Sunday, October 23, 2011
"You See"
You see eyes that seem fixated in the wrong direction .. .. I see the numerous times my sweet girl locks eyes with me for what seems like hours
You see a baby who doesn't move ... I see a baby who lifts her legs at changing times, who is working with all her might to roll all by herself and turns her head in whatever direction her daddys voice is coming from
You see a baby who gets fed wit a g-tube .. . I see my baby eating her lunch
You see a baby with a trach ... I see an extra nose/mouth that allows my baby to breathe normally
You see a baby and wonder 'what's wrong'... I see an intelligent little girl who tries harder than you ever will to challenge herself to move, to learn, to focus
You see a little girl with disablities ... I see a little girl with a world of possiblities
You see parents who must 'have it so hard'... I see parents who KNOW, beyond all doubt, that they have been blessed with a living, breathing miracle
Sunday, October 23, 2011
Thursday, October 13, 2011
A Can Do Attitude
Thursday, October 13, 2011 Smarter than the Average Baby You know, 'they' say she suffered brain damage and that, though'they' weren't sure how, it would effect Cayleigh. We've heard everything from cognetive impariment, mental retardation, unable to communicate, unable to move, probably won't walk, probably won't...blah blah blah.
Well I've decided that I'm going to start this blog right back up again folks! I'm going to try and post everyday (or few ... lol) with a little snippet on just how our Cayleigh Jean is doing - and will probably be posting video clips much like the one I'm sharing tonight! It was SO cool tonight. We were laying on the bed after her PT time and she was pulling her head & upper body to the side - which is her version of rolling. I assist her with her hips because, after all, they are dislocated. Anyhoo - I noticed that she was moving her hands to one another and using her thumbs (which are the only fingers easily extended for her) to touch her fingers on both hands. She'd move her left thumb to touch the fingers on her right clenched fist , and vice versa. I got up quickly to grab the phone and take a video - and here it is!
It's amazing how far she's developed post trach. She's gained almost 3 whole pounds since she's had it because her calories are no longer being spent on focusing to breathe. She's developmentally a changed child. She interacts a vast amount more, she's got great coloring, she's physically moving a TON more. It's a real, true miracle and God has put it right in front of us.
On a side note I wanted to say that this past month at the UCSF hospital was hard on us both. It's been like we've done nothing but spent the last seven months of our lives in the hospital. Different people saying different things, explaining all the 'conditions' over and over, going over meds over and over.. it's just exhausting. We're glad to be home.
I have been told that I am a strong woman but in truth I am only strong because 1. I have a strong God and 2. I have a strong man by my side to help me when I'm not feeling on top of my game. Philippians 4:13 New King James Version (NKJV) 13 I can do all things through Christ[a] who strengthens me. and THAT, my friends, is the truth. I'm nothing but a hot mess and all of this would have clean wiped me out had it not been for prayer and God's mercy. I'm not going to sit here and claim to know why Cayleigh is afflicted - but what I do know is that He has plans for her more amazing that any of us will ever know. Who knows, maybe some day SHE'LL be taking over the blog.
Enjoy
Well I've decided that I'm going to start this blog right back up again folks! I'm going to try and post everyday (or few ... lol) with a little snippet on just how our Cayleigh Jean is doing - and will probably be posting video clips much like the one I'm sharing tonight! It was SO cool tonight. We were laying on the bed after her PT time and she was pulling her head & upper body to the side - which is her version of rolling. I assist her with her hips because, after all, they are dislocated. Anyhoo - I noticed that she was moving her hands to one another and using her thumbs (which are the only fingers easily extended for her) to touch her fingers on both hands. She'd move her left thumb to touch the fingers on her right clenched fist , and vice versa. I got up quickly to grab the phone and take a video - and here it is!
It's amazing how far she's developed post trach. She's gained almost 3 whole pounds since she's had it because her calories are no longer being spent on focusing to breathe. She's developmentally a changed child. She interacts a vast amount more, she's got great coloring, she's physically moving a TON more. It's a real, true miracle and God has put it right in front of us.
On a side note I wanted to say that this past month at the UCSF hospital was hard on us both. It's been like we've done nothing but spent the last seven months of our lives in the hospital. Different people saying different things, explaining all the 'conditions' over and over, going over meds over and over.. it's just exhausting. We're glad to be home.
I have been told that I am a strong woman but in truth I am only strong because 1. I have a strong God and 2. I have a strong man by my side to help me when I'm not feeling on top of my game. Philippians 4:13 New King James Version (NKJV) 13 I can do all things through Christ[a] who strengthens me. and THAT, my friends, is the truth. I'm nothing but a hot mess and all of this would have clean wiped me out had it not been for prayer and God's mercy. I'm not going to sit here and claim to know why Cayleigh is afflicted - but what I do know is that He has plans for her more amazing that any of us will ever know. Who knows, maybe some day SHE'LL be taking over the blog.
Enjoy
Thursday, September 8, 2011
A Quick Update
Thursday, 9 - 8 - 11
Day 2 Post Op
Well I will give a quick fast forward to you. Back on Tuesday of last week we were scheduled to admit Cayleigh into UCSF for a sleep study test. This would be a test, along with a bronchoscopy, that the doctors would do to see what issues she had with her airways. The night before, Cayleigh started having tons of snot coming out of her right nostril, retracting *pulling really hard in the ribs to breath* and having short, fast breaths. We made it through the night, putting her on 1.5 liters of Oxygen through her tanks and we got up to the hospital.
Long story short - we kept telling them something wasn't right with her, they took an xray and swabs for viruses and finally figured out we were right, and the same day she was admitted to the ICU for pneumonia. Later that day she spiked fevers of 103, contained with Tylenol. First round of virus tests came back negative. Xray came back with a spot of pneumonia in the bottom right lung. They started her on antibiotics. Wednesday came along, she had a fever of 102 again just in the morning around 6 am, they did a full panel for viruswa which is more extensive and took another xray. This time she had a really dense patch in the top right lung which was deflating the lung. Started her on bipap every 2 hours to reinflate, along with the extensive amounts of breathing treatments they did.
Friday came along, Pulmonary said they got her on the schedule for a bronchoscopy. They would have to sedate her for the procedure and it'd take about 30 minutes. Got ot the preop room and were present for the anesthesia doctor to argue and question the Pulmonary docs as to whether it was safe for her to have this procedure, and to be put under, with pneumonia and having only had a fever less than 24 hours prior. Uncomfortable. Very.
They proceeded with procedure, found that she has severe pharengeal malaysia (collapsed upper airway) and felt a trach would be the very best possible thing to do to allow her to breath. Back to the ICU, they thought they'd be moving her to the floor because she had been doing to well repsonding to treatments, etc before surgery (which they said would be about 2 weeks out). Well, that never happened and they kept her in the ICU.
Fast forward: Tuesday we got a phone call at the buttcrack of dawn from ENT surgeon. They were going to be doing the trach that morning. We got up to the hospital and finally got in to the surgery area around mid day. Again, had to see if it was ok with anesthesia to put her under. Benefits outweighed the risks. Surgery was then done and she was back in ICU. She was pretty out of it, on a ventilator and had stitches in her neck and attached to her chest from the trach. We ended up leaving that night to get back to the hotel late in the day with her resting comfortably.
Found out we'd got in at the Ronald McDonald house again before we left. PTL!
Next morning we woke up and went to the hotel we were at to ask about our shuttle to the hospital. The woman (*biting lip*) said the shuttle was over at 10 (it was 9:15). We said ok, she said no, there was no more shuttle for the day until 5:45 pm. the driver was gone. they had no driver. Much chaos later, we then had to pack 8 bags, and a 4 year old, walk 3 big San Fran blocks and partially uphillish to a bus station, board a bus, walk through a building, across the street and wait for a cab which then took us to our present location that is much closer and more accomodating than the hotel (I wont name but was horrible) that we were at. At least, however, we were able to get moved quickly and up to the hospital.
We got up to the hospital Wednesday to find out that our "friend" (I guess you say friend, well we talked to her several times, she kept eyes out on Cayleigh for us when we werent there because she stayed all the time and gave us friendly tips navagating the hospital ins and outs) Chris, who had a son that had Down Syndrome and had been having pneumonia, respiritory distress and was on a ventilator, but had battled a fever that wouldn't break (reached 107) had finally gone to be with the Lord just a few hours before we'd arrived. They'd moved Cayleigh into bed 2, instead of the bed 10 she'd been in next to Chris' son, and it was like..that was it. Everything was calm, the ICU was quiet (unlike the day before when we had to wade our way through the crash carts and equipments on standby outside our rooms in case Chris had problems just so we could wheel Cayleigh down to surgery) and there was the cleaning lady, mopping an empty room. Beds 9 and 10s monitors were off. It was very, very sad. Please lift her in your prayers tonight.
Cayleigh did pretty great secretion wise 1 day post op, (*yesterday), but today she had alot of gurgly sounds and secretions she was coughing up which requires suctioning. She's still getting pain meds... I hate leaving her there. We both do. It's hard having your heart in so many places. My older two children are with my mom and dad while they are in school this week. Juliette is with us and she is clearly having difficulties with the whole thing. Its just hard on everyone.
The hospital has BINGO for the kids and siblings every Thursday. We were lifted from precautions today so JUliette was allowed to go to the playroom just in time to play bingo. She sat down at a table originally across from a little boy with an IV Pole. Mind you, these IV poles have bags of medicines, some have urine or blood bags too, and machines, and feeding stuff. They are tall and take up room and are a little scary looking. But she sat and smiled at him. Then, two other childfren came in who, too, had IV poles. The one little boy had an open gown and something on his chest. I looked at her little face and whispered to her that I'd go sit with her in another area, and so she came with me. It's funny, you know, how these kids handle it. The kids who are sick and their siblings. We think its hard for parents, but its hard on them too. Some might say to shield them from it, that a hospital is no place for kids. I disagree. I think our children will be better from it. That they will appreciate their lives just a little bit more, that they will learn that other people are different than them, and that you can be friends with someone even if they are sick. It's amazing how the Child Life gal came in and talked to JUliette pre-surgery. She showed her a baby doll who had a trach. Juliette picked it up and just loved on it, wanted to keep it. As we were talking, i glanced over and saw Juliette blowing air into the trach on the baby. I smiled because she'd just been told thats how the baby breathes. Then they showed her a picture of a little boy who had a trach wit hthe tubing. It wasn't scary, so I ok'd it. What was Juliettes reaction? "Hey, thats Elmo! and a Zebra!" she saw the toys. Quick reaction, not even hesitating. I asked if that is normal. She simply say "sure it is, they see what they can familiarize themselves with first". That makes sense.
And so, with my baby with stitches, a tube in her throat and wires and breathing machines and all this crap - I just try to take Juliettes approach and just see Cayleigh. After all, she's what I can familiarize myself with... everything else is just stuff.
Day 2 Post Op
Well I will give a quick fast forward to you. Back on Tuesday of last week we were scheduled to admit Cayleigh into UCSF for a sleep study test. This would be a test, along with a bronchoscopy, that the doctors would do to see what issues she had with her airways. The night before, Cayleigh started having tons of snot coming out of her right nostril, retracting *pulling really hard in the ribs to breath* and having short, fast breaths. We made it through the night, putting her on 1.5 liters of Oxygen through her tanks and we got up to the hospital.
Long story short - we kept telling them something wasn't right with her, they took an xray and swabs for viruses and finally figured out we were right, and the same day she was admitted to the ICU for pneumonia. Later that day she spiked fevers of 103, contained with Tylenol. First round of virus tests came back negative. Xray came back with a spot of pneumonia in the bottom right lung. They started her on antibiotics. Wednesday came along, she had a fever of 102 again just in the morning around 6 am, they did a full panel for viruswa which is more extensive and took another xray. This time she had a really dense patch in the top right lung which was deflating the lung. Started her on bipap every 2 hours to reinflate, along with the extensive amounts of breathing treatments they did.
Friday came along, Pulmonary said they got her on the schedule for a bronchoscopy. They would have to sedate her for the procedure and it'd take about 30 minutes. Got ot the preop room and were present for the anesthesia doctor to argue and question the Pulmonary docs as to whether it was safe for her to have this procedure, and to be put under, with pneumonia and having only had a fever less than 24 hours prior. Uncomfortable. Very.
They proceeded with procedure, found that she has severe pharengeal malaysia (collapsed upper airway) and felt a trach would be the very best possible thing to do to allow her to breath. Back to the ICU, they thought they'd be moving her to the floor because she had been doing to well repsonding to treatments, etc before surgery (which they said would be about 2 weeks out). Well, that never happened and they kept her in the ICU.
Fast forward: Tuesday we got a phone call at the buttcrack of dawn from ENT surgeon. They were going to be doing the trach that morning. We got up to the hospital and finally got in to the surgery area around mid day. Again, had to see if it was ok with anesthesia to put her under. Benefits outweighed the risks. Surgery was then done and she was back in ICU. She was pretty out of it, on a ventilator and had stitches in her neck and attached to her chest from the trach. We ended up leaving that night to get back to the hotel late in the day with her resting comfortably.
Found out we'd got in at the Ronald McDonald house again before we left. PTL!
Next morning we woke up and went to the hotel we were at to ask about our shuttle to the hospital. The woman (*biting lip*) said the shuttle was over at 10 (it was 9:15). We said ok, she said no, there was no more shuttle for the day until 5:45 pm. the driver was gone. they had no driver. Much chaos later, we then had to pack 8 bags, and a 4 year old, walk 3 big San Fran blocks and partially uphillish to a bus station, board a bus, walk through a building, across the street and wait for a cab which then took us to our present location that is much closer and more accomodating than the hotel (I wont name but was horrible) that we were at. At least, however, we were able to get moved quickly and up to the hospital.
We got up to the hospital Wednesday to find out that our "friend" (I guess you say friend, well we talked to her several times, she kept eyes out on Cayleigh for us when we werent there because she stayed all the time and gave us friendly tips navagating the hospital ins and outs) Chris, who had a son that had Down Syndrome and had been having pneumonia, respiritory distress and was on a ventilator, but had battled a fever that wouldn't break (reached 107) had finally gone to be with the Lord just a few hours before we'd arrived. They'd moved Cayleigh into bed 2, instead of the bed 10 she'd been in next to Chris' son, and it was like..that was it. Everything was calm, the ICU was quiet (unlike the day before when we had to wade our way through the crash carts and equipments on standby outside our rooms in case Chris had problems just so we could wheel Cayleigh down to surgery) and there was the cleaning lady, mopping an empty room. Beds 9 and 10s monitors were off. It was very, very sad. Please lift her in your prayers tonight.
Cayleigh did pretty great secretion wise 1 day post op, (*yesterday), but today she had alot of gurgly sounds and secretions she was coughing up which requires suctioning. She's still getting pain meds... I hate leaving her there. We both do. It's hard having your heart in so many places. My older two children are with my mom and dad while they are in school this week. Juliette is with us and she is clearly having difficulties with the whole thing. Its just hard on everyone.
The hospital has BINGO for the kids and siblings every Thursday. We were lifted from precautions today so JUliette was allowed to go to the playroom just in time to play bingo. She sat down at a table originally across from a little boy with an IV Pole. Mind you, these IV poles have bags of medicines, some have urine or blood bags too, and machines, and feeding stuff. They are tall and take up room and are a little scary looking. But she sat and smiled at him. Then, two other childfren came in who, too, had IV poles. The one little boy had an open gown and something on his chest. I looked at her little face and whispered to her that I'd go sit with her in another area, and so she came with me. It's funny, you know, how these kids handle it. The kids who are sick and their siblings. We think its hard for parents, but its hard on them too. Some might say to shield them from it, that a hospital is no place for kids. I disagree. I think our children will be better from it. That they will appreciate their lives just a little bit more, that they will learn that other people are different than them, and that you can be friends with someone even if they are sick. It's amazing how the Child Life gal came in and talked to JUliette pre-surgery. She showed her a baby doll who had a trach. Juliette picked it up and just loved on it, wanted to keep it. As we were talking, i glanced over and saw Juliette blowing air into the trach on the baby. I smiled because she'd just been told thats how the baby breathes. Then they showed her a picture of a little boy who had a trach wit hthe tubing. It wasn't scary, so I ok'd it. What was Juliettes reaction? "Hey, thats Elmo! and a Zebra!" she saw the toys. Quick reaction, not even hesitating. I asked if that is normal. She simply say "sure it is, they see what they can familiarize themselves with first". That makes sense.
And so, with my baby with stitches, a tube in her throat and wires and breathing machines and all this crap - I just try to take Juliettes approach and just see Cayleigh. After all, she's what I can familiarize myself with... everything else is just stuff.
Tuesday, August 30, 2011
"Upgrade"
It's still Tuesday, August 30th 2011
Let me Upgrade Ya....
We got a call around 5 this afternoon from the charge nurse in the Pediatric Unit here at UCSF saying that we were going to be moving Cayleigh to the ICU. She was originally admitted this morning as a normal admission for a Sleep Study that the Pulmonary Doctor wanted done as a final step before being given a tracheatomy. Insurance required this test before they'd approve the trach.
Anyhow, last night she started having a hard time breathing and we increased her oxygen to 1 liter. Her heartrate went high, she was breathing shallow and rapidly, and we managed her heartrate with Tylenol. Despite all of the boogers pouring out of her nostrils, she made it through the night.
We packed Juliette in the car with us this morning, leaving at 8 am, and made it to the hospital around 11:00 am with traffic. We checked in, waited for a bed and were taken upstairs to the standard Peds Unit. Our nurse was a 7 month pregnant lady who was quite nice, very pretty but obviously busy with discharges, dressing changes, meds and etc with other patients. We started noticing that she was breathing even more rapidly, shallowly and wasn't paying attention to us like she normally does when she's focusing so hard on breathing.
A few hours later, and about ten people told over and over by Nic and myself, they finally came in and decided that because she'd desated to 78, staying in the 80s for quite some time and even on 2 liters, and not responding to two breathing treatments or deep suctioning, they needed to transfer her. Apparently, the doctors who were there (when we were not) were concerned with her focused up to the right and having super stiffness and so they gave her a mild dose of some seizure medication. When we got to the ICU she looked stoned, heartrate was up in the 200's, BP high, respiratory rate really high and oxygen not high. Praise the Lord that both bloodgas draws were normal!
She had an apnea episode where she stopped breathing for a few seconds and the nurse called out "We need to tube her!" but the doctor on call said no, put her on high flow (10 liters in the cannula) and let's see how she does.
The other doctor, main old pulmonary guy, had her scheduled for a bronchioscopy in the morning which is when they'd put her under and do a scope all the way down to her lungs to make sure everything looks good, that there arent any abnormal structures to her airways, lungs or vessels around her lungs that might be causing the breathing problems before they do a trach.
I think I have everything on here right now but I'm pretty sleep deprived as it is. We'll post updates as we can. She's currently at 18s on heartrate, her oxygen is 100, respiratory rateis 68 and bp looks ok I suppose. No tube yet but they're preparing to possibly do that because she's struggling to breathe so hard.
Let me Upgrade Ya....
We got a call around 5 this afternoon from the charge nurse in the Pediatric Unit here at UCSF saying that we were going to be moving Cayleigh to the ICU. She was originally admitted this morning as a normal admission for a Sleep Study that the Pulmonary Doctor wanted done as a final step before being given a tracheatomy. Insurance required this test before they'd approve the trach.
Anyhow, last night she started having a hard time breathing and we increased her oxygen to 1 liter. Her heartrate went high, she was breathing shallow and rapidly, and we managed her heartrate with Tylenol. Despite all of the boogers pouring out of her nostrils, she made it through the night.
We packed Juliette in the car with us this morning, leaving at 8 am, and made it to the hospital around 11:00 am with traffic. We checked in, waited for a bed and were taken upstairs to the standard Peds Unit. Our nurse was a 7 month pregnant lady who was quite nice, very pretty but obviously busy with discharges, dressing changes, meds and etc with other patients. We started noticing that she was breathing even more rapidly, shallowly and wasn't paying attention to us like she normally does when she's focusing so hard on breathing.
A few hours later, and about ten people told over and over by Nic and myself, they finally came in and decided that because she'd desated to 78, staying in the 80s for quite some time and even on 2 liters, and not responding to two breathing treatments or deep suctioning, they needed to transfer her. Apparently, the doctors who were there (when we were not) were concerned with her focused up to the right and having super stiffness and so they gave her a mild dose of some seizure medication. When we got to the ICU she looked stoned, heartrate was up in the 200's, BP high, respiratory rate really high and oxygen not high. Praise the Lord that both bloodgas draws were normal!
She had an apnea episode where she stopped breathing for a few seconds and the nurse called out "We need to tube her!" but the doctor on call said no, put her on high flow (10 liters in the cannula) and let's see how she does.
The other doctor, main old pulmonary guy, had her scheduled for a bronchioscopy in the morning which is when they'd put her under and do a scope all the way down to her lungs to make sure everything looks good, that there arent any abnormal structures to her airways, lungs or vessels around her lungs that might be causing the breathing problems before they do a trach.
I think I have everything on here right now but I'm pretty sleep deprived as it is. We'll post updates as we can. She's currently at 18s on heartrate, her oxygen is 100, respiratory rateis 68 and bp looks ok I suppose. No tube yet but they're preparing to possibly do that because she's struggling to breathe so hard.
Today
Tuesday August 30th,2011
This blog brought to you by me...from my phone
I will keep this relatively short to spare my thumbs the pain of texting on this phone. Last night, Cayleigh started having excessive 'letdown' from her nose. At times white and often just clear...but we are talking extreme amounts of suctioning needed. I would say way more than usual but then noone quite understand how often we have to suction her. How, we cannot even for a moment take Cayleigh further than arms reach of a suction bulb or suction machine. And not just any bulb..you can't buy the heafty ones we got from our numerous hospital stays at the store. Trust me..we have tried.
I guess I got off target for a second there...so there goes keeping this short and sweet. Her oxygen stayed pretty much between 88 and 94 all night long and heartrate was between 160 and 188 pretty consistently. It dipped lower here and there..and her O2 shot higher ...ahh just got a call from the charge nurse on the Pediatric unit. If this clears up how har d its been for her to breathe: cayleigh just got two treatments for breathing and isn't making any real changes. The doctors are in with her now and she is being moved to the icu. We are dropping julez off to my dad, along with the vehicle we drove up here, and are headed back. Prayers requested. Please keep her breathing in your prayers. Give her doctors wisdom and compassion.
This blog brought to you by me...from my phone
I will keep this relatively short to spare my thumbs the pain of texting on this phone. Last night, Cayleigh started having excessive 'letdown' from her nose. At times white and often just clear...but we are talking extreme amounts of suctioning needed. I would say way more than usual but then noone quite understand how often we have to suction her. How, we cannot even for a moment take Cayleigh further than arms reach of a suction bulb or suction machine. And not just any bulb..you can't buy the heafty ones we got from our numerous hospital stays at the store. Trust me..we have tried.
I guess I got off target for a second there...so there goes keeping this short and sweet. Her oxygen stayed pretty much between 88 and 94 all night long and heartrate was between 160 and 188 pretty consistently. It dipped lower here and there..and her O2 shot higher ...ahh just got a call from the charge nurse on the Pediatric unit. If this clears up how har d its been for her to breathe: cayleigh just got two treatments for breathing and isn't making any real changes. The doctors are in with her now and she is being moved to the icu. We are dropping julez off to my dad, along with the vehicle we drove up here, and are headed back. Prayers requested. Please keep her breathing in your prayers. Give her doctors wisdom and compassion.
Wednesday, August 10, 2011
News is News
Tuesday, August 9, 2011
Doctor Follow Up
Last night, and really the last several times we'd been with Cayleigh since extubation (even when at the hospital) she kept making her crying face. We gave her Tylenol after having checked diaper, temperature, every part of her body, picking her up, rocking her, etc. and it still didn't really make any difference 1/2-an hour and a half later. At the hospital, the nurses were able to give her morphine to help her become comfortable. At home, however, we don't have that luxury. We thought maybe she was teething, even though no buds are showing or felt, so we used oragel and that didn't help either.
After having called the dr, we made an appt the next day (today) with a Dr. Bossy that is at Dr. Weger's practice. It dawned on us that maybe it was a poop problem and that, with all the medications and pain meds, she might be really backed up. We gave her half a suppository but she ended up pooping that out anyhow... and, honestly, right before we gave it to her she let out a big poop. I guess the mommy tummy rubbing helped. Daddy and I were relieved.
Anyhow, today we took her to the dr. She weighed her in at 12 lbs 2 ounces. Far off from the 14 lbs that the hospital had her weigh in, but up 1 lb from her last dr visit 20 days ago. We went over all that'd happened, our concerns, etc and decided she's ok, got med refills and decided that we'd postpone making her wear her helmet or go to Physical Therapy at least for the remainder of this week.
The dr ordered lab results for the following:
1. Cayleigh has a really low hemoglobin level
Causes: They aren't really sure (or at least won't say) but it could just be that she is anemic. They want to rule out any other potential problems with the test
and
2. The hospital wants to have her immune system checked
"They" want to rule out her being immune supressed for any reason (congenital) because she's had pneumonia twice (well once that we know of, the second time they werent even sure that's what it was) and because she's had the rhino virus twice. Which, basically, is just a cold. So what, right? I mean kids get colds -especially with germy siblings. Dr Bossy doesn't think there is anything wrong with her immune system but they, again, want to rule anything out that might be a problem
So, we are going to take her tomorrow to get her blood taken (DISLIKE) so please lift her in prayer. We would ask that she be protected from sickness, that Nic and I would have wisdom in caring for her, that she would remain healthy, gain weight well, be more interactive, alert, able to move, not need oxygen, not need a feeding tube and that the Lord would heal her mind and restore her completely.
We believe this will all come to pass, and we just continue to pray for her, for one another and for our family as we continue to walk down this path.
On the bright side.....
Cayleigh has become QUITE the wiggler. She was propped on the pillows, upright, and started wiggling (Using her upper body) to the left and got all the way down to her hip with her upper body/head. I then propped her back up and she got mad. Well, seconds later, she did it AGAIN. I propper her up, she got mad. This time I called to her and she wiggled toward me with her upper body again. I ended up video taping it..she's going to be JUST fine. I know it! Looks like we'll be baby proofing soon!
Doctor Follow Up
Last night, and really the last several times we'd been with Cayleigh since extubation (even when at the hospital) she kept making her crying face. We gave her Tylenol after having checked diaper, temperature, every part of her body, picking her up, rocking her, etc. and it still didn't really make any difference 1/2-an hour and a half later. At the hospital, the nurses were able to give her morphine to help her become comfortable. At home, however, we don't have that luxury. We thought maybe she was teething, even though no buds are showing or felt, so we used oragel and that didn't help either.
After having called the dr, we made an appt the next day (today) with a Dr. Bossy that is at Dr. Weger's practice. It dawned on us that maybe it was a poop problem and that, with all the medications and pain meds, she might be really backed up. We gave her half a suppository but she ended up pooping that out anyhow... and, honestly, right before we gave it to her she let out a big poop. I guess the mommy tummy rubbing helped. Daddy and I were relieved.
Anyhow, today we took her to the dr. She weighed her in at 12 lbs 2 ounces. Far off from the 14 lbs that the hospital had her weigh in, but up 1 lb from her last dr visit 20 days ago. We went over all that'd happened, our concerns, etc and decided she's ok, got med refills and decided that we'd postpone making her wear her helmet or go to Physical Therapy at least for the remainder of this week.
The dr ordered lab results for the following:
1. Cayleigh has a really low hemoglobin level
Causes: They aren't really sure (or at least won't say) but it could just be that she is anemic. They want to rule out any other potential problems with the test
and
2. The hospital wants to have her immune system checked
"They" want to rule out her being immune supressed for any reason (congenital) because she's had pneumonia twice (well once that we know of, the second time they werent even sure that's what it was) and because she's had the rhino virus twice. Which, basically, is just a cold. So what, right? I mean kids get colds -especially with germy siblings. Dr Bossy doesn't think there is anything wrong with her immune system but they, again, want to rule anything out that might be a problem
So, we are going to take her tomorrow to get her blood taken (DISLIKE) so please lift her in prayer. We would ask that she be protected from sickness, that Nic and I would have wisdom in caring for her, that she would remain healthy, gain weight well, be more interactive, alert, able to move, not need oxygen, not need a feeding tube and that the Lord would heal her mind and restore her completely.
We believe this will all come to pass, and we just continue to pray for her, for one another and for our family as we continue to walk down this path.
On the bright side.....
Cayleigh has become QUITE the wiggler. She was propped on the pillows, upright, and started wiggling (Using her upper body) to the left and got all the way down to her hip with her upper body/head. I then propped her back up and she got mad. Well, seconds later, she did it AGAIN. I propper her up, she got mad. This time I called to her and she wiggled toward me with her upper body again. I ended up video taping it..she's going to be JUST fine. I know it! Looks like we'll be baby proofing soon!
Monday, August 1, 2011
In, Out and In Again
Monday August 1, 2011
I'm in the parents waiting room at CHO (childrens hospital oakland) while Cayleigh gets another breathing treatment by the Respitory Therapist (RT). I thought I'd post a quick update for everyone following this most recent hospitalization. If you haven't already, please start reading from the very beginning to really get an understanding of just what a miracle Cayleigh is.
Today I've taken the day shift to be with Cayleigh. My husband is going to be taking the afternoon shift and staying the night.
When I got here it was explained that Cayleigh had been extubated this morning. This means that they tried taking her off of the ventilator, with the tube out of her throat. They did this because she was awake, alert and looking around and they turned the ventilator machine off (tube still in her Trachea) and she was doing ok breathing. So, they then pulled the tube out of her throat and watched. Apparently, from what I've been told, she had severe trouble breathing, air wasn't passing through her lungs, she stopped looking alert and around and began focusing on trying her very best to breathe but simply couldn't get past all of the secretions and mucus plugging her up. They then paralyzed her again, and reinserted the tube and turned the machine back on. While they had her extubated, they did another BloodGas draw and her PH went way down, and the CO2 went way up. Not good signs.
When I got up here you can see what she looked like in the picture below. She's out of it. I sat and was talking with her, and the nurses, and she began wiggling and squirming around...alot. Well, apparently that was too much moving around and she was given another sedation. Then, she was out of it again.
I met with the doctors, the nurses and we got her started back on feeds again. I gave her a bollus feed of half her normal amount. So thats an upside...she's at least going to be getting her feeds.
At this point we aren't really sure whats too wrong with her - aside from thinking it must be a nasty virus. So, it will be at least 48 hours before she's taken off of the ventilator again and assesed. They me vriuses usually spike between 3 and 5 days and today would be day 3.. they think. So, keep her in your prayers that this all goes away, that she can breathe and pass air successfully and that she gets the heck out of the hospital and back home where she belongs.
I'm in the parents waiting room at CHO (childrens hospital oakland) while Cayleigh gets another breathing treatment by the Respitory Therapist (RT). I thought I'd post a quick update for everyone following this most recent hospitalization. If you haven't already, please start reading from the very beginning to really get an understanding of just what a miracle Cayleigh is.
Today I've taken the day shift to be with Cayleigh. My husband is going to be taking the afternoon shift and staying the night.
When I got here it was explained that Cayleigh had been extubated this morning. This means that they tried taking her off of the ventilator, with the tube out of her throat. They did this because she was awake, alert and looking around and they turned the ventilator machine off (tube still in her Trachea) and she was doing ok breathing. So, they then pulled the tube out of her throat and watched. Apparently, from what I've been told, she had severe trouble breathing, air wasn't passing through her lungs, she stopped looking alert and around and began focusing on trying her very best to breathe but simply couldn't get past all of the secretions and mucus plugging her up. They then paralyzed her again, and reinserted the tube and turned the machine back on. While they had her extubated, they did another BloodGas draw and her PH went way down, and the CO2 went way up. Not good signs.
When I got up here you can see what she looked like in the picture below. She's out of it. I sat and was talking with her, and the nurses, and she began wiggling and squirming around...alot. Well, apparently that was too much moving around and she was given another sedation. Then, she was out of it again.
I met with the doctors, the nurses and we got her started back on feeds again. I gave her a bollus feed of half her normal amount. So thats an upside...she's at least going to be getting her feeds.
At this point we aren't really sure whats too wrong with her - aside from thinking it must be a nasty virus. So, it will be at least 48 hours before she's taken off of the ventilator again and assesed. They me vriuses usually spike between 3 and 5 days and today would be day 3.. they think. So, keep her in your prayers that this all goes away, that she can breathe and pass air successfully and that she gets the heck out of the hospital and back home where she belongs.
Tubing
Good Morning
Monday, August 1, 2011
I called the hospital first thing this morning to check on Cayleigh. The nurse then handed the phone to the Doctor, never a good sign. She explained to me that they had turned off the ventilator this morning, with Cayleigh still intubated, and she was breathing on her own okay. Mind you, the tube was still in place and going directly into her trachea. They then extubated her and she began having extreme difficulty getting past all the secretions and so they did a bloodgas on her again. Her CO2 began creeping back up, her PH soaring down. SO, they had to re-intubate my baby. She says it will be at least 48 hours before they'll try again.
Screw tubing.
Monday, August 1, 2011
I called the hospital first thing this morning to check on Cayleigh. The nurse then handed the phone to the Doctor, never a good sign. She explained to me that they had turned off the ventilator this morning, with Cayleigh still intubated, and she was breathing on her own okay. Mind you, the tube was still in place and going directly into her trachea. They then extubated her and she began having extreme difficulty getting past all the secretions and so they did a bloodgas on her again. Her CO2 began creeping back up, her PH soaring down. SO, they had to re-intubate my baby. She says it will be at least 48 hours before they'll try again.
Screw tubing.
Sunday, July 31, 2011
Sweet Cayleigh
It's still Sunday... July 31st sucks
WARNING: SOME IMAGES IN THIS POST ARE GRAPHIC
Nic and I are home, just got here actually. Nothing new to report outside of the following:
1. We got to the hospital and found out that Cayleigh had spiked a fever. 102.8 They'd given her Tylenol but her heartrate was still in the low 200s when we'd arrived. By the time we left it 'went down' to 170 , and her fever down to 99.8
2. Jessica (my sister) and Gary (my brother in law) came up to show their support of Cayleigh, Nic and I - it was a much needed break from the chaos of the day. Thank you for making us laugh
3. They removed the TibLine (I think that's what the thing in her leg was called - - see the picture below)from Cayleighs Tibia in her left leg.
4. Before removing the TibLine, they added a 2nd IV to her left hand. (she has 2 in that hand). They also used an ultrasound machine and put a line into the ARTERY in her right arm. The Artery line is to draw blood. The 2 IV lines are to give fluids, meds, etc
5. While there, Cayleigh had tears in her eyes that I kept wiping away while I was talking to her and I notified the nurse. They gave her some more medicine to keep her sedated, out of it and for pain -morphine.
6. We were told she'll be intubated for at the minimum of 24 hours
7. Their xrays, so we were told and from the best of my 4 hours sleep memory - showed no pneumonia in the lungs. They did another round of cultures, etc
8. When they'd intubated Cayleigh, we found out, they suctioned out TONS of gunk from her upper chest, airway and nose
9. We're both beat. Came home tonight and this week comes the juggling of the kids. We can't take them up to the ICU, and one of us needs to stay. So it'll be I go in the morning, drive back (1 hour) in the afternoon and Nic goes and will stay the night.
10. I've started having mild panic attacks again
11. Cayleigh is on No-Feeds
12. She's not having very much urine. This is probably due, in part, to the fever and also because she barely had anything to eat today. They're giving her fluids.
That's all I've got for now. We'll keep you all posted.
Nic and I are home, just got here actually. Nothing new to report outside of the following:
1. We got to the hospital and found out that Cayleigh had spiked a fever. 102.8 They'd given her Tylenol but her heartrate was still in the low 200s when we'd arrived. By the time we left it 'went down' to 170 , and her fever down to 99.8
2. Jessica (my sister) and Gary (my brother in law) came up to show their support of Cayleigh, Nic and I - it was a much needed break from the chaos of the day. Thank you for making us laugh
3. They removed the TibLine (I think that's what the thing in her leg was called - - see the picture below)from Cayleighs Tibia in her left leg.
4. Before removing the TibLine, they added a 2nd IV to her left hand. (she has 2 in that hand). They also used an ultrasound machine and put a line into the ARTERY in her right arm. The Artery line is to draw blood. The 2 IV lines are to give fluids, meds, etc
5. While there, Cayleigh had tears in her eyes that I kept wiping away while I was talking to her and I notified the nurse. They gave her some more medicine to keep her sedated, out of it and for pain -morphine.
6. We were told she'll be intubated for at the minimum of 24 hours
7. Their xrays, so we were told and from the best of my 4 hours sleep memory - showed no pneumonia in the lungs. They did another round of cultures, etc
8. When they'd intubated Cayleigh, we found out, they suctioned out TONS of gunk from her upper chest, airway and nose
9. We're both beat. Came home tonight and this week comes the juggling of the kids. We can't take them up to the ICU, and one of us needs to stay. So it'll be I go in the morning, drive back (1 hour) in the afternoon and Nic goes and will stay the night.
10. I've started having mild panic attacks again
11. Cayleigh is on No-Feeds
12. She's not having very much urine. This is probably due, in part, to the fever and also because she barely had anything to eat today. They're giving her fluids.
That's all I've got for now. We'll keep you all posted.
I've seen better days
The Great Unknown
Sunday, July 31, 2011
Last night, starting around 6:00 pm, NIc and I noticed that Cayleigh was having a great deal of secretions - even moreso than normal. We ended up putting her to bed with a chair pulled up next to her crib, and I sat in the chair until 2:30 in the morning with my hand on her chest so that I could be close when she had a bunch of snot coming out of her nose, wrenched or otherwise coughed and tried to get whatever it was stuck in her throat, out of her throat. Her heartrate was around 170s when I finally layed down to sleep next to Nic. (within arms reach of the crib, well, Nic's arms reach)
At 6 am this morning Nic woke me up. He explained that Cayleighs heartrate had been up in the 200s for the last 10 minutes and he'd given her Tylenol to bring it down. I noticed she was having a very difficult time, taking as deep of breaths as she could, but rapidly, and still having no sucess. Her heartrate stayed up even after we took her out of her crib, comforted her as best possible and the Tylenol should have been working. So, Nic said we should take her to the hospital. We were going to drive directly to Children's Oakland hospital, but I had a feeling in my heart that if she continued having a heartrate in the 200s that she could go into cardiac arrest. I dialed 911. Within a matter of minutes Mountain House firefighters were at the door. Her heartrate touched 220 right before they came. When they got to the room, her heartrate was in the 190s, oxygen was only 80%. They put a mask on her with 10 liters of Oxygen (typically on 1/2 liter)and her heartrate came down to 180/170s and oxygen was around 93%.
The medics arrived shorty thereafter and explained to us they couldn't take her to Childrens hospital right away because she wasn't stable enough to endure the transport ride (an hour long in good traffic). They were going to airlift her from our house, but the weather was too foggy to do so. I left the house, barefoot and in pajama shorts, holding my daughter and went in the ambulance with Cayleigh.
We arrived at the hospital and they were doing a round of questions with me. My wonderful Nic showed up minutes later (I think he flew) with my pump, shoes, her meds, diaper bag, snacks for us and a heavy heart as we stood around, waiting for the next step.
They did an Xray to check for pneumonia, which came back minutes later as a "Rotated Xray" which meant it wasnt straight on, but the Dr said he didnt think there was any pneumonia. After that, the blood work, full work up, came back as normal. They'd said something in the work was just a bit high, but there wasn't seeming to be any signs of infection.
Cayleigh was still on the O2 at 3 liters as the respiratory tech (RT) came in to give her a breathing treatment. She also did a BloodGas which is drawing blood to check the various levels of gases in her blood.
The results came back with her CO2 (Carbon Dioxide) at 80 ... which is WAY too high. They explained to us that it meant she wasn't breathing out the CO2 she needed to be which was turning acidic in her body. I asked what caused it... they didn't know. Said either it was a gradual progression or it was acute (meaning a sudden onset). If it was accute, they said, it was something very bad. We still dont know anything yet. They said it could be caused by various things but that they wouldnt know anything until more tests were run (at CHO)
Then they told us they'd need to do CPAP. Well, they weren't satisfied that would work effectively, and with the recommendation of the doctors here at CHO, the airlift (Helicopter guys) guys had to put an IV in to get the medicine into her system that she needed before Intubating her (sticking a breathing tube down her throat) so they could get her O2 into her lungs so that they could get that CO2 out.
Unfortunately they weren't able to get a good iv in. This is because of the high CO2 and her heart working so hard that her veins had begun to narrow. They informed us they'd have to use a drill and insert a line directly into her Tibia. This would get the meds needed to sedate her, and paralyze her body, and pain meds needed directly into her bone marrow.
They did that (I walked out), then kicked us out to intubate her, and we headed to the house to pick up some items as soon as we knew she was stable to be transported in the helicopter.
We arrived here at Childrens Hospital Oakland just a little while ago and were greeted with a "You cant see her right now because the dr and nurses are trying to get an iv in" which didn't sit well. Voiced opinions about that later, we were ok with sittin the waiting room and so here we are, waiting to find out what the HELL is going on.
Here's some pictures .. they are graphic . be warned.
Sunday, July 31, 2011
Last night, starting around 6:00 pm, NIc and I noticed that Cayleigh was having a great deal of secretions - even moreso than normal. We ended up putting her to bed with a chair pulled up next to her crib, and I sat in the chair until 2:30 in the morning with my hand on her chest so that I could be close when she had a bunch of snot coming out of her nose, wrenched or otherwise coughed and tried to get whatever it was stuck in her throat, out of her throat. Her heartrate was around 170s when I finally layed down to sleep next to Nic. (within arms reach of the crib, well, Nic's arms reach)
At 6 am this morning Nic woke me up. He explained that Cayleighs heartrate had been up in the 200s for the last 10 minutes and he'd given her Tylenol to bring it down. I noticed she was having a very difficult time, taking as deep of breaths as she could, but rapidly, and still having no sucess. Her heartrate stayed up even after we took her out of her crib, comforted her as best possible and the Tylenol should have been working. So, Nic said we should take her to the hospital. We were going to drive directly to Children's Oakland hospital, but I had a feeling in my heart that if she continued having a heartrate in the 200s that she could go into cardiac arrest. I dialed 911. Within a matter of minutes Mountain House firefighters were at the door. Her heartrate touched 220 right before they came. When they got to the room, her heartrate was in the 190s, oxygen was only 80%. They put a mask on her with 10 liters of Oxygen (typically on 1/2 liter)and her heartrate came down to 180/170s and oxygen was around 93%.
The medics arrived shorty thereafter and explained to us they couldn't take her to Childrens hospital right away because she wasn't stable enough to endure the transport ride (an hour long in good traffic). They were going to airlift her from our house, but the weather was too foggy to do so. I left the house, barefoot and in pajama shorts, holding my daughter and went in the ambulance with Cayleigh.
We arrived at the hospital and they were doing a round of questions with me. My wonderful Nic showed up minutes later (I think he flew) with my pump, shoes, her meds, diaper bag, snacks for us and a heavy heart as we stood around, waiting for the next step.
They did an Xray to check for pneumonia, which came back minutes later as a "Rotated Xray" which meant it wasnt straight on, but the Dr said he didnt think there was any pneumonia. After that, the blood work, full work up, came back as normal. They'd said something in the work was just a bit high, but there wasn't seeming to be any signs of infection.
Cayleigh was still on the O2 at 3 liters as the respiratory tech (RT) came in to give her a breathing treatment. She also did a BloodGas which is drawing blood to check the various levels of gases in her blood.
The results came back with her CO2 (Carbon Dioxide) at 80 ... which is WAY too high. They explained to us that it meant she wasn't breathing out the CO2 she needed to be which was turning acidic in her body. I asked what caused it... they didn't know. Said either it was a gradual progression or it was acute (meaning a sudden onset). If it was accute, they said, it was something very bad. We still dont know anything yet. They said it could be caused by various things but that they wouldnt know anything until more tests were run (at CHO)
Then they told us they'd need to do CPAP. Well, they weren't satisfied that would work effectively, and with the recommendation of the doctors here at CHO, the airlift (Helicopter guys) guys had to put an IV in to get the medicine into her system that she needed before Intubating her (sticking a breathing tube down her throat) so they could get her O2 into her lungs so that they could get that CO2 out.
Unfortunately they weren't able to get a good iv in. This is because of the high CO2 and her heart working so hard that her veins had begun to narrow. They informed us they'd have to use a drill and insert a line directly into her Tibia. This would get the meds needed to sedate her, and paralyze her body, and pain meds needed directly into her bone marrow.
They did that (I walked out), then kicked us out to intubate her, and we headed to the house to pick up some items as soon as we knew she was stable to be transported in the helicopter.
We arrived here at Childrens Hospital Oakland just a little while ago and were greeted with a "You cant see her right now because the dr and nurses are trying to get an iv in" which didn't sit well. Voiced opinions about that later, we were ok with sittin the waiting room and so here we are, waiting to find out what the HELL is going on.
Here's some pictures .. they are graphic . be warned.
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