Monday, June 30, 2008
Saturday, June 28, 2008
I've been wondering if the heart repair would help Ralph's pulmonary hypertension and to what extent. I've been cautioned that the ASD was most likely only part of the problem, and possibly not a big part.
So I've been cautiously watching him over the past few days. Watching and waiting for a definitive sign that he is improving. Trying not to get my hopes up too high.
We have been struggling to keep the cannula on. He likes to rip it off and chew on it. He will do it whether I am watching or not! So naughty! Lately he has taken to ripping the stickers off of his face and trying to eat them! This really scares me. Did we get his heart repaired only for him to choke and die on a stupid face sticker?
He has also been ripping the tape off of the sat probe and eating it. For this reason I only monitor him at night. The alarm went off last night (OK, 4am) and when I checked him the probe was off and the tape was gone! In his mouth! So I guess I can only spot check his sats now.
I just put him down for his morning nap and I decided to spot check. 100%!!!!! He is pegged at 100% on 1/4 liter. He is not drifting around 97-100 but PEGGED! I'll take him down to 1/8 liter now and see how he does, but I'm considering this proof positive that we are seeing significant improvement.
I love to watch old movies with my older children. All kinds of older movies, from Gone with the Wind to the Rocky movies. I think of it as a sort of cultural education. It works even better when we all read the book first.
Several years ago Wesley and I read The Hiding Place. The book was terrific, but we had never seen the 1975 movie until last night. I was shocked and delighted to see a scene where Corrie TenBoom was leading and teaching a beautiful group of children, some of whom obviously had Down Syndrome. I must have forgotten this part of the book!
A little later on in the movie, Corrie was being questioned by a Nazi officer about her "work." He is digging for information on her role in hiding Jews. He didn't want to hear about her watchmaking so she responded by saying, "Oh, then you're referring to my work with retarded children?"
Here is the exchange recorded in the book:
"Your other activities, Miss ten Boom. What would you like to tell me about them?"
"Other activities? Oh, you mean- you want to know about my church for mentally retarded people!" and I plunged into an eager account of my efforts at preaching to the feeble-minded.
The lieutenant's eyebrows rose higher and higher. "What a waste of time and energy!" he exploded at last. "If you want converts, surely one normal person is worth all the half-wits in the world!"
I stared into the man's intelligent blue-gray eyes: true National-Socialist philosophy I thought, tulip bed or no. And then to my astonishment I heard my own voice saying boldy, "May I tell you the truth, Lieutentant Rahms?"
"This hearing, Miss ten Boom, is predicated on the assumpition that you will do me that honor."
"The truth , Sir," I said, swallowing, "is that God's viewpoint is sometimes different from ours- so different that we could not even guess at it unless He had given us a Book which tells us such things."I knew it was madness to talk this way to a Nazi officer. But he said nothing so I plunged ahead. "In the Bible I learn that God values us not for our strength or our brains but simply because He has made us. Who knows, in His eyes a half-wit may be worth more than a watchmaker. Or- a lieutenant."
Indeed. She articulates her view more fully in this quote: Many years ago I worked in Haarlem [in the Netherlands] among mentally retarded people. I had several Bible study clubs with them it was great work. You and I need the Holy Spirit to understand eternal truths. The foolishness of God is the greatest wisdom. We cannot understand it with worldly wisdom. . . . The mentally retarded people had very little wisdom of the wise. But the Holy Spirit gave them a great deal of the foolishness of God, which they accepted much more easily and without doubts. They also understood it. Then I saw the truth of the Word that we must become like children, so that we can enter the kingdom of heaven. I could never tell them too much of God's love. . . their faces was radiant.
How sad and ironic that the Netherlands, a country with a rich Christian heritage and Corrie's homeland, should be the first to legally embrace euthanasia.
Friday, June 27, 2008
Tuesday, June 24, 2008
Ralphie's been in his own room this evening. He is happy and playful as always. He has been very good-not tearing his cannula off, not tearing the sat probe off, not tearing the IV off.
He was taken downstairs for an x-ray earlier. The nurse took him down laying on a pillow in a wagon. Apparently, he enjoyed the ride quite a bit! Later he had an EKG. It was some trick to get him to lie still and not pull off any of the many wires.
I took him to the playroom for awhile, but his sats were a little low so I took him back to his room. I then noticed that his oxygen tank was never turned on! He tried to laugh when we played catch with a squishy ball but has no voice. I can't wait to hear him giggle again.
I asked the surgeon if he made any pressure measurements after the device was in place. He did, but said that there was no real difference. However, I'm sitting here tonight watching him sleep and watching his oxygen sats and I can tell somehow that he is better. I don't always trust my intuition anymore, but...I really think this time is different. Time will tell.
Everything went well! The device closure was very straightforward, acording to the doctor. Yay! No open heart surgery! I have not seen Ralphie yet, but I think he will be out of recovery very soon. Thank you all for your generous prayer support. Please pray for continued healing for his lungs and for the pressures to return to normal. We hope to be going home tomorrow.
The nurse from the cath lab called at 12:51pm and said they were going ahead with the device closure. 14 minutes! Unreal. I can't believe it only took 14 minutes from the time they took him. They must be quite certain that it will work, huh?
After a crazy morning of pre-op stuff, Ralphie was taken into the cath lab at 12:37pm today. The doctors and nurses have all commented on how much weight he has gained and how healthy and energetic he looks!
After they do an echo they will make a decision on whether to attempt a device closure of his ASD. They will call me and let me know at that time. It should be about an hour. I'm going to get a bite to eat now. I didn't think it was fair for me to eat breakfast when Ralph couldn't have anything!!
Pray for God to guide the surgeons hand and for a successful device closure. I will update this when I have more information.
Monday, June 23, 2008
Sunday, June 22, 2008
It is wire mesh shaped into two flat discs and a waist in the middle with fabric inside. Think of a skinny yo-yo. The whole thing collapses and is inserted into the heart through a catheter! The surgeon opens it up inside the heart with one disc on either side of the hole to close it off. Who engineered this thing? I hope they are getting paid handsomely! How did they form the wire mesh just right so that it can be collapsed and open up into this special shape? How many sweet little babes have been spared open heart surgery? These are the kind of things I think about.
So, if this procedure works we may be coming home Wednesday evening. If not, open heart surgery is scheduled for Wednesday. Which reminds me of "Gone With the Wind," and the famous line of Scarlett's: "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."
So do I pack for two days or do I pack for a week?
Saturday, June 21, 2008
Thursday, June 19, 2008
Finally! A haircut.
He looks so much older now. Kind of reminds me of Wesley's (my oldest, and oddest) baby pics!
Monday, June 16, 2008
- I can hardly believe that Ralphie's heart repair is happening next week.
- I haven't crossed off much of my summer project list.
- Are we losing our humanity in the pursuit of comfortable, convenient, pain-free lives? What would life be like with no more DS babies? Abortion rates for babies prenatally diagnosed are reported to be over 90%. Now this is sure to increase that rate.
- When will our baseball games stop getting rained out?
- I really hate doing dishes.
- The house seems really empty with only six children and no daddy. Richy is in England. Chipper is at camp. Dad is in Arkansas.
- Ralphie is getting cuter and more fun every day. (I really do sit and think about this.)
Sunday, June 15, 2008
Ralphie also said his first word this week! Thursday night I set him down in the family room with daddy and then I left the room. Ralphie started shouting "MAAAAAAAA" over and over. I wondered what was going on, so I came back into the room and he stopped yelling. Daddy and I just looked at each other like, did you hear that? I left the room again. Ralphie started yelling "MAAAAAA" again! So, it is now official, Ralphie says Ma. I'll take that!
Today Ralphie sat in a highchair at a restaurant for the first time. I know, what on earth were we thinking? Only a little over a week until his surgery and we take him out to an enclosed public place. Insane. But, he did great! He ate some new foods like mandarin oranges and jello and left a huge mess behind. He's come a very long way.
Ralphie's great-grandma's birthday is today. Isn't she beautiful?
Friday, June 13, 2008
I took Ralph to the cardiologist this morning. I always love to take him to see Dr. M, even when the news is not the best. We love Dr. M. He has a positive and loving attitude toward us and our son.
He came to the hospital around midnight the night that Ralph was born. He spent some time with us that night explaining what was going on with Ralph's heart. He drew a great big picture of a heart and labeled it nicely, all this in the middle of the night.
Over the next month of so, he would come to the NICU to personally do Ralph's echoes. He never asked me to leave and always explained everything to me as he went along. I didn't realize how spoiled we were until we transferred to the big city children's hospital later on. There a tech would do the echo and we had to wait at least a day for the doctor to read it and report back.
Today's visit was a good one. First, all the nurses are in love with him, of course. Today they were so surprised to see him so strong and healthy and energetic. It was nearly impossible to get good O2 readings and blood pressures because he wouldn't sit still! Dr. M was all smiles as he came in to do the echo. He always asks about how daddy is doing if he isn't with us.
The echo looked great! Ralph's left ventricle is smaller that last time! His tricuspid valve regurge is barely detectable!! This means that he cannot measure the blood pressure in the lungs. This is a good thing! I can't stop using exclamation marks!!! He showed me Ralph's ASD also.
He said that he thinks that the device closure, which is planned for June 24, will be successful, based on the appearance of the hole. There appears to be sufficient structure around the ASD in which to anchor the Amplatzer device.
It was so good to hear these words. In my experience, doctors never want to make any predictions. Ralph has open heart surgery scheduled for June 25, just in case the device closure does not work. I know that plenty of babies have had open heart surgery and they do just fine, but the thought of it is enough to break my heart. I'll be one happy mommy if we get to cancel that surgery!
Isn't this great news? Dr. M's P.A. asked me to call her and let her know how everything goes on the 24th. You see, we will be back at the big city children's hospital. The doctors there will call our cardiologist here with results, but she asked me to call her personally. She said she would rather hear the news from me. Aren't we blessed?
On a convicting note, a funny thing happened in the waiting room today. A woman that I recognized checked in at the desk and sat down by us. She was one of the doctors we met at the NICU. I still remember her negative comments to me and they still hurt. I mean, really, don't EVER, EVER tell me that my son will not be able to do something! Who is to say what is impossible?
My oldest son, who came along to help me out today, asked me if I was going to say hello to Dr. Sourpuss. I told him that I was still holding a grudge against her. As soon as she sat down by us, however, Ralphie started flirting and babbling and waving to her! My son whispered to me, "I guess Ralphie doesn't hold a grudge." No, he doesn't. He has a lot to teach me.
Wednesday, June 11, 2008
Ralphie had his Rainbows teacher and physical therapist over to the house today. It is nice to have physical therapy that makes house calls! Especially with a little guy who is so susceptible to respiratory infections. I'm wondering if families in other parts of the country have this luxury of in-home therapy. We were discussing his progress over the year when I realized that I missed the anniversary of Ralphie's homecoming.
On June 9, 2007 he finally escaped from the NICU and got to come home for the first time. (If you want to read about the things we went through during those first 7 weeks of his life, you can visit www.babyhomepages.net/ralphie until I get his story placed here on this new blog site.)
I remember that daddy had to drive 3 hours that day with a brand new car seat to come get me and Ralphie. Ralph had taken a car seat test the day before in a crappy hospital car seat and the charge nurse was not about to let us out of the hospital in anything else! This was a real letdown to daddy since he spent hours picking out the perfect new car seat that very morning. All of a sudden it hit us - as soon as we walk out the door, he is ours. So we left the building with two seats, switched the baby over in the parking garage, and dropped the hospital model off at a non-profit org. Naughty, huh? It was such a stressful day and I was hoping that someday I'd look back and be able to laugh. I'm not there yet. Especially since we are headed back to the same hospital in two weeks for heart surgery.
So here we are after one year
- Ralphie can stand up straight and tall with a tiny bit of spotting. I have to pull him up, but he can do all the work after that.
- He can hold his own bottle and he can feed himself finger food.
- He can army crawl and is toying with the idea of crawling on all fours.
- He is babbling and jabbering, no words yet, and can wave "hi" and "bye"
- He weighs 20lbs!!! I have no idea how tall he is - I just never seem to care enough about this to remember.
- He is on 1/2 liter of oxygen around the clock.
- He takes 4 medications: Sildenafil, Lasix, Potassium and Sodium.
There were moments that I didn't know if we would make it this far. Pulmonary Hypertension is so scary, I walk the line between "no expectations" and "high expectations." It can be maddening at times.
Praise God for bringing us this far. Praise God for this life changing experience. Praise God for the privilege of raising Ralphie.
It's nearly 2pm here. My Richard will be taking off soon. He is headed to England for an educational tour. We discussed this trip last year, but the price tag was too much for us to handle. Then Ralphie came along and the expense of a trip like this was out of the question.
Shortly after this past Christmas I got an interesting phone call from the tour coordinator from Richard's school. A family from the school wanted to contribute some (a lot) money toward this trip for him. A family who wished to remain anonymous. Would we accept?
Of course, we accepted this generous offer. Richard went out and got a part-time job and participated in fundraisers at the school to make up the rest of the money. He actually has three jobs - picking up chairs at church, umpiring for rec league baseball, and Papa Murphy's pizza. I'm quite proud of him.
Pray for travelling mercies for Richard and the entire group. He has the camera, so I won't have any new pictures for the next 10 days.
Tuesday, June 10, 2008
Monday, June 9, 2008
Today was my first day away from Ralphie! I don't believe I've ever been so far away from him before...but he did just fine at home with big brother today.
I spent the day in Manhattan, KS. You know you are from Kansas when you think of Manhattan as the home of K-State and NOT New York City! Richard had a baseball exposure camp today. Exposure meaning the players show off what they can do on the field. It was a great learning experience for both of us. He got a chance to play with some very fine baseball players and compare his skills to theirs. Now he know what to work on for next season.
It felt strange to be back in Manhattan for the first time in nearly 20 years. Much has changed! Some of the old joints are still around...Last Chance Saloon, Bushwacker's, Varney's. I just wish we had more time to explore. All in all...a very relaxing day.
Saturday, June 7, 2008
Rosie has a cough this morning. A nasty, croupy, scary cough. How in the world am I going to keep her away from Ralphie? His surgery is just a little over two weeks away.
I wish I had a safe room for him, like little Parker at http://www.prayingforparker.com/. This sweet child has pulmonary hypertension and Down Syndrome, just like Ralphie, among other things. They try to keep him in a special room where anyone who comes in to see him has hands washed and sanitized.
Say a prayer for Parker today, if you would. He has been through major surgery lately and his family is facing financial ruin from the TREMENDOUS bills. They are not able to find help because they are not poor enough...yet. They made the mistake of trying to pay their bills.
Each year their hospital raises funds through the Children’s Miracle Network. We are talking BIG money here. And as part of their promo they talk about how your ability to pay makes no difference to them. Yet they get collection notices often. Turns out the funds are reserved for those with no insurance and people from other countries. It kind of makes you feel like a dope for being responsible enough to carry health insurance.
Thursday, June 5, 2008
Today Ralphie and I had lunch with a dear friend and took a tour of the Bright Spot for Health. I've been dying to check this place out for months now. The pyramid is visible from the highway nearby but not everyone who drives by knows what this place is all about.
Their definition of health is having the reserve to do what you need to do and want to do with energy and enthusiasm. Well, Ralphie's reserves have
always been low and I'd like to see what I can do to help build them up. I've always been a believer in complementary medicine - It just makes logical sense to me. I don't get the pyramid thing, though. A little too weird, even for me!
My dear friend and I have been close for over 6 years and I love her dearly. She just happens to have a daughter in her 40's who has Down Syndrome. I'm happy that God brought them both into my life so many years ago. I'm certain that it prepared me, in a way, to welcome Ralphie into our family.
Wednesday, June 4, 2008
I just got done ordering my coupons for the week! We don't take the Sunday paper so I never get to clip coupons. That's just as well because I've been ordering coupons from http://www.thecouponclippers.com/ for over a year now. Yes, you can BUY coupons!
So every Tuesday night I stay up a bit late and check the Dillon's ad online. The new ad for the week is normally posted sometime around midnight, give or take. I open another window and check for coupons for any items that are on sale that I would actually use. For instance, this week VanCamp's Pork and Beans (daddy's favorite) are 2 for $1. I ordered 5 (the limit for this product) coupons valued at $0.50 off 4 cans. Since Dillon's doubles coupons up to $1.00 I get 4 cans for $1.00. That's a "stock up on it" price!
This week I'm also getting practically free toothbrushes, great for donating to shelters and such. I'm getting spoiled. I rarely ever pay more that $1.00 for a box of name brand cereal. I grab the good coupons, wait for the sale and stock up. I have to hide these things, however! The kids go a little nuts when I bring home a new load of their favorite cereal!
Last week I stocked up on $0.39 Campbells Tomato Soup and $0.50/pound pork sausage. A few months ago it was canned tomatoes and tomato sauce for @ $0.20. Since I stock up the freezer with marked down ground beef or turkey and I use dry beans, I can whip up a batch of chili whenever I want for next to nothing.
Yeah, I'm cheap. I'm proud of it, too.
Monday, June 2, 2008
I took Ralph to have some blood drawn today. He needs his electrolytes checked again now that he is fully recovered from the dehydration of a couple of weeks ago. His sodium levels were dangerously high at that time. Now we need to know if he should restart his sodium supplement.
I also wanted the doctor to see Ralph because his hands are peeling. Sheets of skin have been coming off for a few days now. Turns out that it may be an after effect of the dehydration or possibly another type of infection. Not terribly worrisome. At least his lungs are still clear as a bell!
Oh, the milestone...Ralph finally tips the scale at 20 lbs.!!! Ok, he had on a diaper...but I say it counts. I'm sure the people in the waiting room heard me yell YES!! when I saw the scale read 20.0 right on the nose.
His heart cath is in three short weeks. A lot is happening between now and then so I'm sure the time will fly. Richard will be leaving and returning from England. Chipper will be leaving and returning from camp. Baseball games gallore! James will be in and out of town. June 24 sounded like a long way off last month...now it's just right around the corner.
God willing, no more delays.