah due to his combative nature and our inability to calm him.

Well, that struck a chord, folks...

I point blank asked her if the reason we were being sent home was because my child's disability was more than she, her nurses, and this hospital could handle? She seemed a bit miffed by the question, all the more proof to me that I was probably hitting the nail right on the head. She went on to explain her decision rambling about how the warm baths were really more therapeutic than IV antibiotics in this situation and since the hospital did not have bathing facilities he would be best served at home.

Uh-huh. Sure he would.

She assured me that no matter what choice was made for Noah's care both options were going to be 'very labor intestive' for me as his mother. If he was admitted I would be needed to help hold him still and restrain him to keep the IV in place but that she was doubtful it would work. Or the other option was for me to take him home and give numerious warm baths to draw the infection out, give him oral antibiotics and then come back to see her at her office in the morning when she would reassess the infection.

Then she said something that even now I cannot believe she thought was okay...

'So, if you thought that by our admitting him you were going to get some sort of respite from all of this, you are wrong.'

WHAT?

I remember thinking to myself, 'Did she really just say that?' I was completely
speechless for about 10 seconds. When I finally came to I informed her that Noah was my second child and that at home is his older brother who is also severely autistic and that as a single mother I am quite aware of the fact that I do not get respites and I would not under any circumstances leave my child unattended in a hospital or anywhere else for that matter. Well, that suprised her. So she asked me just who was taking care of my older child then?

WHAT? You thought I left him home ALONE???

I told her he was being cared for by a number of friends at our home and that I had church members waiting to offer assistance caring for him if Noah had been admitted. After this exchange things progressed rather quickly. I agreed that taking Noah home was the best choice. Even if it was not I knew that I did not want my child admitted to that hospital under that doctor's care. We were told we could leave as soon as she signed the discharge papers which had apparently already been drawn up and that she wanted Noah to receive one dose of the antibiotic orally before leaving. The nurse arrived and true to form Noah spit the entire amount of medication out the moment it hit his tongue.

At least she couldn't call me a liar.

I have to admit it took a couple hours after we left and I had Noah relaxing at home in the bathtub before I realized just how horrendously we had been treated. The nex morning I called and spoke to Noah's pediatrician and she wholeheartedly agreed. In fact she informed me she was 'ashamed to be associated with that doctor's office' and she would be speaking to the president of Sinai Hospital about the way we had been treated. She further stated that if Noah's abscess worsened or she spiked a fever she would have him admitted to Johns Hopkins Pediatrics in downtown Baltimore rather than send him back to Sinai Hospital.

Believe it or not I sucked it all up and Noah and I returned to Dr. Williams' office the following morning. I was more concerned with his medical condition than I was with my concern over the way we had been treated. We were met at the office by Ms. D'Souza who was once again very gracious and kind to Noah and even located some Dora the Explorer magazines for him to look at while we waited. The follow-up appointment went as well as you would expect. Noah's abscess had diminished a small amount and Ms. D'Souza helped hold him as Dr. Williams drained the abscess again. We were sent home with instructions to continue the warm baths four times per day and that obviously the oral antibiotics were a mute point given he was not going to take them so I should put a thick layer of prescription strength antibiotic ointment on the sores each time I changed his diaper. We left and I was already phrasing the blog post I was going to write about this whole experience in my mind.

It blows my mind that in 2009 Autism is still being ignored, parents of these children are still being viewed as failures, and some in the medical profession are still not grasping the grandiosity of what this disability entails on a day in and day out basis for the family and society as a whole. As of September 2007 The Autism Society of America in partner with the Centers for Disease Control announced that 1 in 150 children born in America will be diagnosed with Autism. A staggering 1 in 94 will be boys. According to the national organization, Autism Speaks, diagnosis of a child with Autism is more common than pediatric cancer, diabetes, and AIDS combined. The families and individuals living with autism are often misunderstood, disrespeted, and ignored on a daily basis by the very people they should not have to explain themselves to. I plan to write a letter of complaint to Dr. Williams, Sinai Hospital, and the Chief of Surgery in which I will recommend some form of continuing education about autism and how to better deal with individuals and the families that are affected by it.

Meanwhile...I am going to continue on my trek to rid this house of staph and while I am at it I'll go to work on the hearts and minds of apathetic doctors and anyone else who thinks its okay to treat my child and myself with disrespect too.

Staph can stuff it!

I hereby declare war! For the foreseeable future I will be conducting chemical warfare in my home. I have at my disposal a whole arsenal of weapons of mass staph destruction and I am NOT afraid to use them!

Yoohoo, Mr. Staph... say hello to my little friends!

Joining me in my fight are many weapons to stop the staph in its tracks! First and foremost, I have bleach...and lots of it! I have placed antibacterial wipes and a gallon of bleach in each bathroom and in the kitchen for use every time I wash my hands or use the toilet. All the hard surfaces in the house will have to be washed with bleach or antibiotic wipes once per day for 7 days straight in order to wipe out the staph 'colony'. The idea that this bacteria actually has a colony gives me the heebie jeebies. It just gives the bacteria that much more of a malevolent sounding power over me and my home. Some of the weapons I have are only available by prescription, such as the Bactoban nasal antibiotic gel which both boys and I will use daily for 5 days. We will also be bathing with a betadine-type soap that kills all the bacteria on our skin. Unfortunately this soap will also kill the 'good' bacteria our bodies carry right along with it! So our ability to fight off new infections or bacterias may be hindered for a short time.

One of the fun items I bought for our use is a bottle of Squid Soap. Its a fun antibacterial soap to teach children to wash their hands for at least 20 seconds. The idea is simple, They press down on the plunger and it leaves a squid-like ink mark on their palms that will not disappear unless they wash their hands for the full 20 seconds. No more having to smell our children's fingers to be sure they actually washed them. Even better is it comes with a very cute silicone squid that you can take off and play with, or...well, your kids can.

Noah made friends with his new buddy, The Squid Soap!

I'll keep you all updated on how the detox is going here at Casa Walker. So far I haven't been able to do much since the major cleaning is not supposed to begin until Noah is clear of all the staph sores. Sadly, two more cropped up this morning. Ughhh.

The Cliff Note Prayer

My conversations with God have sounded something like this lately...

'I know you have a plan and that plan is perfect and I am thankful for that. BUT, I could really use some guidance down here right about now'

'They are sick...AGAIN!? I know I prayed for patience and maybe that wasn't wise but I believe you can deliver your children for any and all afflictions if it is Your will. So, could you please make it your will?'

'I'm really tired, I just want a break, I want to sleep all night and not wake up to my son banging on his door trying to convince me that it is morning and time to go to the 'playroom', or go through an industrial sized package of diapers in 1 week because my other son has severe constipation and refuses to poop more than a teaspoon at a time, and while we're on the subject I would really LOVE it if they could develop the cognitive development necessary to understand the concept of potty training. Can you help me with that?'

'Please touch the lives of those that are hurting today. Help me to remember that its not all about me and what I am going through. I have friends who have loved ones that are sick, undergoing surgeries, and fighting difficult diagnoses. Place your healing hand upon them and restore them as Your will allows. Give us each comfort in knowing You always make the right decision and we can rest in that knowledge. Help us to accept it when Your will does not align with ours.'

'I don't want to get fired from my job for missing so much work. Then again, maybe it would be better if I just stayed home since I seem to be here so much anyway. Could you help me make that decision? Can I make it on my own like that? Will I be able to make ends meet on child support alone? Please help me know what to do'

'Thank you Lord for listening to me ramble on like this, thank you that I can just talk to You and know You are listening and holding my tears in the palm of Your hand. Thank you for sending Your son for me. Forgive me for always questioning, and pleading, and crying at Your feet and not spending more time worshiping You and praising You during this storm'

I'm still praying and searching for answers to many of these prayers. I know He has the answers and I know that He will reveal them to me at the exact moment I need to have them.

I spend a lot of time talking to God like He is here in the room with me listening patiently (because He is!). I love that He's not rolling his eyes at me and thinking, 'Oh here we go AGAIN...'. I often ask Him for a clue as to what is going on around me. I don't need to know everything, just a cliff note or two. I would like some clarification on the never-ending question 'WHY?'

Then I have many moments when I feel guilty for questioning so much. Shouldn't I be able to accept blindly? Am I not mature enough in my walk with Jesus to be able to look at Him and and say, 'Thank you for this burden, thank you for this cross'. I want to help others and bless them through their troubles but much of the time I feel like I am barely keeping my head above water.

I'd love to hear how all of you deal with your human-ness and the questions that you ask of God. What answers have you received to those difficult questions of the heart?

Casa de Pestilence

My kids tend to get sick more than most. It has to do with the fact that they both touch everything and anything and then put their hands in their noses, ears, and mouth about a thousand times a day. I have been told that all kids do this when they are little, but I would assume that most kids have not seen as much sickness as my brood in the past few months.
Since the beginning of 2009 I would say both boys have had at least 2 bouts of strep throat, 1 bout of stomach virus problems, and most recently a horrid case of staph which left them covered in boils that had to be lanced and drained numerous times which put our family on quarantine. I missed 7 straight days of work due to that disgusting infection.
Just when I was thinking I was going to actually make it a full 2 weeks without missing work due to a sick child, Sam woke up last night at 1:00 am with a fever.
In my Sunday School class we have been discussing the 10 plagues of Egypt prior to the exodus of God's people from slavery. One of those judgments is pestilence. So far the other nine seem to have escaped us....for now. I, personally, think the legion of frogs would be kind of cool, maybe even educational for the boys who love green slimy creatures like snakes, frogs, toads, and lizards. However, the others I would like to avoid at all costs.
So, for now I will continue to nurse King Petri Dish (I often refer to Noah as Sir Petri Dish when he is sick) and pray that Noah does not also fall ill. As all mothers know, the only thing worse than a sick child is sick CHILDREN!

Random ramblings of a forgiven mom

I am not really sure if anyone reads this blog. I am thinking maybe it is more of a public diary that nobody reads but I continue to write because it just feels good to get things off my chest. I have always been a rather public person. I don't mind my name being associated with most of the things I say and do. But, even I have my moments. Sometimes I will overreact or completely blow my top and I will think to myself, 'Please Lord don't let anyone I know have just seen/heard that!' Then I remember that God sees and hears everything I say and do and even the things I only think about saying and doing. What is even more humbling is knowing that despite all that, He loves me anyway. Imperfections and all, He has counted my tears and amazingly forgotten my sins. He has passed over the worldliness in me and instead sees the only thing he can see in me....His perfect unblemished Son. God loves me just the way I am, and yet, too much to let me stay that way. So, I have my humbling moments when I act like a small child and pitch a fit of disobedience and God is not surprised, He's not embarrassed by me, He doesn't complain about me to His son and His legion of angels and He doesn't call my mother into his throne room and ask her if 'This is the way she raised me to act' (on a side note I am especially thankful for that!). He gives me grace, something I don't deserve but I desperately need. And he doesn't do it once, he does it repeatedly and constantly.