Well, I now know its not the anesthesia making Nyla cough. She is coughing bad now, and it has been 8 days since her surgery. She is back up to 220 mgc FloVent twice a day instead of 110 mcg twice a day. Hopefully we can avoid another trip to the hospital and/or another round of Prednisone this time. Her sinusitis is back in full force too. Her nose is so bad, bleeding and all. I wish this all would just END. She has lost 3/4 pound since her surgery 8 days ago, and I have no idea why. We are pretty used to this pattern by now, but it doesnt make it any easier. We try so hard to get her to grow, and nothing is helping.
Her ENT appointment is on the 6th of April and he will decide then if he is going to take her tonsils and adenoids out and if he needs to do a lung biopsy to test for PCD. Other than this, Nyla is doing really well. She is eating OK and doing very very well in school. I got her registered for kindergarten yesterday. I really cant believe she is that old already!! Sending her to kindergarten worries me with her poor immune system. She is going to be sick non-stop if we cant get a handle on this soon.
Tomorrow Nyla gets to go to the fire station for her preschool field trip. She doesnt want to go because she is scared, but I think once she is there she will have fun.
Tuesday, March 23, 2010
Wednesday, March 17, 2010
Nyla is still doing pretty good pain wise. She hasn't needed any pain medicine since yesterday afternoon. She is coughing and wheezing today, it seems to be getting worse, but the anesthesiologist told us that this may happen. I don't know if it is from the surgery or if she is getting another sickness, or just an asthma flair up though. Time will tell I guess. If she is still like this tomorrow it will be time to up the FloVent before it gets really bad.
Brandon was up all night puking and has been puking and had diarrhea all day today. I know he will get over it in a day or two, but Im really hoping Nyla doesnt get it. She just cant fight off these things like she should be able to. Its so frustrating!!
Primary Childrens Hospital called yesterday to see how Nyla was doing. They just wanted to make sure everything was going well, which was nice!!
I want to give her a few weeks break before going back to the ENT to get the tonsil and adenoid surgery under way, but after just 3 days off antibiotics her sinusitis is already coming back.
While up at Primary Children s on Monday, the anesthesiologist was talking to us about the 5 previous attempts at getting Nylas dental surgery done. We explained why it had been canceled so many times, and she told us that with Nylas history we should not let Sevier Valley Hospital do any surgical procedures on her. Its not that they are a 'bad' hospital or anything like that, its just that they are not equipped to deal with kids who are high risk like Nyla. They dont deal with kids very often, and they dont have the experience with high risk kids to do surgery safely. After hearing this, I was actually happy that Nylas surgery had been canceled 5 times causing us to have to go to Primary Childrens.
Brandon was up all night puking and has been puking and had diarrhea all day today. I know he will get over it in a day or two, but Im really hoping Nyla doesnt get it. She just cant fight off these things like she should be able to. Its so frustrating!!
Primary Childrens Hospital called yesterday to see how Nyla was doing. They just wanted to make sure everything was going well, which was nice!!
I want to give her a few weeks break before going back to the ENT to get the tonsil and adenoid surgery under way, but after just 3 days off antibiotics her sinusitis is already coming back.
While up at Primary Children s on Monday, the anesthesiologist was talking to us about the 5 previous attempts at getting Nylas dental surgery done. We explained why it had been canceled so many times, and she told us that with Nylas history we should not let Sevier Valley Hospital do any surgical procedures on her. Its not that they are a 'bad' hospital or anything like that, its just that they are not equipped to deal with kids who are high risk like Nyla. They dont deal with kids very often, and they dont have the experience with high risk kids to do surgery safely. After hearing this, I was actually happy that Nylas surgery had been canceled 5 times causing us to have to go to Primary Childrens.
Tuesday, March 16, 2010
The surgery is done!! I cant even begin to tell you how relieved I am!!
We didnt get to bed until 11:30, then had to get up at 3:30 am and were on the freeway by 4:00 am. Nyla slept the whole way up which made the trip easier for sure! She had her physical, and passed thankfully!! She was 14.0 Kilos and 41.5 inches tall. Lungs, ears, and sinuses were all clear. They gave her a medicine that made her very loopy and then took her back in a little wagon. No tears at all, it was nice. The anesthesiologist visited with us before hand and told us that with asthmatics, they expect an asthma attack when they intubate, so she gave her a double dose of steroids and a breathing treatment before intubating her to help ward off the attack; which worked! She didnt have any issues with her lungs during the surgery!!
The dentist did 5 crowns and filled 4 cavities. He also said he scraped of some stuff that was on a few of her other teeth that would cause cavities. It wasnt plaque, but I cant remember what he called it.
Once she was breathing on her own they came and got me to be with her while she woke. Her nose was bleeding from the breathing tube and her oxygen kept dipping into the 80s but other than that she was doing perfect. She woke up slowly and realized that there was an IV in her foot, and she was NOT happy about it. She wanted it out so bad. Once she woke up her oxygen stayed up and we were discharged.
We left the hospital feeling like a huge weight had been lifted!! I am so so soooo glad that is over. due to the anesthetic, she slept most of the way home.
So far she hasnt had much pain. Only a few times she has told me they hurt and I give her Mortin and she is fine. She did wake crying several times last night and she was very congested. I dont know if its a side effect from something to do with the surgery or if she is getting sick again now that she is off antibiotics.
She is doing well this morning :)
Here are some pictures:
In the Pre-Op room:
Still sleeping:
Her poor foot she was so upset about:
Trying hard to wake:
We didnt get to bed until 11:30, then had to get up at 3:30 am and were on the freeway by 4:00 am. Nyla slept the whole way up which made the trip easier for sure! She had her physical, and passed thankfully!! She was 14.0 Kilos and 41.5 inches tall. Lungs, ears, and sinuses were all clear. They gave her a medicine that made her very loopy and then took her back in a little wagon. No tears at all, it was nice. The anesthesiologist visited with us before hand and told us that with asthmatics, they expect an asthma attack when they intubate, so she gave her a double dose of steroids and a breathing treatment before intubating her to help ward off the attack; which worked! She didnt have any issues with her lungs during the surgery!!
The dentist did 5 crowns and filled 4 cavities. He also said he scraped of some stuff that was on a few of her other teeth that would cause cavities. It wasnt plaque, but I cant remember what he called it.
Once she was breathing on her own they came and got me to be with her while she woke. Her nose was bleeding from the breathing tube and her oxygen kept dipping into the 80s but other than that she was doing perfect. She woke up slowly and realized that there was an IV in her foot, and she was NOT happy about it. She wanted it out so bad. Once she woke up her oxygen stayed up and we were discharged.
We left the hospital feeling like a huge weight had been lifted!! I am so so soooo glad that is over. due to the anesthetic, she slept most of the way home.
So far she hasnt had much pain. Only a few times she has told me they hurt and I give her Mortin and she is fine. She did wake crying several times last night and she was very congested. I dont know if its a side effect from something to do with the surgery or if she is getting sick again now that she is off antibiotics.
She is doing well this morning :)
Here are some pictures:
In the Pre-Op room:
Still sleeping:
Her poor foot she was so upset about:
Trying hard to wake:
Saturday, March 13, 2010
The hospital called yesterday to go over Nylas surgery stuff. We have to be at Primary Childrens by 7 in the morning; which means we need to leave here between 3:30 and 4:00 in the morning. We had to go over everything Nyla has gone through from what happened to her in utero to her NICU stay, hospital visits and so on. They had to know all the meds she has been on in the last 30 days which consists of Ventolin/inhaler, FloVent/inhaler, Albuterol/nebulizer, Singulair, Prevacid, Veramyst, Zithromax, Ceflacor, Prednisone, and possible a few others I cant think of right now. She has to take her FloVent and Prevacid before 5:45 am and then nothing at all after that. Her pre-op physical is at 7:15 am at Primary Childrens, then her surgery will begin at about 8:45 am.
Im getting nervous about the anesthetic, but Im hopeful that she will do just fine. Its going to be a long day for all of us.
Im getting nervous about the anesthetic, but Im hopeful that she will do just fine. Its going to be a long day for all of us.
Wednesday, March 10, 2010
I talked to Nylas preschool teacher today since they just did their testing. Turns out that Nyla was one of the only kids who knew ALL their letters, could count to 10 and knew all their colors!! She is one of the top 3 kids in the class!! Im so proud of her!! She will be tested again toward the end of the year because she needs to be able to count to 30 to be ready to start kindergarten, but I know she already can and her teacher told me that she can. Im so proud of her, she is so smart!!
Tuesday, March 9, 2010
Nyla has been on her antibiotics now for 3 days and they are doing their job. Her nose is clearing up fast and her cough is about gone. She is even eating better and we are hoping for a good weight gain by her pre-op physical on the 15th! So far its looking like the surgery will be a go... which is wonderful news considering this is our 6th attempt at getting this done.
Take a moment to say a prayer for this special little girl. http://laylagrace.org/
She lost her battle with neuroblastoma this morning at just 27 months old. May little Layla finally be pain free and able to play with the angels.
Take a moment to say a prayer for this special little girl. http://laylagrace.org/
She lost her battle with neuroblastoma this morning at just 27 months old. May little Layla finally be pain free and able to play with the angels.
Friday, March 5, 2010
We had a bit of a scare today. Nyla came up to me and told me she couldn't breathe, so I grabbed the pulse oximeter and took her oxygen sats. It was bouncing between 84 and 86 so I grabbed the nebulizer and gave her some albuterol. As the treatment went on I could hear her breathing easier. Her oxygen sats came back up to 96 after we did the treatment, so that was a relief. She doesnt look good today, her skin is very pale and her eyes look so dark. I just hope this isnt the start of another respiratory virus; she is scheduled to have her surgery on 10 days and I really dont want to have to put it off yet again. She needs to have this done so we can move on. She starts her preventative antibiotic tonight so her last dose will be the day before the surgery; hopefully this will clear her sinuses up long enough for the surgery.
The pulmonologist we seen in January mentioned testing her for 3 conditions if the asthma prevention plan he prescribed did not help. One was cystic fibrosis, one was a lung condition specific to bird poop (which is extremely rare) and the other was a condition called PCD. PCD is short for Primary Ciliary Dyskinesia. It is a term for inherited disorders of the structure and/or function of cilia. It has many of the same symptoms as CF, but PCD patients have a normal sweat chloride level. The treatment and prognosis for both CF and PCD are about the same. It is very unlikely that she has any of these conditions but it is something that we need to rule out because early treatment is so important. We hope and pray that she doesnt have any of this problems, and that the tonsil and adenoid surgery will end all this.
The pulmonologist we seen in January mentioned testing her for 3 conditions if the asthma prevention plan he prescribed did not help. One was cystic fibrosis, one was a lung condition specific to bird poop (which is extremely rare) and the other was a condition called PCD. PCD is short for Primary Ciliary Dyskinesia. It is a term for inherited disorders of the structure and/or function of cilia. It has many of the same symptoms as CF, but PCD patients have a normal sweat chloride level. The treatment and prognosis for both CF and PCD are about the same. It is very unlikely that she has any of these conditions but it is something that we need to rule out because early treatment is so important. We hope and pray that she doesnt have any of this problems, and that the tonsil and adenoid surgery will end all this.
Thursday, March 4, 2010
Nylas Story
I created this blog to follow Nyla through her problems resulting from her prematurity. This is her story...
We found out we were expecting Nyla in July of 2004 after a year of trying to get pregnant and finally resorting to fertility drugs. I suffered a partial placental abruption at 11 weeks and was told there was less than a 50% chance that our baby would survive to viability. We left with little hope for our unborn child. The days slowly turned into weeks as each checkup produced a healthy strong heartbeat from our developing baby. At 23 weeks we had a preterm labor scare, and again at 29 weeks when I was sent home on strict bedrest. By the grace of God we made it 2 hours past the 33 week mark before my water broke without warning and we were rushed back for an emergency c section. Baby Nyla Marie arrived on February 22nd 2005 a full 7 weeks too soon weighing in at 4 pounds 5.6 ounces and measured 16 inches long. After an uneventful 10 day stay in the Neonatal Intensive Care Unit Nyla left the NICU behind her forever weighing just 3 pounds 14 ounces. The was thriving at home; gaining weight well, breastfeeding like a champ, and meeting her developmental milestones better than expected.
Nyla got RSV when she was just 10 weeks old; but was not hospitalized. She recovered at home, but little did we know this virus would leave lasting damage to her tiny lungs. She continued to thrive until 11 months old when she came down pneumonia. After that infection she started on a downhill run that has yet to stop. She contracted croup, RSV, pneumonia, bronchiolitis, and so on over and over. Each infection went straight to her immature lungs resulting in wheezing, stridors, and chronic coughing. At the age of 23 months she was diagnosed with asthma and started on a prevention plan. Her growth started to suffer until she fell into the 'failure to thrive' category. By 3 years old she was still suffering lung ailments, not growing, and spending most of her time groggy and tired. She had a simple test to check for a few of the most common mutations of cystic fibrosis but it came back negative.
Nyla just turned 5 years old and the pattern of bad lungs, chronic infections, and poor growth continues. She is on a concoction of medications to try to keep her healthy but so far its not enough. She uses Ventolin, FloVent, Singulair and Prednisone for asthma; Prevacid for GERD, as well as extra vitamins and PediaSure foor poor growth and poor immunities. Just 3 weeks ago we were at the hospital with yet another bout of RSV. Each year has been worse and worse for her. We have attempted 5 times to get her under anesthetic for a simple dental surgery, but each time her lungs have not been healthy enough. She is scheduled to have this surgery done at Primary Children's Hopital on the 15th of march, and we are all praying that it goes well.
We are now looking at further testing for cystic fibrosis as well as a full immune panel. She will most likely be having her tonsils and adenoids removed as a result of 'ruling everything else out' that could be causing her chronic sinusitis. Please feel free to join us through the ups and downs of this journey.
We found out we were expecting Nyla in July of 2004 after a year of trying to get pregnant and finally resorting to fertility drugs. I suffered a partial placental abruption at 11 weeks and was told there was less than a 50% chance that our baby would survive to viability. We left with little hope for our unborn child. The days slowly turned into weeks as each checkup produced a healthy strong heartbeat from our developing baby. At 23 weeks we had a preterm labor scare, and again at 29 weeks when I was sent home on strict bedrest. By the grace of God we made it 2 hours past the 33 week mark before my water broke without warning and we were rushed back for an emergency c section. Baby Nyla Marie arrived on February 22nd 2005 a full 7 weeks too soon weighing in at 4 pounds 5.6 ounces and measured 16 inches long. After an uneventful 10 day stay in the Neonatal Intensive Care Unit Nyla left the NICU behind her forever weighing just 3 pounds 14 ounces. The was thriving at home; gaining weight well, breastfeeding like a champ, and meeting her developmental milestones better than expected.
Nyla got RSV when she was just 10 weeks old; but was not hospitalized. She recovered at home, but little did we know this virus would leave lasting damage to her tiny lungs. She continued to thrive until 11 months old when she came down pneumonia. After that infection she started on a downhill run that has yet to stop. She contracted croup, RSV, pneumonia, bronchiolitis, and so on over and over. Each infection went straight to her immature lungs resulting in wheezing, stridors, and chronic coughing. At the age of 23 months she was diagnosed with asthma and started on a prevention plan. Her growth started to suffer until she fell into the 'failure to thrive' category. By 3 years old she was still suffering lung ailments, not growing, and spending most of her time groggy and tired. She had a simple test to check for a few of the most common mutations of cystic fibrosis but it came back negative.
Nyla just turned 5 years old and the pattern of bad lungs, chronic infections, and poor growth continues. She is on a concoction of medications to try to keep her healthy but so far its not enough. She uses Ventolin, FloVent, Singulair and Prednisone for asthma; Prevacid for GERD, as well as extra vitamins and PediaSure foor poor growth and poor immunities. Just 3 weeks ago we were at the hospital with yet another bout of RSV. Each year has been worse and worse for her. We have attempted 5 times to get her under anesthetic for a simple dental surgery, but each time her lungs have not been healthy enough. She is scheduled to have this surgery done at Primary Children's Hopital on the 15th of march, and we are all praying that it goes well.
We are now looking at further testing for cystic fibrosis as well as a full immune panel. She will most likely be having her tonsils and adenoids removed as a result of 'ruling everything else out' that could be causing her chronic sinusitis. Please feel free to join us through the ups and downs of this journey.
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