Guiding Your Special Needs Child

No matter how long you do this, you always come across “new” stuff. (”New” because it’s new to me.) I just stumbled across Disabilities Books. It seems to have been around since 2004. The site is divided between “books of interest to PARENTS of children with disabilities, family members, and professionals who serve children and their families” and “books of interest to ADULTS with disabilities, family members, and professionals who serve adults and their families.” I could go broke in most bookstores, but just about every book I come across in the parents section turns out to be something I want–except for the ones about Massachusetts. I’m sorry, I love Cape Cod, but I have no desire to live in Massachusetts.

My wife just shared with me an online video called 99 Balloons. I cried through eating lunch, and it wasn’t because the food was bad, but because I watched the video while I ate. Good idea to watch the video. Bad idea to eat while doing so. You can also see the original blog that chronicled Eliot’s journey, also called Ninety Nine Balloons.

Anyone who looks at this site regularly will notice I haven’t updated it much in recent months. That’s partly because of just being overwhelmed, but it’s mainly because of the nature of writing for me. I think I’ve mentioned in some of these posts that I have never in my life experienced writer’s block, until Hannah’s challenges manifested. It’s not that when she’s sick, I can’t write. I just haven’t been able to concentrate enough to write.

Really, when you get right down to it, I’ve been exhausted. The nursing at home now is a lifesaver, but after four years of taking care of Hannah 24/7, I am still trying to get over exhaustion.

Basically, these days I can only write when I feel good, and I haven’t felt good in a long time. So when you don’t see postings, it’s not exactly bad news, but it’s not good news.

Still, I’ve been mulling over something the last week or so, and I want to share it, for whatever it’s worth.

I haven’t felt abandoned by God, but I have to admit to having what turns out to be a common response to a commonly quoted verse (1 Cor. 10:13). If you’re not familiar with it, it says:

No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

Yes, it’s Bible. But if one more person quotes it at me, I am likely to see how much he can bear. The common response? “I wish God didn’t have such a high opinion of me.”

So, I was driving to work and listening to a radio station I don’t usually tune in much, Praise 96.3. I enjoy Southern gospel, but I am nowhere near familiar with the singers, groups, or popular songs within that genre. So I don’t know if this is a wellknown song or not. But it certainly struck me.

The song is about the story of Jesus and the raising of Lazarus, found in John 11:1-43. It’s a familiar story, and you can look it up if you want to refresh your mind of the details.

The focus of this song, though, was on the (for lack of a better term) preconceived notions of Mary and Martha regarding the proper timing for God’s response. “Please, God, heal Lazarus.” “Please, God, get Jesus here on time.” That sort of thing.

The passage says they sent a messenger. Since there is some disagreement about where Bethany was located, it’s unclear how long a time might have passed, but in any case, verse 6 says, “Yet when he heard that Lazarus was sick, he stayed where he was two more days.”

When Jesus arrived, Mary and Martha each said separately, “If you had been here, my brother would not have died.” The implication, whether in lament or in chiding, is, “You’re too late.”

The song, however, says in the chorus, “Four days late, and right on time.”

I have to admit, I have a problem with this one. And yet, it lifts me up. Maybe I don’t know it all. Maybe I am like Mary and Martha and every other reasonable person hanging around that grave. It’s reasonable to think that it’s too late, the prayers haven’t been answered, or the answer was “no,” and I just have to learn to live with it.

It lifts me up to remember how often, how frequently, somebody in the Bible thought they knew how the story ended, and they were wrong.

I just wish I could remember it more often.

Hannah went to the hospital this time on Aug. 22 (the night before classes started again this fall at the college where I teach–somehow Hannah knows that schedule). She was having respiratory problems, and since she had been on Cipro for respiratory stuff earlier in the month, the pediatrician thought she needed to go to the hospital for some IV antibiotics.

I’ll summarize how the week went, since you know from the last post that she just came home from the hospital.

They started her right away on two different IV antibiotics, aimed at two different major classes of bacteria. They also took some cultures before those would have a chance to affect any bugs, but when the tests came back (including blood work), it didn’t look like she had a bacterial infection. White blood cell count was a little higher than you would expect it for a virus, a little lower than you would expect for an infection, but it seems more like a viral signature. So they stopped the antibiotics to see if they could tell any more about what was going on.

Her fever shot up to 104.9. That’s even more significant when you consider that her normal temp hovers around 97.5.

I honestly thought we were losing her that night. Her tracheal secretions had gotten so thick and glue-like that I didn’t see how she could breathe through it.

They got aggressive with respiratory treatments and started an antibiotic again, and over the next couple of days her fevers became less, and her secretions thinned out.

During all this, she kept blowing her IVs. Once it took an hour and a half to get another one started, because she has such tiny veins and so much scar tissue.

Finally, she blew the IV one more time, and the doctors said the most recent test indicated something that might respond to Bactrim, an oral antibiotic that she has taken before. Subsequent doses of that at least did not lead the fevers to come back, and progress continued.

Bottom line: we got to come home today, with some new medicines, including Robinul (to thin secretions), Tobi (an inhaled antibiotic that is very expensive) and Bactrim. We are very glad to be back home.

Next (maybe tomorrow), I’ll post the article I’ve been thinking about for a few days.

I’ll catch up. Really. But I haven’t even had a chance to post about the last couple of times Hannah has been in the hospital. She went in last Friday, and is going home today. So in the spirit of “doing what I can,” I’m posting this brief note, and will do more of an update later, plus post an article that I’ve been mulling over for several days.

I haven’t posted in a long time, but rather than catch up on Hannah news right now, I wanted to share a poem that Cate wrote for Hannah a long time ago. The printout I have is dated July 2, 2005.

I’ll be there

I’ll be there to hold you anytime at all.
I’ll be there to catch you anytime you fall.
I’ll be there to love you, and to help you cope.
I’ll be there to help you anytime you need hope.
I’ll be there to listen, and sometimes I’ll talk.
I’ll be there whether you want to stay or walk.
I’ll be there to just be there and to have your back.
I’ll be there to reassure you, especially when it’s self-esteem you lack.
I’ll be there to be your “forklist” when the “baggage weighs a ton.”
I’ll be there to know and learn about you, and life will be fun.
But don’t ever put yourself down, baby girl, love yourself a lot.
You don’t need to be like me, your self-esteem a dot.
You’ll never know how much I love you, or how hard for you I’ll fight.
Or how mushy Dad and I get at the funny positions you slept in at night.
But most of all, what I’ll never forget is the look in your eyes.
The way you look at me with that look of stormy skies.
So for you, my baby sis, I’ll be there no matter who when how why or what.
If you get in trouble, I’ll be there to smack your little butt.
But I love you nonetheless, I love you forever and more.
I’ll love you forever and I’ll help you out, hey, what are sisters for?
Anyways my point is, I love you, no matter what.
You’ll be the best baby sister; I can feel it in my gut!

Once again, it has been a little while since I posted, but it’s been a fairly good time this time. No hospitalizations; getting Hannah’s nursing schedule set; getting into a new routine after ending a semester.

Also, partly, I just haven’t had anything to say. Life continues to be interesting, but honestly the greatest challenges have come from something other than Hannah. Juggling having teenagers on one side and an elderly parent on the other makes us not just the sandwich generation, but a panini sandwich; Hannah just adds spicy mustard.

I can’t help but wonder how other people manage it, because I know how close to the edge I get sometimes. Nevertheless, I am thankful that Hannah has continued to be hospital-free.

Today, the benefits of nursing were very obvious, since for the first time in months we took Hannah with us to see my mom on Memorial Day. One of our very capable nurses went with us, and it made a huge difference. It will always be a challenge traveling with Hannah because of the mass of equipment that has to go with her. But it wasn’t nearly as exhausting as it used to be, and my mom got to enjoy visiting with Hannah, and we got to enjoy eating together.

One really neat thing we’ve noticed more and more: Hannah is obviously hearing and understanding what her nurses tell her. Today’s nurse in particular will tell Hannah what he is about to do, and we heard him say, “Now, hon, I’m about to change your trach, so you need to hold really, really still.” And Hannah, who usually moves constantly, got really, really still!

She also reacted appropriately to a kidding remark. The nurse said, obviously jokingly, “Hannah, you want me to punch you in the nose?” And Hannah turned to him on her non-preferred side (she looks to her right probably 90% of the time) and gave him the evil eye. He then offered to let her punch him in the nose, and she started waving the correct arm, apparently trying to reach him.

I hope at some point we can find a way for her to communicate with us, because I’m fully convinced she knows what we are saying.

Tags: update, Hannah, communication, interaction

It has been months and months since I posted. Tonight I begin the process of catching up any readers who still visit these pages, as well as any new readers who stumble across it. We have gotten email from a lot of people via TrisomyKidsAreSpecial.com that we just flat out have not had time to get to. I have saved all of them, however, and after this week is over I’ll start catching up on those also.

In brief, here is what has happened since last August:

• Hannah got sick in early- to mid-October, winding up in the hospital on Oct. 31, where she stayed until Dec. 23 for a grand total of 52 days.
• She got a new decoration: she now has a tracheotomy to ease her breathing. This has necessitated a great deal of adaptation.
• Because of her long sickness and the addition of the trach, her doctors would not let her go home until we had home nursing in place.
• We started out with nursing at home for 8 hours a day, 5 days a week. That quickly turned to 24/7, since it quickly became obvious the professional nursing care made a huge difference in keeping Hannah relatively healthy and out of the hospital.
• However, we have had a lot of scheduling issues, and currently are in the midst of changing nursing agencies–not because of any problems with the nursing, but rather with getting all the paperwork needed to be able to get insurance to work with the agency, and to get the agency to work with the insurance.

As I write this, we have lost two of her three main nurses. Of course, this is going to come up when I am in the last two weeks of a semester (the busiest time of the year for me professionally) AND when Hannah’s botox treatment that keeps her from biting herself is wearing off. Just stunning. As a result, we once again have 24-hour care of Hannah, at least for a couple of days, and it is already wearing me out.

Not only did Hannah’s health benefit from the 24-hour nursing, but also for the first time in over four years I have been able to get more than two nights at a time when I could sleep all night. We are just starting to recover from a situation our stress counselor says produces all the symptoms of post-traumatic stress disorder, and now we have to start over.

Fortunately, the new agency was out today for the initial visit, and they seem extremely competent, helpful, and organized. In the long run, this is going to be good for all of us, I think.

Over the next few days, I’ll flesh this out a bit more. If you’re just finding us, please check back. If you have been wondering where we were, I’ll catch you up. If you have been waiting for an email from us, I’ll get back to you within a week of this post.

Hannah is at home–came home a week ago, in fact. She was in the hospital for almost exactly two weeks. I’m sorry for the delay in posting this, but we’ve spent the whole week taking care of her (as you’ll see in the next paragraph) and catching up on the rest of life.

She was not “well” yet, but had reached a point where she didn’t have to be on IVs, and after two weeks they start getting nervous about her picking up new infections from somewhere in the hospital. So she has continued to be on oxygen (just about constant for four or five weeks now, which is not usual for her), and continued taking high-powered antibiotics, including some through inhalation with a nebulizer. So, while it’s good to have her home and to be home ourselves, we are now doing everything the nurses and respiratory therapists were doing.

We spent the day yesterday at the doctor for a followup visit, followed by trying to take care of a day’s worth of normal domestic requirements. Today, I finally had time to make a post.

But I think she is better, although we still have at least another three weeks of inhaled antibiotics to go, and we will be starting on a new regimen of regular preventive therapy. And she will get a bronchoscopy next Thursday, where they go into her lungs with a cable and look around, plus wash her lungs out while they’re down there.

As a matter of fact, I actually have an update since yesterday. They told us to wean her off the oxygen as long as her stats stayed at 90 or above. We did that, and she is already on room air, running at 97 with no help from oxygen! Yay! I think she did this whole thing just so she could see her favorite respiratory therapist, and Hannah didn’t know the therapist doesn’t work in the hospital anymore. Fortunately, she works in the pulmonologist’s office. They hooked up yesterday, so today Hannah is OK with letting her oxygen get normal. (Surely you know I’m kidding about “letting it get normal,” but she did get to see her buddy.)

Hannah has just been moved to a regular floor from PICU. Her oxygen is getting better too, and her pulse rate indicates she’s really relaxed. I hate to say it, but I think she may have been constipated–after she finally had a dirty diaper (thanks to the antibiotics for the ear infection), her pulse rate dropped, and her oxygen started getting better. Maybe she was just imitating a teenager, and I will leave it to your imagination what that means.

I’ll be staying with her at the hospital tonight.