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.
Tuesday, August 30, 2011
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.
Sunday, June 5, 2011
No News Is No News,
12:24 am... I've been up almost 24 hours
Just a quick update as I pump (you're welcome for that visual). I got back to the hospital with the kiddos after stopping off to pick them up some coloring things. Can I just say that I remember when markers and crayons and colored pencils were like a dollar? Geesh. 9.99 for colored pencils.. yeah, if they are made out of GOLD.
Anyhow, I got up to the hospital and on my way there I'd received a call from Cayleighs night nurse. Shes a tall, curly long brown haired girl with fair skin and pretty eyes who we met last night. She asked me if she could take Cayleigh from her current wing of the ICN (Intensive Care Nursery) to the area where her 2 other babies were. I say yes. She didn't want to run back and forth because Cayleigh is so precious and needs TLC. I like her
We arrive, in the rain *sigh*, and I walk in to find Cayleigh wide awake, staring at the Tiny Mobile swing above her head. I'm excited because I'd brought her Aveeno Baby Wash (she gets a breakout if you use ANYTHING else), several snappy outfits, socks and hats for her. I also brought her special oil that I do my massages with her during ROM time. Cayleigh is 'eating' and so I just hold her hand and we talk about the brightly colored animals on the mobile. I talk to her about Mozart and Bach and ask her which song she likes better..she didn't respond to me at all. she was totaly fixated on that dang mobile. I will say that she was tracking the animals though. I think she just decided to ignore me today.
After she was done, I decided it was bath time. My nurse went to break and I had some lady I didn't care for covering for her. Another baby, Lexi (who is a HUGE 6 month old thats absolutely adorable) managed to pull out the feeding tube that goes in her nose to her stomach. It was pulling teeth to get a wash basin, but I got one. We had a bath, a massage and did ROM and she was a happy Bug.
Unfortunately at this hospital they don't have crap in the way of child activities for siblings. The parking is MUCH cheaper, and I don't have to deal with SF or the people and traffic there.. but gosh does it have its downfalls. So the kids can't be bedside because Cayleigh is on 'droplets precautions', but the nurse I like came back and said they could sit in the empty bed area. This new side we're on has only 3 babies and its big, open and really quiet. Or, it was until my kids got in there. We stayed not too long afterwards but the kiddos got a real kick out of Lexi. The nurse is her primarty and you can tell she loves her. She tells me that I should talk to the dr so that she can be Cayleigh's primary too if she'll be there long. I tell the nurse I'm going to make Lexi an over the top bow headband and bring it tomorrow, she seems excited. :) (I've already made it - see the pics)
I prayed with Cayleigh and I'm so exhausted right now and feel so stressed with Nic gone and the kids not being able to have anything to do or to be in the parents lounge alone because they are under 10 that I just need prayers for peace.
I'd like to ask for prayers for Cayleigh:
Please pray that:
1. The doctors have divine wisdom and guidance in testing and treating Cayleigh to 'cure' her desats altogether
2. That Cayleigh immediately have a strong swallow, strong suck, strong cough
3. That she have fluid, easy, pain free movements in all extremeties
4. That she not only focus on, but respond and interact with me (us/others)
5. That Cayleigh have peace while her family isn't with her, that she not be scared or lonely (makes me tear up thinking about it) and have total comfort . That the Lord would sit by her bedside and talk to her and comfort her. I believe it
6. That she have a sound mound.
Pray for Nic:
1. That he be safe during his travelling on planes and in vehicles
2. That he be a light to shine for Jesus Christ amongst non-believers and that he can share his faith and what God has done in his life recently through Cayleigh Jean
3. That he be safe during working. along with his coworkers
4. That he have peace and comfort during his time away
Pray for the kids:
1. That they behave
2. That they have peace and comfort with all these changes going on
AMEN
Lexi's bow :)
Just a quick update as I pump (you're welcome for that visual). I got back to the hospital with the kiddos after stopping off to pick them up some coloring things. Can I just say that I remember when markers and crayons and colored pencils were like a dollar? Geesh. 9.99 for colored pencils.. yeah, if they are made out of GOLD.
Anyhow, I got up to the hospital and on my way there I'd received a call from Cayleighs night nurse. Shes a tall, curly long brown haired girl with fair skin and pretty eyes who we met last night. She asked me if she could take Cayleigh from her current wing of the ICN (Intensive Care Nursery) to the area where her 2 other babies were. I say yes. She didn't want to run back and forth because Cayleigh is so precious and needs TLC. I like her
We arrive, in the rain *sigh*, and I walk in to find Cayleigh wide awake, staring at the Tiny Mobile swing above her head. I'm excited because I'd brought her Aveeno Baby Wash (she gets a breakout if you use ANYTHING else), several snappy outfits, socks and hats for her. I also brought her special oil that I do my massages with her during ROM time. Cayleigh is 'eating' and so I just hold her hand and we talk about the brightly colored animals on the mobile. I talk to her about Mozart and Bach and ask her which song she likes better..she didn't respond to me at all. she was totaly fixated on that dang mobile. I will say that she was tracking the animals though. I think she just decided to ignore me today.
After she was done, I decided it was bath time. My nurse went to break and I had some lady I didn't care for covering for her. Another baby, Lexi (who is a HUGE 6 month old thats absolutely adorable) managed to pull out the feeding tube that goes in her nose to her stomach. It was pulling teeth to get a wash basin, but I got one. We had a bath, a massage and did ROM and she was a happy Bug.
Unfortunately at this hospital they don't have crap in the way of child activities for siblings. The parking is MUCH cheaper, and I don't have to deal with SF or the people and traffic there.. but gosh does it have its downfalls. So the kids can't be bedside because Cayleigh is on 'droplets precautions', but the nurse I like came back and said they could sit in the empty bed area. This new side we're on has only 3 babies and its big, open and really quiet. Or, it was until my kids got in there. We stayed not too long afterwards but the kiddos got a real kick out of Lexi. The nurse is her primarty and you can tell she loves her. She tells me that I should talk to the dr so that she can be Cayleigh's primary too if she'll be there long. I tell the nurse I'm going to make Lexi an over the top bow headband and bring it tomorrow, she seems excited. :) (I've already made it - see the pics)
I prayed with Cayleigh and I'm so exhausted right now and feel so stressed with Nic gone and the kids not being able to have anything to do or to be in the parents lounge alone because they are under 10 that I just need prayers for peace.
I'd like to ask for prayers for Cayleigh:
Please pray that:
1. The doctors have divine wisdom and guidance in testing and treating Cayleigh to 'cure' her desats altogether
2. That Cayleigh immediately have a strong swallow, strong suck, strong cough
3. That she have fluid, easy, pain free movements in all extremeties
4. That she not only focus on, but respond and interact with me (us/others)
5. That Cayleigh have peace while her family isn't with her, that she not be scared or lonely (makes me tear up thinking about it) and have total comfort . That the Lord would sit by her bedside and talk to her and comfort her. I believe it
6. That she have a sound mound.
Pray for Nic:
1. That he be safe during his travelling on planes and in vehicles
2. That he be a light to shine for Jesus Christ amongst non-believers and that he can share his faith and what God has done in his life recently through Cayleigh Jean
3. That he be safe during working. along with his coworkers
4. That he have peace and comfort during his time away
Pray for the kids:
1. That they behave
2. That they have peace and comfort with all these changes going on
AMEN
Lexi's bow :)
Saturday, June 4, 2011
Hostile Momma
Saturday, June 4, 2011
Mommy, RN, PHD, WhateverIgottaBe
I got to the hosptial today at around 5:30 am, after dropping Nic off at the San Francisco airport. It was an early up (4 am) to say the least and we'd gone to bed around 11 after leaving the hospital late with the kiddos. When I got to the room a nurse was there taking her vitals. No fever. Last night she'd spiked a fever to 103 and then it went away after some Tylenol. She hadn't any desats last night the nurse told me. She also tells me that she had just changed Cayleighs diaper and that she'd just switched to Cayleighs 'new bag' of feed. She tells me that they will be taking another xra (the 3rd in her time there so far) to check her lungs again. They will also be by to take some blood to check her oxygen in her blood. Ok. I kiss Cayleigh, lay hands on her and pray and attempt to sit on the 'bed' thing and rest, but then remember that I have to give them my miolk. Of course, I'd forgotten to bring my stored milk with me to the hospital this morning which meant that I would have to go back later today- no better excuse for me than to 'have to' lol :)
So I sat down and then pops in the lady who is going to do the poking of my daughter. Our rules before 'letting' Cayleigh be hospitalized were that she was not to have any poking or prodding unless it was really necessary. First, I ask her who she is. She's got short, spiky black hair, too much eye makeup and looks young with bright blue scrubs. she tells me she is from Respratory - I ask her why she's got a needle to take my daughters blood then. She looks at me strange as if she'd seen a ghost. I tell her that I thought only a nurse or a phlebotomist (spelling? ugh) takes blood. She said that when 'doctors need the blood quickly they often times just send someone from their department' which screams to me code for "we're understaffed".
She puts a warmer on Cayleighs heel and tells me she has to wait for a nurse to open the drawer to get the needle. Ok, I say and I lay down. 5 minutes later she's back. I shoot up again and am at Cayleigh's side. She's asleep you know - I tell her. She says she's so cute and goes on about how precious she is, I tell her I know. (I'm sleep deprived and a little irritated - it mustve been the flourescent scrubs) She then seems nervous. I think I intimidated her. Well, she isn't a nurse and she should be doing oxygen related things - she wasn't an RN even. *sigh* case and point: She has a little box shaped poking thing that is simliar to what you'd use to prick your finger. She looks at it, rotates it and then finds where it is supposed to prick. So, she takes Cayleighs leg up in the air (and I put my hand on her hand, lower Cayleighs leg and gently remind her that my daughter 1. has contractures and I've noted it on the list of things about Cayleigh that my husband attached to her crib for me and 2. has dislocated hips so could she please not put her leg in the air like a gymnast - she isn't one...yet. :) So she then pokes her foot and Cayleigh had lots of blood flowing from that precious little heel. This woman then takes a tiny little sucker thing and for the life of her, bless her heart, can't seem to get the blood into the sucker thing. I must've looked at her and then her attempt and back at least fifteen times before I suggested she 'try again'. I suggest to her getting a bigger syringe. She tells me that's a good idea and within seconds she's back. She has another block poker thing and I'm not thrilled that my baby has to be poked twice because she's a dope. At any rate, she poked her heel again and again cannot manage to get the blood into the syringe. The problem is, she tells me, that there cannot be any air in the sample because it would give an innacurate idea of her blood oxygen level. well duh. So I proceed to grab the syringe out of her hand and tell her to hold the heel and apply pressure gently and steadily. she looked suprised for all of two seconds and then decided that was a good idea as I started collecting every drop of blood from her heel. Mind you - this woman spilled Cayleighs blood all over her bed linens and it was all over Cayleighs leg. *growl* I then turn the syringe upside down, flick it a few times and press the plunger upward, expelling the air, and the sample is perfect. She's super excited and tells me all about this little machine she has with her. She tells me its a mini lab and gives instant results. I stand by her and watch with her as she puts the sample in and we wait for the results. I watch and see a bunch of upward arrows and then 2 down. Down isn't good I tell myself. I look to see what the symbols next to the down are and see that one is for Potassium (thanks Professor Fig for teaching me the periodic table). The other one I dont know because it's a compound and I usually skipped first period. (lol) She tells me that Cayleighs oxygen level is really high. Then she leaves.
Ok..... so then the nurse comes in and tells me that they are going to be doing an xray soon. I tell her I want to talk to a doctor. She says ok. I lay down, ten minutes later the little irish doctor guy is there. He talks, alot (like me), and I half coherently understand him as I sway back and forth. I did catch him saying that they sent blood cultures off yesterday but those won't be back for up to a week, they also did another blood specimen (the poking lady) and that would be back today. I ask about the oxygen levels but he said he hadn't reviewed the results yet so they don't know anything. They really wanted to check her carbon dioxide levels in her blood. Often in preemies with chronic lung disease, their lungs dont get enough air and so the level of dioxide in their blood is elevated. He wants to see if that is the case with our sweet Cayleigh. He also says that if it is, she will likely be on a CPAP machine at home for nighttime. Ok I tell him, but it wont be. He confirms that yes, she must be swallowing since she doesn't have aspiration pneumonia. Tells me that the ENT wants to check her larynyx again (they'd done so at UCSF) this time to see if she had a cleft in it. He said that thought had come to him as a possible reason for the obstructive apnea. Interesting I tell him (but it wasn't). I tell him she also has a really high palette. He takes note. We'll be talking more later he says. Oh, and they are going to take a catheter to my daughter to get a urine sample so they can rule out any UTI or bladder infection because of that sudden onset of fever last night. I say ok, but its not going to stay there. He assures me that it wont. He goes on to say that while UCSF was ok with us taking Cayleigh home having a baseline (normal) of 5 or less desats during a day he wasn't comfortable with that. He tells me that he understands from the conversation he and I had on the phone last night that I didn't want her to be institutionalized but we'd have to find a happy medium. I then tell him that while I understand his concerns, they do nothing at the hospital above what we are equipped to do at home to suction her during desats and that I will be the one who decides when she is going to come home with me. I tell him that he should be aware that I will go AMA (against medical advise) should I feel that they are doing nothing for her because my daughter WONT be institutionalize. He says ok. I wasn't mean - but I certainly made my point.
So I layed down again, this time for a half hour. The nurse comes in and takes vitals, no fever. I tell her that I'd changed Cayleighs diaper after the lady stuck her foot twice because she'd pooped herself. She tells me "I would too". I laugh, so does she. My boobs tell me its time to pump so I stay up and the nurse says she'd be back in a half hour to take us to Xray because I'd mentioned to the dr that I expected to be there when the xray was done because my husband told me the first tech pulled my daughters arms up to her head and could've hurt her. That doesn't sit well with me. I also ask her for Ilex for Cayleigh's g-tube site because it was a little red on the left side again - and for mepliex to cover it. She says sure. She asks me if I have medical background and I tell her no, I'm just her mother.
I pump, then a LPN goes down with me to Xray as I hold Cayleigh and she pulls the portable oxygen. I like her, she's really nice and doesn't talk too much. Cayleigh and I sit quietly and wait for the tech to be ready. In the room I hear a tech talking to a little boys dad. Apparently he'd swallowed soemthing that was stuck in his intestines. They didn't know when it would come out or if it even could. Didn't know if it was obstructing but the kid hadn't pooped since Wednesday. That just goes to show you - if somebody offers you penny salad, don't eat it. (I really need to get some sleep)
We go in, I put on a full xray vest thing and then tell the tech I will move Cayleighs arms. We velcro her little arms and she looks at me and has tears in her eyes, and I momentarily break down and tear up a little bit - but then I wipe her tears and hold her hand and tell her its ok. I tell the tech that Cayleigh needed a cover for her lady parts. She obliges and covers her lady parts from the xray.
Seconds later, we're done. We all head upstairs and I change Cayleighs diapers again. This time the nurse comes over and asks the assistant if she can wait to change Cayleighs bedsheets until after the catheter. I was just opening my mouth when the assistant, not stopping for a second, says to the nurse that she can't have this baby sitting in sheets with blood and spille medicine on them. She tells her she will put down some absorbant pads and the nurse says ok. I like her.
The nurse asks if I am going to stay for the procedure. I look her right in the eyes and tell her if she can't handle it that I will, but that I need coffee. The LPN assistant girl says she will help. She understands that Cayleigh has the contractures and will be gentle with her pressure to move her into a frog position for the procedure. She'd watched me moving Cayleighs arms in the xray room and saw how slow to go. I say ok and then head down to get coffee. I got downstairs and that dang place was closed until 1130. So I got Wolfgang Puck coffee out of a machine (FABULOUS) and pretzels., oh and Peanut M&Ms....aaannnd a diet coke.
I walk upstairs and I hear them laughing. No sooner did she try to stick the cathter in than Cayleigh proceeded to poop all over their hands. :) The LPN was cleaing it up and they were going to start over. A bright spotlight warmed Cayleighs little lady parts and acted as a guide to help see her little who-ha area clearly. Just then a guy across from us who is Cambodian asks for someone to take his sons temp. He's been there before us and I guess he keeps spiking temps every 12 hours. The LPN goes to do it as I tell her that I am more than able to help. The little boys temp is 103. Poor guy. Meanwhile, the nurse proceeds to apply iodine to the little area to start her attempt again. She seems to fumble around trying to 'see' where her urethra is at. I have Cayleighs legs pulled apart an after 10 seconds of her looking around I went ahead and pulled apart her little area so the nurse could find it. Geesh... I felt like I was doing the work today. Somebody put me on payroll.
Anyhow, I left at 11:30 am to head home to get the kids, its 3:17 now and I got here around 1 (lots of rain) and of course 1 Diet coke, M&Ms and 2 coffee's later I couldn't sleep. So - we're on our way back up there to take Cayleighs milk! :)
That's all for now... I'll post again when I've rested and dont sound so hostile. lol
Mommy, RN, PHD, WhateverIgottaBe
I got to the hosptial today at around 5:30 am, after dropping Nic off at the San Francisco airport. It was an early up (4 am) to say the least and we'd gone to bed around 11 after leaving the hospital late with the kiddos. When I got to the room a nurse was there taking her vitals. No fever. Last night she'd spiked a fever to 103 and then it went away after some Tylenol. She hadn't any desats last night the nurse told me. She also tells me that she had just changed Cayleighs diaper and that she'd just switched to Cayleighs 'new bag' of feed. She tells me that they will be taking another xra (the 3rd in her time there so far) to check her lungs again. They will also be by to take some blood to check her oxygen in her blood. Ok. I kiss Cayleigh, lay hands on her and pray and attempt to sit on the 'bed' thing and rest, but then remember that I have to give them my miolk. Of course, I'd forgotten to bring my stored milk with me to the hospital this morning which meant that I would have to go back later today- no better excuse for me than to 'have to' lol :)
So I sat down and then pops in the lady who is going to do the poking of my daughter. Our rules before 'letting' Cayleigh be hospitalized were that she was not to have any poking or prodding unless it was really necessary. First, I ask her who she is. She's got short, spiky black hair, too much eye makeup and looks young with bright blue scrubs. she tells me she is from Respratory - I ask her why she's got a needle to take my daughters blood then. She looks at me strange as if she'd seen a ghost. I tell her that I thought only a nurse or a phlebotomist (spelling? ugh) takes blood. She said that when 'doctors need the blood quickly they often times just send someone from their department' which screams to me code for "we're understaffed".
She puts a warmer on Cayleighs heel and tells me she has to wait for a nurse to open the drawer to get the needle. Ok, I say and I lay down. 5 minutes later she's back. I shoot up again and am at Cayleigh's side. She's asleep you know - I tell her. She says she's so cute and goes on about how precious she is, I tell her I know. (I'm sleep deprived and a little irritated - it mustve been the flourescent scrubs) She then seems nervous. I think I intimidated her. Well, she isn't a nurse and she should be doing oxygen related things - she wasn't an RN even. *sigh* case and point: She has a little box shaped poking thing that is simliar to what you'd use to prick your finger. She looks at it, rotates it and then finds where it is supposed to prick. So, she takes Cayleighs leg up in the air (and I put my hand on her hand, lower Cayleighs leg and gently remind her that my daughter 1. has contractures and I've noted it on the list of things about Cayleigh that my husband attached to her crib for me and 2. has dislocated hips so could she please not put her leg in the air like a gymnast - she isn't one...yet. :) So she then pokes her foot and Cayleigh had lots of blood flowing from that precious little heel. This woman then takes a tiny little sucker thing and for the life of her, bless her heart, can't seem to get the blood into the sucker thing. I must've looked at her and then her attempt and back at least fifteen times before I suggested she 'try again'. I suggest to her getting a bigger syringe. She tells me that's a good idea and within seconds she's back. She has another block poker thing and I'm not thrilled that my baby has to be poked twice because she's a dope. At any rate, she poked her heel again and again cannot manage to get the blood into the syringe. The problem is, she tells me, that there cannot be any air in the sample because it would give an innacurate idea of her blood oxygen level. well duh. So I proceed to grab the syringe out of her hand and tell her to hold the heel and apply pressure gently and steadily. she looked suprised for all of two seconds and then decided that was a good idea as I started collecting every drop of blood from her heel. Mind you - this woman spilled Cayleighs blood all over her bed linens and it was all over Cayleighs leg. *growl* I then turn the syringe upside down, flick it a few times and press the plunger upward, expelling the air, and the sample is perfect. She's super excited and tells me all about this little machine she has with her. She tells me its a mini lab and gives instant results. I stand by her and watch with her as she puts the sample in and we wait for the results. I watch and see a bunch of upward arrows and then 2 down. Down isn't good I tell myself. I look to see what the symbols next to the down are and see that one is for Potassium (thanks Professor Fig for teaching me the periodic table). The other one I dont know because it's a compound and I usually skipped first period. (lol) She tells me that Cayleighs oxygen level is really high. Then she leaves.
Ok..... so then the nurse comes in and tells me that they are going to be doing an xray soon. I tell her I want to talk to a doctor. She says ok. I lay down, ten minutes later the little irish doctor guy is there. He talks, alot (like me), and I half coherently understand him as I sway back and forth. I did catch him saying that they sent blood cultures off yesterday but those won't be back for up to a week, they also did another blood specimen (the poking lady) and that would be back today. I ask about the oxygen levels but he said he hadn't reviewed the results yet so they don't know anything. They really wanted to check her carbon dioxide levels in her blood. Often in preemies with chronic lung disease, their lungs dont get enough air and so the level of dioxide in their blood is elevated. He wants to see if that is the case with our sweet Cayleigh. He also says that if it is, she will likely be on a CPAP machine at home for nighttime. Ok I tell him, but it wont be. He confirms that yes, she must be swallowing since she doesn't have aspiration pneumonia. Tells me that the ENT wants to check her larynyx again (they'd done so at UCSF) this time to see if she had a cleft in it. He said that thought had come to him as a possible reason for the obstructive apnea. Interesting I tell him (but it wasn't). I tell him she also has a really high palette. He takes note. We'll be talking more later he says. Oh, and they are going to take a catheter to my daughter to get a urine sample so they can rule out any UTI or bladder infection because of that sudden onset of fever last night. I say ok, but its not going to stay there. He assures me that it wont. He goes on to say that while UCSF was ok with us taking Cayleigh home having a baseline (normal) of 5 or less desats during a day he wasn't comfortable with that. He tells me that he understands from the conversation he and I had on the phone last night that I didn't want her to be institutionalized but we'd have to find a happy medium. I then tell him that while I understand his concerns, they do nothing at the hospital above what we are equipped to do at home to suction her during desats and that I will be the one who decides when she is going to come home with me. I tell him that he should be aware that I will go AMA (against medical advise) should I feel that they are doing nothing for her because my daughter WONT be institutionalize. He says ok. I wasn't mean - but I certainly made my point.
So I layed down again, this time for a half hour. The nurse comes in and takes vitals, no fever. I tell her that I'd changed Cayleighs diaper after the lady stuck her foot twice because she'd pooped herself. She tells me "I would too". I laugh, so does she. My boobs tell me its time to pump so I stay up and the nurse says she'd be back in a half hour to take us to Xray because I'd mentioned to the dr that I expected to be there when the xray was done because my husband told me the first tech pulled my daughters arms up to her head and could've hurt her. That doesn't sit well with me. I also ask her for Ilex for Cayleigh's g-tube site because it was a little red on the left side again - and for mepliex to cover it. She says sure. She asks me if I have medical background and I tell her no, I'm just her mother.
I pump, then a LPN goes down with me to Xray as I hold Cayleigh and she pulls the portable oxygen. I like her, she's really nice and doesn't talk too much. Cayleigh and I sit quietly and wait for the tech to be ready. In the room I hear a tech talking to a little boys dad. Apparently he'd swallowed soemthing that was stuck in his intestines. They didn't know when it would come out or if it even could. Didn't know if it was obstructing but the kid hadn't pooped since Wednesday. That just goes to show you - if somebody offers you penny salad, don't eat it. (I really need to get some sleep)
We go in, I put on a full xray vest thing and then tell the tech I will move Cayleighs arms. We velcro her little arms and she looks at me and has tears in her eyes, and I momentarily break down and tear up a little bit - but then I wipe her tears and hold her hand and tell her its ok. I tell the tech that Cayleigh needed a cover for her lady parts. She obliges and covers her lady parts from the xray.
Seconds later, we're done. We all head upstairs and I change Cayleighs diapers again. This time the nurse comes over and asks the assistant if she can wait to change Cayleighs bedsheets until after the catheter. I was just opening my mouth when the assistant, not stopping for a second, says to the nurse that she can't have this baby sitting in sheets with blood and spille medicine on them. She tells her she will put down some absorbant pads and the nurse says ok. I like her.
The nurse asks if I am going to stay for the procedure. I look her right in the eyes and tell her if she can't handle it that I will, but that I need coffee. The LPN assistant girl says she will help. She understands that Cayleigh has the contractures and will be gentle with her pressure to move her into a frog position for the procedure. She'd watched me moving Cayleighs arms in the xray room and saw how slow to go. I say ok and then head down to get coffee. I got downstairs and that dang place was closed until 1130. So I got Wolfgang Puck coffee out of a machine (FABULOUS) and pretzels., oh and Peanut M&Ms....aaannnd a diet coke.
I walk upstairs and I hear them laughing. No sooner did she try to stick the cathter in than Cayleigh proceeded to poop all over their hands. :) The LPN was cleaing it up and they were going to start over. A bright spotlight warmed Cayleighs little lady parts and acted as a guide to help see her little who-ha area clearly. Just then a guy across from us who is Cambodian asks for someone to take his sons temp. He's been there before us and I guess he keeps spiking temps every 12 hours. The LPN goes to do it as I tell her that I am more than able to help. The little boys temp is 103. Poor guy. Meanwhile, the nurse proceeds to apply iodine to the little area to start her attempt again. She seems to fumble around trying to 'see' where her urethra is at. I have Cayleighs legs pulled apart an after 10 seconds of her looking around I went ahead and pulled apart her little area so the nurse could find it. Geesh... I felt like I was doing the work today. Somebody put me on payroll.
Anyhow, I left at 11:30 am to head home to get the kids, its 3:17 now and I got here around 1 (lots of rain) and of course 1 Diet coke, M&Ms and 2 coffee's later I couldn't sleep. So - we're on our way back up there to take Cayleighs milk! :)
That's all for now... I'll post again when I've rested and dont sound so hostile. lol
Wednesday, June 1, 2011
Back to the Hospital
Nic is on his way to Oakland Children's Hospital with Cayleigh to see if, perhaps, her increased desats are due to obstrutive apnea. What's obstructive apnea? Well, its basically when something is blocking her airway. Previously, 'they'd' said that she had brain damage that caused this apnea/desat. Her Pediatrician, Dr Weger (who is amaing),mentioned at our last appt that she clearly saw Cayleigh's chest wall rising during her desat which means this isn't a BRAIN problem, it's an OBSTRUCTIVE problem.
This brings me back to when I had Cayleigh and was sitting on the toilet at St Josephs, heavily medicated, and was looking on the computer to try to find out something -anything. I purposely never looked up the "Trisomy 18" that they'd misdiagnosed her with. Instead, that night I came across a blog post that came from a woman who's child had no gag/suck/swallow/cry. Ended up that she had a floppy airway. It mentioned a swallow study to see if this was the case. When I brought that up to the medical team there I was brushed under the carpet. What's peculiar, however, is that when I looked through my computer history to try and find that blog again to show Nic - I wasn't able to find it. Like...it wasn't ever even there.
So, now it's coming full circle. For those of you who know me, I've never been the best person - I've had my share of valleys and mountains... but since Cayleigh's birth I've drawn very near to God. If nothing else - I can above all things, and without a doubt, say that God works in mysterious ways. That His timing is not our timing, His ways are not our own. But you know what? He Delivers! (Literally) - I don't care who you are .... you CAN'T sweep God under the rug.
I woke up this morning with a bit of a stomach twist, a high fever (almost 102) and a headache. I stayed up for as long as I could and took care of making calls that needed to be taken care of. One of those calls was to Dr Weger - in which I spoke candidly about how I don't think Cayleigh has a secretion problem ---- but if there is anything causing the gagging it's because this RObinul medicine has caused her secretions to be too thick & I told her that I whole heartedly believe this is something different causing these problems. Cayleigh DOES make noise. A pulmonary doctor we saw once said that her tongue blocked her airway causing a noise called Stryders. It's a high pitched little squeak. Well, I had my finger in her mouth, and she was sucking on it, her tongue was down - and she made that very same noise.
I'm not saying that doctors don't give their very best opinion. What I am saying is that Cayleighs doctor - the Great Physician - has this handled.
As much as I want to be there, I can't because that would be selfish of me & ultimately nothing would be gained. So I sit here, blog to you all and try to keep composure. May God's good and perfect will be done.
From what we know: They'll do a sleep study, laryngoscopy and hopefully we'll figure out the REAL reason she desats. My being sick comes at a most inopprotune time but thankfully I have my rock, My husband, to see things through. It's sad that Nic's leaving here in two days for a 3 week job, but it's also a good thing because we'll be moving into our new house when he gets back. As far as Cayleigh is concerned - they've promised us that they won't poke & prod Cayleigh. We're big on her NOT getting IV after IV. I wish I were with them.. *sigh* Please keep her in your prayers and thoughts. Thanks for listening
This brings me back to when I had Cayleigh and was sitting on the toilet at St Josephs, heavily medicated, and was looking on the computer to try to find out something -anything. I purposely never looked up the "Trisomy 18" that they'd misdiagnosed her with. Instead, that night I came across a blog post that came from a woman who's child had no gag/suck/swallow/cry. Ended up that she had a floppy airway. It mentioned a swallow study to see if this was the case. When I brought that up to the medical team there I was brushed under the carpet. What's peculiar, however, is that when I looked through my computer history to try and find that blog again to show Nic - I wasn't able to find it. Like...it wasn't ever even there.
So, now it's coming full circle. For those of you who know me, I've never been the best person - I've had my share of valleys and mountains... but since Cayleigh's birth I've drawn very near to God. If nothing else - I can above all things, and without a doubt, say that God works in mysterious ways. That His timing is not our timing, His ways are not our own. But you know what? He Delivers! (Literally) - I don't care who you are .... you CAN'T sweep God under the rug.
I woke up this morning with a bit of a stomach twist, a high fever (almost 102) and a headache. I stayed up for as long as I could and took care of making calls that needed to be taken care of. One of those calls was to Dr Weger - in which I spoke candidly about how I don't think Cayleigh has a secretion problem ---- but if there is anything causing the gagging it's because this RObinul medicine has caused her secretions to be too thick & I told her that I whole heartedly believe this is something different causing these problems. Cayleigh DOES make noise. A pulmonary doctor we saw once said that her tongue blocked her airway causing a noise called Stryders. It's a high pitched little squeak. Well, I had my finger in her mouth, and she was sucking on it, her tongue was down - and she made that very same noise.
I'm not saying that doctors don't give their very best opinion. What I am saying is that Cayleighs doctor - the Great Physician - has this handled.
As much as I want to be there, I can't because that would be selfish of me & ultimately nothing would be gained. So I sit here, blog to you all and try to keep composure. May God's good and perfect will be done.
From what we know: They'll do a sleep study, laryngoscopy and hopefully we'll figure out the REAL reason she desats. My being sick comes at a most inopprotune time but thankfully I have my rock, My husband, to see things through. It's sad that Nic's leaving here in two days for a 3 week job, but it's also a good thing because we'll be moving into our new house when he gets back. As far as Cayleigh is concerned - they've promised us that they won't poke & prod Cayleigh. We're big on her NOT getting IV after IV. I wish I were with them.. *sigh* Please keep her in your prayers and thoughts. Thanks for listening
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