Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 51
Claire's first day back to her routine, but mom and dad thought it best to give her one more day, plus the weekend, before she went back to school. So she is off today and dad one last time relieves the sitter at 2pm. The kids will also start summer camp next week. No more hanging around the house vegetating.
left for work and was excited as it is a banner day for Claire.
Today is her last day of IV antib and she gets her line out.
Mom called the Home Health folks and asked if they could pull
the line (and stitches) later in the day so mom could be there.
had a nice day with mom and the sibs. She slept a good amount
and mom got a lot of work done. Claire ate well today too,
she must know that tomorrow is her last day of IV antib's!
Claire's sitter needed the day off, she is moving, sad. We will miss her. She will be here through the end of the week tho - yeah! Dad stayed home with the kids all day -- good dad!.. and good for mom as she had much work to do and it was nice to go in and be with adults. ;o)
Mom got the happy little girl up from her bed and changed her diapy... she is in a great mood today and full of smiles. Just looking at her gives her a big grin, much less picking her up.
Fairly mellow day for the family. Mom was lacking energy until her second cup of tea kicked in and she got her first wind late in the day and started cleaning. There's never 'enough' cleaning, but dad was at the grocery store so he had a place to put the groceries at least when he came home ;o)
Claire was home with the sitter and the sibs. Mom got home late from work and enjoyed her time with the kids individually. In the evening, Claire watched a rented movie with the family and then off to bed after a late night bite.
Mom gave Claire her meds while the Peanut was half asleep and out the door to work. Her sitter came and relieved dad at 9am, but had difficulty waking her to eat. She also noticed when she was giving Claire her IV that some blood was 'backing up' similarly to what happened over Memorial Day weekend at the beach. Mom was at work, and said she should just keep flushing and if it didn't clear and stay clear, they should call the nurse to come out and look it over. In the evening, mom noticed some blood in the line and noticed the little white pop thing (that holds the pressure) wasn't popped. One line, the lt blue one, flushed, but the brown one didn't . Mom is a bit nervous that it is looking like they are down to only one line - and with a full week left on the treatments. She will call the nurse out in the morning. Mom didn't get home until about 6pm, and didn't call then thinking that the nurse would just say, 'don't use that line'.... which is likely what the dr will say tomorrow if they see it then.
|May 30||Mom worked from home today, mostly in the early morning and evening as there were a few errands to run. Actually, more like appointments. Claire's big brother got his braces off today. A banner day. Showing his 'dark' side and trying not to smile about anything or show any excitement over no more braces, it is rather entertaining. Sometimes he gives up and just grins to get rid of the family trying to make him smile.
After that, Claire had PT. It was the first therapy in probably more than a month. The therapist said she did really well, mostly lower body (leg and hip) stretches and some standing. After that appt, mom took the kids to Claire's ortho appt. He looked over the xrays from the broken collar bone from the hospital and then took more xrays and compared them. Ick. The bones cross over. There isn't much they do about that. Just let it regenerate itself as bone evidenlty can do and be just fine with it all. Unless a bone is sticking out of the skin, there is typically nothing done, so Claire's family has been told. Mom forgot to the the specific instructions for the PT regarding Claire's bone... she will need to call back for that... darn it.
|May 29||Claire slept in and mom went to work. She was thinking it was Monday and she'd have meetings, but it was Tuesday (holidays always mess her up) so it was a light day. Dad on the other hand had a rough day, so mom took the 2pm shift and relieved the sitter. Before that, she'd run over to the hospital and got Claire's film of her fracture and dropped it off at the dr's office for tomorrow's visit. Hoping it would save time if he got it early. In the evening, she relaxed with the kids.|
|May 28||The family packed up and came home from the beach. The drive seemed quick as the kids all slept much of the way, including Claire. Her sibs woke up with an hour left in the drive and watched a video.
Once home, Claire ate, then ate again after a bit. Mom noticed a little rash staring on her bottom, and remembered that Claire hadn't had yogurt since Friday, and with all the antib's, she could easily get a yeast infection, so she put a little yogurt On her bunnies (what could it hurt) and she fed her a few spoonfuls of yogurt (covering both ends) and will change her diaper again after her bath tonight. Mom gave her the IV antib's after they returned home. Usually Claire gets them in the morning, mom has all day to recover if she forgets, but it seems to be habit now. Mom decided to wait until they got home... aside from the comforts of home, mom was down to only a few salines for flushing, and didn't want to worry about any problems, she had plenty of salines at home, so she opted to hold off for a few hours till they were home.
Everyone had a relaxing evening, until mom told Big sister that it was too bad her room was such a mess because mom and dad were thinking of taking them all to the movies... she told big brother who jumped in and 'helped' clean the room... actually, it is suspect just who cleaned the room, but it was done in record time and so mom decided she had just enough energy to make the 7:20 movie... and off they went. Shrek 3... 5 stars with the family! After, it was icecream for everyone!
|May 27||Claire had a fun weekend. She was at the beach and enjoyed all the attention. Mom had her in the sun for about 20 minutes this morning, everyone needs a little vitamin D, tho Claire had on some heavy-duty sunscreen. She enjoyed the wind in her hair and her hat she was wearing was enough to keep the sun out of her eyes. She had a relaxing weekend, spending sometime in her bumbo chaire as everyone sat around getting caught up in conversation.|
|May 25||Claire had a nice day. Mom took off work to pack and get the family on the road. She didn't do a very good job as they didn't leave until much later in the day than she would have liked. The interstate was smokey for the first hour, fires in Georgia, then the rest was smooth sailing. Mom was more than fired up about a weekend at the beach, and Claire picked up on that and was ready to rock and roll. She did great in the car, as always, she is a good traveler!|
|May 24||Claire's mom went to work and took off early to get Claire to her appts. She had two, one with the ped infectious disease dr and the other with the ped cardiologist. They went well. Evidently the echo of her heart showed that she still had the infection, as expected, but that it hadn't grown - yeah! They told mom that is likely the best scenerio at this point. The antib's are to kill the living bad bacteria, but the dead stuff would still be there for around 6 months. Claire seems to be on schedule for healing. The line comes out after June 7. Something to look forward to then, and hopefully she will be back in school the following week! Next appt in 3 months.
Today is the kids last full day of school. They will likely miss the very last day, and report cards, as mom thinks that particular day is insane. On typical days, the kids are picked up right after school (sometimes) and other times after any afterschool activities, etc. Tomorrow, all the kids get out at the same time. Talk about traffic! Mom has opted out of that the past few years.
|May 23|| Video of Claire Dancing - Quicktime movie ~ 4M, sorry for those of you with slow connections ;o\
Even at high speed, you will want to go get a cup of coffee while it is loading.
Claire got her echo today. Tomorrow she sees the drs to see if it looks good. Because of the time, she didn't get to go to her PT appt... again.
|May 22||Mom's trying to get an appt with the ortho. In the hospital, she'd asked the dr to see if one could see Claire while she was there. The dr said mom would have to call and set up an appt. Mom called back then and the appt person at the ortho office said the dr would have to call. Mom told the dr, but even now, mom hasn't heard anything. So obviously the dr hadn't ever called.
So today, mom is on the warpath. She feels like she dropped the ball and if Claire's shoulder healed, and healed wrong, it would be a crime. She contacted the ortho again, they said the same thing and this time added that the ortho dr would have to see the xrays before they could even MAKE the appt, and the appt would be on 'next available' at best. Mom was more than irritated with the whole situation (among other things, didn't even know how to get the xrays, much less thinking that Claire's shoulder would have healed before she got her first ortho appt) ... and she was irritated with that woman and all but hung up on her. How ridiculous is it that a chidl with a broken bone would have to wait until who-knows-when to be seen??! Called Claire's ped and they took the ball on this. They got Claire an appt for next week and told mom how/where to get the xrays. Yeah!
|May 20||Claire had a nice day. She went to mass after eating bananas and in mass she was still hungry. She was pointing to and tapping on her mouth and so mom took her out and fed her more bananas (they are the easiest thing to feed her). That was the second time mom took her out, the first time was because Claire was talking loudly and singing out of key.... and out of a lot of things.
After mass, mom took a quick nap while Claire was napping, then got up delivered big sis to her end of year Brownie Scouts party... got home and gave Claire her IVmeds. Claire did great. Mom did too.
Claire hung out for a bit and mom put her in her stander... Claire didn't really think that she was suppose to stand in it, but opted to nap. Guess the contraption is comfortable. Mom is going to move her to her crib.
|May 19||Claire slept in a bit while dad got big brother off to a party and then ran off to a meeting. Mom was up with Claire, gave her a little banana waiting for the nurse to show up for the IV antibiotics. She comes at 10am, and dad pulled the med out from the fridge at 9am per nurse instructions.
By 10:30am, mom called the home health folks and found out a nurse wasn't scheduled, but they could send one if mom was uncomfortable with administering the IV antib's. Mom said she'd only seen it done once and would at least want a nurse to watch her to see that she was doing it right. Mom called dad and he said that the nurse on Friday said there wouldn't be a nurse coming out on the weekends and thought mom was fine with it.
When the nurse arrived, she helped mom clean the lines with saline, then start 'infusing' the antib's. Part way though, the nurse realized mom didn't undo the clamp. Just after 11am, the nurse noticed Claire's shirt was wet. So she took off the shirt, took off the dressing (which was also wet, mom just thought it was from Claire drooling and waiting for more breakfast.). The nurse took the antib' off the line and flushed it noticing there was a line of saline coming from the IV site on Claire's chest/shoulder and said it could be cracked. Mom was bewildered as to what she should do next. They gave her the antib's through another line (Claire has 3) that seemed to work and didn't leak, and that finished after 11:30am.
She asked if the leaking probem could be something that could wait until Monday, but the nurse insisted that if there was any kind of opening, and infection could get in. She recommended mom call one of Claire's drs. Thing is, Claire has so many drs... which one to call? The ped wouldn't really know what to do, maybe send her to ER. The surgeon didn't exactly give mom a 'call this number in case of emergency'. Mom decided to thumb through the phone book to see if she could find the surgeon, no luck. She did come across the ped that Claire had in the hospital, by then it was already noon, she called her. The recording mentioned she was on call today and should call back within an hour! Mom was a bit relieved and left a message. She got a call back in about 10 minutes.
The ped said she should come to pediatrics and be admitted as an outpatient so a surgeon could look at it and determine where to go from there. She suggested Claire be NPO (no food before surgery) until the surgeon is sure she won't need surgery. It is good that she only had those bananas all morning, but Claire's not thinking so. Mom packed up the diaper bag and the laptop, she also measured 2 doses of her meds. Dad is still out showing a home, so mom was able to drop off big sis with him before going to the hospital. Evidently, she got a really good offer to go swimming at a friends house, so she's having a nice Saturday.
The nurses hinted that they may just let them go home, since it is dressed. Mom followed up with the home health nurse who reminded her that she thought that the plastic part at the site could be cracked.
At 2:30pm, mom is waiting in a hospital room for the surgeon in the hospital to come and look at it. It could be a couple hours of waiting. Mom is glad she brought her laptop since it looks like they will be there a good while.
The surgeon showed up around 5pm. She tried to flush it and saline went in but they couldn't see it leaking, but the dr couldn't draw blood though that line either, so she thought it was likely clogged pretty good and the saline going in wasn't going to the vein - she flushed very little in. Since the central line they put in Claire actually had three different lines coming out, they suggested mom not use that one line. Each line also has a different color on the end, this was the white line that wasn't usable.
When they flushed it, it didn't leak either, so mom thought it just clogged more in between the time the nurse at home flushed it and the dr flushed it. Since saline would go in, and it didn't leak, the dr decided that it was unsafe to even flush.
With that in mind, the surgeon discharged Claire and they were out the door by 6pm. Yeah!
A wonderful family made dinner for Claire's family and it came at a good time. Mom had to get home and feed Claire, as much as Claire wanted as she was NPO (no eating before surgery) since her 10am bananas. But no longer NPO. Claire ate great of course, and mom has been certain to add yogurt to nearly every meal. With all of Claire's antib's the yogurt will counteract any change of Claire getting a yeast infection, or thrush in her mouth. Don't need anything more to worry about, for sure.
Dad got home sometime after 7pm, and the family had dinner, then Claire had another meal before bedtime. After she was in bed, dad heard her coughing and went in to check on her, she had thrown up. Mom went in to help him clean up, she was pretty tired, evidently high emotions can really wear a person out.
Today is Tierney's 4th birthday, she was one of Claire's friends with trisomy 18 who got her wings last summer. Claire's family is sending thoughts and prayers today to Tierney's family.
|May 18||Claire is getting back to her routine. Dad was able to feed her in the morning as mom got ready to go work. Mom looked over and Claire's mouth was full of food and she had the biggest grin on... she was kicking her feed and dad was just hoping she'd keep the food in her mouth and eventually swallow. Sometimes she doesn't get that open-mouth grinning and swallowing don't go together.
A wonderful friend came by to give mom and dad a break so they could get off to work and the home health nurse came by to give Claire her antib's. Claire slept much of the morning and there wasn't much eating going on as Claire was a tired baire.
In the evening she ate great for mom and went right to sleep.
|May 17||Claire had a good day. She was up relatively early, her blanket probably came off and she got cold.
Mom had her up, changed diaper, given meds and fed before dad returned home from taking the kids to school. Once he returned, he made breakfast and mom got ready for work... grabbed a biscuit and bacon and out the door she went. The healthcare worker came right on time to give Claire her antib's and all went smoothly according to dad, who was with Claire all day. Work was busy, and it was nice to be back... meetings, status reports, emails... all good stuff.
After work, mom picked up the kids late and got her car washed then back home as dad started to make dinner, Claire looks happy, mom decided to catch up on emails at home.
One of Claire's favorite sitters, who also just happened to graduate from nursing school only a month or so ago, has said she would watch Claire for mom and dad, starting tomorrow, the 'rents are really looking forward to getting back to work.
|May 16||A nice relaxing day for Claire and mom. Claire ate well and snoozed until the afternoon and mom got some work done from home. She felt really good about that as she filled out her leave online and saw it dwindling down. But that is what happens when you have a special baby.
Claire's teacher came by, as she realized Claire wouldn't be back to school before the end of the school year (two weeks or so) and wanted to pop in to see how she was and drop off end of year stuff and summer school forms. Mom was appreciative and enjoyed the company.
Claire ate great all day and in the evening seemed tired and snuggly. She slept great.
|May 15||Claire was up at 5:30am coughing. She was in and out of sleep, and so was mom. The nurse mentioned she needed to be ready at 6am for OR. Mom knew dad wouldn't be there until just before 7:30am, and that was the quickest he could be there since he had to get the kids off to the neighbors house, since they said they would take the kids to school.
Claire was 'picked up' just before 7am and whisked off to OR. Mom went along side and was able to stay with her until 7:45am when they wheeled her off. In the waiting room they have a nice dynamic board (tv screen) updated regularly to change colors, etc to let families know what stage the person is in the OR. (Going to OR, in OR, leaving OR, etc). The drs said it would be about an hour in OR and they were right. At 8:45, the color of the square on the monitor changed to indicate she was out of OR and within 5 minutes the dr came in to say she did great. The central line was put in, her breathing was great and they didn't intubate her but did something else (mom didn't really catch it all) and that she was pleased.
Around 10:15am, mom and dad were called to meet her in the hall to go back to the room. She was zonked out and her face and body was quite pink and dusky aournd her eyes and mouth, but the Post OR nurse who was monitoring her said her O2 sats were good (upper 90's) and it could be the aneths that made her 'colorful'.
back in the room her color was better at about 11am.
Drs are saying Claire may be able to go home tonight. She gets her dose of antibiotics (she was on two of them, and one will be discontinued). Her new IV lines will be flushed and tested out and then off they go. Claire will need her lines flushed twice a day and her antib once a day. Mom and dad have yet to figure out how they will be able to watch her all day, with work, but pray that it all works out and they can keep it all together. This line will be one big step towards that as it will get Claire home and allow mom some time to relax a bit (take a shower - a nice hot shower - maybe two showers in one day ... just because she CAN ;o)
The 'rents are working on contacting everyone to let them know Claire's good news and hopefully things continue on a smooth path for her recovery and in just 3 weeks she will have a clean bill of health!
At 11:30am, the dr was done talking to mom and dad and answering their questions. Looks like there will be some schedule shuffling in regards to Claire being home and not going to daycare.
Shortly after the dr left, dad left to go get a pizza... not the delivery type, he wanted the good stuff from their favorite little italian restaurant.
At 2:30pm Claire ate 5 oz of cereal, at 3pm, mom got word that she was officially discharged and they are going to head home as soon as they can pack up all their belongings.
They got home and mom put Claire in her stroller. Claire seemed happy to be sitting up and smiled and kicked much of the time she was there. Mom finally took her shower... ahhhhh!
The evening was nice as everyone was getting back to the normal routine. Dad made steaks (mom's favorite meal) and it was most delicious. Great guy! Mom thought she'd have some wine, as it makes her drowsy, but decided she wouldn't need any help getting to sleep tonight. She 'crashed and burned' about 11pm. Claire was in bed at that time, but she was talking and kicking and not looking too much like she was back to her routine. But mom didn't mind... she loved the noises, much better than hearing very little in the monitor, not even snoring, as was the case before the ER visit.
|May 14||Claire was up at 2am, coughing. She threw up phlem a few times and eventually went back to sleep.
She was up around 10am and signing to mom that she was hungry, and mom couldn't give her anything to eat since she 'may' to go surgery today. The drs came in and promised they would let mom know asap when they find out if the surgery is cancelled so Claire get eat again. Until then, mom turned up the heat a bit in the room and bundled Claire up so she can sleep, and sleep she has. Mom figures if she is sleeping, maybe she won't burn so many calories and she will not notice she is hungry... also, she will be well rested for the surgery.
By 11:00am, no news.
By 12:30pm, no news, so mom asked the drs when they might know so she would know how long Claire had to go without eating... Claire was hungry, and mom kept the temp warm in the room so she would continue to sleep. The drs looked at the clock, then at Claire, and declaired that since they didn't really know how long it could be, to just cancel the surgery today and plan on her going in tomorrow at 7:30am.
Mom was a bit relieved. She could feed Claire up until midnight and let her wake up and be a fun kid for the rest of the day. So she changed the temp in the room so it would be cooler and Claire started to wake up. She ate 7oz of cereal and hung out with mom for a bit, then went back to sleep around 3pm.
|May 13||No news today is good news.
Claire had a nice day, she's feeling good and eating well. Mom has her on a strick schedule to get the calories in. She's eaten about 8oz every 4 hours and mom has added duo cal to each meal.
Claire's dad met up with Claire's uncle to pick up big sis and then dad got big brother and back home for showers before church. Claire's uncle and aunt went to an early mass so they could watch Claire at the hospital and mom could go with the family to a later mass. It was so nice of them to do that and mom just really thought if she could just go to mass with the kids, that would make her Mother's day. Claire wanted to come, but the drs said no, and so she got to hang out with her aunt and uncle. Just before mass, when the kids arrived with their dad to the hospital room, they gave mom cards they'd made and presents. And a dozen gorgeous red roses... great kids!
After mass, dad dropped mom off at the hospital and took the kids to pick up some lunch for everyone, then back and in room, everyone ate lunch, then dad watched golf while mom and the kids read the comics.
Once everyone left, mom fed Claire and changed the temp of the room so it was a bit warmer and Claire would nap. Mom decided to nap too, it was right around 4pm when she layed down, waking briefly as nurses went in and out. When mom woke and looked at the clock, it was 7pm. It probably helped that she'd taken the phone off the hook when she went to sleep. She was well rested and called dad to check in and be sure he wasn't calling. He was. He wanted to tell her that her brother (Claire's uncle and her aunt) wanted to come by and watch Claire so they could go out to dinner. Also Claire's cousins were going to watch the sibs, so the bases were covered and mom was going out for a nice Mother's day meal. It was sorta late in the evening and they didn't get to the restaurant until after 8pm, so it was probably good that the kids didn't go, they were exhausted from the weekend, so much so that Claire's big brother fell asleep earlier in the car.
It was a nice evening and mom had never been to that particular restaurant when there wasn't a wait, but tonight, there were parking places AND no wait, the were seated immediately (again probably because it was so late, and a Sunday). Mom realized not only was she dressed shabby, but she had on her Tigger t-shirt. Fortunately, it was dark and no one seemed to notice.
Claire stayed on task with her eating and by 11pm she'd passed out. her tummy looks/feels full so she should be fine through the night. No eating after midnight, never know when you'll be wheeled to OR for surgery. Fingers crossed all goes smoothly when the time comes. Mom hates the whole hospital scene (doesn't help that one of the nurses mentiond that about 1/2 the kids on the floor came in throwing up and diarehha... Claire can't afford that.) Mom is a bit more comfortable knowing that she's had these past two days to get Claire 'plumped up' a bit more than she was. And she looks great, mom can tell she feels great too.
Thank you everyone for keeping Claire in your prayers.
|May 12||Claire was up about 2am. The nurse gave her some Mylacon and she settled right down and they got some
sleep. Not much news coming Claires way this weekend (fingers crossed). Mom is sad that she and Claire are in the hospital all weekend, esp since
Mother's Day is Sunday and she won't get to spend it with ALL of her kids. One is staying with friends and the
other is with dad until tonight when she will stay with her aunt and uncle - they have a pool, so she won't be missing mom much.
Mom hates when everyone is going in different directions, she always wants them eating dinner together and that hasn't happened much lately, except once or twice this week in the hospital. It can get pretty depressing being out of a routine and not being around everyone you love. And she worries about what affect it has on the kids.
The family loves the weekends when they can be together and do what they want, and the kids probably are doing just that. Dad is preoccupied with the wedding tonight and Parade of Homes tomorrow in town. At least Claire is stable for now and the worries will kick back in again on Monday, she's sure.
She ate great this morning. Lethargic much of the morning, probably her body trying to catch up on some sleep. Mom let her sleep in and took off her blanket and turned down the temp in the room to cool it off. She slowly woke up and she ate late today, around 10am, but she ate well and mom put her back in her crib to see if she would sleep. Mom may even try to sleep a bit too. She's even hoping to go home for an hour or two to shower - ahhhh. ;o)
Thinking that the nurses are also hoping mom will go home and shower too. (hehehe).
Mom got her shower... yeah! But she only had a very short window of opportunity, and she took it. Would have been nice to have about 3 hours, ,shower for one and nap for 2, but mom is an optimist and believes every day that that night she will actually get sleep... poor poor mom.
After the shower, and back in the room, mom was visited by the dr who mentioned Claire's heartbeat was a little fast. Mom mentioned that the RT said that the neb treatments could increase her heart rate, and maybe that was part of it. Her heart rate monitor never seemed to go off either. The dr said she'd check to see when the heart rate was written down in comparison to the treatment. Mom thought that was a good idea, and how she's curious, because she doesn't want anyone to rule out that there's a problem if one exists, and she doesn't want anyone to create a problem if the timing of the vitals was just wrong.
She fed Claire and a friend called and offered to come visit. She brought mom KFC and hung out for a good while while they talked and talked and talked... time just flew. Then Claire's uncle brought big sis by to visit on their way to go shopping. It was a nice visit, mom loved the company.
When they left Claire had her neb treatment and vitals taken, while mom heated her food... tonight was pureed (of course) chicken and dumplins and carrots. should be pretty good. We shall see.
Oh the insanity.
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