****What you are reading the girls are NOT aware of. We have not told them yet. Please be sensitive to this****
Today I heard the "official" word from Chicago that they WILL be listing Shelby for a liver transplant and appealing to UNOS for exception points due to the Hepatopulmonary Syndrome. Exception points are points given for certain complications. Specific labs & information are used to give a person a "score" that determines their place on the waiting list. When you have complications that are not represented by that score then your doctor can ask for exception points. Your case is then reviewed by UNOS and either they give the points or they don't. HPS (Hepatopulmonary Syndrome) gives you automatic exception points. From what I'm reading, 28 to be exact. We knew this day was coming at some point, but now that its here we are scared. We are very optimistic that Shelby's transplant will make her feel better, but sometimes you are just trading in one set of problems for another. There is really no choice in this situation, though. HPS is not reversible any other way. Liver transplant is the only way to make it stop. Oxygen was delivered yesterday by home health. Shelby is to use it for comfort. It doesn't help her oxygen saturation, just can make her more comfortable. We are not ready for this, yet have been preparing for it for 9 years. I just want my Shel-belle to be better. I will keep you all updated on when she is listed. We would appreciate prayers. Thank you.
Monday, August 22, 2011
Saturday, July 30, 2011
:-(
Shelby's O2 level fell to 75% during her test, but mostly stayed at 79% - NOT good. The cardiologist has to do the "official" reading of the test, then that info will be passed on to the pulmonologist, THEN her hepatologist. Then, we hear. Insurance called today denying the oximeter unless the patient is on oxygen at home. After relaying this to the pulmonologist's nurse, it looks like Shelby will be on oxygen. Sigh...we don't know what all this means yet. I will keep everyone updated. Please pray.
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| Shelby and her Pillow Pet that she got for doing so well on her test. |
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| Silly Shelby hugging her favorite 7-Eleven that we usually stop at on the way in and on the way home (bathroom breaks) from Chicago. What a nut! |
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| Ready for the test to start. |
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| Patiently waiting. |
Wednesday, July 27, 2011
It only took 8 days!
So here I am (finally) doing the update for last week's appointment. Not too shabby, eh?
Shelby's surgeon & hepatologist were both happy with her growth. Her wbc & platelets looked alright; nothing like we (us & them) expected after surgery, but we'll take it. The blood was flowing good through her shunt so she was taken off the Plavix - yay! Her Vitamin A level is quite low (always has been a battle to keep that up) so now she needs to add a Vitamin A supplement to her regime. Drop one pill, add another :-( Her oxygen (O2) saturation level was low, though. 90%. It needs to be closer to 98-100%. It used to be. 90% will get you put on oxygen if you are in the hospital. Not a huge surprise, but sort-of after her "normal" PFT readings in June. We were hoping they were a fluke, but when we got home we borrowed our doctor friend's portable oximeter. I spot-checked Shelby's O2 a lot. It wasn't good. It was not a fluke in clinic. In fact, after swimming (and then warming up) Shelby's O2 was only 84% :-( :-( :-( NOT. Good. At. All. This prompted me to call her pulmonologist's nurse and relay all this new info to her. She spoke with him and he ordered an oximeter for Shelby through home-health and wanted her cardiac stress testing bumped up from September. I got a call today that they had a cancellation tomorrow so we will be abandoning packing for a day - we move on Sunday - and heading in to Chicago. I don't know if we'll get the official results tomorrow, but Scott and I will be able to look at the computer screen and see what's going on. Unfortunately, we know too much about the medical world (for non-doctors, that is) and will be able to get a pretty good grasp of the situation. We need an answer as to why her O2 level is so low and most likely the answer is Hepatopulmonary Syndrome. Low oxygen saturation is the 3rd criteria that Shelby did not have, but seems to now. If she has HPS, then she will get put back on the waiting list and receive many exception points to put her high on the list. They don't mess around with HPS and for good reason. Low O2 sats can take a toll on your heart. Enough said.
Moving, 2 deaths from Durand church family this week and now this. Prayers for strength my friends, prayers indeed. Thank you.
Shelby's surgeon & hepatologist were both happy with her growth. Her wbc & platelets looked alright; nothing like we (us & them) expected after surgery, but we'll take it. The blood was flowing good through her shunt so she was taken off the Plavix - yay! Her Vitamin A level is quite low (always has been a battle to keep that up) so now she needs to add a Vitamin A supplement to her regime. Drop one pill, add another :-( Her oxygen (O2) saturation level was low, though. 90%. It needs to be closer to 98-100%. It used to be. 90% will get you put on oxygen if you are in the hospital. Not a huge surprise, but sort-of after her "normal" PFT readings in June. We were hoping they were a fluke, but when we got home we borrowed our doctor friend's portable oximeter. I spot-checked Shelby's O2 a lot. It wasn't good. It was not a fluke in clinic. In fact, after swimming (and then warming up) Shelby's O2 was only 84% :-( :-( :-( NOT. Good. At. All. This prompted me to call her pulmonologist's nurse and relay all this new info to her. She spoke with him and he ordered an oximeter for Shelby through home-health and wanted her cardiac stress testing bumped up from September. I got a call today that they had a cancellation tomorrow so we will be abandoning packing for a day - we move on Sunday - and heading in to Chicago. I don't know if we'll get the official results tomorrow, but Scott and I will be able to look at the computer screen and see what's going on. Unfortunately, we know too much about the medical world (for non-doctors, that is) and will be able to get a pretty good grasp of the situation. We need an answer as to why her O2 level is so low and most likely the answer is Hepatopulmonary Syndrome. Low oxygen saturation is the 3rd criteria that Shelby did not have, but seems to now. If she has HPS, then she will get put back on the waiting list and receive many exception points to put her high on the list. They don't mess around with HPS and for good reason. Low O2 sats can take a toll on your heart. Enough said.
Moving, 2 deaths from Durand church family this week and now this. Prayers for strength my friends, prayers indeed. Thank you.
Sunday, July 17, 2011
Please do not be shocked...
but, I am not just changing the header picture. I am actually doing an update!!!
Let's see, where did I leave you all hanging...Shelby's PFT (Pulmonary Function testing) went fine. BUT, her Pulmonologist still wants her to have a pulmonary stress test. That involves a treadmill and doing the PFT's. Shelby hates this test. It is hard for her. She's had it once before. She has to have a Cardiologist present for the test since she's followed by a Cardiologist. Whatev. This delays the test until September, but all her doctors feel its o.k. to wait until then. She has been doing well this summer with little to no chest pain.
She has done 2 weeks of day camp, and, like years past, has LOVED it. I am very pleased with the staff at Camp Winnebago for handling the 6 meds I had to send with Shelby to take every day very well. There is no way to work her meds to less than 5 doses a day when there are 15 meds resulting in 30 pills a day.
Tuesday she has an abdominal ultrasound to check the status of her shunt and she sees her Hepatologist & Surgeon. LONG day in Chicago for Shelby and her parents! Please pray that all looks well, specifically that her white blood cell count is normal, that her platelets have increased and that her spleen has shrunk since her last ultrasound in March. Hopefully (fingers crossed) she can stop taking the Plavix.
Riley just got back from a week at girl scout camp. While it became very tough on this Mommy mid-week missing her girl, Riley had a blast!
Avery did 2 weeks of 1/2-day Kinder Camp through Camp Winnebago and LOVED it, too. Yay!
Scott & I have been busy packing as we are moving to a brand-new house August 1st. Yippee! We will be renting it so we are NOT gaining homeowner responsibilities other than having to shovel the snow in the winter (they do that for us where we are now). We just decided we needed MORE space and when our rent went up here, we started looking at houses. We are very happy about this. This move puts us in the Harlem school district, not Rockford. While this is really good news in the long-run, it is hard to leave our Rockford public Montessori school. The girls have mixed feelings about going to a "regular" school, but I know they will do just fine.
Please do not hold high expectations of me and trust that I will post an update after Tuesday's appointment, but, like usual it is my goal to.
Hope everyone is having a great summer!
Let's see, where did I leave you all hanging...Shelby's PFT (Pulmonary Function testing) went fine. BUT, her Pulmonologist still wants her to have a pulmonary stress test. That involves a treadmill and doing the PFT's. Shelby hates this test. It is hard for her. She's had it once before. She has to have a Cardiologist present for the test since she's followed by a Cardiologist. Whatev. This delays the test until September, but all her doctors feel its o.k. to wait until then. She has been doing well this summer with little to no chest pain.
She has done 2 weeks of day camp, and, like years past, has LOVED it. I am very pleased with the staff at Camp Winnebago for handling the 6 meds I had to send with Shelby to take every day very well. There is no way to work her meds to less than 5 doses a day when there are 15 meds resulting in 30 pills a day.
Tuesday she has an abdominal ultrasound to check the status of her shunt and she sees her Hepatologist & Surgeon. LONG day in Chicago for Shelby and her parents! Please pray that all looks well, specifically that her white blood cell count is normal, that her platelets have increased and that her spleen has shrunk since her last ultrasound in March. Hopefully (fingers crossed) she can stop taking the Plavix.
Riley just got back from a week at girl scout camp. While it became very tough on this Mommy mid-week missing her girl, Riley had a blast!
Avery did 2 weeks of 1/2-day Kinder Camp through Camp Winnebago and LOVED it, too. Yay!
Scott & I have been busy packing as we are moving to a brand-new house August 1st. Yippee! We will be renting it so we are NOT gaining homeowner responsibilities other than having to shovel the snow in the winter (they do that for us where we are now). We just decided we needed MORE space and when our rent went up here, we started looking at houses. We are very happy about this. This move puts us in the Harlem school district, not Rockford. While this is really good news in the long-run, it is hard to leave our Rockford public Montessori school. The girls have mixed feelings about going to a "regular" school, but I know they will do just fine.
Please do not hold high expectations of me and trust that I will post an update after Tuesday's appointment, but, like usual it is my goal to.
Hope everyone is having a great summer!
Tuesday, June 07, 2011
Lots going on!
Tomorrow we head into Chicago to see Shelby's Pulmonologist. She's been doing o.k., but having a harder time swimming this year due to not being able to hold her breath under water as long. I'm nervous about what her PFT's might show.
Riley "graduated" from Montessori a week ago. The school goes through 6th grade and she just completed 5th, BUT we are moving!!! August 1st we will move approximately 1/2 mile north of where we are into a house :-) and it puts us in the Harlem school district. While we love Maria Montessori, we are not thrilled at all with what the district has to offer for middle and high school. It was a tough decision, but one that had to be made and the timing is right for us. We were going to try to live in our apartment the whole time Scott was in nursing school, but we are just too cramped...add that on to Scott working nights and sleeping during the day...not good. We found a brand-new house (its just the foundation right now) in a nice size subdivision to rent. If we like living there then we'll eventually buy it. So, if anyone is available Sunday, July 31st we'll be loading up the truck then. And, if you happen to have Monday, August 1st off, we could use some muscle that day, too. (wink, wink)
The girls had their last 1 hr and 45 min of school today. I got a lot of great pictures. They both had EXCELLENT report cards so we spent the afternoon swimming at Sand Park Pool.
Last Friday we were invited as a Make-A-Wish family to the Rockford Airshow to watch the planes practice. Very cool! They showered the big girls (we left Avery with Grammie & Poppy) with tons of goodies! They treated Shelby like royalty! It was a lot of fun!
Enjoy the pics! Hope and pray that I have good news to report tomorrow.
Riley "graduated" from Montessori a week ago. The school goes through 6th grade and she just completed 5th, BUT we are moving!!! August 1st we will move approximately 1/2 mile north of where we are into a house :-) and it puts us in the Harlem school district. While we love Maria Montessori, we are not thrilled at all with what the district has to offer for middle and high school. It was a tough decision, but one that had to be made and the timing is right for us. We were going to try to live in our apartment the whole time Scott was in nursing school, but we are just too cramped...add that on to Scott working nights and sleeping during the day...not good. We found a brand-new house (its just the foundation right now) in a nice size subdivision to rent. If we like living there then we'll eventually buy it. So, if anyone is available Sunday, July 31st we'll be loading up the truck then. And, if you happen to have Monday, August 1st off, we could use some muscle that day, too. (wink, wink)
The girls had their last 1 hr and 45 min of school today. I got a lot of great pictures. They both had EXCELLENT report cards so we spent the afternoon swimming at Sand Park Pool.
Last Friday we were invited as a Make-A-Wish family to the Rockford Airshow to watch the planes practice. Very cool! They showered the big girls (we left Avery with Grammie & Poppy) with tons of goodies! They treated Shelby like royalty! It was a lot of fun!
Enjoy the pics! Hope and pray that I have good news to report tomorrow.
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| June |
Saturday, June 04, 2011
Stuff
Some "stuff" has been going on with Shelby, but so far nothing MAJOR. I'll update more after her Pulmonologist testing and appointment this Wednesday.
Thursday, April 21, 2011
No update = Good news
Sorry to be absent for so long, dear readers, but things have been busy and not too bad around here. Shelby's birthday was great and she is officially 9 now :-) We also had Avery's birthday. Four!!!! Didn't I just have her?!?!?
Shelby's ammonia level was high (just above 100) when we were in clinic mid-March. She has been started on Lactulose to help bring it down and as of last week's labs it was in the normal range. Her wbc & platelets, though, still sucked. A little less than 2 months will be 6 months since her shunt surgery and while her incision is healing beautifully, her numbers should be better than that. The surgeon said the spleen did a really good job of being bad and it will take a while for it to correct, but its getting down to crunch time. I have no idea what will happen if we hit that 6-month mark and have no change in her numbers....and really, right now, I don't want to know. One day at a time. And today is good.
April 1st my friend Michelle passed away at the age of 33 from colon cancer. Not only did I grow up with her and her brother, Nick, but Nick's daughter and Shelby are best buddies. Very sad. Then the next week, I got an e-mail from my friend, Karin, who is in her early 40's. Her mother just passed away last month from breast cancer and Karin was diagnosed with colon cancer. Thank God the cancer has not spread, but she is in for a really tough treatment. Please pray for her and her 3 boys.
Today we celebrate Scott's 44th birthday. I'm glad he has the chance to sleep in today - his college is closed today - he really needs it. He is working his butt off and I am so proud of him! He keeps getting the top test scores in his classes! He will be a GREAT nurse!
Well, that's all for now. Enjoy the pictures. The girls are growing so fast. Riley is only a few inches shorter than me and we wear the same size shoe now. She's not a little girl any more :-(
As we wait patiently for Mother Nature to warm up the outside, may our hearts be blessed knowing of the promise of new life in Jesus Christ! Happy Easter!
Shelby's ammonia level was high (just above 100) when we were in clinic mid-March. She has been started on Lactulose to help bring it down and as of last week's labs it was in the normal range. Her wbc & platelets, though, still sucked. A little less than 2 months will be 6 months since her shunt surgery and while her incision is healing beautifully, her numbers should be better than that. The surgeon said the spleen did a really good job of being bad and it will take a while for it to correct, but its getting down to crunch time. I have no idea what will happen if we hit that 6-month mark and have no change in her numbers....and really, right now, I don't want to know. One day at a time. And today is good.
April 1st my friend Michelle passed away at the age of 33 from colon cancer. Not only did I grow up with her and her brother, Nick, but Nick's daughter and Shelby are best buddies. Very sad. Then the next week, I got an e-mail from my friend, Karin, who is in her early 40's. Her mother just passed away last month from breast cancer and Karin was diagnosed with colon cancer. Thank God the cancer has not spread, but she is in for a really tough treatment. Please pray for her and her 3 boys.
Today we celebrate Scott's 44th birthday. I'm glad he has the chance to sleep in today - his college is closed today - he really needs it. He is working his butt off and I am so proud of him! He keeps getting the top test scores in his classes! He will be a GREAT nurse!
Well, that's all for now. Enjoy the pictures. The girls are growing so fast. Riley is only a few inches shorter than me and we wear the same size shoe now. She's not a little girl any more :-(
As we wait patiently for Mother Nature to warm up the outside, may our hearts be blessed knowing of the promise of new life in Jesus Christ! Happy Easter!
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| Spring 2011 update |
Sunday, March 20, 2011
HOME
We made it home yesterday. Our nurse was great at reminding the doctors if they were going to discharge Shelby that we REALLY needed to hit the road by Noon - Scott needed to get home to sleep for work at night and I had a thirty-one party at 2 p.m. We made it just in time!
Shelby is doing great, but my Riley is still not feeling so great. No fever since Friday, but her stomach still hurts :-(
Tomorrow Shelby turns 9 - unbelievable! I'll post more then.
(P.S. Please pray for Emerson - her blog can be accessed in the right-hand column. Part of her transplanted bowel had to be removed this week and the remaining part has perforated twice! She is so sick! Please pray healing prayers for her. Thank you.)
Shelby is doing great, but my Riley is still not feeling so great. No fever since Friday, but her stomach still hurts :-(
Tomorrow Shelby turns 9 - unbelievable! I'll post more then.
(P.S. Please pray for Emerson - her blog can be accessed in the right-hand column. Part of her transplanted bowel had to be removed this week and the remaining part has perforated twice! She is so sick! Please pray healing prayers for her. Thank you.)
Friday, March 18, 2011
It can change SO quickly!
7:57 p.m.
Shelby was admitted. They do not have her on any meds, but wanted to watch her overnight. Her fever is finally down to the 99-range and she has perked up quite a bit.
Riley is not feeling well, either, but they don't have the same symptoms! Scott met my parents in Elgin and did the Riley & Avery exchange. He is back here with us for the night in the hopes that she gets sprung in the morning.
9:05 a.m.
Shelby is undergoing skin patch testing this week. Tuesday we went to Northwestern, she had the patches put on her back, went to Children's and saw her hepatologist & surgeon and had an abdominal ultrasound to check on her shunt. We got a good report that day. Her wbc & ANC still aren't good, but her spleen still felt smaller. Scott was not feeling well that day and went to Immediate Care and tested positive for strep.
Shelby tolerated the skin patches well and when they bothered her, Benadryl did the trick. All 5 of us came in yesterday, the skin patches were removed and we set out for some Chicago fun as you can see in the picture album.
Last night Shelby started complaining that her tummy hurt. She did not sleep well and around 6:30 a.m. I felt her and she was warm. Her temp was 100.8 - not bad, but with the only symptom being tummy pain we headed over to Children's ER (we stayed at the Kohl's House last night). Here her temp has spiked to 102 and she is NOT my Shelby. She is crying over everything. The exam, putting on Emla....NOT Shelby. She doesn't even want to play her DS! She is resting right now. Like I said, NOT Shelby. So far, her strep test came back negative and they are waiting to hear from her docs here on what tests to run. :-(
Prayers please...
Shelby was admitted. They do not have her on any meds, but wanted to watch her overnight. Her fever is finally down to the 99-range and she has perked up quite a bit.
Riley is not feeling well, either, but they don't have the same symptoms! Scott met my parents in Elgin and did the Riley & Avery exchange. He is back here with us for the night in the hopes that she gets sprung in the morning.
9:05 a.m.
Shelby is undergoing skin patch testing this week. Tuesday we went to Northwestern, she had the patches put on her back, went to Children's and saw her hepatologist & surgeon and had an abdominal ultrasound to check on her shunt. We got a good report that day. Her wbc & ANC still aren't good, but her spleen still felt smaller. Scott was not feeling well that day and went to Immediate Care and tested positive for strep.
Shelby tolerated the skin patches well and when they bothered her, Benadryl did the trick. All 5 of us came in yesterday, the skin patches were removed and we set out for some Chicago fun as you can see in the picture album.
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| Chicago 3.17.18.11 |
Last night Shelby started complaining that her tummy hurt. She did not sleep well and around 6:30 a.m. I felt her and she was warm. Her temp was 100.8 - not bad, but with the only symptom being tummy pain we headed over to Children's ER (we stayed at the Kohl's House last night). Here her temp has spiked to 102 and she is NOT my Shelby. She is crying over everything. The exam, putting on Emla....NOT Shelby. She doesn't even want to play her DS! She is resting right now. Like I said, NOT Shelby. So far, her strep test came back negative and they are waiting to hear from her docs here on what tests to run. :-(
Prayers please...
Tuesday, March 01, 2011
Since the flu...
Shelby did get over the flu just fine. In fact, Riley & Avery seemed to deal with it longer than Shelby. Shelby's white blood cell (wbc) count and ANC (absolute neutrophil count) did not like the flu and decided to take a HUGE nosedive. How did we know, you ask?
Shelby's teacher called right after school last Wednesday and said Shelby just was not herself that day. She was very concerned. Riley had some concerns about Shelby's behavior, too, as they had spent a lot of time together while sick. I took her immediately for labs to get her ammonia level checked and, on that lab order, are a bunch of other tests. So we found out that her ammonia was a bit more elevated and her wbc & ANC were bad, bad, bad. We kept her home then until today when she had labs repeated. Those numbers have improved enough for her to go back to school tomorrow - phew!
Her ammonia is a bit of a mystery. One doctor wanted to put her on a strong medication with not-so-great side effects because when I called asking what to do they interpreted that as "PUT HER ON MEDICATION!" Yeah. That isn't what I was asking. Her liver doctor is now managing this and saying to keep a log of her behavior between now and clinic and we'll talk more about it then. Seems like this will be something Shelby will have to deal with for quite a while and we'll just have to make accommodations. {{{Sigh}}}
March is a super-busy month for doctor's appointments in Chicago. She has 2 this Friday, 3 on the 15th, 1 on the 17th and 2 on the 18th. Can you believe we go there so much and things are relatively "calm" for her? It would be so nice to have a big center that takes care of all this right here in Rockford...I know, I know, a girl can dream, right?
Please pray for our little friends Emerson and Aiden as they are walking such tough roads right now.
(Also, I became an Independent Consultant for thirty-one gifts. I am very excited about this new opportunity & would love the chance to introduce you to the great products we sell. Even if you're out-of-state, we can work something out. Shoot me an e-mail @ pnutsmom76@yahoo.com if you are interested or visit my thirty-one webpage. Thanks!)
Shelby's teacher called right after school last Wednesday and said Shelby just was not herself that day. She was very concerned. Riley had some concerns about Shelby's behavior, too, as they had spent a lot of time together while sick. I took her immediately for labs to get her ammonia level checked and, on that lab order, are a bunch of other tests. So we found out that her ammonia was a bit more elevated and her wbc & ANC were bad, bad, bad. We kept her home then until today when she had labs repeated. Those numbers have improved enough for her to go back to school tomorrow - phew!
Her ammonia is a bit of a mystery. One doctor wanted to put her on a strong medication with not-so-great side effects because when I called asking what to do they interpreted that as "PUT HER ON MEDICATION!" Yeah. That isn't what I was asking. Her liver doctor is now managing this and saying to keep a log of her behavior between now and clinic and we'll talk more about it then. Seems like this will be something Shelby will have to deal with for quite a while and we'll just have to make accommodations. {{{Sigh}}}
March is a super-busy month for doctor's appointments in Chicago. She has 2 this Friday, 3 on the 15th, 1 on the 17th and 2 on the 18th. Can you believe we go there so much and things are relatively "calm" for her? It would be so nice to have a big center that takes care of all this right here in Rockford...I know, I know, a girl can dream, right?
Please pray for our little friends Emerson and Aiden as they are walking such tough roads right now.
(Also, I became an Independent Consultant for thirty-one gifts. I am very excited about this new opportunity & would love the chance to introduce you to the great products we sell. Even if you're out-of-state, we can work something out. Shoot me an e-mail @ pnutsmom76@yahoo.com if you are interested or visit my thirty-one webpage. Thanks!)
Monday, February 21, 2011
The Flu.
Little Miss Avery ran a low-grade temp last Tuesday and was very irritable. Just ask Grammie & Grandma Marian. :-) Wednesday she was perfectly fine; that is, until 2 a.m. when I awoke to her burning up next to me and she had a temp of 101.5. Off to the Pediatrician's in the morning we went. No strep, phew. She was not swabbed for the flu, though. I was told it was just a virus and I brought her home to spoil her, I mean take care of her.
Friday Shelby came home from school and said her throat hurt. OK, I thought, she has strep. I ran an errand and when I got home she had a temp of 102. We took a deep breath and said, "better take her to immediate care." We wanted to get her on antibiotics soon if it was strep. Strep is really going around here in our area.
Nope, not strep. Type B influenza. Since her symptoms just started she was prescribed Tamiflu. We got home and Riley had returned from a school dance...not feeling well. :-( She had a temp, too. ARGH!
The night went OK between the trio of nose blowing, coughing, sneezing and snoring. Saturday brought more fevers and 3 girls feeling yucky. I did call the Pediatrician and was able to get a prescription for Tamiflu for her. It was too late for Avery to start taking it.
Shelby did give me a bit of a scare Saturday as I noticed her left arm, chest and back had petichiae and she had 2 purpura under her right arm. Her nose was also bleeding much more than usual. Since she is on Plavix to help keep her shunt open this was all very concerning. I called the on-call doctor in Chicago and was told if it got any worse she had to get labs done. Thank goodness Sunday morning everything had faded. Phew!
Scott woke up mid-Saturday afternoon (he had been sleeping for work that night) sneezing. Like non-stop. Poor guy. He was the next one for the flu to take down. He had to call in to work. So far, no fever for him, but he did rest a lot yesterday. He went to school today.
So far, so good for me. We are definitely keeping kleenex in business in this house. I keep using hand sanitizer between wiping noses (Avery's, not Scott's).
Right now I'm feeling pretty let down by the flu shots we received in the fall, but I've been told that everyone would be much sicker had we not gotten them. OK. Praying for health around here, BUT happy a certain little 8-almost-9-year-old-girl gets to fight this one out at HOME.
Friday Shelby came home from school and said her throat hurt. OK, I thought, she has strep. I ran an errand and when I got home she had a temp of 102. We took a deep breath and said, "better take her to immediate care." We wanted to get her on antibiotics soon if it was strep. Strep is really going around here in our area.
Nope, not strep. Type B influenza. Since her symptoms just started she was prescribed Tamiflu. We got home and Riley had returned from a school dance...not feeling well. :-( She had a temp, too. ARGH!
The night went OK between the trio of nose blowing, coughing, sneezing and snoring. Saturday brought more fevers and 3 girls feeling yucky. I did call the Pediatrician and was able to get a prescription for Tamiflu for her. It was too late for Avery to start taking it.
Shelby did give me a bit of a scare Saturday as I noticed her left arm, chest and back had petichiae and she had 2 purpura under her right arm. Her nose was also bleeding much more than usual. Since she is on Plavix to help keep her shunt open this was all very concerning. I called the on-call doctor in Chicago and was told if it got any worse she had to get labs done. Thank goodness Sunday morning everything had faded. Phew!
Scott woke up mid-Saturday afternoon (he had been sleeping for work that night) sneezing. Like non-stop. Poor guy. He was the next one for the flu to take down. He had to call in to work. So far, no fever for him, but he did rest a lot yesterday. He went to school today.
So far, so good for me. We are definitely keeping kleenex in business in this house. I keep using hand sanitizer between wiping noses (Avery's, not Scott's).
Right now I'm feeling pretty let down by the flu shots we received in the fall, but I've been told that everyone would be much sicker had we not gotten them. OK. Praying for health around here, BUT happy a certain little 8-almost-9-year-old-girl gets to fight this one out at HOME.
Wednesday, February 02, 2011
Dermatologist Visit
Dr. Paller took a look at her and the pictures I had sent back in late November/early December, asked a bunch of questions and decided it really looks like Shelby has contact dermatitis. But...to what is the million dollar question. Turns out to determine this she needs patch testing done and its very rare to do it on children and there are very few specialists who do it. Dr. Paller called Dr. Martini at Northwestern - her first choice of who she wanted Shelby to go to - and got Shelby in when there's no openings until August. Its a 3-day process. Actually we have to go in for an initial consult, then a few weeks later we go in for Day 1) putting on all the skin patches on her back, Day 2) two days later getting them removed and Day 3) having them read and interpreted. Wow! Amazingly, I have it all scheduled for March despite our crazy busy life already! This is really important to figure out what's causing this on Shelby's face because a) she's a girl and just wants to look good and b) its getting worse even though we use fragrance-free products already. So we shall see...
We got tons of more fragrance-free samples - shampoo, conditioner, soap, lotion - you name it, we got it!
We got tons of more fragrance-free samples - shampoo, conditioner, soap, lotion - you name it, we got it!
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| Samples from the Dermatologist |
I had my follow-up with the dermatologist on Monday. No more spots so no need to do a biopsy. She was amazed they were gone considering how bad they were. If and when they reappear I am to get an appointment right away to have them biopsied.
We are all enjoying be home together for the SNOW DAY! Hope everyone is safe and warm!
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| February |
Thursday, January 20, 2011
:-)
I thought the smile was a good title for this post. I'm feeling a bit better about things and Shelby got a FABULOUS report in clinic Tuesday. The surgeon and her hepatologist are thrilled with her recovery. Her spleen has shrunk about 3 cm in 5 weeks and her wbc and platelets have doubled. Of course, that does not mean they are "normal" yet, but I have faith (and so do the doctors) that they will get there. If all remains well, we go back in 2 months for another ultrasound of her shunt; if all looks good then, we go back in 3 months. The doctors are very optimistic that this is really a GREAT thing for Shelby and now, having been through it, I feel wholeheartedly that it is, too. I am very relieved that she *only* had to recover from surgery and that we are not having to worry about rejection and all the other complications that can come with transplant. Not yet. You're probably not ever "ready" for that until that is your last possible option. I pray that this gives time for Shelby to grow, live and feel "normal" for quite some time before we have to head down that transplant road. I pray that medical advances come along in that time period that allow for safer anti-rejection meds and that organ donation becomes more of the "norm" for people to choose to do so that the waiting list is not so long. I pray for us as a family to look at Shelby's life in a new way; different than we have, especially the past 2 rough years. I pray for Shelby to look at herself as a healthy kid who happens to have liver disease, not as a sick kid.
Our trip to Chicago did not quite go as planned as my Mom was not feeling well Monday morning and was understandably not up for the trip. Scott made several phone calls to find out if it was even possible for him to miss his first day of clinicals for this semester and found out it was o.k. We headed into Chicago driving no more than 35 mph for the 1st hour, but made it in there safely on Monday. We ate supper that night at Shelby's favorite, Bacino's, and stayed at the Kohl's House. Tuesday she had an early appointment with Dr. Jill and then we dashed off to catch the train to catch the bus to the Aquarium. That was a long trip, but we had about an hour to spend at the Aquarium once we got there. We opted to just take a cab back to Children's so our travel time would not be as long. The rest of the day was filled with clinic time and was zoo-like considering all 5 of us were there. One nurse said to Scott "Oh. I didn't know you had so many girls." We headed home late, but made pretty good time and slept HARD that night.
Shelby is back to school full-time and back to gym. Her lower back pain gets less and less each day. The hepatologist was impressed at how well she sat up after lying down to be examined. We were told by the surgeon no high-impact sports (like sledding) until her spleen and platelets improve even more. Turns out that had we consulted the surgeon on if her activity should have been restricted when we asked her hepatologist we would have gotten 2 different answers. The surgeon is in the restrict camp and the hepatologist is not - interesting. Phew - thank goodness nothing ever happened. My girls are adrenaline junkies and play HARD. Shelby can tackle an adult pretty darn good. :-O
Hopefully you followed along my rambling post good enough to get that we are all improving and plan on continuing to. Please pray for Scott as he started nursing classes back up again this week and starts yet another "new" schedule at work.
Take care, everyone, and STAY WARM!
GO PACKERS!!!
Our trip to Chicago did not quite go as planned as my Mom was not feeling well Monday morning and was understandably not up for the trip. Scott made several phone calls to find out if it was even possible for him to miss his first day of clinicals for this semester and found out it was o.k. We headed into Chicago driving no more than 35 mph for the 1st hour, but made it in there safely on Monday. We ate supper that night at Shelby's favorite, Bacino's, and stayed at the Kohl's House. Tuesday she had an early appointment with Dr. Jill and then we dashed off to catch the train to catch the bus to the Aquarium. That was a long trip, but we had about an hour to spend at the Aquarium once we got there. We opted to just take a cab back to Children's so our travel time would not be as long. The rest of the day was filled with clinic time and was zoo-like considering all 5 of us were there. One nurse said to Scott "Oh. I didn't know you had so many girls." We headed home late, but made pretty good time and slept HARD that night.
Shelby is back to school full-time and back to gym. Her lower back pain gets less and less each day. The hepatologist was impressed at how well she sat up after lying down to be examined. We were told by the surgeon no high-impact sports (like sledding) until her spleen and platelets improve even more. Turns out that had we consulted the surgeon on if her activity should have been restricted when we asked her hepatologist we would have gotten 2 different answers. The surgeon is in the restrict camp and the hepatologist is not - interesting. Phew - thank goodness nothing ever happened. My girls are adrenaline junkies and play HARD. Shelby can tackle an adult pretty darn good. :-O
Hopefully you followed along my rambling post good enough to get that we are all improving and plan on continuing to. Please pray for Scott as he started nursing classes back up again this week and starts yet another "new" schedule at work.
Take care, everyone, and STAY WARM!
GO PACKERS!!!
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| Chicago January 2011 |
Sunday, January 16, 2011
Still hanging in there
Life is moving at its busy pace. Its about to get busier, too, as Scott begins his spring semester this week, starts a new work schedule and (hopefully) Shelby goes back to school full-time.
Tomorrow my Mom, the girls and I will head into Chicago for a day of fun at the Adler Planetarium (free w/Discovery Center membership - yay!) and then the Shedd Aquarium (FREE day there! - bonus). We will spend the night at the Kohl's House and Shelby will have a full day of appointments on Tuesday. This will be the first ultrasound of her abdomen to make sure her shunt is still open (please pray specifically that it is) and to see her surgeon. She will also meet with her beloved Dr. Jill and her hepatologist, Dr. Alonso. Busy, busy, busy! I have myself really pumped up that her labs are going to be so awesome so they better be! Scott can't make the trip with us due to work and school so that's why I've recruited my (poor) Mom! I told her to wear her walking shoes and take her vitamins! :-)
I'll update again after our trip....
Tomorrow my Mom, the girls and I will head into Chicago for a day of fun at the Adler Planetarium (free w/Discovery Center membership - yay!) and then the Shedd Aquarium (FREE day there! - bonus). We will spend the night at the Kohl's House and Shelby will have a full day of appointments on Tuesday. This will be the first ultrasound of her abdomen to make sure her shunt is still open (please pray specifically that it is) and to see her surgeon. She will also meet with her beloved Dr. Jill and her hepatologist, Dr. Alonso. Busy, busy, busy! I have myself really pumped up that her labs are going to be so awesome so they better be! Scott can't make the trip with us due to work and school so that's why I've recruited my (poor) Mom! I told her to wear her walking shoes and take her vitamins! :-)
I'll update again after our trip....
Tuesday, January 04, 2011
Elephant in the Room
I have not had trouble sharing on here before. That is, sharing in depth Shelby's medical situation. I have touched the surface of talking of how it affects our family...the surface. Tonight I am going to do my best for me and for those out there reading this blog who may be facing this same path. Finding others going through or who had gone through what we were facing when Shelby was a newborn is what saved me. Its what said to me "others have survived this, we can, too. Biliary Atresia is NOT a death sentence. Transplant is more common than you think." Through talking and sharing with others on C.L.A.S.S. kids and now on Liver Families I have persevered, and, I believe for the most part, thrived.
Shelby's recovery from her shunt surgery is going amazingly well. Today, we had some concerns about this "lump" that appeared today. It was not there last night. It is tender to the touch and red (although that does not show up in the pics well) and feels hard when you touch it. I can push everywhere else around her scar with no problems and it is nice and soft; not at this area. MANY phones calls were made and I finally heard back this evening from one of Dr. Superina's associates. He said if she has no fever then just watch it. Great...waiting for that shoe to drop. Honestly, I'm concerned that its a hernia. When she coughs, it bulges out more. Since this is something involving her surgery, we would have to go to Chicago to have it looked at. Right now, Scott and I have determined that it can wait, but it is still not sitting right with me.
Back to my "sharing." Despite Shelby doing so well and her recovery being so amazing, I am not doing amazing. I am still a bit shell-shocked from all this. I already have an appointment set up with my counselor for this week to talk about this, but if I don't share it on here, what happens to that other parent experiencing something similar who is afraid to talk to someone and share their feelings? I know how much I have been helped by others, so now its my turn. The PICU was a scary place. I really believe that the weeks leading up to Shelby's surgery and all that worry about it were less traumatic for me than spending 6 days in the ICU. Post-op Day #2 when I had my "breakdown" was to put it mildly. I cried so hard that I felt physically exhausted; like I cried it out from my toes all the way up my body. Buckets of tears fell, and, get this, my child was doing pretty "good" for an ICU patient. Seeing her improve after her blood transfusion and being put on the high-flow oxygen was helpful...until Friday night. I was SO happy to have all 3 of my girls together and my Mom there, but there was a death in the ICU that evening. A death of a child. A grieving family in the halls. White curtains set up for privacy. An entire hallway closed off. Gut-wrenching. It is sitting with me and not moving. I know that someday we have to go back to the ICU. She will need to after her transplant and will be much sicker after that surgery than she was after this one. I am trying to not dwell on that future and enjoy how well she is doing, but part of me just won't let me. Posttraumatic stress disorder is so common in so many people for so many reasons. It is frustrating and scary to go through it knowing that you should not be so worried. Sleep SUCKS for me since Shelby's surgery. Many nights its 3 a.m. before my eyes will even attempt to close and then I am haunted in my sleep. Horrible sleep. Restless sleep. I pray to God for peace; I plead, I beg. But this is a part of the physical side of me. One that will take time to work through and most likely an increase in some of my meds. Sigh...I will survive and then I will thrive again, but its going to take some time.
Shelby's recovery from her shunt surgery is going amazingly well. Today, we had some concerns about this "lump" that appeared today. It was not there last night. It is tender to the touch and red (although that does not show up in the pics well) and feels hard when you touch it. I can push everywhere else around her scar with no problems and it is nice and soft; not at this area. MANY phones calls were made and I finally heard back this evening from one of Dr. Superina's associates. He said if she has no fever then just watch it. Great...waiting for that shoe to drop. Honestly, I'm concerned that its a hernia. When she coughs, it bulges out more. Since this is something involving her surgery, we would have to go to Chicago to have it looked at. Right now, Scott and I have determined that it can wait, but it is still not sitting right with me.
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| The redness does not quite show up and its ABOVE her incision, not on it. |
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| Please excuse my poor attempt at using "paint" to mark the area I'm talking about! |
Sunday, January 02, 2011
Lookin' good
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| Upper left - right before surgery, Upper left - day after surgery, Lower left - yesterday, Lower right - today |
Thursday, December 30, 2010
Day #17 Post-Op
I am so giddy. Yup. Very excited. Encouraged.
Shelby had labs run today. Her white blood cell count is 3.6!!!!! "Normal" is 4.0-12.0. We used to be happy if hers was around 2. 3.6 is a BIG deal! Also, her platelets are 102,000!!!!! "Normal" for that is 130-400. Hers usually ran in the 50,000-range. Those are amazing numbers! It looks like the shunt is already working! Thank You God and Dr. Superina!
Shelby is doing quite well. Amazingly well. Last night she had a friend here for a sleep over - two weeks after major abdominal surgery. I am so thrilled at how well she is recovering! She does still tire easily. Shopping at Wal-Mart today was too much for her so we put her in a wheel chair. She is having back pain from compensating for her abdominal discomfort. Her steri-strips are curling up and coming off nicely and it looks as if that incision is healing up just perfect.
Thank you, everyone, for continuing to check-up on her and pray for her. Happy New Year!
Shelby had labs run today. Her white blood cell count is 3.6!!!!! "Normal" is 4.0-12.0. We used to be happy if hers was around 2. 3.6 is a BIG deal! Also, her platelets are 102,000!!!!! "Normal" for that is 130-400. Hers usually ran in the 50,000-range. Those are amazing numbers! It looks like the shunt is already working! Thank You God and Dr. Superina!
Shelby is doing quite well. Amazingly well. Last night she had a friend here for a sleep over - two weeks after major abdominal surgery. I am so thrilled at how well she is recovering! She does still tire easily. Shopping at Wal-Mart today was too much for her so we put her in a wheel chair. She is having back pain from compensating for her abdominal discomfort. Her steri-strips are curling up and coming off nicely and it looks as if that incision is healing up just perfect.
Thank you, everyone, for continuing to check-up on her and pray for her. Happy New Year!
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| Christmas 2010 |
Friday, December 24, 2010
Wednesday, December 22, 2010
Fun AT HOME :-)
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| click on this picture to see entire album |
Thinking back to this time last week gives me chills. She was so sick on this day. I asked her if she remembered that and she said "Yes." I wish I could erase that from her memory; since I can't, I just pray that her memory of it is not as bad of a memory as mine is.
She continues to amaze us with her recovery. Unreal. All last week seems like a bad dream...with a GREAT ending.
Sunday, December 19, 2010
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