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.