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.
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