There is clean lanudry piled everywhere. The kitchen is a fright. The medical supplies are in various bags and boxes all over the place. And I don't care.
We are home.
Maggie will need a couple of weeks to get back into fighting shape, which means she will miss her last week of school. This virus is contagious so she can't go.It should run its course by the end of the week - or at least not be contagious any more. Perhaps we can sneak in then and say farewell.
In the meantime, we have so much medicine to deliver that there won't be time for much else. The docs say that she should improve dramaticallly every day, and we may be able to taper back some of the breathing treatments by the end of the week.Then it will be a matter of regaining strength and vigor - for both of us.
Thanks for all the good wishes. We will return to our regularly scheduled programming soon. I just have a few things to put away first..
Sunday, May 30, 2010
Saturday, May 29, 2010
One More day
It's late Saturday night and I am at home. Maggie is still in the hospital, but she has her own nurse there so I can grab som sleep.I need to be back by 6AM.
In all liklihood she will come home tomorrow. We were close to coming home today until the doctor and I both realized at the same moment how high Maggie's oxygen requirement was. It is delivered differently in the hospital than we do it at home and I didn't realize the calculations would figure so high.I would have had to keep her at 10litres which would drain my tank every day. The doctor thought it was "premature" to release her and I had to agree. When I hesitate, there is no way anyone else will agree, I'm always the one insisting we can handle things at home.
There will be a ton for us to do when she gets home. She will now have six additional aerosol treatments every day. She already gets four, and they take 15-30 minutes each. That nebulizer will be going non stop. There are new drugs too, but we will switch those out for a couple we are dropping off.
We never left the ICU. She will be discharged from there, which is great. I really wish there was a place for her. She really is too complicated for the floor and (happily) not sick enough to need the ICU, but they have to err on the side of safety. Still, I hear rumblings that she shouldn't be here, etc. That's only the odd person - 98% are very gracious and professional. But it's always the grumblings that stay with you.
I'm off to hit the pillow for about four solid hours. Have to be up at five(ish) and out the door at 5:45.
In all liklihood she will come home tomorrow. We were close to coming home today until the doctor and I both realized at the same moment how high Maggie's oxygen requirement was. It is delivered differently in the hospital than we do it at home and I didn't realize the calculations would figure so high.I would have had to keep her at 10litres which would drain my tank every day. The doctor thought it was "premature" to release her and I had to agree. When I hesitate, there is no way anyone else will agree, I'm always the one insisting we can handle things at home.
There will be a ton for us to do when she gets home. She will now have six additional aerosol treatments every day. She already gets four, and they take 15-30 minutes each. That nebulizer will be going non stop. There are new drugs too, but we will switch those out for a couple we are dropping off.
We never left the ICU. She will be discharged from there, which is great. I really wish there was a place for her. She really is too complicated for the floor and (happily) not sick enough to need the ICU, but they have to err on the side of safety. Still, I hear rumblings that she shouldn't be here, etc. That's only the odd person - 98% are very gracious and professional. But it's always the grumblings that stay with you.
I'm off to hit the pillow for about four solid hours. Have to be up at five(ish) and out the door at 5:45.
Hosp updates
I'll put these in in the order I wrote them. (couldn't always get online) By the time you get to the bottom you will see she is doing well.
Friday Morning. Moved to the ICU at 1:00AM. Now it's 7:28AM and they may move her back. Maggie falls right between acute care and intensive care on her best day. Shes medically stable - sick, but stable - but she needs more nursing care than they can provide with the patient load on the floor. I do a lot of the care myself, but I've told them they cannot rely on me 24/7. I have to sleep a little bit and I got about 4 hours last night. Not good sleep because it is constant beeps and blips all night. Bwetween the IV, the monitors and the feeding pump something was beeping all night. The monitor is measuring about five different things at once and has five different alarms depending on what needs attention. I was having dreams about being at a train station.
In addition to the pneumonia, Maggie has the "paraflu"virus. It's not influenza but a different virus. She is really struggling to breathe and the oxygen is up full blast. If the virus has crested, she will start getting better. If not and she gets worse, they may have to put her on a ventilator to help her breathe. Only time will tell that.
When we got to the ICU they gave her some Ativan which knocked her out. She hadn't slept in two days and that was a big help. They were unwilling to do that on the floor becasue they couln't monitor her close enough for an adverse reaction. Here in the ICU they are right aat her door all the time. THe sleep helped. She may be a little better this morning, but that might be wishful thinking.
Onward.
Friday PM Maggie is droopy but improving - I think. ( I hope.) Don't let the tubes freak you out. The big one is just humidified oxygen going directly into her trach and the other is her IV and Sat monitor. It's not as bad as it looks.
She thought moving the bed was a riot. of course instead of laughin her head of she smiled wanly, but same difference.
Saturday AM. I slept for six hours!! I went home and crashed and returned about 6:30AM. Maggie had her own nurse last night so it was easily done. I feel like a new woman.
Maggie has definitely taken a positive turn. She looks much better this morning, she's laughing and carrying on. She still needs a huge amount of oxygen, but we are getting to the point that we could do this at home. She is still in ICU - but does not need to be medically. Her care level keeps her here - but I'm sure they cannot justify this much longer.
They decided her right lung was collapsed. From the look of her today, it has likely popped open again. Today's chest xray will tell that story.
I'm going to ask the doctor to discharge us from here and skip the floor completely. Not sure she will do that. We've done it before, but that was generally following a surgery, not a sickness. It's a little different.
Friday Morning. Moved to the ICU at 1:00AM. Now it's 7:28AM and they may move her back. Maggie falls right between acute care and intensive care on her best day. Shes medically stable - sick, but stable - but she needs more nursing care than they can provide with the patient load on the floor. I do a lot of the care myself, but I've told them they cannot rely on me 24/7. I have to sleep a little bit and I got about 4 hours last night. Not good sleep because it is constant beeps and blips all night. Bwetween the IV, the monitors and the feeding pump something was beeping all night. The monitor is measuring about five different things at once and has five different alarms depending on what needs attention. I was having dreams about being at a train station.
In addition to the pneumonia, Maggie has the "paraflu"virus. It's not influenza but a different virus. She is really struggling to breathe and the oxygen is up full blast. If the virus has crested, she will start getting better. If not and she gets worse, they may have to put her on a ventilator to help her breathe. Only time will tell that.
When we got to the ICU they gave her some Ativan which knocked her out. She hadn't slept in two days and that was a big help. They were unwilling to do that on the floor becasue they couln't monitor her close enough for an adverse reaction. Here in the ICU they are right aat her door all the time. THe sleep helped. She may be a little better this morning, but that might be wishful thinking.
Onward.
Friday PM Maggie is droopy but improving - I think. ( I hope.) Don't let the tubes freak you out. The big one is just humidified oxygen going directly into her trach and the other is her IV and Sat monitor. It's not as bad as it looks.
She laid in the bed and played with the controls pushing the head and feet up and down
She thought moving the bed was a riot. of course instead of laughin her head of she smiled wanly, but same difference.
Maggie has definitely taken a positive turn. She looks much better this morning, she's laughing and carrying on. She still needs a huge amount of oxygen, but we are getting to the point that we could do this at home. She is still in ICU - but does not need to be medically. Her care level keeps her here - but I'm sure they cannot justify this much longer.
They decided her right lung was collapsed. From the look of her today, it has likely popped open again. Today's chest xray will tell that story.
I'm going to ask the doctor to discharge us from here and skip the floor completely. Not sure she will do that. We've done it before, but that was generally following a surgery, not a sickness. It's a little different.
Friday, May 28, 2010
Hospital Post 1
Report as an inpatient.Maggie came into the hospital yesterday morning about 21 hours ago.
Lots of stupidity at admission. Somehow signals were crossed and we were sitting in the ER just waiting. I wondereed why we came through the ER at all. After an hour we came up the the 6th floor. Once up here we were settling in and talking to the docs etc. Then the two young residents came to tell me that there was an error and Maggie was supposed to be evaluated in the ER to see if she needed to be on the regular floor or in the ICU. They told me I had to take Maggie BACK downstairs.
I just looked at them, paused and said Uhhhh....noooo. we are NOT doing that.
They lamented hospital procedure and I said, let's use common sense. You are doctors and there is a possibility that this child is too sick to be on this unit and may need intensive care. Your solution for that is not to evaluate her, but to further delay an evaluation by sending us off this floor to wait for an elevator to send me down to OTHER doctors. That is non-sensical. If the hospital screwed up, the hospital can fix it, the patient wil not fix it for you.
They just looked at each other, panicked. They knew I was right, but they are very small cogs in a very big wheel. They said we don't have the authority to override this, Ok, I said, but you do have the authority to advocate for your patient.
They came to us - surprise surprise
She was moved to the ICU at 1:00AM. Now it's 7:28AM and they may move her back. Maggie falls right between acute care and intensive care on her best day. Shes medically stable - sick, but stable - but she needs more nursing care than they can provide with the patient load on the floor. I do a lot of the care myself, but I've told them they cannot rely on me 24/7. I have to sleep a little bit and I got about 4 hours last night. Not good sleep because it is constant beeps and blips all night. Bwetween the IV, the monitors and the feeding pump something was beeping all night. The monitor is measuring about five different things at once and has five different alarms depending on what needs attention. I was having dreams about being at a train station.
In addition to the pneumonia, Maggie has the "paraflu"virus. It's not influenza but a different virus. She is really struggling to breathe and the oxygen is up full blast. If the virus has crested, she will start getting better. If not and she gets worse, they may have to put her on a ventilator to help her breathe. Only time will tell that.
When we got to the ICU they gave her some Ativan which knocked her out. She hadn't slept in two days and that was a big help. They were unwilling to do that on the floor becasue they couln't monitor her close enough for an adverse reaction. Here in the ICU they are right aat her door all the time. THe sleep helped. She may be a little better this morning, but that might be wishful thinking.
Onward.
Lots of stupidity at admission. Somehow signals were crossed and we were sitting in the ER just waiting. I wondereed why we came through the ER at all. After an hour we came up the the 6th floor. Once up here we were settling in and talking to the docs etc. Then the two young residents came to tell me that there was an error and Maggie was supposed to be evaluated in the ER to see if she needed to be on the regular floor or in the ICU. They told me I had to take Maggie BACK downstairs.
I just looked at them, paused and said Uhhhh....noooo. we are NOT doing that.
They lamented hospital procedure and I said, let's use common sense. You are doctors and there is a possibility that this child is too sick to be on this unit and may need intensive care. Your solution for that is not to evaluate her, but to further delay an evaluation by sending us off this floor to wait for an elevator to send me down to OTHER doctors. That is non-sensical. If the hospital screwed up, the hospital can fix it, the patient wil not fix it for you.
They just looked at each other, panicked. They knew I was right, but they are very small cogs in a very big wheel. They said we don't have the authority to override this, Ok, I said, but you do have the authority to advocate for your patient.
They came to us - surprise surprise
She was moved to the ICU at 1:00AM. Now it's 7:28AM and they may move her back. Maggie falls right between acute care and intensive care on her best day. Shes medically stable - sick, but stable - but she needs more nursing care than they can provide with the patient load on the floor. I do a lot of the care myself, but I've told them they cannot rely on me 24/7. I have to sleep a little bit and I got about 4 hours last night. Not good sleep because it is constant beeps and blips all night. Bwetween the IV, the monitors and the feeding pump something was beeping all night. The monitor is measuring about five different things at once and has five different alarms depending on what needs attention. I was having dreams about being at a train station.
In addition to the pneumonia, Maggie has the "paraflu"virus. It's not influenza but a different virus. She is really struggling to breathe and the oxygen is up full blast. If the virus has crested, she will start getting better. If not and she gets worse, they may have to put her on a ventilator to help her breathe. Only time will tell that.
When we got to the ICU they gave her some Ativan which knocked her out. She hadn't slept in two days and that was a big help. They were unwilling to do that on the floor becasue they couln't monitor her close enough for an adverse reaction. Here in the ICU they are right aat her door all the time. THe sleep helped. She may be a little better this morning, but that might be wishful thinking.
Onward.
Wednesday, May 26, 2010
Tuesday, May 25, 2010
Prom Report
Maggie had a BLAST at her prom. I was a doubting Thomas throughout the process. I thought the crowd would scare her, I though the music would scare her, I thought she would be too tired on a Friday night, I thought she would last about 30 minutes tops. If Maggie had the motor skills, she would roll her eyes at me. I was wrong wrong wrong.
But let’s start at the beginning. You will recall the vote on the appropriate wrap for the prom. Maggie kept changing her own vote but we ultimately opted for the blue sweater. The overwhelming majority, including me, voted for the white. However, I noticed that everyone who works with kids, and all the kids themselves, voted for the blue one. In addition, those within San Francisco voted for the blue 10-1. San Francisco voting results never correlates with state or national votes, so this is nothing new, but I have to listen to our peeps. She looked fabulous.
Maggie got all dressed and ready at home. It was the first time she ever wore stockings (other than tights) and she could not stop rubbing her legs and laughing. We arrived at the prom about 45 minutes after it started (you do not want to be the first one there.) All but one of her friends had already arrived. In a very sad twist, Maggie’s girlfriend Cui Peng did not get to come because the van pickup never arrived. Cui sat there dressed up for two hours and the van never came. I offered to send my husband over to get her in the van, but by that time, her mother was understandably angry and had given up. That was a dark cloud in an otherwise bright evening.
Maggie really the dancing and the music and her beau Juan was very attentive. They even had a formal picture taken together. (I have not seen that yet.) Juan was decked out in his suit and, as handsome as he was, he was in competition with Tyre in his suit and hat and with Robert in his Cape and Italian Flag bow tie.
But let’s start at the beginning. You will recall the vote on the appropriate wrap for the prom. Maggie kept changing her own vote but we ultimately opted for the blue sweater. The overwhelming majority, including me, voted for the white. However, I noticed that everyone who works with kids, and all the kids themselves, voted for the blue one. In addition, those within San Francisco voted for the blue 10-1. San Francisco voting results never correlates with state or national votes, so this is nothing new, but I have to listen to our peeps. She looked fabulous.
Prom day started in the classroom after lunch when they had a “beauty day.” Maggie and her only female classmate, Cui Peng, were pampered. They had their nails done and hair adorned. Cui Peng also got dressed up at school and was all ready to go.
Maggie got all dressed and ready at home. It was the first time she ever wore stockings (other than tights) and she could not stop rubbing her legs and laughing. We arrived at the prom about 45 minutes after it started (you do not want to be the first one there.) All but one of her friends had already arrived. In a very sad twist, Maggie’s girlfriend Cui Peng did not get to come because the van pickup never arrived. Cui sat there dressed up for two hours and the van never came. I offered to send my husband over to get her in the van, but by that time, her mother was understandably angry and had given up. That was a dark cloud in an otherwise bright evening.Maggie danced the night away and smiled and laughed all night long.
The rest of the students were also resplendent. A few went a little different. I had to grab a picture of this guy who dressed as either a marching bandleader or a 1940’s theatre usher. (He was very proud of his outfit and gladly posed for the picture) Some of the young women were so beautifully dressed it astounded me. Others, however, would not have passed muster at the Catholic school my boys attended. At my sons' school, the kids could not go to the prom unless the parents attended a meeting to learn the rules of the prom and, specifically, what was and was NOT acceptable attire. I promise you some of these outfits would have made the Christian Brothers blush. YOWSA! I had to cover my eyes.
The kids were having fun, I didn't see anything that suggested any alcohol use or any trouble of any kind. If there was any, it was not evident and did not diminish the evening in any way shape or form. The teachers and administrators were present but seemed to be having fun, not patrolling.
The best part of the rest of the attendees, however, was the lack of response to the wheelchairs or the special ed kids dancing and having fun. They special ed kids were not “tolerated”, ridiculed, or coddled. They were ignored because they were just part of the backdrop. They are nothing special. That is appropriate teenage behavior, but in this case, it is awesome because it shows how accepting the kids are to the differences.
Maggie stayed at the prom for 2.5 hours. Rather than the anticipated fear, the noise and revelry seemed to give her energy. She laughed her head off and completely enjoyed herself. We left after 10Pm and she was completely spent. It took her all weekend to recover, which is exactly what a good prom should do.
Steve and I are still recovering. If you want to feel old, I suggest you spend a few hours at a high school prom.
The music is nothing I remotely regonzized - except for one of Maggie's favorites, "Imma B." (Steve is still astounded he didn't hear "Freebird"all night.) The dancing is enough to make you blush. Despite the change in styles of music and dance, the kis are all dressed up and grinning ear to ear. that part is timeless.
Friday, May 21, 2010
Prom Day!
Prom day has arrived! I will post pictures of the queen when she is ready to go.
Today at school they are having a beauty day. Maggie is getting her hair and nails done. She chose the sparkly turquoise nail polish and the feathered head band.
Her escorts will be me and dad. her brothers cannot get here on a Friday night anywhere cose to the time required. Two nephews were offered by thier respective mothers, but Maggie needs someone who knows how to suction and read her cues. Believe me, Maggie is just fine with all of it.
Excitement is in the air!
Today at school they are having a beauty day. Maggie is getting her hair and nails done. She chose the sparkly turquoise nail polish and the feathered head band.
Her escorts will be me and dad. her brothers cannot get here on a Friday night anywhere cose to the time required. Two nephews were offered by thier respective mothers, but Maggie needs someone who knows how to suction and read her cues. Believe me, Maggie is just fine with all of it.
Excitement is in the air!
Wednesday, May 19, 2010
Interactive Post
Ok folks, I need your help. Maggie's prom is Friday night.
First of all, here is the dress itself with the peace sign scarf
The dress is set but we need assistance with the "wrap." She needs some sort of sweater or jacket because it will be cold. I have two choices to show you and ask for your input.
We can go with the same color short sleeve sweater. It matches and may fit a bit better, but it's casual
The other is a more formal white sweater shown below with close up detail.
Downside, it may be a little big for Maggie.
Comment to vote, or send me an email. We have to know by Friday morning. Maggie is depending on you.
Note:I generally don't accept anonymous comments, but I will today. Of course I reserve the right to veto any inappropriate comments. By the way, if you are considering leaving inappropriate comments, get some help.
Tuesday, May 18, 2010
Sleepus Interruptus
I heard the nurse calling me but it took me a few minutes to realize it was real and not part of my dream. I hopped out of bed and headed for the stairs. After a couple of steps, I turned around to pick up my glasses. At that point, I was not sure what the problem was, but whatever it was, I was going to have to be able to see. Trying to focus my eyes at 4AM is difficult, especially considering I cannot see much without glasses even when wide awake.
Happily, when I arrived at her bed, Maggie was not in any distress. The nurse was standing at her side when it broke and kept it in place until I came down. We have an emergency kit and making the change is quick. I was back in bed in 15 minutes, but never really went back to sleep. Even though I knew Maggie was fine, it is difficult to settle back down once the adrenaline is pumping, and being roused out of a dead sleep to deal with a broken trach definitely gets the adrenaline pumping.
I just stayed in bed watching the clock and thinking about all the balls we have in the air. Some are just the everyday worries but others are more significant. For example, there is still no word on when they will do Maggie’s surgery. I talked to two of the three specialists involved and have an appointment with the surgeon next Wednesday. Originally I was worried that Maggie would miss her prom, but the prom is on Friday so that, obviously, is not an issue. Given the lack of urgency from the specialists, I am now going to push to wait another couple of weeks until school is out. Many kids yearn for summer vacation, but that is not a great time for Maggie. She LOVES going to school; it is really her entire social life. There is one week between the end of the academic school year and the beginning of summer school. Maggie will likely be out of commission more than one week, but it might as well encompass that week off.
The alarm rang at 6:30 and I got up and started the wild routine to get Maggie onto the bus. Since she left I have been "vegging out" in the front room. I am tired and worn out, but not sleepy, probably because of the three strong cups of coffee. But that will wear off so it is time for me to hop into the shower and carpe diem.
I have to hurry so I can still get in that nap this afternoon.
Monday, May 17, 2010
Sepcial Olympics report and pitures
Special Olympics was the greatest! All the kids have such a great time and everyone works very hard to insure that.It is a very impressive effort by alot of people. cge It's like old home week. Maggie gets to see friends who have gone to other schools, old teachers, classroom aides and nurses too.
Here are a few pictures and I will post video at some future point,but for right now you can see all the still pictures at Maggie's photo share site http://sfmaggiespecialolympics.shutterfly.com/
Maggie only competed in one event - a wheelchair race/dash with folks pushing. She was lucky enough to draw a school mate who's on the track team and won her event! I don't even know his name, but he impressed me by introducing himself to Maggie and telling her he intended to make sure she won. I loved that!
Here are a few pictures and I will post video at some future point,but for right now you can see all the still pictures at Maggie's photo share site http://sfmaggiespecialolympics.shutterfly.com/
Maggie only competed in one event - a wheelchair race/dash with folks pushing. She was lucky enough to draw a school mate who's on the track team and won her event! I don't even know his name, but he impressed me by introducing himself to Maggie and telling her he intended to make sure she won. I loved that!
I will say Maggie was very well pleased with herself and she was very happy that my mother "Grandma Carmel" showed up to cheer her on. I had her teacher snap a quick shot of the three of us.
Maggie also got to see Teacher Joe from last year. He delighted her by saying "Having fun is ok, but WINNING is what's important" (Of course they've been hearing the opposite for weeks.) I thought she was going to blow a gasket when he said that!
Here's Maggie basking in her victory and eating lunch at the same time. 
Check out the rest of the photos at http://sfmaggiespecialolympics.shutterfly.com/
Thursday, May 13, 2010
Special Olympics on Friday!!!
If any of you are around Kezar Stadium in San Francisco, tomorrow is Special Olympics!! Come on out and cheer maggie and her teammates onto victory.
I made tie-dye shirts for about 20 Mission folks yesterday. We should be easy to spot. I don't have a shirt, but you can find me by my tie-dyed hands
I will post Special Olympic photos tomorrow. Maggie is in the wheelchair race and some sort of tossing event. She is tentatively set for the power chair race too, but that depends on whether or not the power chair can fit on the bus. There are practical considerations at play always.
Wednesday, May 12, 2010
Fancy New Digs
I had an unusual opportunity last night. The members of the Family Advisory Council for UCSF Children’s Hospital were asked to give additional feedback on the planned design of the new Children’s Hospital, which is ALMOST under construction in Mission Bay. We were invited to tour the "mock up" of several types of hospital rooms that will be in the new hospital when it is completed in three or four years. The rooms were fantastic!
Right now UCSF Children’s Hospital is within the larger UCSF Medical Center. Once this new building is finished, it will be a free standing children’s hospital with state of the art facilities to match the state of the art care. The amount of detail in planning and designing these spaces is mind-boggling. Every color choice and material has to be considered as do all the lighting, wall and window coverings and floors. (Speaking of floors, it is funny to see linoleum making a comeback. The choice for the flooring looked very contemporary and right out of 1942 at the same time. Everything comes back into vogue, I guess.)
Members of the council did have some valid suggestions but they were on minor details. Floors squeaked, get the emergency box out of the reach of children, lose this sleep chair, keep that one, etc. I took it upon myself to try out the parents recliners, sleep chairs or sleep spaces in every room. It’s a tough job, but someone has to do it. This one was not the winner.
A couple of us with kids in wheelchairs noted access issues for the showers. They are open without steps, but one has to be able to stand to use them. The architects/designers proudly said every shower would have a bench. We pointed out that many disabled kids cannot sit up and even those who are without disabilities but recovering from orthopedic surgeries etc will need a shower chair or something supportive in order to use the showers. There is also a question of where all the equipment will go for many of the kids. Even with those issues, however, the enormous improvement over the current hospital is noteworthy. Mostly we ooh’ed and ahh’d at the fantastic new spaces.
When this hospital is complete, pediatric patients will have their own room and a big bathroom to go with it. The interactive area will be a TV, computer, mp3 and any other state of the art electronics – most of which we probably don’t even know about yet. The planned ICU rooms are about twice the current size and have everything you can imagine. Even the wee babies in the NICU will have their own spaces (for the most part) which is a lot calmer than the “bays” they have now with several babies in them. These will be more family friendly so parents can visit and even room in without feeling like they are in the way of the medical team.
The most impressive of all, though is the labor and delivery rooms. They are huge! Octomom could deliver her babies in here with plenty of room to spare. These rooms get the most visitors and are designed to impress – and they hit the mark.
Maggie will be out of pediatrics before completion of this project. However, I know the next generation of parents will have the best possible facilities available for their sick children which is great and I can personally attest to the comfort of the sleep chairs - or at least some of them..
Right now UCSF Children’s Hospital is within the larger UCSF Medical Center. Once this new building is finished, it will be a free standing children’s hospital with state of the art facilities to match the state of the art care. The amount of detail in planning and designing these spaces is mind-boggling. Every color choice and material has to be considered as do all the lighting, wall and window coverings and floors. (Speaking of floors, it is funny to see linoleum making a comeback. The choice for the flooring looked very contemporary and right out of 1942 at the same time. Everything comes back into vogue, I guess.)
Members of the council did have some valid suggestions but they were on minor details. Floors squeaked, get the emergency box out of the reach of children, lose this sleep chair, keep that one, etc. I took it upon myself to try out the parents recliners, sleep chairs or sleep spaces in every room. It’s a tough job, but someone has to do it. This one was not the winner.
A couple of us with kids in wheelchairs noted access issues for the showers. They are open without steps, but one has to be able to stand to use them. The architects/designers proudly said every shower would have a bench. We pointed out that many disabled kids cannot sit up and even those who are without disabilities but recovering from orthopedic surgeries etc will need a shower chair or something supportive in order to use the showers. There is also a question of where all the equipment will go for many of the kids. Even with those issues, however, the enormous improvement over the current hospital is noteworthy. Mostly we ooh’ed and ahh’d at the fantastic new spaces.
When this hospital is complete, pediatric patients will have their own room and a big bathroom to go with it. The interactive area will be a TV, computer, mp3 and any other state of the art electronics – most of which we probably don’t even know about yet. The planned ICU rooms are about twice the current size and have everything you can imagine. Even the wee babies in the NICU will have their own spaces (for the most part) which is a lot calmer than the “bays” they have now with several babies in them. These will be more family friendly so parents can visit and even room in without feeling like they are in the way of the medical team.
The most impressive of all, though is the labor and delivery rooms. They are huge! Octomom could deliver her babies in here with plenty of room to spare. These rooms get the most visitors and are designed to impress – and they hit the mark.
Maggie will be out of pediatrics before completion of this project. However, I know the next generation of parents will have the best possible facilities available for their sick children which is great and I can personally attest to the comfort of the sleep chairs - or at least some of them..
Monday, May 10, 2010
Cinco de Madre
Happy day after Mother's Day. I hope all the mothers out there were treated like queens. We had a "Cinco de Madre" party here. My mom and two sisters and their families came over along with my father in law and a nephew from the other side Rather than the usual family fare, I had a taco/tostada bar for Mothers Day lunch. It was fun. Five of my nephews were here (ages 15-23) and they consumed vast amounts of food. Maggie enjoyed all the company.
The boys watched the Giants game while they ate and when that game was over switched to the Oakland A's game. All of us are Giants fans and tolerate but don't really follow the A's. The only exception to this is my nephew Jack, who is 15. He has always been an A's fan and proudly stands out among all the cousins
My favorite image of yesterday had nothing to do with my mother or with being a mother. Rather it is an image of Jack and came at the end of the A's game. The A's pitcher, Dallas Braden, had a perfect game going. By the end of the game all of us were in the room watching to see if he could pull it off. There weren't enough seats for everyone and several of us were standing. Jack had the leather recliner, the best seat in the room. After the first out in the 9th he was on the edge of his seat. After the second out he was standing up in front of his chair staring at the television. As the pitcher prepared to face the last batter, Jack looked like a proud father. When the perfect game was complete, Jack was grinning ear to ear. The man stands by his team and thoroughly enjoyed his moment in a room full of Giants fans.
The weekend was a nice break after the medical tests on Friday. We have discovered a downside of allowing doctors to put cameras into you body to see what's going on. Sometimes they find problems. We wanted answers to Maggie's repeated symptoms. Be careful what you wish for. We have the answers and we don't like them. Maggie will need surgery to repair a fistula (opening) that has developed between her lungs and esophagus. Not sure yet what exactly is entailed, but it will not be fun for her, or for any of us, that's for sure. This is not a new problem, because we have been fighting these symptoms for months, but now that we know it's there it has to be fixed. More news as it happens.
The boys watched the Giants game while they ate and when that game was over switched to the Oakland A's game. All of us are Giants fans and tolerate but don't really follow the A's. The only exception to this is my nephew Jack, who is 15. He has always been an A's fan and proudly stands out among all the cousins
My favorite image of yesterday had nothing to do with my mother or with being a mother. Rather it is an image of Jack and came at the end of the A's game. The A's pitcher, Dallas Braden, had a perfect game going. By the end of the game all of us were in the room watching to see if he could pull it off. There weren't enough seats for everyone and several of us were standing. Jack had the leather recliner, the best seat in the room. After the first out in the 9th he was on the edge of his seat. After the second out he was standing up in front of his chair staring at the television. As the pitcher prepared to face the last batter, Jack looked like a proud father. When the perfect game was complete, Jack was grinning ear to ear. The man stands by his team and thoroughly enjoyed his moment in a room full of Giants fans.
The weekend was a nice break after the medical tests on Friday. We have discovered a downside of allowing doctors to put cameras into you body to see what's going on. Sometimes they find problems. We wanted answers to Maggie's repeated symptoms. Be careful what you wish for. We have the answers and we don't like them. Maggie will need surgery to repair a fistula (opening) that has developed between her lungs and esophagus. Not sure yet what exactly is entailed, but it will not be fun for her, or for any of us, that's for sure. This is not a new problem, because we have been fighting these symptoms for months, but now that we know it's there it has to be fixed. More news as it happens.
Friday, May 7, 2010
No Soup for you
Just a drive by today. In two hours Maggie has to be in the admitting office at UCSF. They are doing two procedures in the OR which of course means anesthesia. Hopefully we will be home by dinner time, but there is a possiblity that she (we) will spend the night. Last year we did the same thing came home and had to go back in emergently the next day. I suggested they just plan to keep her so she will be safe. that was a few weeks ago when she was still showing signs and symptoms of that stubborn infection. Now she's very healthy. I will do whatever they say, but I don't feel strongly one way or the other. (See, sometimes I'm compliant.)
I have to gather up all the necessary gear for both an 8 hour stay and a 24 hour stay. So I'm off.
Maggie is on her computer asking for breakfast over and over and over again. She cannot eat because of the anesthesia. She gets that, but doesn't at the same time. I just tell her "No Soup for YOU" and she laughs her head off.
(If that doesn't make sense to you , go watch reruns of Seinfeld.)
Keep a good thought. I'll check back in later
I have to gather up all the necessary gear for both an 8 hour stay and a 24 hour stay. So I'm off.
Maggie is on her computer asking for breakfast over and over and over again. She cannot eat because of the anesthesia. She gets that, but doesn't at the same time. I just tell her "No Soup for YOU" and she laughs her head off.
(If that doesn't make sense to you , go watch reruns of Seinfeld.)
Keep a good thought. I'll check back in later
Wednesday, May 5, 2010
Energy Star Rated
A couple of months ago we purchased a new washing machine. The old one bit the dust after 20+ years of incredible service. The new one is an energy efficient front loading machine that is quiet as a mouse. The clothes are not wringing wet when they come out and the drying time is literally cut in half. That is without and energy saving dryer. I am not one to wax poetic about a household appliance, but this washing machine is WONDERFUL!
I do a lot of laundry, not as much as I did when the boys were home, but far more than average. Maggie accounts for at least 75% of the household laundry. With all the procedures she has done, the feedings and the medications there are many spills. It is simply an unpleasant fact. However, the main source of Maggie’s laundry comes from the trach
You have undoubtedly noticed in 99% of the pictures Maggie is wearing a scarf around her neck. That scarf is not a fashion statement – though she wears it well. It is there to catch the constant flow of secretions from Maggie’s trach. The suction machine goes almost nonstop to get the secretions from the trach, but even with all that effort, Maggie goes through many wardrobe changes. The scarf around her neck is the item changed most often. We own at least 50 of them and it is not at all unusual for Maggie to go through 10 or more in a single day. Often times shirt changes are required along with the scarf changes.
I did a load of Maggie’s wash today. I was amazed at how dry it felt coming out of the washing machine and threw it in the driver feeling so “green” and politically correct. When that was dry I tossed the large load on the futon in the laundry room and started folding about three loads of wash piled there. (There are at least four more to do.) Just as I sat down, I glanced over at the washing machine and I realized I did not start the new load in the “new” washer. I jumped up, pressed the button, and marveled again at its quiet efficiency.
I was folding scarf after scarf. I noticed one did not seem very clean. I stopped mid-fold and looked over at my silent washing machine and back at the pile of clothes I was folding. The load was REALLY dry when I took it out of there to put in the dryer. Could it be? Did I start it? Of course I started it. I did not just dry and start folding a huge load of laundry that was never washed. Did I? No way! It cannot be.
I started folding again, slower now. The more I thought about it the more grossed out I became. I stood up and put the entire load back in the wash pile. I cannot be sure that it was washed. Given the disgusting stuff that is all over those scarves and shirts, I could not take the chance.
I have to turn in my green badge and get a whooping from the planet. Either I washed and dried a load of wash twice or I dried an entire load of dirty clothes. Though it is worse for the planet, I really hope it is the former because it is stupid but not disgusting.
Energy efficient? Hardly.
.
I do a lot of laundry, not as much as I did when the boys were home, but far more than average. Maggie accounts for at least 75% of the household laundry. With all the procedures she has done, the feedings and the medications there are many spills. It is simply an unpleasant fact. However, the main source of Maggie’s laundry comes from the trach
You have undoubtedly noticed in 99% of the pictures Maggie is wearing a scarf around her neck. That scarf is not a fashion statement – though she wears it well. It is there to catch the constant flow of secretions from Maggie’s trach. The suction machine goes almost nonstop to get the secretions from the trach, but even with all that effort, Maggie goes through many wardrobe changes. The scarf around her neck is the item changed most often. We own at least 50 of them and it is not at all unusual for Maggie to go through 10 or more in a single day. Often times shirt changes are required along with the scarf changes.
I did a load of Maggie’s wash today. I was amazed at how dry it felt coming out of the washing machine and threw it in the driver feeling so “green” and politically correct. When that was dry I tossed the large load on the futon in the laundry room and started folding about three loads of wash piled there. (There are at least four more to do.) Just as I sat down, I glanced over at the washing machine and I realized I did not start the new load in the “new” washer. I jumped up, pressed the button, and marveled again at its quiet efficiency.
I was folding scarf after scarf. I noticed one did not seem very clean. I stopped mid-fold and looked over at my silent washing machine and back at the pile of clothes I was folding. The load was REALLY dry when I took it out of there to put in the dryer. Could it be? Did I start it? Of course I started it. I did not just dry and start folding a huge load of laundry that was never washed. Did I? No way! It cannot be.
I started folding again, slower now. The more I thought about it the more grossed out I became. I stood up and put the entire load back in the wash pile. I cannot be sure that it was washed. Given the disgusting stuff that is all over those scarves and shirts, I could not take the chance.
I have to turn in my green badge and get a whooping from the planet. Either I washed and dried a load of wash twice or I dried an entire load of dirty clothes. Though it is worse for the planet, I really hope it is the former because it is stupid but not disgusting.
Energy efficient? Hardly.
.
Tuesday, May 4, 2010
On the Edge of her Seat
Maggie is showing her teenage-ness in her own inimitable fashion. I have written before of her ability to unclip the belts holding her shoulder harness and seat belt on. Subsequently she progressed to unhooking the belt that straps her into the bus. It was only a matter of time before she figured out the groin straps. Those are the most important because they really secure her to the wheelchair. But only when they are fastened.
Not any more. Maggie unhooks them with reckless abandon and it's only a matter of time before she falls out of that chair. We are working on remedying the situation, but it is difficult because Maggie has a need/obsession to show us that she has figured it out. I tried to explain just because you KNOW HOW to do something you don't have to do it all the time. For example, I KNOW HOW to throw you out the window, but I don't DO it. She just smiles and unhooks the buckles. I guess its not different than another 16 year old acting out; she's living on the edge.
For now I just have to keep the tray on the chair so she can't get to the belts - or at least not easily. . We are also considering lengthening them so she cannot reach of even putting lockable clips on - but we have to balance the need to get her out of the chair quickly.
Generally I'm happy with behavior that is age and emotionally appropriate. This one, not so much. Oh well, other16 year old kids are getting driver's licenses. That's a whole different kind of seat belt issue.
___________________________________________________________________________
Today is the launch for the new cookbook Stir Frying to the Sky's Edge by my good friend Grace Young. check out a review http://www.inmamaskitchen.com/Book_Reviews/international_cooking/Stir_Frying_YOUNG.html
Not any more. Maggie unhooks them with reckless abandon and it's only a matter of time before she falls out of that chair. We are working on remedying the situation, but it is difficult because Maggie has a need/obsession to show us that she has figured it out. I tried to explain just because you KNOW HOW to do something you don't have to do it all the time. For example, I KNOW HOW to throw you out the window, but I don't DO it. She just smiles and unhooks the buckles. I guess its not different than another 16 year old acting out; she's living on the edge.
For now I just have to keep the tray on the chair so she can't get to the belts - or at least not easily. . We are also considering lengthening them so she cannot reach of even putting lockable clips on - but we have to balance the need to get her out of the chair quickly.
Generally I'm happy with behavior that is age and emotionally appropriate. This one, not so much. Oh well, other16 year old kids are getting driver's licenses. That's a whole different kind of seat belt issue.
___________________________________________________________________________
Today is the launch for the new cookbook Stir Frying to the Sky's Edge by my good friend Grace Young. check out a review http://www.inmamaskitchen.com/Book_Reviews/international_cooking/Stir_Frying_YOUNG.html
Monday, May 3, 2010
Team Justin
Both Maggie and I meet numerous people during our hospital stays. It is not unusual for us to know two or three other patients when Maggie is admitted. There are a number of “frequent flyers” (regular patients) at UCSF Children’s Hospital, and both parents and kids get to know each other.
On Saturday we went to Crissy Field to support one of those kids. Justin is 14 and has Cystic Fibrosis (CF) which is a crappy disease. He has to spend long stretches in the hospital but he makes the most of it. He is well known for the Wii competitions held in his room. Unless you saw him in the hospital though, you would NEVER know this kid has anything going on. He is an active 14 year old that has a ton of fun.
On Saturday, the “Great Strides” walk to benefit Cystic Fibrosis research was taking place at Crissy Field. This disease should be cured. Researchers are making "great strides” toward a cure and Justin’s family is very active in raising money for research. They recruited many walkers to participate and were having a barbecue afterward. It was a fantastic day, so Maggie and I headed down there. Dad was going to join us a bit later after giving his sister and her friends a whirlwind tour of San Francisco.
There were a gazillion people at Crissy Field. I looked around for “Team Justin,” pushing Maggie through the various awnings and parties set up for other walkers. There was a huge group or fraternity boys and sorority girls in one group. Just as I pushed Maggie through their group, the pizzas arrived and we were completely surrounded by frat boys. Note to self – never get between fraternity boys and free pizza. They quickly parted ways so we could pass, but it was a funny few minutes.
I found Team Justin when I saw a nurse from the UCSF PICU. She recognized Maggie and came to retrieve us. There were burgers, hot dogs grilling, and walkers returning for the feast. I spoke briefly with Tina, Justin’s mom (who serves on the Family Advisory Council with me and other parents). I caught up with Chriss, the nurse manager whose kids went to school with mine.
As I chatted, I started to suction Maggie and found the suction machine would not suck. Really? The machine has one function. I could not get it to work. I called to see if Steve was home and could grab the other, but he was still touring. We had to leave. Maggie was doing ok, but I had maybe 10 minutes to get to a working suction machine, which is just about how long it would take to get home. .
I said my goodbyes. Rob, Justin’s dad said,” Aren’t you going to eat.” I told him I couldn’t. I used to (jokingly) say that everything in my life sucked except my vacuum, so I quickly reformed that saying to fit the situation and took off.
We did get a picture of Justin and Maggie, though. Justin is holding his friends dog “Starbucks”
If you want to participate in the Great Strides Event on your area or get involved in the fight against Cystic Fibrosis, check out http://www.cff.org/great_strides/
Unrelated but important note: Today is my 24th wedding anniversary. I am a very lucky woman because I met and married the right person for me. As I waited for Maggie’s bus this morning at 7:00AM, chatting with the night nurse who was leaving and the school nurse who was arriving and trying to get the dog to stop barking I thought “who would have thought this would be my life 24 years later” And then I smiled. Better, worse, richer, poorer, sickness, health. We have had ‘em all. Happy Anniversary, dear.
On Saturday we went to Crissy Field to support one of those kids. Justin is 14 and has Cystic Fibrosis (CF) which is a crappy disease. He has to spend long stretches in the hospital but he makes the most of it. He is well known for the Wii competitions held in his room. Unless you saw him in the hospital though, you would NEVER know this kid has anything going on. He is an active 14 year old that has a ton of fun.
On Saturday, the “Great Strides” walk to benefit Cystic Fibrosis research was taking place at Crissy Field. This disease should be cured. Researchers are making "great strides” toward a cure and Justin’s family is very active in raising money for research. They recruited many walkers to participate and were having a barbecue afterward. It was a fantastic day, so Maggie and I headed down there. Dad was going to join us a bit later after giving his sister and her friends a whirlwind tour of San Francisco.
There were a gazillion people at Crissy Field. I looked around for “Team Justin,” pushing Maggie through the various awnings and parties set up for other walkers. There was a huge group or fraternity boys and sorority girls in one group. Just as I pushed Maggie through their group, the pizzas arrived and we were completely surrounded by frat boys. Note to self – never get between fraternity boys and free pizza. They quickly parted ways so we could pass, but it was a funny few minutes.
I found Team Justin when I saw a nurse from the UCSF PICU. She recognized Maggie and came to retrieve us. There were burgers, hot dogs grilling, and walkers returning for the feast. I spoke briefly with Tina, Justin’s mom (who serves on the Family Advisory Council with me and other parents). I caught up with Chriss, the nurse manager whose kids went to school with mine.
As I chatted, I started to suction Maggie and found the suction machine would not suck. Really? The machine has one function. I could not get it to work. I called to see if Steve was home and could grab the other, but he was still touring. We had to leave. Maggie was doing ok, but I had maybe 10 minutes to get to a working suction machine, which is just about how long it would take to get home. .
I said my goodbyes. Rob, Justin’s dad said,” Aren’t you going to eat.” I told him I couldn’t. I used to (jokingly) say that everything in my life sucked except my vacuum, so I quickly reformed that saying to fit the situation and took off.
We did get a picture of Justin and Maggie, though. Justin is holding his friends dog “Starbucks”
If you want to participate in the Great Strides Event on your area or get involved in the fight against Cystic Fibrosis, check out http://www.cff.org/great_strides/
Unrelated but important note: Today is my 24th wedding anniversary. I am a very lucky woman because I met and married the right person for me. As I waited for Maggie’s bus this morning at 7:00AM, chatting with the night nurse who was leaving and the school nurse who was arriving and trying to get the dog to stop barking I thought “who would have thought this would be my life 24 years later” And then I smiled. Better, worse, richer, poorer, sickness, health. We have had ‘em all. Happy Anniversary, dear.
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