Here’s my request for the day: lots of you read my rambling journal but don’t post in the guestbook. Dave and I see how many hits the journal gets each day. Most likely my mom and Dave’s mom are responsible for a good number of those hits but probably not hundreds! So, please introduce yourself and leave us a message. And those who have already left messages, feel free to leave another one! (You can leave us a message every single day if you would like!) We love reading the messages and knowing that so many share this journey with us.
Great news! Starting tonight we are getting 12 hours per night of nursing care, instead of 10. Carmen’s care is getting more complicated and I am so grateful to have help!
More great news: our landlords have asked if we would like to extend our lease thru June 2009. I have been so worried that we will have to move out this summer and either find a home to buy or rent. Right now the very thought of packing up and moving makes me nauseous so this is truly relieving.
Carmen is home! She is doing much better now and hopefully will stay that way for a long time.
I want to say that we have had a very wonderful experience with the Shady Grove Hospital PICU staff. I was initially concerned about having Carmen at a local hospital instead of at Children’s but the service is wonderful. And, it’s great to be 10 minutes from home versus an hour. The doctors and nurses all know Carmen now and are willing to help in any way they can. I am very comfortable with the care Carmen receives. The nurses are very quiet at night and continually ask if I need anything. They usually bring breakfast, lunch and dinner for me and if I want a salad instead, the cafeteria is very reasonably priced. I think I will send them a big thank you!
I am going to talk to Carmen’s pediatrician tomorrow about ways to reduce her reflux and hopefully help her breathe better. Carmen seems to have a lot more respiratory issues than other children with Tay Sachs and I am not sure why. She does have a variation of Tay Sachs so maybe that accounts for all of her upper airway trouble. Honestly, I suspect that Carmen will not be a child who lives a long time. She is having so many problems with breathing now and is just 21 months old. We will continue doing every thing we can to help her and keep her comfortable. God knows how long she will be with us. All we can do is enjoy each day with her.
We got the extra suction machine today and I am just thrilled to have one for home and one for the car! The suction machine can be used plugged in or battery back-up. We do have outlets in our minivan but I will try my best to keep the machine charged!
Thank you to Sarah and Karen for watching Lauren today!
We took Carmen to the ER last night. After 3 doses of Augmentin for ear infections, she broke out in a rash from head to toe, literally covered in spots. Her breathing was more labored than usual and then her oxygen went down. I gave her oxygen but her levels stayed low. I called Alice, a nurse I know from church, and she came over. She felt that Carmen needed to be seen so we took her to the ER and she was admitted. Hopefully, she will get to come home tomorrow. She is doing much better today after IV antibiotics, a ton of nebulizer treatments and oxygen.
We really hope to be able to keep Carmen home and out of the hospital. I am going to talk to her doctors about getting everything possible in our home so that we can treat problems as they occur and avoid ER visits! Dave especially is concerned that all the hospital visits are unfair to Carmen- she gets poked and prodded and kept awake. And, it’s so hard on Lauren to have me gone.
One funny thing that happened in the hospital: we were waiting in the ER and a receptionist found us and said that a lady named Shar from Church of the Redeemer was on the phone for me. I thought, “How could Shar have possibly known we are at the emergency room?!” I asked and Shar said that she called our house and we weren’t there so she tried the hospital and there we were! Shar and Rick came up to the hospital and then Shar stayed with Carmen and me until 3am! Thank you so very much, Shar. You did NOT have to do that and I did keep trying to send you home. But, it was wonderful to have company and I enjoyed our talks!
Please keep Carmen in your prayers. We hope she is home ASAP.
Carmen has double ear infections. I sure am glad I took her to the doctor yesterday! We started her on Augmentin last night. She had a rough night last night with lots of congestion. Poor baby!!!
We switched from Albuterol to Xopenex because Albuterol makes Carmen’s heart rate go way too high, especially while sick. For the past few days, her resting heart rate has been in the 140s and 150s and then adding Albuterol on top of that shoots her rate up to the 170s and 180s for an extended period of time. Hopefully the Xopenex will keep her more relaxed.
I am happy to say that we are getting an extra suction machine. I found one on Craigslist for a reasonable price so the nice lady is sending it to us. We have one in Carmen’s room and I get tired of hauling it all over so we will either keep the extra in the living room or in the minivan. By the way, thank goodness we have a minivan! Carmen’s Kid Kart stroller is so big and all I have to do is put the backseat down and then use all of my muscles to lift it up! I don’t even fold it up which is great because to fold it I would have to take the stroller seat off and while that is easy, it’s just one more hassle.
If any of you have suggestions on a car seat that might work for Carmen, please let me know. Carmen is rear facing in a Britax Marathon and that is working for now. Once she gets to 33 lbs. though the seat has to be forward facing and Carmen doesn’t have enough upper torso and head control to sit forward in this seat. We tried out the Britax Traveller Plus special needs seat but Carmen’s head immediately fell forward. Any suggestions???
Big Elise, a 5 year old with Tay Sachs, has been sick with MRSA, a staph infection in her lungs in the form of bronchitis. Please keep her in your prayers.
Thank you to Wendy for watching Carmen this week! And thanks to Monica for coming over to play with Lauren yesterday while I took Carmen to the doctor. I have a feeling we will be watching Fox and the Hound #2 over and over and over and over and over!!!!!!
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