Thursday, November 26, 2009


2 years ago on Thanksgiving, Adam , 6 months old, went to the emergency room and received an emergency tracheotomy. Here's the story...

Okay, so he was already premature, spent 100 days in the NICU and came home on O2. However, he ate well and was gaining weight. He was home for almost 3 months and I returned to work. He was off his oxygen and although he still wore a monitor when he was sleeping, he was a regular baby, slightly small. But normal.

The week of Thanksgiving, he wasn't right. He wasn't eating as much and started to cry sometimes and refuse to take the bottle. His breathing seemed noisy to me. I took him to the pediatrician. His pediatrician said that his breathing seemed fine- his chest was clear and he probably just has a smaller airway because everything is smaller in him, and he had a cold.

I made 2 appointments for the following week. One with the pulmonologist and the other one with the gastointerologist. I felt something was wrong. We did not make it to those appointments.

Thanksgiving day, he wasn't eating and was clearly sick with what seemed like a cold. He was cranky and breathing was noisy- like a slight snore. His oxygen was fine. We have a pulse ox monitor and hooked him up and he was at 98% with his oxygen levels. So we were watching to see how much he would drink or if he would get dehydrated. Thanksgiving was at my house and there were people over and maybe it was too exciting for him and that's why he wasn't eating and was cranky.

Everyone left, the kids were asleep and Adam was hooked up to his monitor. No problems on the monitor. He was hooked up to his pulse ox. No problems. But, when we lifted his shirt to change him, we noticed that he was working too hard to keep his level at 98%. His sides were really going in as he was taking breaths (stridor). We hooked up our emergency tank and gave him some oxygen and decided we better take him to the emergency room.

When we got there, the initial diagnosis was Croup. They said that we are most likely in the beginning stage and due to his BPD and underdeveloped lungs, it could be bad. Also his airway could be smaller than most, due to his prematurity and with a cold, it is enlarged and swollen. They said that it is usually over in 24-48 hours and that they would admit him.

We were okay. We made some phone calls. Had Matthew taken care of and we were going to be fine.

It was not croup. That night and next day, Adam was bad. He needed the therapist to come in frequently and was pretty much getting nebulizer treatments constantly. He was put in the PICU. He was on a high level of oxygen and would sometimes bottom out and they would need to come in and "bag "him. They did this several times in the first 24 hours. The doctor said that  it was not croup because he should be improving and he's getting worse. All blood tests were fine. Chest xrays were fine. I was saying to them that it looked like he was drowning, like he is fighting too hard to breathe.

We would take turns crying. It was so hard to watch them come in and save him over and over again. They made the decision to scope his airway, but it was not clear images and they thought that it looked like a cyst or a swollen airway, but they could not be certain and would only know if he went under anethesthia in the operating room.

Surgeons came in and explained quickly risks and we signed a bunch of forms. I wasn't really thinking clearly. I remember them telling us that they would give him a tracheostomy and I was confused about it. I just asked "will he have it forever?" They said no, but we weren't in a position to weigh options or think about it. There wasn't that kind of time. Phil was angry. He wanted to hit people and there was this feeling of helplessness and why can't anyone tell us what is wrong with him. They could not tell us until they looked and they could not look until he was intubated and under anethesia and they felt that a trach was inevitable.

The head doctor was very kind and reassured us. I asked for a priest and a  nun came to our bedside and prayed with me. I remember me holding and singing to Adam and right before they took him into the Operating room, I remember reciting to him the poem "From Mother to Son" by Langston Hughes. I was sort of stern with Adam with my voice demanding that he not quit, do not sit down, do not rest, don't you dare.

Phil and I were a mess during this time. We would cry and felt so alone and frustrated. Just before the trach, I remember the head doctor coming in  and needing to bag Adam. I was crying and felt that my son was going to die right then and the doctor said to me. He's not going to die. I can do this all day. We are waiting for the surgeons, but I could trach him right now, if I had to.

I've never been more scared then when Adam was in surgery. We waited and then the 2 ents came out and we went into a room and spoke to them. They explained to us that what they found when they went in was a blocked airway. They gave him a tracheotomy. Just above the trach, there appeared to be cysts, but they could not be sure. Their best guess was that when he was intubated at birth, there was friction in the airway and a cyst formed. The recent cold brought on fluid to fill the area and the cyst gre over time. The cold made the airway swollen and he most likely had a smaller airway to begin with due to his prematurity. They said we were lucky. He was lucky to have us.

Now that he was safe and alive and breathing, we had the questions. What did this mean? How long? How can we fix it? They postponed those answers and left us with the feeling that he could lose the trach when the airway was fixed and the airway could not be made larger or cysts removed until he was bigger. He needed to grow and gain weight. It could be a year, 2 years, 3 years. They were unsure, but felt it would not be there forever.

When he returned to the room. I cried, He looked dead. They made him paralyzed and in a sleep state for several days so it could heal. It was hard to stay there with him like that. It was not him. The bloody trach scared me. I went from knowing what to do, to being completely unable to take care of my own son. I was depressed and devastated.

I remember a nurse telling me that I could go on medication. That this is difficult.

 I was NOT going to take pills- My grandmother survived the Holocaust. This is not the Holocaust and it's okay to be sad. This was a sad thing. I did not want to mask the sadness. I wanted to feel. I feel like that is for people who are sad for no reason, people who have illnesses that they can't explain, for people who can't get through their day.  I was not going to take medicine to get through my day. I was going to be sad.

They eventually took Adam out of his coma state- a few days later. And once Adam was a bit better and stronger they moved us out of the PICU to another hospital place called Children's Specialized. There we learned how to care for him, change his trach, feed him, bathe him, secure the private duty nursing, and medical supplies we would need, and the therapies at our home.

We spent Thanksgiving, Christmas and New Years in the hospital. He was hospitalized for just about 10 weeks, total. We NEVER left him alone, EVER. Me, Phil, my mom, my cousin or my mother in law were there 100% of the time. Day and night. We had shifts, we would sleep in the chair, we would leave and go right to work, shower there, etc.

Thank goodness we did. Many times, meds were wrong, doctors needed to be paged, orders clarified, therapists paged. Adam had a roomate, another baby, who died one night that my mom was staying there. She was greatful that I sent her there that night and It wasn't me. I think it still haunts her, saddens her the image of Aaron's mom holding her son for the last time. I still cry if I think about all the sadness in the hospital.

That all happened 2 years ago on Thanksgiving.

We got more opinions and went to CHOP where they removed his cysts over several surgeries.  He got his trach out just after his 2nd birthday. The trach made him stop eating. He has a feeding tube even today. The medical issues caused delays in development. He gets therapies and is "disabled". We are thankful. Thankful for everything.

 Enjoy your day and be thankful for all you have.
Happy Thanksgiving to you.

Tuesday, November 10, 2009

Tips for order

We had nurses working 2 - 8 hour shifts a day (16 hours total) for 18 months. In my home. We had (and still do) 4 therapists  (and their students - because they always seemed to have a college kid with them) coming to my home 4 days a week. Not to mention the nanny who we hired so there would always be two people with Adam at all times.
I have a husband, a brother who lives with me, another son who is 9, and numerous family members. 
It takes a lot to keep it together in my small cape cod.
Here's what I did

  • I established a "nurses station" Basically I cleaned out a cabinet and a space of countertop (I had this next to the fridge) Where I placed a basket with papers, pens, and post its. I kept his chart there, also. In that cabinet was where all the things were kept that they needed for their shift. ie: bowls, cups, bottles, and in the drawer (binkies, spoons, etc) I labeled it nurses station and we used the fridge (next to this spot) to post any numbers, contacts, notes to each other and the monthly nurses schedule so we could see who was working and nurses could see open shifts and sign up for them. 

  • We have goals that we work on with Adam and rather than have nurses, therapists, family members, nannies, friends, etc. randomly play with Adam, we posted suggested activities on a wipe board that I hung in our old dining room (which we turned into a playroom because its location was ideal and using the basement was not an option with all the equipment we needed on one floor) So, for example it might say: "work on stacking blocks and sing songs and clapping hands" We basically copied some of the therapists weekly goals. We also posted a list of all the signs that Adam was learning. 

  • We also have a TON of medical equipment. So we used Adam's closet with an organizer to store it, and many boxes would need to go in our room on the days that the medical supplies would come in from the supplier. (our room would get more normal as the month went on) One of the things that was super useful was to hang the clear closet shoe organizer on the inside of Adam's closet. Then I took a sharpie and labeled each pocket. This way we could find and see his thermometer (vitals every 4 hours), mick-key extensions, meds, trach ties, scissors, tape, pulse ox, and all his syringes were in their own pocket - 30, 60, 10, 5, 3 and 1 ml. everything labeled and easy to find, store, put away and I could see inventory to order more each month.

  • In the fridge I used one of the movable door containers for Adam's things (leftover food) and labeled it so Nurses and everyone knew where his things were and not use old food
  • In the fridge I gave the nurses a door container and labeled it nurse. This way they had a place to keep their own lunch, drink, snacks and feel okay going in the fridge.
  • I hung hooks on the back of Adam's door, just for them and their coat and purse
  • I also made sure that they (nurses and nanny) had a lamp (at night), a table just for them in his room, and a chair. We would (at night) provide a portable DVD player and the wireless code in case they wanted to bring their own laptop.
  • To keep the dirt at bay, you know he has a hole open in his neck, we made everyone remove shoes (and still do) and have bins by the front and back doors to keep them in. We have hardwood floors and tile, so it's easier than a carpet.
  • To help us with learn sign language, we posted posters, bought books, and Phil and I would speak to each other with signs-when we could. 
  • It is never easy to stay organized. We kept a family weekly list on the fridge so everyone knew what each day has in store and kept one central location of a planner so that Phil or I could make doctor appointments and know what was up. 
  • I also have a binder with all Adam's main info and evals and doctor reports, etc. It's easy to take with you and all the dates are there for meetings. It's organized according to ENT, Feeding, speech, physical therapy, devel. intervention,  other. 
  • All medical copays, receipts go in a small storage box. All bills go in a big box. When they fill up. I label them on the outside with the dates and stick them in storage. I will eventually work out paying people. It's hard. We have insurance and get crazy bills, we go through appeals. It's not easy. Don't even get me started on the health care crisis in this country.

Hope this helps anyone out there.

Saturday, November 7, 2009

Chop appointment

Well, we went back to CHOP on Friday morning. It's a pretty far ride (couple of hours) from home and our appointment was early (8 am) so we drove on Thursday to my mom's and spent the afternoon and evening back "home". This way we could make it on time to Adam's appointment and not have an issue with feeding him.

We got there- no problems. We heard that there was some sort of a septa strike, but we didn't have any traffic issues at all. This was the first time we were seeing the ENT since the trach was removed in May. 

When the trach came out in May, he wasn't speaking and we followed up with her a few weeks later. At that appointment all was well and she told us that the hole (stoma) would be open and just to keep it clean and covered with a band-aid and he should be making some sounds soon. We had to make an appointment to follow up with her and voicing concerns in a few months time. That 'few months time' was yesterday.

So she looked at the stoma, and said that although the hole was still open (after 5 months), she would not close it up until after the winter. Adam still blows air through it and has mucous coming through, too. She said that was not a problem and we shouldn't worry about it.  She listened to his voice and he was able to say a few words (hi, bye, mama, dada, Maaaa (for Matt)) and he made the vowel sounds as well as a few animal noises for her (moo, woof, roar).  He demonstrated no problems with receptive language and she did not feel the need to test his hearing.  He used a few signs spontaneously and we were communicating with some pecs, too. 

She was impressed and said how far he has come and that he did not need the voicing clinic (other than this intake day). His voice was not raspy at all and was a 'normal' baby voice. His breath patterns were fine when he was vocalizing. We just have to continue with speech therapy and get him to talk. 

It was a good visit and we go back to her in 6 more months.

She is one of the best doctors we have. Several times, Phil and I have ranked Adam's doctors and we totally have our favorites. What makes her exceptional is that she explains everything. She doesn't talk down to us. She smiles and laughs and has a personality. She also really knows her stuff. After we were told by a few doctors in our area that Adam was simply too small to have his trach removed and no one would touch his airway to try to remove anything until he was 2, we went to Chop for yet a third opinion. If they would have told us that he was too small and had too small of an airway, then we would have gone to Cincinnati. 

We went to the airway clinic at Chop and they reviewed Adam's files, charts, pictures, tests etc. (what a process that was getting everything there!)  She said that she felt that she could fix it. She took time out to explain the several options that we had. She was going to go into his airway and remove a cyst, seal it on up and all would be fine. If he still had too narrow of an airway after removing the cyst then we would schedule another surgery where she would take his rib and reconstruct his airway. 

When she went in the first time to remove a cyst, she found that she could not. He left surgery with no changes. She came out to talk to us and we had to go into another private room. At this time I started crying. I knew it wasn't good news. She was honest. She showed us pictures and explained what she found in Adam's airway. She said "I've seen thousands of abnormal airways and I've never seen this." I was crying in the corner unable to ask questions, but she knew what I would have asked if I could speak. She knew what I would ask the next day. We asked her about other doctors in Cincinnati who we researched- a Dr. Cotton. Could he help? She said that she knew him and would be consulting with him. She was confident that after several surgeries, she would be able to clean up the airway. She explained that she still might have to rebuild it, but we would start in a few months. 

We did. We first went to Chop in June of 2008 for our first consult. She performed three surgeries and she removed all the cysts in his airway. He did not need reconstruction.  His trach was removed by her in May 2009. If I won millions in the lottery, I would totally set up a research foundation and anything that doctor wanted to study, research or cure-anything ever involving trachs and children, we would fund. She always is number one.

Thursday, October 22, 2009

My school feelings after week 7

It's been 7 weeks and aside from the routine and the illnesses, school is hard because we are stuck seeing normal kids every day.

 Adam attends a regular day care three days a week. There are no "special" kids. Every day I drop him off and walk him into school. He is tiny compared to the other kids and I say goodbye until I come back 8 hours later. 

Each day I get the same report: He does not eat lunch or much of a snack with the other kids, and really doesn't nap well. 

When we pick him up, other kids talk to me. They say "Hi" to me and say "goodbye Adam" and usually tell me random things "Do you like my sparkly shoes?" "My name is Ashley" "What's yours?" I respond and smile and ask them questions, but I am always left thinking that that's what Adam is supposed to be like. I have to talk to myself and say "No. this is him. this is what he is supposed to be. "

 Sometimes I feel angry and sometimes I feel sad. Sometimes it is just easier to stay away from "normal" kids. (We've been able to do that for 2 years) I also can't/don't eat lunch with other people at work who have toddlers who are normal- it's hard for me to chit chat. Hard to hear complaints, hard to always have to answer the regular "How is he? Is he getting better?" questions.  

It's easier to avoid people and live on my own special ed island. 

School is rough.

Tuesday, October 13, 2009

Baby shoes

Adam has a shoe issue. He did not walk until he was well over a year and a half and he hardly ever left the house, but his shoes were white DC sneakers. They were velcro and wide and comfy. They were sturdy and although he was not skating yet, he looked really cute in them.

However, his feet grew and he refused, I mean refused to wear any other shoe on his feet. He would scream, hold his feet and throw the new shoes. If you would hold him down and make him wear new shoes, he would talk them off, refuse to walk and protest using every method. He would begin non violent, then resort to violence in his protest. Sometimes he would cry so hard that he would then vomit. Vomiting is a big deal because we work so hard on getting food inside him. When it comes out, I'm so pissed, I'm like "damn there goes 250 calories". We really try to avoid losing food so if the choice is  health vs. shoes. Shoes win.

This would happen every time we would try a new shoe for about a year now. 

I am not suppernanny and I have to pick my battles. He had a hole in his neck and a feeding tube in his stomach, so the shoe thing seemed small. So the kid is monk-like, a little ocd, likes dc, whatever. We worked around it. 

He never really needed to wear sandals or boots because there were no sandy beaches or snow in his lifestyle. So our solution was to reorder the same shoe in the next size up.  He has those DC sneakers in a size 4, 5 and 6. 

Now I realized that his foot is bigger again (6.5) and he really needs to branch out a bit. I mean snow can be in his future and maybe rain. So over the weekend I took him to a shoe store. He is 29 months old and he freaked out. He wanted no part of the measurement (had to hold him) and once the shoes went on his feet, he freaked out and he is loud. 

I remained calm and used simple words. I held him. He cried and carried on and we both sat on the floor in Stride Rite for almost 25 minutes. During that time every time he was calm, I would say, "Ok, Adam let's get up now", but he would scream and shake his head and when I would pick him up to have him walk, he would lift his legs in the air and refuse to stand on his own feet. He is a great protestor, but I am tough, too. 

Eventually I got him to leave. He just got worn out and maybe bored sitting on the floor and realized that he had to walk in order to leave. As we walked through the mall, periodically he would realize his shoes were different and then he would fall to the ground and collapse. Refusing to stand. I would actually smile. It took us quite some time to get to the car. 

I think that I have a greater perspective and a tolerance for tantrums. Me, 10 years ago, would have been embarrassed by this behavior and probably would have yelled. I might have just carried the screaming fist beating child out. Not that that doesn't have it's place, but I would not have found any humor in it. Today, I found it comical, sweet and endearing. It was like , well, that's Adam. He's stubborn, but so am I. I almost laughed each time he would remember his shoes were new and he would stop walking. I would not have done that a decade ago.  

I was worried about getting them on him this morning for school, but not a peep.

Wednesday, October 7, 2009

We went away

We went away this weekend. Far away.  This was the first time we have gone anywhere really far on an overnight without the kids in almost 3 years. 

Prior to this we spent one night alone, but we stayed at the Hilton one mile from the house.We also spent a two night stay at the Borgota down in Atlantic City, but the kids were about 10 minutes away with my mom. Then about one month ago, we went to a wedding in Pennsylvania, which was about a two hour drive, but this time was FAR.

We flew to California for 2 days for a friend's wedding, so it was a 6 hour flight. If there was an emergency, it would take us, at a minimum 12 hours to get to the kids. I was ridiculously nervous. 

(even though in this picture, I appear to be non-nervous.)

Adam did fine. He stayed home, so we didn't have to pack him all up and transport all that gear. I also would have been worried that we would have forgotten something, if we brought him to my mom's. My mother watched him here. She is one of the few people who has dealt with the trach, mick-key feeding tube, and his ridiculously smelly diapers. See, when you are on a liquid protein diet, like Adam, your diapers are unlike any stench ever known to man. no joke.

Yet another issue when your child is like Adam. It's difficult to have people watch him. Many people say they are willing, few come through. Also those who are willing, are not really capable of all of it. They might not be cpr trained, weren't trach trained, or can't operate the feeding tubes. Sometimes, they seem like quick to panic. Sometimes, they try to learn, but to no fault of their own, it's difficult to deal with all the medical stuff. We found that some people are freaked out by abnormalities and it's okay to be. We just can't leave him with them for more time than it takes me to shower. Also we try to be consistant with PECS  and sign language. 

This weekend, Adam did have a fever. Mom called us, spoke to two of his doctors, we called them from California, and by Monday afternoon, he was all better. Maybe he had a fever because he missed us.

Now, 3 days later, Matthew has a fever, so it might be viral, not emotional after all.

Sunday, September 27, 2009

Our New Routine

So September is almost over and we pretty much have our routine down.
 It's a crazy one.

 I wake at 5am (or Phil, we take turns). We give Adam his previcid (medicine for reflux). He is in our bed, when he arrived is anyone's guess- usually 3ish. Then we start his tube feed. He gets 250cc of peptimin jr. (it's a high calorie, protein, kids' liquid food available with a prescription). It goes through his stomach tube (mic-key button) while he sleeps and usually runs until about 6:15am. 

During this time I am usually "resting my eyes." for a few more minutes, start the pot of coffee and get in the shower. I wake Matt at 6 am, and continue getting dressed, hair and makeup.

We wake Adam by 6:30 and are in kitchen by 6:35. Check that Matt has on matching clothes, teeth are brushed, breakfast eaten. We will toast a bagel to take "to go" and make our large "to go" coffees. Get Adam dressed, inhalers given, and grab lunches (all 4 made night before).

In car by 6:55am. We drop off Matt and sign him in and then drop off Adam and sign him in. This takes about 30minutes for both children. We are on the road by 7:30 and usually get to work by 8:15. The whole drop off is reversed and we pick them up and are home by 4:45pm.

Then we tube Adam again (since he doesn't eat at school). dinner, lunches are made following dinner cleanup,  homework (which is taking longer now - joys of 4th grade) baths, books and bed. Adam gets tubed twice more while he sleeps- last feed over by 11:30pm

Twice a week Matt has soccer- 2 hour practices, games Sunday. Phil works another job one night a week and one weekend a month. Piano for Matthew is one night a week. I try to get to the gym three times a week (and have actually done this all month).

Laundry and food shopping and running a vacuum are weekend activities if they fit.

There are usually dirty dishes in my sink, laundry in need of folding, beds are never made and kitchen floor can be quite disgusting at times, but my boys are hugged and kissed, and we always have time for playdoh, tickle fights and cuddles. 

Saturday, September 12, 2009

First Fall Illness

Basically Adam made it one week at daycare before getting sick. I am blaming the daycare, but Philip and I both returned to work this week (in germy middle schools) and Matthew returned to school (in a germy elementary school) so it could be all that, too.

I thought the hand washing, hand sanitizers, lysol spray, showers, clothes changing would hold off illness.  On Friday morning like 5 am, Philip woke me up saying that Adam felt hot. He was hot with a fever. We tried to do a temp under his arm, but he was too squirmy and I didn't have the heart to wake him up. Gave him tylenol and Philip called out of work.

We paid the babysitter half her pay. I went to work and Philip took Adam to the pediatrician. The pediatrician said he looked fine- no infections. Must be viral. He played fine during the afternoon Friday then vomited after bath. Today he was sick. His nose is all snotty, he's coughing, he vomited after dinner. We gave him his inhaler a few times today and some pedialyte after he vomited.  

We will most likely call the doctor tomorrow and may return on Monday to the dr's office. I will take off Monday and stay with him. The next step is some prednilisone. We keep it in the house for him, but need to call doctor if his wheezing warrants it. I listened to his chest, sounds a bit tight, but not too bad. 

I would like to get some flu shots soon, but we have to be well to get them and with all the media hype- I hope this isn't h1n1. He sleeps with a pulse ox monitor on his toe and his oxygen and heart rate are fine, so maybe it's just a mild cold. Even a mild cold is trouble for this house. 

Thursday, September 3, 2009


PECS is short for picture exchange communication system. I am NOT an expert on this or anything but it works well for us. 

Basically last year our speech therapist suggested it to us (then she left to have a baby and her replacement knew nothing of this program, but now we have an excellent therapist again who helps) Anyhoo. 

We took her advice and looked it up online (googling pecs gave us a lot of bodybuilders). We checked out demos on utube and then contacted the makers/trainers etc to find out about any training. It was like almost $500 for a 2 day training (which was in the Spring, and I had no more sick time left from surgeries, so I actually lost pay, too) But I contacted them and explained my situation and they allowed me to "work" the conference and register people in exchange for attending free.  How awesome! 

Because both me and Phil couldn't attend together, I went on day one. Came home and trained him. He went on day 2 and came home and taught me.

This program allows Adam (and others with communication issues) to "talk". It is a book and all kinds of pictures with velcro on the back. Adam goes over to the book, will find the picture of what he wants and hand it to me. There are systematic teaching steps involved and in the beginning we needed toys and things that he REALLY wanted. It also took two people to teach him this because someone has to be like invisable and guide him to the book and appropriate picture of the object he wants you to give him.

This summer especially he really got it. Like at first there were only a few pictures he knew and was kind of confused, like it was a game we were playing. All of a sudden, he turned 2 and the switch turned on. Now he walks over to the book all by himself (NO PROMPTING), will flip through 20 or more photos, find a picture of a train for example, take it off the book and stick it on a velco sentence strip. He will then detach the sentence strip and walk over (even into another room) and hand the sentence strip to a person. The strip might say I want trains. He gets so excited when we read the strip aloud to him and then play what he is asking us to play.
He now asks us for food (that is away in cabinets), toys, to go outside. 

One of the pictures has music notes and says music. At first we taught him this with actual music on a cd player. Then he would give e this card when we were out and there wasn't any cd music around so I would launch into some sort of kids song. He found this amusing and then would hand me this music card while I was making dinner- like the boss he is demanding I sing a song for him.  Sometimes I would not sing the right song. So then I blew up some photos from PECS that were songlike and created a larger laminated "song board". Now he will point to the song that he wants to sing. 

I really need to destroy Bingo.

Wednesday, September 2, 2009

First Day

Adam went to daycare. I  can't tell you how guilty I feel, how much I worry about him or the scenarios I painted in my mind. I think it went well.

First, we really worked at transitioning him. I took him to the school twice last week and stayed with him for 2 hours each time to play and hang out. Phil took him a third time. Then he went yesterday and today for 1/2 days only. My mom and cousin picked him up on each day around lunch time. Tomorrow he will go for whole day. Then we are off for 4 days. 

The plan is for him to go to school mtw. Thursday he is with my mom and friday he is with a babysitter. This is an expensive option, but trying to send him only 3 days hopefully will offer good rewards without the risks of illnesses that too much daycare might bring.

In the short two mornings he was alone in school he:

  • ate other kids' food off their plates
  • took milk and on purpose dumped it on the floor
  • tried to climb the sink and turned to the teacher and signed "help" as if she was going to help him
  • threw the ball over the rather high fence in the playground and then tried to scale the fence to get it back
  • when another girl was having a tantrum, he walked over to her, laid down on the floor next to her and began rubbing her back                                                                                           

Many of his signs are ignored (he'll go up to a 3 yr old and sign, "give me the truck please" and just get stared at) but i am hopeful that he might begin to say something soon.

Currently he says yes, mamama, and dadada (he does not know that is me or phil he just likes to hear himself make noise b/c it's so knew to him still.)


Wednesday, August 19, 2009

NICU follow-up

Today was Adam's NICU follow up visit. It was a rough morning. The appointment was at 8:15 am, which was rough enough- 2 kids up, dressed, eaten, and in car by 7:45- I also HATE to wake up children. We were done by 11:30.

He saw a doctor (director of NICU), speech, developmental specialist, and a physical therapist. It was a battery of questions and (with the exception of the doctor) they played with him. Really they were tests disguised as play.

I am exhausted.

Emotionally it sucks. It sucks because I watch them ask him to do things that I know he can't do and that other 2 year olds can do. Also some things he can do but didn't feel like it. I also know how hard he is trying and how far he has come. I am so proud of him and know that someday he will be able to do all kinds of things, I cry because he can't and I cry because of how far he has come.

So. He can't talk, but he can sign and uses PECS (I'll explain that another day) He can walk, but he can't jump. He can stack blocks, but only 4. He can identify nouns in books, but not actions. He knows "in" but not under or behind. He knows some colors, but no numbers. He can scribble but only horizontally.

It was rough to watch my kid perform below his age. The therapists discussed their results with me and offered suggestions of things he still needs to do. I was defensive. I explained how far he has come in 2 years and how hard we have worked with him and taught him and fought with doctors and hunted specialists and traveled to other states and had 5 surgeries and 10 hospital stays- not including the 9 weeks in the hospital with the trach.

I got teary in the car ride home because I was so proud of all he could do.

For one of the tests the woman gave Adam a string of beads and a small narrow container. She asked him to put the beaded necklace into the container. The container was pointed on the bottom and narrow. He tried to put it in, then he tried to put the container down to use two hands, the container tipped over (it was pointed on bottom), he picked it up and tried it again. Then he put the container on its side and tried to shove the beads in, but dropped the necklace. He picked it up and tried again. Then he dropped the container. He picked it up and tried again. It went on for several minutes. The tester commented that most kids tested have given up by now. Adam was still trying. Finally with no help he put the container on the side and held it with one hand and used part of one hand and the other hand and got the necklace in. It was frustrating to watch, but amazing to see his problem solving skills working and even more amazing to me was that it was a concrete demonstration of his tenacity. That personality trait is what keeps him going and surviving.

"Don't you sit down on that step cause you finds its kinder hard" - from Mother to Son by Langston Hughes

Thursday, August 13, 2009

choosing a daycare

Back in the Spring we began searching for schools/daycare programs for Adam for the fall.

We thought. Do we want him close to home or close to work? We chose close to home. Because...
1. We work 35 miles away. It's a rough commute that we don't even like. It requires a major highway with accidents.
2. We can connect with people that live here, so we can do play dates, parties and know people who might be in elementary school with Adam.
3. We have a cousin, brother and aunt who live in our town and can pick him up if needed.
4. he can continue to have his early intervention therapists. They will go to the school 3 x a week instead of the home and we don't have to figure out what to do in another county.
5. When he turns 3 (in 8 months) he is eligible for public school disabled program and it will be easier if we are already in our town with daycare.

Now let's find a school.

Special schools where we live are only for 3 and up. There is 1 school for disabled kids in the county for under 3. We visited it. It had no outside play area. The babies and toddlers were in wheelchairs or ha limited mobility. it was institutional looking. no colors. kids seemed clean but understimulated. not for Adam.

First we tried Montessori. Matthew went to Montessori school until he was 5 and it was a great fit and a great program. I feel he benefited tremendously. When I revisited a montessori school, I tried to see it through Adam's eyes. It did not seem to fit.

Second we then asked his therapist and case manager for some suggestions. She gave us a list (which I could have gotten off the internet). I called each one and was disgusted by the way I was treated. Here's how it went

"Hello. Blahblah school how can I help you?"
"Hello. I'm interested in a daycare program the fall. My son will be a bit over 2. Do you have openings?"
"Sure. When would you like to come in to visit?"
"My son has some disabilities, is that a problem?"

Ready. Get ready. Here's the reply.

"well, what's wrong with him?"

and I got
"Um, well we actually only have normal kids here"

and I got
"I don't think this school would be good for him"
Those were the comments I got from way too many schools/daycares.

Third I contacted the 2 colleges/universities that we are lucky to live near. They both were awesome. Actually excited to have a "different" kid. They have lots of students who work at their centers and all would be great. EXCEPT- when I visited both schools, their playgrounds were completely on sand. The entire playground. ( note- sand is not okay when you have a trach)

Fourth I asked all of the parents at the baseball, soccer and basketball games we attended for our 9 year old. Where did their kids go? I found a winner! We called and visited. They seemed open to a "different" child and their playground was not on sand.

Let's hope it works out. We will find out in 2 1/2 weeks.

Tuesday, August 11, 2009

Day care

If Adam was born on time (and none of what happened, happened) than Adam would have gone to daycare when he was about 6 months old.

Instead, all that happened, happened and we made lifestyle changes to make sure he would not.

His NICU doctor explained to us that Adam lacks many immunities. He missed the entire last trimester. To try to make up for that and help him, I pumped breast milk for 6 months. I would set my alarm and wake up around the clock to pump. Then I would freeze it and/or bring him fresh milk. The NICU had a pumping station and would store my milk for him to use when I wasn't there. My breast milk would go into a feeding tube and then later a bottle for him. I feel good that he survived solely on nutrients from me for his first 6 months.

The other thing we did was we listened to the doctors. Adam went NO WHERE. 
1. He never went to public places- no mall, restaurants, chuckecheese
2. All those who see him had to have flu shots, wash their hands and be non smokers
3. We all (including my 9yr old) changed clothes and showered when we came home from school/work
4. We temporarily found a home for our beagle- (she sheds and the whole trach thing made it necessary to keep home hair free)
5. We cleaned as often as possible

The biggest thing was no daycare. I took a 6 month unpaid leave from work and then Philip took an almost 2 year unpaid leave from work. We borrowed and mortgaged money, eliminated expenses and Philip took a job paying a lot less but with better hours working 1-9 pm. We hired a babysitter from 1-4 and my mother, cousin and brother helped watch Adam in our house.

He got sick a few times and was hospitalized for minor illnesses, but we felt it made a difference. They told us he had an 80% chance of not seeing 2 years old. We worked hard to get him this far, but we are now going to put him in day care.

1. He needs to socialize with children
2. He doesn't talk- only signs and uses PECS so hoping that this might improve his speech.
3. He doesn't eat much- maybe seeing other children eating will help, too.
4. Phil's leave is up and he needs to return to teaching or lose tenure and pension.
5. Adam got his trach out

Adam will go 3 days a week to daycare in September at 27 months old. We still have a sitter and family to help with the other 2 days.  I will blog more on our selection of schools another day.

Saturday, August 8, 2009

cooperstown, ny

I know, it's a bit delayed. However, it's been super crazy busy (as always)

We went to Cooperstown for the induction of Ricky Henderson a few weeks ago. he is Philip's favorite ball player from his youth and we couldn't think of anything better than having Phil spend the weekend with his own father and our boys.

It was the first time we stayed in a hotel with Adam. We had to bring LOTS of stuff including medical equipment. The hotel was very friendly and posted a sign alerting others that we had oxygen in the room. 

Cooperstown  has no parking normally and so they really had no parking during the induction weekend. We had a hard time finding handicapped spots, but we managed with the stroller to bring it all with us. 

On the way to Cooperstown, we stopped by a cave - Howe Caverns. It was a nice spot to spend the morning. The kids got a break from the car ride and we had a nice picnic lunch. It had like an hour or so tour of the cave- including a boat ride. They don't allow any bags down into the cave, but they were friendly and allowed an exception once we explained Adam's needs and the problem of being 135 feet underground without some of his stuff. They allowed Phil to carry Adam's backpack with an ambu-bag and some emergency supplies. That was great to be all included as a family. We did split up when the boat ride came. Adam can't do any sort of boat- so he went back up to the surface.  All in all, they were great there!

We did it!

Thursday, July 16, 2009

trip to the beach

Okay, so we did it. We went down the shore.

First, last week, Philip and I went all by ourselves overnight and spent a few days at the Borgota in Atlantic City. Very nice. We had not been overnight without the kids since October. In October, we stayed 3 miles from the house and my mom watched the kids, with my stepfather and a nurse. 

This time she had no nurse and we were maybe 4 miles from them. It was relaxing and we got really good sleep.

Then over the weekend, we took Adam to the beach. There was no way we could have done it without a house 3 blocks away. It is difficult to bring a toddler to the beach normally- and our 9 year old also requires "stuff" So, we had: boogie boards, wave boards, sand toys, towels, chairs, blanket, umbrella, drinks, snacks, etc. We also had to bring: Oxygen, clean and sand free clothing towels, bandaids, ambu bag, mick-key feeding buttons and tubes, and sterile water and gloves. That was all the stuff at the beach!

We needed the house close by because as soon as Adam was ready for lunch, we took him back to the house, let him eat there, bathe him and let him take his nap in a sand free environment. We were stressed trying to keep the sand and water out of the trach hole. It's almost closed up, so we put tegaderm (it's like saran wrap) over the tiny opening and then about 4 waterproof band-aids criss crossing one another. We also had him wear his high neck swim shirt on top. 

So, how did Adam like the beach? He loved it. He was crazy about the ocean. If we were not there to stop him, he would have run full speed into the water until he drowned. He had no fear at all and was really uninterested in digging or playing in the sand. We were basically at a 90 degree angle, holding around his tummy so he would not go too deep or get water by his neck. Phil, me and my mom traded this duty off, because our backs would really hurt after a few minutes and we wanted to straighten up. He would laugh and laugh and scream when the water would hit his toes and it was worth the work.

"The work" is always there. I have to say to myself am I saying "no" to this invitation/event/activity because it's dangerous? Or am I saying "no" because it's too much work? Sometimes, I initially say no to something and then I catch myself, and say "Okay, if he was a normal 2 year old, would I do this?"  Usually the answer is yes, and I start loading up the car and my ENORMOUS diaper bag.

Thursday, July 9, 2009

what to say and not

Pretty often someone will tell me a story about a friend who is in the hospital, or a complicated pregnancy that's not going well, or a child who is in the hospital - you get the point. And they ask me what can they do for that person. 

I get asked this because I spent 4 weeks lying on my left side in a hospital just before Adam was born. He spent 100 days in the NICU, 2 additional months hospitalized with his tracheostomy, and we have been in the hospital for 5 surgeries and numerous other illnesses over the past 2 years.

So... Everyone is different. I am not saying what helped me will help you, but here is what some people did for me and my family that was awesome. (in no particular order)
  • mailed me personal cards that were very funny, uplifting and reminded me of stories and past adventures
  • books (not deep- fluffy summer mindless books and funny ones)
  • burned cds/itunes gifts with really good tunes that were uplifting or reminded me of good times
  • care basket with nail file, puzzle books, snacks, pen, journal
  • friends paid for a cleaning service to come
  • lots of dinners that were given to me ready to eat- (i brought these to the hospital and was able to eat dinner while visiting with adam) Some friends even included desserts!
  • books, dvds, cards given to my other child- who was also in need of tlc during these scary times. 
  • People took Matthew out to do things with them
  • some medical equipment and special things we needed were paid for by friends
  • gift cards to fastfood places near the hospital
  • friends who would look up stuff for me on line and research things (support groups, doctors, treatment options) for me- weed it out and give me the answers I was needing because I had lots of questions and no time
  • people who did the everyday stuff for us: raking leaves, mowing my lawn, taking the garbage to the curb, food shopping
  • distracted me. sometimes it was terrible talking about it all the time. sometimes you just wanted someone to ask you about The Office.

Things that were not helpful to me.
  • someone telling me that they once had a friend of a friend's neighbor who had a similar thing happen and they were fine. Every story is different and believe me a 2 or 3 pound baby is huge. A few weeks makes a ridiculous difference.
  • people who talked about their own kids and their own issues trying to connect, but they were way off: like " My son has his tonsils out and I know how scary it is to have your kid getting surgery"
  • baby gifts. Until he was home- all baby gifts made me worry. 

It's still real hard for us to deal with parents who complain about kids who keep them up all night crying, or eating problems. Parents who you see are not really enjoying their good luck having healthy children. It's hard when people ask me "How much longer till he can get rid of a feeding tube" "So , is everything okay now that there's no trach?" " It's great, that's he's normal"  
Like, he's a special kid. He has cognitive and communication delays. These are impacting his development. Our long term goals for Adam are to be in a public school in elementary school, but he is special. I hope that he will overcome his delays and that they will not result in lifelong disabilities, but I am not a fortune teller. I love him. I am doing the best I can to help him grow.

Hopefully, If you are ever in a hospital, you will have caring family and friends to help you. We did and it made a huge difference.

Wednesday, July 1, 2009

Say Bye To Private Duty Nursing

After 18 months of 16 hours a day of private duty nursing, we are finally free. No more nursing. 

I am relieved that Adam no longer requires this many hours of daily care. It is hopeful news to us and it was been a ridiculously difficult time. Of course, it will still be somewhat hard- but this is great news for his care. 

I have some mixed feelings about it all:
  •  I'm glad I have insurance that covered private duty nursing, as many people do not have that in their policy, if they even have health insurance. 
  • It was like being on a reality show- hardly ever any privacy in past 18 months
  • There were often power struggles between us and the nurses and times when I really just needed them to back off.
  • They really did help to care for him and with so many medications, feeding tube feeds and the tracheostomy care- Adam was a two man operation most of the time.
  • We said our "goodbyes" to all of them and I really do hope that several will stay in touch, it was like they joined our family
  • A bit nervous about sleeping tonight, but I think it will be fine. We trust our doctors and I feel that because his ENT and pulmonologist at CHOP said no more nursing, he does not need nursing.

Sunday, June 28, 2009

No Town Pool

Okay, so maybe Phil and I were a little too optimistic. 

We took Adam to the pool. See, we have a beautiful outdoor pool in town complete with kiddie pool, fountains, water slide, skate park, tennis, basketball, playground and of course a snack stand.

Last summer, Adam was unable to walk and we would go to the pool. He had a trach and the mick-key button, but the kiddie pool is sloped and we would sit in about an inch of water and play with toys while Matt would swim away and play with kids in the other pool. I don't work in the summer, so the pool was relatively empty- we would have Adam's nurse with us. People would look at us, but once you look at Adam, you would see that he has a hole in his neck, and realize why he had a nurse. Also, it wasn't that crowded. We rarely went on the weekends.

Well, yesterday was the first nice day in June so Phil and I sent the nurse home early and we drove to the pool. 

It was a disaster. 

Adam's hole in his neck is almost closed, but it's not totally. He has a band-aid covering it up and a few splashes is okay, but not full on dunking of the neck and face. We thought (I know- nuts that we are) that Adam would stay in the shallow part and he would play with his toys. We couldn't be more wrong. He wanted to run under the fountain and throw himself under water. 

I should also say, that we got plenty of stares, because we were the only parents who had our kid wearing an spf  50 shirt (mostly to hide his stomach tube), a life vest and an inner tube. I'm surprised Adam could even walk with all the gear. Also to an outsider (who can't see the band-aid on his neck) we looked like ridiculously overprotective parents. I mean, I would not let him go past his knees, Phil was holding Adam's back part of his vest and I was kneeling in the water no more than inches from him.  

It was so stressful for us, and Adam. He had no idea why were weren't letting him under the fountain and became a normal 2 year old who wanted to be independent.  

We left and I'm sure the parents were talking about us afterwards. Oh, well. 

If his hole closes totally by August, we'll go back. Otherwise we will take Matt for a swim in the evenings. We can put tegaderm over the trach hole and he can now go in sand. (he was never able to with a tracheotomy and we have not let him in sand yet.) We are hoping he will be terrified of the ocean next week and stay on the beach. 

Based on his past experiences, there's not a whole lot that kid is scared of.

Wednesday, June 24, 2009

Say Yes To Doctor Visits

Yesterday and Today, Adam went to 2 doctor visits. We saw the Pediatric Pulmonologist and the Pediatric Gastroenterologist.  

They were both very complimentary and commented on how big Adam is getting and how good we are as parents. Of course I went to both visits with his day time nurses and I had my list of questions I needed to ask.

The pulmonologist changed Adam's meds. We are going to try to use just an inhaler and see how he does. Let's hope for the best because the inhaler seems to be easier to transport (no wires, plugs and car chargers) and seems to be about a minute to administer vs. about 10 minutes of keeping him stillish.

The GI basically was super impressed, but said that we have to be ready for an uphill climb to get rid of his mic-key button. He has made so many improvements in the last 3 months. He will now eat some food by mouth. Today he ate cottage cheese, yogurt, toast, a few cheerios, and some banana. He was offered (but refused to eat) watermelon, grapes, carrots, mashed potatoes, juice, ice cream, milk, french toast and pasta. 

He really doesn't drink at all. That seems to be what is holding us back. We offer cups, bottles, straws. If it is sold in a store (and yes, we've even tried online special cups) we have bought it and tried it. We keep thinking that maybe if we find the right cup, he'll drink. I know, it's ridiculous to think that way.

So right now, we are doing well. We are about 50/50- tube feeds and mouth feeds. We need to get him to drink enough liquid (he requires about 1000 cc's a day of liquid and 11-1200 calories). So we are trying. The doctor was super nice, and said how we were Adam's best therapists and what we are doing is great. He can't even believe that we are getting him to eat anything by mouth let alone his grilled cheese devouring on Monday afternoon! 

He also (drum roll) said his first real word. He is 25 months old and he said -"yes" . It sounded not quite like yes, but it was clear that it was his intent and that he moved his mouth to make the sound. Not just his hands to sign. It was very exciting and he kept on saying yes of course we said it a million times to him this afternoon and kept on asking him questions just to hear him say it. 
It was wonderful. absolutely wonderful. yes.

Monday, June 22, 2009

Night Nursing

Today was my first day of summer vacation. I did not relax much- mostly because I have a long to do list that wasn't able to get done during the last two months. I always have a long to do list. We are not going to have night time nursing in a week and I feel like I really had to reorganize some space in my bedroom for Adam's crib- since he's joining us in a week.

Let me explain night time nursing because unless you've been there, or you are one of the 5 people living here, you just won't understand. 

Adam had a trach- so there was a hole in his neck that he breathed through and he could not make any sounds. The air escaped out the trach instead of going up past the vocal cords. If we all slept at the same time, no one would ever hear him or know if his trach was blocked and he could die. So, Adam recieved 16 hours of nursing a day (one eight hour night shift) each day. At 11pm, a nurse comes to my house. We go to sleep and she stays awake in my home until 6am, when her shift is over- we get up at 5:30 or earlier if there is a problem. 

It's ridiculously weird. 

It also takes us a while to trust the night nurse. The first few times a nurse comes here, we take turns pulling all nighters (playing video games or internet), because we don't trust them. The next step is that we take turns sleeping in the living room. If that goes well, we move to sleeping in Matt's room with the door open (his room is next to Adam's) and we relocate Matt to our room. Finally we sleep in our own room but we set our alarms for random times to interrupt our sleep cycle and check on the nurse and Adam. If all goes well, then we can sleep normally during that particular nurse's shift. We do this for every nurse at night, for a year and a half.  Sometimes the week is a bad sleeping week for us if there are a lot of new nurse shifts. 

It's weird because there is no privacy. You know they can hear you fighting and laughing. I worry if they judge my tv show choice or the jokes I laugh at. I can hear them running water, on their cell phones, and using the microwave.  

The night nurses are a blessing, too. Once we trust them, it's a relief to be able to sleep and know that they will wake me up if there's a problem. 

There have been some real wackadoo night nurses, though.

  • Nurses we have found asleep- one even tucked himself in and didn't even wake up when Phil called his name
  • A nurse who needed a cane and had a "no baby holding policy" before 5am. 
  • The perfume and the makeup and the long nails. I mean, really? So ridiculous.
  • One put a towel over his lamp, which caught on fire.
  • Not changing diapers
  • not noticing his feeding tube leaked all over his bedding
  • Once we called 911 and the nurse left the house before the ambulance came

We've had some great ones, too. One nurse in particular has worked with us four nights a week since Adam got his trach and she has been a blessing- as loving as a grandmother and an excellent nurse.

On July 1st, I'm sure we will get no sleep. phil and I will just be way too nervous. But we will laugh hard at controversial comedians, swear a bit more, and say very inappropriate things.

Sunday, June 21, 2009

I Matter

I suppose I feel that although I am not important enough, perhaps my ideas and experience can be helpful to another mother. Is is arrogant to feel I am important enough to blog? 

Let's see. 

Adam, my youngest, was born at 665 grams. That's just over one pound. He was in the NICU for 100 days. a few months after that, we raced him to the emergency room on Thanksgiving weekend. He had multiple cysts which grew and blocked his airway. He got a tracheostomy and we stayed in the hospital till end of January. He stopped feeding when he got the trach (he was 6 months old) and he came home with an ng tube. That's a feeding tube that goes down your nose into your stomach. We fed him that way until he began coughing and pulling it out all the time. He then got a peg tube which became a mic-key button a few months later. For those of you who have no idea what that is- it's a way we can feed him directly into his stomach. If you look at his tummy, he has a little plastic piece like what you blow up on a beach ball. We open it, but instead of blowing him up, we hook up a feeding line and a pump and he eats that way several times a day. Because of his prematurity, he also has chronic lung disease, so we deal with inhalers and nebulizers several times a day, and he has vision issues. Currently he wears glasses and a patch for a little every day, but will probably have surgery on his eye soon. 

He has therapy three times a week. He is just over two years old now and got his trach out (after 3 surgeries in last 9 months) two months ago. He was never able to make sounds until the past 2 months and is learning to find his voice. His premature birth was not my fault. There is nothing I could have done differently, but there is still saddness in the fact that he doesn't have a normal baby/toddlerhood. A bit of anger, too.

My older son, Matthew, is an amazing big brother. I tell him that he was picked to have Adam as a little brother. Matthew is patient and sweet. He loves Adam and I feel that he doesn't have it easy, though.  Matthew plays soccer, baseball and basketball. He wants to be a scientist when he grows up and although he has a speech impediment (lisp and articulation disorder- along with a slight stutter) he does not ever stop talking. 

About me. I went to Rutgers, majored in History and got a teaching job right out of college. I got my Masters at Columbia, which I went to as a single mom (Matt's dad and I divorced when he was a toddler). I married again- this time the guy was a total jerk and liar. After another divorce, I realized marriage might not be my thang. 

I met Philip at work, we were friends first and then he asked me out on a date shortly after my second marriage ended. We have no plans on marrying but he is my soulmate. He is Adam's daddy and we are unbreakable after all we have gone through with Adam and our closeness is amazing. He helps me to relax and he is the funniest man I have ever known.

Today is Father's day. We will relax at home and chill out. No nurse today. (oh yeah, that's another part of our life) For the past 1.5 years, we have had 16 hours of nursing in our home each day. It is a blessing (they help take care of Adam's needs) and a curse. There is someone in my home all the time and they are not my friends. Even my friends and I would fight if we were together this often. I will blog on the nurses another time. Enjoy your day.