Carleigh is in the hospital again. Last night she was having episodes of breathing, then pausing, then making a snorting sound. When we would look at her after the "snort" her nose, mouth, and around her eyes were purple. Then she would start crying and breathing normally again.
We were told when she was born that her snorting was caused by her Chiari Malformation. I have since found that Trisomy 18 children sometimes have obstructions which cause them to snore. We called the doctors' office and the doctor on call said since she is having times that she is purple, we needed to take her to the emergency room. We arrived at the hospital at about 9 p.m. and were in the ER until around midnight. Then they admitted her and moved her to the 5th floor (pediatrics). Her x-rays show no sign of obstruction, but she does have narrow airways. That doesn't surprise me at all, because all of her is petite! So now we're just playing the waiting game until tomorrow when our pediatrician comes.
We are expecting to get to bring Carleigh home tomorrow, but it will be up to the pediatrician on whether or not Carleigh sees an Ear/nose/throat specialist. I am home tonight with B. We don't want him to feel left out. :o)
Oh, and Carleigh is up to 8 lbs. 5 ozs.! She has gained 1 ounce each day since we last saw the pediatrician! Hopefully she's on her weight gaining climb again!!
Keep Miss Carleigh in your thoughts and prayers, as I know you all already do. We'll be back home soon - we hope!!
The Life of An Angel: Carleigh Lauryn Grace
Showing posts with label hospital stay. Show all posts
Showing posts with label hospital stay. Show all posts
3/19/2000
3/04/2000
This is what happened to Carleigh - as well as how she is doing now:
Carleigh had a doctor's appt. on Thursday morning. When we put her on the scale, she had gained a big fat ZERO!! I just knew the ped. was going to be on our cases, but she wasn't. I explained what had been happening since we had come home from the shunt revision.
Carleigh has been congested since being pulled from the ventilator. I called the doc's office and our doc had hurt our back and wasn't there, so I had to talk to a different doc. He didn't seem too concerned and put her on Delsum, which didn't do any good. (That was on Wed. the 16th.) By Sunday night, she had the runniest nose I had ever seen. Monday morning I called back to the doc's office and was stuck with the same idiot because our doc still wasn't there. I told him of her symptoms and that I was very concerned about RSV because I knew it was very serious in babies and would be even more serious with her. He said it didn't sound like RSV to him because she had no fever or wheezing and told me if she did get a fever he would have to see her.
Maybe I haven't been paying attention, but I was unaware that there is a "snot test" for RSV. Had I known, I would have insisted on a test. So here we sat for two weeks with a congested, snotty kid until our appt. with our pediatrician. The FIRST THING she did was a chest x-ray and a RSV test.
So, on Thursday evening, Carleigh was transported to the hospital via ambulance - RSV positive! The idiot doctor that told us she didn't have it (without doing a test) currently rates right up there with the idiots from the NICU.
Oh, and by the way, she is in the hospital that she was born in. My heart sank when we knew she had to go there. I have watched them like a hawk. They consider her latex precautions an actual allergy and are extremely careful. We have had a wonderful experience with them. They are treating her like "any other" baby with RSV. She started in the PICU and was moved to the floor the next day. It's amazing what getting into an elevator and riding up one floor can do for you!!
Now about Miss Carleigh... Her chest x-rays are clear. She is not showing any signs of pneumonia. (THANK GOODNESS!!) She has an NG tube, but has almost worked her way back up to normal feeds, and I'm predicting they will remove the tube tomorrow. She was so congested that she couldn't even suck a bottle on Friday morning. She receives breathing treatments every three hours. Otherwise, she's normal little Carleigh - happy, awake, and "talking" until 3 a.m.! Thanks for your extra prayers and please keep saying them until our little one is safely home.
Carleigh had a doctor's appt. on Thursday morning. When we put her on the scale, she had gained a big fat ZERO!! I just knew the ped. was going to be on our cases, but she wasn't. I explained what had been happening since we had come home from the shunt revision.
Carleigh has been congested since being pulled from the ventilator. I called the doc's office and our doc had hurt our back and wasn't there, so I had to talk to a different doc. He didn't seem too concerned and put her on Delsum, which didn't do any good. (That was on Wed. the 16th.) By Sunday night, she had the runniest nose I had ever seen. Monday morning I called back to the doc's office and was stuck with the same idiot because our doc still wasn't there. I told him of her symptoms and that I was very concerned about RSV because I knew it was very serious in babies and would be even more serious with her. He said it didn't sound like RSV to him because she had no fever or wheezing and told me if she did get a fever he would have to see her.
Maybe I haven't been paying attention, but I was unaware that there is a "snot test" for RSV. Had I known, I would have insisted on a test. So here we sat for two weeks with a congested, snotty kid until our appt. with our pediatrician. The FIRST THING she did was a chest x-ray and a RSV test.
So, on Thursday evening, Carleigh was transported to the hospital via ambulance - RSV positive! The idiot doctor that told us she didn't have it (without doing a test) currently rates right up there with the idiots from the NICU.
Oh, and by the way, she is in the hospital that she was born in. My heart sank when we knew she had to go there. I have watched them like a hawk. They consider her latex precautions an actual allergy and are extremely careful. We have had a wonderful experience with them. They are treating her like "any other" baby with RSV. She started in the PICU and was moved to the floor the next day. It's amazing what getting into an elevator and riding up one floor can do for you!!
Now about Miss Carleigh... Her chest x-rays are clear. She is not showing any signs of pneumonia. (THANK GOODNESS!!) She has an NG tube, but has almost worked her way back up to normal feeds, and I'm predicting they will remove the tube tomorrow. She was so congested that she couldn't even suck a bottle on Friday morning. She receives breathing treatments every three hours. Otherwise, she's normal little Carleigh - happy, awake, and "talking" until 3 a.m.! Thanks for your extra prayers and please keep saying them until our little one is safely home.
3/02/2000
I can't make this long. An ambulance is on the way to pick up Carleigh. She has RSV and has to be monitored in intensive care in the hospital.
All we know for now is that it hasn't caused pneumonia, but with her heart problems, they feel the need to monitor her closely. Please say an extra prayer for us and I'll update again as soon as we're home.
All we know for now is that it hasn't caused pneumonia, but with her heart problems, they feel the need to monitor her closely. Please say an extra prayer for us and I'll update again as soon as we're home.
11/11/1999
Posted by: Grandad
Nov. 11 - 1:55 P.M. cst ======= Carleigh had her first feeding of milk through a tube in her mouth at Noon and will have her next feeding at 3:00 before they can start home. They need to watch her for a while after eating to make sure she is ok. She is also to have an Echocardiogram before starting home, so it will still be a while.
Nov. 11 - 1:55 P.M. cst ======= Carleigh had her first feeding of milk through a tube in her mouth at Noon and will have her next feeding at 3:00 before they can start home. They need to watch her for a while after eating to make sure she is ok. She is also to have an Echocardiogram before starting home, so it will still be a while.
Posted by: Grandad
Nov. 11 - 8:25 A.M. CST ========= I'm on the phone with Andrea as I write this. Carleigh had a pretty good night, she did have a few APNEA attacks. John & Andrea think she was just testing their endurance & showing them who was boss. They took care of her on their own, and the nurses only checked her vitals (which is the way it was supposed
to be). They are still coming home sometime today.
Nov. 11 - 8:25 A.M. CST ========= I'm on the phone with Andrea as I write this. Carleigh had a pretty good night, she did have a few APNEA attacks. John & Andrea think she was just testing their endurance & showing them who was boss. They took care of her on their own, and the nurses only checked her vitals (which is the way it was supposed
to be). They are still coming home sometime today.
11/10/1999
Posted by: Grandad
Nov. 10 - 11:20 P.M. CST ========= Just got home from the hospital. Carleigh, Mommy, Daddy and B are spending the night in the Care By Parenting Room. Christmas Pictures are made (hopefully they will be good, Grandad made them) Carleigh is having fewer APNEA attacks and the plan is still for them to all come home tomorrow. It will probably sometime afternoon.
Nov. 10 - 11:20 P.M. CST ========= Just got home from the hospital. Carleigh, Mommy, Daddy and B are spending the night in the Care By Parenting Room. Christmas Pictures are made (hopefully they will be good, Grandad made them) Carleigh is having fewer APNEA attacks and the plan is still for them to all come home tomorrow. It will probably sometime afternoon.
Posted by: Grandad
Nov 10 1:35 P.M. CST ---------- I'm having problems with the Dreambook, thus all the multiple entries. Maybe before long Andrea will be able to take over and fix all my messups.
Nov 10 1:35 P.M. CST ---------- I'm having problems with the Dreambook, thus all the multiple entries. Maybe before long Andrea will be able to take over and fix all my messups.
Posted by: Grandad
Nov 10 -- 1:15 P.M. CST ------- Just talked to Andrea, Carleigh is still doing ok. The doctors are putting an IV Pick Line in now. It will be able to stay in longer than a
regular IV and Carleigh will be coming HOME tomorrow. So if all goes as planned she will get to be home with her family. She had pictures made today in clothes and the
Christmas pictures will be tonight.
Nov 10 -- 1:15 P.M. CST ------- Just talked to Andrea, Carleigh is still doing ok. The doctors are putting an IV Pick Line in now. It will be able to stay in longer than a
regular IV and Carleigh will be coming HOME tomorrow. So if all goes as planned she will get to be home with her family. She had pictures made today in clothes and the
Christmas pictures will be tonight.
Posted by: Grandad
Nov. 10 - 8:45 A.M. CST ------ Just talked to Andrea and Carleigh had a GOOD night, only 2 APNEA attacks. One she corrected herself and the nurse stimulated her to get her
going on the other one. Still planning to move to a Care By Parenting room sometime this afternoon. Also we plan to make Christmas Pictures tonight.
Nov. 10 - 8:45 A.M. CST ------ Just talked to Andrea and Carleigh had a GOOD night, only 2 APNEA attacks. One she corrected herself and the nurse stimulated her to get her
going on the other one. Still planning to move to a Care By Parenting room sometime this afternoon. Also we plan to make Christmas Pictures tonight.
11/09/1999
Name: Grandad
Nov. 9 - 10:50 P.M. CST ----- Talked to Daddy at 9:30 and Carleigh is doing fine. Hasn't had an APNEA attack for quite some time. They are looking foreward to moving to
the other room tomorrow so the whole family can be together. I'm working tomorrow so I will update ASAP. Thanks for the continued prayers and support for Carleigh and her family.
Nov. 9 - 10:50 P.M. CST ----- Talked to Daddy at 9:30 and Carleigh is doing fine. Hasn't had an APNEA attack for quite some time. They are looking foreward to moving to
the other room tomorrow so the whole family can be together. I'm working tomorrow so I will update ASAP. Thanks for the continued prayers and support for Carleigh and her family.
Posted by: Grandad
Nov. 9 -- 5:20 P.M. CST ------- Carleigh is about the same, still has the APNEA attacks, but didn't have many today. She has a nasal cannula with 200cc of oxygen, which is less than yesterday. Tomorrow they plan to move her to a Care By Parenting Room (still in the hospital and close to, but not in ICU) Andrea, John, Carleigh and B can all stay together. Not like being at home , but at least all can be together.
Nov. 9 -- 5:20 P.M. CST ------- Carleigh is about the same, still has the APNEA attacks, but didn't have many today. She has a nasal cannula with 200cc of oxygen, which is less than yesterday. Tomorrow they plan to move her to a Care By Parenting Room (still in the hospital and close to, but not in ICU) Andrea, John, Carleigh and B can all stay together. Not like being at home , but at least all can be together.
Posted by: Grandad
Nov. 9 - 8:30 A.M. -- Carleigh made it through the night, but she did have several APNEA attacks where she quit breathing. Each time they were able to get her to breath
again. She is not on a ventilator, only oxygen. Gram and I will be going back to see her soon and I will update later today or tonight when we get home. She's really a
beautiful little girl.
Nov. 9 - 8:30 A.M. -- Carleigh made it through the night, but she did have several APNEA attacks where she quit breathing. Each time they were able to get her to breath
again. She is not on a ventilator, only oxygen. Gram and I will be going back to see her soon and I will update later today or tonight when we get home. She's really a
beautiful little girl.
11/08/1999
Posted by: Grandad
Monday Nov. 8 -- 11:30 P.M. CST Carleigh arrived at 2:28 P.M. she weighed 5# 3 oz. and was 18 1/2" long. She does have spina bifida and also Trisomy 18. The doctors tell us we may have her for a few hours or maybe a few days, they really don't know just how long she will be with us. They are not going to do surgery to correct the spina bifida as they say she might not survive the surgery, instead they will do everything possible to keep her comfortable. Thanks to all of you for your prayers and please continue to remember Carleigh, Andrea, John and B in your prayers. Gram and I will try to keep you posted until Andrea is able to take over.
Monday Nov. 8 -- 11:30 P.M. CST Carleigh arrived at 2:28 P.M. she weighed 5# 3 oz. and was 18 1/2" long. She does have spina bifida and also Trisomy 18. The doctors tell us we may have her for a few hours or maybe a few days, they really don't know just how long she will be with us. They are not going to do surgery to correct the spina bifida as they say she might not survive the surgery, instead they will do everything possible to keep her comfortable. Thanks to all of you for your prayers and please continue to remember Carleigh, Andrea, John and B in your prayers. Gram and I will try to keep you posted until Andrea is able to take over.