Archive - December, 2007

Christmas in New York

December 29, 2007 in Lana's Journal with 0 Comments

We went to upstate New York for Christmas this year and had a wonderful time with Dave’s parents, brothers and sister, the in-laws, aunt, great-grandma and all the kids (18 people total!). Lauren had great fun playing Wii with her cousins (she is a crazy bowler!) and snowmobiling with Daddy. Carmen was content and happy and especially liked being held by her 7 year old cousin, Dakota. She even fell asleep on his shoulder! Dakota was very sweet with her and said he didn’t mind when she drooled all over him!

We had a bit of excitement when Carmen pulled her NG tube out and we had to put it back in. It kept coming out her mouth so Grandma decided to stick her finger in Carmen’s mouth so she could watch where the tube was going. Well, Carmen bit Grandma’s finger and wouldn’t let go! I think Grandma won’t be trying that tactic again!

Christmas morning Lauren woke with 104 degree fever and double ear infections. I was so sad that Lauren was feeling so badly on Christmas morning. I also started feeling a cold coming that day. Ironic thing is that I was so worried that someone there would be sick and Carmen would catch it. Instead, we brought a bunch of sickness and I sure hope no one went home sick! Carmen now has a stuffy nose but seems to be doing OK. Lauren is feeling much better now that the antibiotics have kicked in.

Christmas with Dave’s family always involves lots of yummy food and present frenzy! Carmen got much needed sheets, blankets, and a humidifier. Aunt Trish framed a poem for Carmen’s room about God delighting in His creation. Grandpa C. found a Native American doll that looks like Carmen and gave it to us. Lauren came home with princess stuff, books, art materials, clothes, etc. I think her favorite present was a set of plastic caboodles boxes. She is quite the organizer! Aunt Trish gave Lauren a lovely book about a little girl in Guatemala called God Controls the Storm. We have had quite a few guests in our home this year and our lack of appliances must be obvious! We got a crockpot, pod coffee maker and egg cooker/toaster. I am very excited about our new appliances!

Dave’s grandpa passed away this summer and Dave’s dad gave each of his kids one of Grandpa’s WWII medals for Christmas. Dave was happy to receive his Good Conduct medal. There were quite a few tears when the medals were opened as Dave’s Grandpa was a truly great man. I am comforted by knowing that when Carmen goes to Heaven, her great-grandfather will be there with her.

Dave’s brothers and sister decided not to exchange gifts this year. Instead they pooled their money and gave it to us for Carmen. This meant a lot to Dave and me.

Despite all the sickness, we had a nice Christmas. We are happy to be home and have Carmen’s nurse at night. Carmen kept us up a lot and reality is that life is easier at home with help at night.

I’ll share a funny story about my brother, Kevin. Recently, a movie came out called Charlie Wilson’s War starring Tom Hanks and Julia Roberts. Charlie lives in a small east Texas town where we grew up and Kevin still lives there. Couple of years ago, Kevin worked at Subway and Charlie often came in for subs. Kevin got to know many of his customers, including Charlie. When Kevin bought his first home, a cute little 2 bedroom house, he invited Charlie to his house-warming party. Charlie didn’t come but he gave Kevin a print of the U.S. Capitol and a signed card. My mom saw the print and card in Kevin’s house and realized that Kevin had no idea who had had invited to his house! Kevin is now excited about his famous person friend!

In closing, I would like to thank my dad and Nancy and Nicole’s friend Imelda for their very generous gifts.

Carmen is 17 Months Old Today

December 20, 2007 in Lana's Journal, Tay Sachs with 0 Comments

Today is Carmen’s 17 month birthday! We celebrated by staying home! Sometimes the best days are ones in which I just rock Carmen and play dolls with Lauren.

We now have night duty nursing, 10 hours per night/7 days per week. HOORAY! Dave and I are finally getting some rest and Carmen is doing better because her nurse is doing Chest PT (Physical Therapy) at night. Today she sounded amazingly better. When her nurse showed up tonight, Carmen was in bed and smiled and laughed out loud when she came in and said hi.

We got a suction machine today. Carmen sees her pulmonologist in January and I think we will discuss medication to reduce drooling so that she doesn’t aspirate on saliva.

Carmen is doing well with the NG tube and continuous feedings. I managed to take both girls to Carmen’s neurologist appointment yesterday, with Carmen attached to the feeding pump. I was quite proud of myself! I set Lauren up with a purse full of Polly Pockets and she entertained herself for most of the visit. We are debating whether or not to start Carmen on anti-seizure meds. She is only having mild seizures and her neurologist didn’t think we needed to start anything now to control seizures. But, he suggested we try for a week or two and see if the meds might “wake” her up a bit and make her more responsive. Granted, making her more alert might make her fussy, so we shall see how that goes.

Today was Lauren’s 4 year old appointment and I am happy to say that Lauren has cracked the 30 lb. mark! She is now 31 lbs. 5 oz. and 40 inches tall! Carmen is somewhere around 25 lbs. at 17 months so they are built really, really differently!

Lauren was Mary in a play at pre-school yesterday! Her friend, Jack, was Joseph and I imagine that was just fine with Lauren. I hear good things about Jack from time to time! He’s a cutie-pie!

Tonight Dave and I met with a Hospice Social Worker who counsels parents dealing with the impending loss of a child. We had a good visit and got some very solid advice on helping Lauren deal with her sister’s disease and inevitable death. Lauren knows that Carmen has a disease (we decided not to use the word “sick” so that Lauren will understand the difference between what Carmen has and a common cold, advice we got from a family dealing with Tay Sachs, thanks Laurie!). But, like any 4 year old, Lauren does not truly understand what is happening. After we brought Carmen home from the hospital last week, Lauren commented that Carmen doesn’t have a disease anymore, that she got better in the hospital. I explained that Carmen is doing better with eating but that she does still have a disease. It’s tough knowing what to say. Lauren needs some information but we don’t want to over-do it and scare her. I pray for wisdom!

Thank you to Monica from Hospice who watched Carmen and played with Lauren today. And, to my friend Nicole, who sent over dinner!

Home

December 16, 2007 in Lana's Journal, Tay Sachs with 0 Comments

We are home! We got home about 7pm last night and a nurse came over at 8pm to make sure we were all set up. Dave slept in Carmen’s room to make sure her feedings went OK. Hopefully we will get private duty nursing at night within a few weeks. This is a HUGE prayer request. The hospital’s case manager talked to Carmen’s insurance case manager and nursing care may be a possibility. I think this might save my sanity to be able to sleep at night.

As of now, Carmen is on 22 hour per day continuous feeds. This means she is attached to her feeding pump for 22 hours per day. The pump is portable but going out and about will get more complicated with each new intervention and piece of equipment. The doctors were hoping (as were we) that Carmen could handle 12 hour night feeds with 3 short bolus (fast) day feeds. But, she chokes and gags on faster feeds so we are going with the all day/night feeds. She is starting on Prevacid for reflux so maybe that will help. One thing we learned our first night home is that Carmen has to have her diaper changed at night, even if she is asleep. Feeding her all night long and not changing her results in quite a mess!

Lauren is highly interested in Carmen’s NG tube and equipment. She is very happy to have Carmen home!

Our medical distributor gave us vanilla Nutrin Jr. so Carmen smells quite sweet!

We hope that within a month Carmen will be back at the hospital to get a G-tube (tummy feeding tube). This will be the same set-up (feeding pump) but will be easier since the tube will be in her tummy and not out her nose.

Jesus in her Heart

December 15, 2007 in Everyday Family, Lana's Journal with 0 Comments

We are sitting here waiting to be discharged. I just had the honor of meeting Carmen’s little roommate’s family. I mentioned this sweet little girl before. Her parents have three adopted children, two medically fragile. I am humbled by their attitudes, love, and complete unselfishness. We did not purposefully adopt a terminally ill child and I am in awe of people who choose to care for very sick children. I think I have a lot to learn about giving of myself. I am becoming a very different (hopefully better) person because of Carmen.

Dave called last night to tell me that he and Grandpa took Lauren to our church’s Living Nativity. Afterwards, Pastor Joey did an invitation and Lauren raised her hand to accept Jesus as her Savior! She whispered the words as Pastor Joey prayed and then went up with Dave to talk to Pastor Joey. She is barely four years old but I think she meant it. I cried when Dave told me!

Hello from the Hospital

December 14, 2007 in Lana's Journal, Tay Sachs with 0 Comments

Carmen has been in the hospital at Children’s since Tuesday night and is doing well. She has an NG tube (nasal feeding tube) and I practiced putting it in this morning. Basically, it’s a long flexible thin tube that has to be put down her nose and then tested to make sure it’s in her tummy, not her lungs. To test, we will push air into the tube with a syringe and listen with a stethoscope for a gurgle sound. The tube is then attached to another tube leading to a feeding bag which is attached to a feeding pump that will administer a certain amount of Nutrin Jr. per hour. The plan is that Carmen will get continuous feeds at night (10 hours) and then 3 feedings during the day. Hopefully in a few weeks Carmen will come back to Children’s for the G-tube (tummy feeding tube) which sounds easier to deal with. The plan is that Carmen will be discharged tomorrow (Saturday) once we have equipment and training.

I’ll give a run-down of our stay at the hospital thus far:

Tuesday night, we brought Carmen to the hospital and she got the NG tube and an IV in her foot and monitors for oxygen and heart rate. She completely wore herself out crying (the IV was the most traumatic) and slept thru the night. (First time she has slept more than a couple of hours at a time in weeks.) I on the other hand got about 2 hours of sleep. Carmen’s little roommate screamed for 4 hours, from 11pm-3am and then got up to play! I was a mess!

Wednesday, Dave, Lauren and Grandpa came to visit and Carmen smiled and laughed when Lauren climbed in bed with her! Lauren said, “I love Carmen. She is my BEST sister ever!” Wednesday was fairly uneventful as the nurses worked on increasing Carmen’s feedings to make sure she could tolerate faster tube feedings. I prayed that day that we would get a very QUIET roommate if we got one at all. (Carmen’s first roommate had been discharged.) Carmen went to sleep at 9pm and so did I. We woke at 8am to find a little 9 year old girl in our room. This sweet little girl was angelic and perfectly quiet. Thank you God! I later found out that she also is adopted. Her family adopts special needs, medically fragile kids.

Thursday Carmen had an Upper GI test to determine future G-tube placement. Everything looked good. Thursday night I went home and Dave spent the night with Carmen. Lauren really needed me home. She has a cold and hasn’t felt well. I arrived home to find yummy food from my MOPS friends! I left Dave at the hospital with an apple and oranges. When I came back Friday morning I found a bag of Doritos, a Kit Kat, a Mr. Goodbar, a Coke and a package of cookies! Seems Dave had a party in the room.

Today (Friday) Carmen had a milk study to determine if she is having reflux. The results are that she has moderate reflux. Hopefully tonight we will get the equipment so we can go home tomorrow. I feel like I have been here for a month! Carmen has done really well and actually has slept better in the hospital than at home.

A few cool events:

  • The doctor from Israel who was observing the day we found out Carmen might have Tay Sachs stopped by to say hello. She asked how I am doing. I so appreciate when doctors ask how we are holding up.
  • Dr Tifft stopped by today….As I wrote this, she walked in! She is genuinely concerned about her patients and their families. I really like her. If anyone needs a geneticist and is in the D.C. area, I know a good one! (Ok, I am done with my Dr. Tifft advertisement. Ha! Ha!)
  • I want to say thank you to Joy at ARC for ordering the bath chair for Carmen. We got it in the mail this week and that thing is built like a tank! Carmen will be enjoying her baths- and she is in desperate need of one after 4 days in the hospital!

I need to go get dinner but want to close by thanking my MOPS friends. This week they have blessed us with delicious meals and come up with a plan to help us. I could not do this alone and I thank you.

Page 1 of 212»