Friday, January 29, 2010


Well, we have our first meeting (eligibility) scheduled for next week for Adam and the public school system in our town. I called to confirm and I asked a question. On the form they sent, they asked for me to bring Adam's immunization record and his medical records.  They can't be serious. I mean, his chart is HUGE at just the pediatrician's office, let alone all the tests, surgeries, the 3 different hospital stays, etc. So, I asked them what records specifically did they need and I explained that to bring all his records would be difficult. She said to bring the most recent (again, I'm not sure what that means- I mean recent visit? what doctor? A note? A test? )  I will be pissed off if I spend hours (that I don't have) on phone calls and making copies and faxes and collating all his records in one huge box in one week's time only to find that they don't need it all. So, I decided that I will bring nothing and have them let me know what they specifically need at this meeting.

Anyhoo, I went through some of my boxes and records of Adam's at the house (looking for some medical "recent" records and came across my journal from when Adam was in the NICU over 2 years ago.

Here are some excerpts:

 June 6
I'm writing this from your bedside while you sleep. You have been on the ventilator for several days- actually since the 1st (a Friday). The weekend was really rough. They put you back on a ventilator on Friday because you have too many apneas- you forgot to breathe- A lot. they checked you out to see what was wrong.

Over the weekend, you had your second brain scan (no bleeding) another xray (you've had too many to count in the past 21 days), a spinal tap, blood tests and all came back fine- except for some CRP blood test which shows potential inflamation- it was high- 139. It should be below 10. Today is was good (lower in the 20s) so you are still on the ventilator.

I have held you only a few times. You can't regulate your temperature and you are too unstable. On Thursday the 31st was the last time I was allowed to hold you. I held you skin to skin and your oxygen and heartrate were great. In the past 5 days, you have been too unstable and they won't let me hold you.

Also over the weekend Mommy and Daddy were very angry at the doctors who were on call. (your regular NICU doctor was off) They didn't answer our questions and tried to just use confusing vocabulary and spoke in circles. Also the physician's assistant (who was in charge one of the days) told us that you are "rapidly deteriorating".

Today you are doing better. I don't care what they say. I am so proud of you and I tell you that every day. I see you everyday and sit by you from 8 am to 2pm. Daddy comes from 6 to 11pm. Hopefully we can come more and stay even longer when you can be held. Right now we sing to you but you pretty much sleep almost every minute. Today you weigh 750 grams (up from 665 grams at birth) and you've grown 4 inches in the last 21 days since birth.......

Saturday June 9
You are still on the ventilator. Thursday during rounds they were talking about moving you to CPAP (extubating you) While 3 doctors and 2 nurses were surrounding you and discussing this, you destated in front of everyone. ... Today's plan is to dc the antibiotics and the iv, but keep you on the are back in an isolette now (after a week in the warmer) it's better because it cushions the sound and the light. It also makes me feel like you are more stable. ....

They took you off the ventilator and you got a blood transfusion - you get Daddy's blood. He donates it for you to help you and all your food is my breast milk. The human body and science is remarkable, you had another brain scan and everything is still okay....

Yesterday you did the scariest thing to me, I was allowed to hold you for about a half hour (they said that was all I was allowed- you still can't regulate your temperature) and while I was holding you you had a brady. You just stopped breathing and turned gray and wouldn't come back. They took you and put you in your isolette and 2 doctors ran over, the nurse, respiratory therapist were all working on you. They used a bag to make you breathe. I stood there in silence with tears running down my face. When you came back they said you were okay and called for an immediate xray, so I had to leave the room. I went out in the hall to cry and call dad. As I was crying in the hallway, I looked up and saw Babci coming unexpectedly towards me- perfect timing. I really needed her.It seemed like all day was hard for you, you would be angry and fight the cpap machine then sleep and let it work and your numbers were great, then you would fight the machine again and it would start over. your sodium levels are fine, but you are retining fluid, so they will cut your sodium intake, maybe your lungs are fluid filled, too. ... It seems like sometimes the doctors know everything and other times, they guess at what is going on and hope the odds are in your favor. They painted a grim picture for us before you were born. ...

you are 2 pounds and 5 ounces today!

A lot of the journal was hard to read, and I cried rereading it in parts. I hadn't looked at it since he came home 2 and a half years ago, and I think it brought back the feelings of fear and sadness that consumed me during those 120 days.

Here he is this Christmas with his older brother.

Friday, January 15, 2010

6 month evaluation

Ok. So every 6 months, "They" make Adam get evaluated. These tests always make me feel crappy. It's like - Look at all the things your kid is supposed to be able to do but can't.

His therapists are AWESOME. He's been getting therapy since he was 6 months old (adjusted age of 3 months) and he'll be 3 in May. He used to get much more therapy- I mean he no longer gets PT or OT, so he's made MAJOR progress.

Well, we just signed off on his evaluation with early intervention and currently he is:
18 % delayed in Cognition
21% delayed in social /emotional
10% delayed in Gross Motor
17% delayed in fine motor
18% delayed in Adaptive/self-help
0 delayed in sensory
50 % delayed in communication

I can't really understand all of this nonsense (and I'm fairly educated). It seems so arbitrary to test these things that sometimes he does and other days doesn't feel like it. And then to get an exact percentage seems to me to take something which is subjective and make it seem scientific.

I understand he is delayed in communication. The baby could not make any sounds until he was 2 years old. I mean, really could not. The air escaped out the trach before reaching the vocal cords- for real, he could make no noise.

If I compare this summary report with the one from 6 months ago, he decreased his percent with cognitive. 6 months ago "They" said he was 33% delayed and is now only 18% delayed. But non of the other areas grew? It just doesn't jive. I mean, he is doing many more things than ever before in so many areas.

I guess they have to justify the program, and the growth and who gets what services, but to make it seem all mathematical seems wrong. In another country, culture, another time period, would he be delayed at all? What if we measured cuteness- he'd be ahead of his peers.

It is a social construct.

Tuesday, January 12, 2010

Winter break

I know, I have not blogged in weeks -since Thanksgiving. Basically it was nonstop till Christmas.

Christmas came and Adam was very sniffly on Christmas, but no fever. Then it was all non stop illnesses. Adam was sick first: fever for days, vomiting, mucous everywhere. When Adam is sick, it lasts a long time. He has really so little ways of fighting anything- I mean he missed the entire 3rd trimester and due to all his issues, it is so hard for him. His stoma (hole in his neck where the trach was) is still open, and gunk will come out of the hole. You have to clean it, and change bandages and he's a mess. He also developed a really bad cough.

We took him to the pulmonologist. The doctor explained to me that Adam has a lot going against him. First, he has chronic lung disease- so when he gets a cold it's hard for him. Second, he had a trach, and apparently a trach destroys some celia (not sure of spelling) but this stuff in your airway that helps you clear away mucous. He's missing that and so he doesn't know what to do with all the gunk when he gets a cold. It builds up in his lungs and he swallows it. He gets an infection and he throws up all the time. This is problematic for so many reasons. This time the doctor gave him an antibiotic for a week. He ended up with diarrhea and a crazy bad diaper rash. This resulted in another trip to the doctor and a cream. He also developed a stomach virus later the next week and my week was laundry filled.

Of course, somewhere in there I got it, so did Philip, my cousin, brother and my mother. These are people who are instrumental in keeping me sane, my home operating and things running smoothly. We we all knocked on our asses.

What a New Years.

Also in there, we took him for a follow up visit to the GI. Adam got put on some new meds to hopefully increase his appetite (he lost weight) and some new formula in his g-tube that is higher in calories.

We also wrote our letter to our school district asking them to evaluate Adam (he turns 3 in May) and early intervention will stop. Later this month we have our 6 month evaluation/planning meeting with early intervention (which they only do doing the day)

We made this appointment and did research over break. We have already gone to 2 feeding clinics respected in our state, seen several different nutritionists, dietitians and 2 different GIs. This particular feeding center is in another state (super complicated with our insurance) and only sees new patients and does 2 hour intakes on Thursdays (when most people work).

We are starting 2010 with hope and an appreciation of our health. Happy New Year to you and yours.