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.