be sure to check the archives

Ricky 05-07-2002
Originally uploaded by Beckerbuns

In addition to writing new stuff, I'm going to start importing significant entries from my old blogs. So be sure to check the archives links over to the right, as I'm hoping to put proper retroactive dates on everything...

12 years ago

Becky and Ricky
Originally uploaded by Beckerbuns

Originally posted to my friends-only LiveJournal blog here on November 26, 2004.

On the day after Thanksgiving, 1995, I was admitted to the hospital because my baby was not moving. Shortly after an abnormal ultrasound I was transferred to a hospital with a level 4 NICU and Ricky was born two days later, November 26, 1995, by cesarean section.

The baby (who had no name for several days, having surprised us by coming 7 weeks early) almost immediately had bowel surgery and then spent seven tumultuous weeks in the NICU.



About 10 days into his hospitalization, the genetic tests came back and we learned that our firstborn had cystic fibrosis. It was the beginning of our long journey.



And 9 years ago today it all began.

Note: Now it's actually been 12 years!

the story of a boy

Ricky in the hospital, day four. 102707
Originally uploaded by Beckerbuns

Okay, so this is the initial post in my new "story of a boy" blog.

Ricky is my 12-year old son. He has cystic fibrosis, bipolar disorder NOS, probably PDD-NOS, and various learning and social skills issues.

For a long time I've been thinking about consolidating my blog posts about Ricky that are in various places, into one place. So that's why I'm creating this bog, in order to do that -- and also to write new posts about how things are going with Ricky and what I am learning on this journey.

Perhaps others who stumble onto this blog can learn a little bit about what it's like to parent a child with special needs, battle the education and health systems, and things of that nature.

I wish I had something more witty to say, but for now, there you go.

Ricky came home from the hospital on Tuesday. This hospitalization was 13 days, tied for his longest yet. I got to see his latest x-ray. Clearly, the atelectasis (collapsed band of lung) was resolved. Yay! There still appeared to be infiltrates in his right lung, and maybe in his left, but the doctor is of the opinion that these are areas of bronchiectasis (narrowed, inflamed airways) that are not going to go away. :( It’s progression of the CF lung disease. While this does not surprise me, it does sadden me a bit. We had held the disease back for so long… He’s had some signs of bronchiectasis in his CT scans in the past but they’d resolved. Not anymore, maybe. I’m hoping that when we go back to visit Ricky’s pulmonologist in clinic, she’ll order another x-ray and we see if it DOES go away. But for now we are home, and it’s all good. Yay!

Thank you all for thinking of Ricky and for all you do for him.

Hospital

Ricky started up with coughing, wheezing and chest tightness last Thursday. The pediatrician saw him and put him on Biaxin and the CF doc upped the strength of his Advair inhaler. By Monday he was not better so I had him seen again when Misty was having her well baby visit. His lungs sounded crackly still and generally not well. Pedi got ahold of the CF doc and we were told to come Tuesday. So we saw the CF doc on Tuesday. Still crackly, lung function down 20%, and x-ray show partial atelectasis (collapsed lung) and minor infiltrates, both in the left lung. She said he needed to go into the hospital… But there were no beds available. So we were sent home with an rx for Levaquin and orders to start doing thAIRapy vest again (we’ve been doing the hand-held Acapella) and up the hypertonic saline treatments to 3x per day.

I heard “no news” from the CF nurse a couple of times Wednesday and then finally got a call around 3 in the afternoon… They had a bed. Not in the usual CF unit but they’ll move him over when there’s a bed there. So Ricky is in and doing fine. Misty and I left him once his IV was in. He’s been out for a year and a half. Guess it’s just time. Please keep Ricky in your thoughts, with wishes for a speedy recovery!

I just realized that it has been a long time since I updated on Ricky. He came home right after I sent the last update (late July) and has been doing great since then. His bipolar disorder is stable now, and what’s more, so is his cystic fibrosis. He has now not been in the hospital for the CF since April of 2006. One thing that has worried the doctors is that Ricky has not grown taller or significantly heavier in over two years. So he was recently evaluated by an endocrinologist for CF-related diabetes (which is similar to both of the standard kinds of diabetes, but also unique in and of itself). We are monitoring his glucose randomly, and so far he does show signs of gradually becoming insulin resistant. Back at the end of last school year, when he was going through all of the psychiatric problems, Ricky was removed from the special education school program he was in, because he actually attacked some staff while in a rage. Over the summer, he attended a non-public school program where he himself was attacked by bigger, meaner kids. I got him withdrawn from that program and ever since then, the school district has been trying to find an appropriate program. We have toured two schools, and liked the second one, which has a clinical and therapeutic component, and a great reputation. I recently got word that the district is going to try to get Ricky into the second program.

Andrew and Misty are both fine. Dave recently got word of a new promotion he is getting to a higher managerial position. I am a stay at home mom, but in July I transferred (from my old customer service job) to a position as a temp library clerk, working occasional shifts. I really like the flexible hours.

Guess that’s it from us for now! Thank you to everyone for the continued cards and letters. It has meant a lot to Ricky, especially with all of the trouble he’s been having this year.

I thought you all might want to hear what has been going on with Ricky.

Ricky is still at the children’s shelter because of his bipolar disorder and us being unable/unwilling to have him at home — not wanting to endanger the other children. We are having court this coming Friday. The social worker had to file another petition in order to keep Ricky at the shelter when the director of DFCS suddenly demanded that he go home if there was no petition, a few weeks ago, and this will be a jurisdiction disposition hearing (where DFCS would officially make him a ward of the court).

Well, since the petition was filed, we have worked hard via therapy and home visits to get ready for Ricky to come home. He has also had some med adjustments and I think that has made a difference. Anyway, Ricky was home ALL WEEKEND, the longest amount of time yet, and it went really well. I am so happy! I have missed him a lot and it seemed really sad to take him back to the shelter tonight.

So hopefully we will have him home within the next couple of weeks. At the hearing on Friday, the social worker is going to ask the judge for a continuation to give us just a little more time. Keep your fingers crossed that things continue to go well!

Ricky’s health has been excellent. At this point he has not been in the hospital since April of last year. He has put on some weight and I think he’s also grown taller. We will find out at one or another of his several upcoming specialist appointments. He has been having some knee pain, and the nurses at the shelter have been theorizing that this is due to growing pains. I have heard of this happening with boys around this age.

The last week of school, Ricky was kicked out of the public school he was attending because he had a rage and injured people. We have been battling with the school districts (our home one and that one) since then but meanwhile he is attending a very rough private school for kids with behavioral issues. It has turned out not to be a good environment for him so I have requested another IEP meeting to get him put into another school.

We want to thank everyone as always for sending cards, letters, and other things. It really means a lot to Ricky to get mail when we bring it to him at the shelter.

Last I updated, Ricky was having some psychiatric problems. Well, these things are still going on. He was in emergency psych at that time for a week, and then was at a short-term residential facility for a month. During that time, he had home visits, and wanted to get a Build a Bear, so he “sold” me his Toys R Us gift card from MACS and bought a Build a Bear at the mall. (I will put pictures in his MACS album.)

Ricky came home week before last, but only lasted three days before he had a rage again and had to be taken in an ambulance to the emergency psych unit again. From there he was put into the children’s shelter, where he is currently waiting for a longer-term residential psych placement. In a residential setting, Ricky can get the med adjustments and therapy that he desperately needs. The placement is made more complicated by Ricky’s medical needs, which necessitate a nurse being hired.

I wanted to say that we still appreciate the cards and letters that have been sent to the boys. I do make sure that Ricky gets everything that is sent to him, so please keep them coming. I am sure that he is homesick and sad, and getting mail can only help.

Thank you all, and I will keep you updated on Ricky’s progress toward getting placement.

We have been having a rough time with Ricky. Though his cystic fibrosis has been stable, he recently had a seizure and has been undergoing testing to find the root cause. Additionally, he is currently hospitalized for psychiatric problems.

Please keep Ricky and family in your thoughts. We are all having a rough time with this.

Ricky broke his right arm (luckily he is left-handed) in PE yesterday, 1/25/07, when he tripped over someone’s foot and fell straight forward, hyperextending his arm when he put his hand out to catch himself. He cracked his humerus right above the elbow. I’m having deja vu here, because almost four years ago, Ricky cracked the same humerus, a little higher up. I’m not a doctor, but from what I saw on the x-ray, this time it appears to be a worse break.

Luckily, I suppose, Ricky has a high pain tolerance, and did fine at the hospital. He’s got a splint on the arm now and will be going soon (hopefully tomorrow) to get a cast put on. He’s already getting the hang of doing everything one handed (even getting into his loft bed).

Just wanted to let you all know…

Ricky is doing well. He saw the pulmonologist on January 9 and his lung function numbers have not changed — still pretty good! The big problem he is having is his weight. He has been losing weight. If this keeps up, he’ll have to get a g-tube. We’re hoping to avoid this so he’s having lots of nutrition shakes and other things to get his weight back up.

Andrew and Misty are also fine… Growing like weeds. What happened to my babies!?

We were overwhelmed with the HUGE number of cards and gifts that Ricky got for his birthday and Christmas. Thank you all!

Happy new year everyone!