Sarah and Patty returned home early Sunday afternoon to much rejoicing as you may expect. The list of meds for Sarah has increased at least for the short term. Since she is on the steroid to restore things to normal, they also have her on rinatidine to help her tummy deal with that. Her tacrolimus has been increased to 1mg at night and her standard .5mg in the morning. They also prescribed a zinc supplement to help with her scalp issues. Thankfully, it seems that problem has already improved and we are grateful for that.
On Tuesday, Sarah and Patty must return to Children's for clinic and labs. I imagine we will maintain the weekly lab routine for now as well. You just never know what to expect but that is one of the things you can depend on with life: the unexpected.
We couldn't maintain a grain of sanity if it weren't for the continued prayers and encouragement we receive from our dear family and friends, and without the grace of God. Thank you for continuing to follow us on this rollercoaster journey.
Sheriff Sarah
Sunday, February 21, 2010
Saturday, February 20, 2010
It's All in the Numbers (part 2) and our love for Children's
To better aid in seeing what "good" vs "bad" numbers look like, here are Sarah's lab results since Wednesday, night when Patty brought her in for her weekly blood work:
AST - 662 (2/17), 123 (yesterday), 65 (today)
ALT - 926, 543, 353
GGT - 373, 290, 233
The numbers from Wed. night were the highest we have seen since PRE-transplant so it was apparent something was amiss. Fortunately, the transplant staff was all over it and they started the steroids before biopsy confirmation of rejection so we wouldn't have to spend extra time here. Dr. Reyes (see Feb 4 post) had a forlorn look when he visited Patty and Sarah on Thursday. He felt bad because he had lowered the tacrolimus intake which was likely responsible for our return to Children's. It's this kind of concern and care - and the fact the Giraffe floor nurses just love Sarah! - that make us so happy and blessed to live so close to Seattle Children's Hospital. We know there are those in the adjoining neighborhood who opposed their expansion, but for us we could never fathom our lives without these people, some of whom have become dear friends.
AST - 662 (2/17), 123 (yesterday), 65 (today)
ALT - 926, 543, 353
GGT - 373, 290, 233
The numbers from Wed. night were the highest we have seen since PRE-transplant so it was apparent something was amiss. Fortunately, the transplant staff was all over it and they started the steroids before biopsy confirmation of rejection so we wouldn't have to spend extra time here. Dr. Reyes (see Feb 4 post) had a forlorn look when he visited Patty and Sarah on Thursday. He felt bad because he had lowered the tacrolimus intake which was likely responsible for our return to Children's. It's this kind of concern and care - and the fact the Giraffe floor nurses just love Sarah! - that make us so happy and blessed to live so close to Seattle Children's Hospital. We know there are those in the adjoining neighborhood who opposed their expansion, but for us we could never fathom our lives without these people, some of whom have become dear friends.
It's All in the Numbers: Lab Results
So my baby girl had a wonderfully blissful night of sleep before awaking shortly before 6am. She ate a waffle breakfast and then proceeded to receive her morning meds. The blood work followed and I have received those results back. I have included some links so you can see what each important lab means in terms of her liver. The three "majors" are AST, ALT and GGT.
On the bright side, all of her labs seem to be retuning to normal thanks to the steroids, which she received at 8:45 this morning. She is still at a high dosage level so they send it through an IV for one hour. Once we go home, we will be substituting a smaller dosage via straight liquid as we do for all the other meds with the exception of the tacrolimus which comes in capsule form.
As I mentioned, here are the links for the major liver labs: AST , ALT and GGT.
So far, we are on target to leave tomorrow. There was some concern on my part about the color of her stool but the on duty doctor said he has seen that in some other patients on that type of steroid.
On the bright side, all of her labs seem to be retuning to normal thanks to the steroids, which she received at 8:45 this morning. She is still at a high dosage level so they send it through an IV for one hour. Once we go home, we will be substituting a smaller dosage via straight liquid as we do for all the other meds with the exception of the tacrolimus which comes in capsule form.
As I mentioned, here are the links for the major liver labs: AST , ALT and GGT.
So far, we are on target to leave tomorrow. There was some concern on my part about the color of her stool but the on duty doctor said he has seen that in some other patients on that type of steroid.
Friday, February 19, 2010
Mild Rejection Confirmed
I'm now on duty at Children's to let Patty go home with the kids for the next 24 hrs. We shared some Garlic Jim's pizza there and they headed home. Praying for a great night and wonderful day for them tomorrow.
While we haven't met with the transplant team regarding the liver biopsy it was confirmed about an hour ago that Sarah experienced a mild acute rejection due to lowering her tacrolimus (anti-rejection) medication. She has already had some of the steroids and that will continue - for now, we don't know the duration - along with some other meds to counterbalance that. So, we have a few more meds we have to give daily once we are home but in the long run, it should all work out fine.
The docs have also increased her tacrolimus to the original dosage so we shouldn't see further problems, at least for the time being. One positive side effect from the steroids is that Sarah's cradle cap and itchy scalp seems to be improving. Praying that will continue.
We should know by the end of the day Saturday, based on labs, if we will be coming home Sunday or not. Keep praying Sunday is the day.
While we haven't met with the transplant team regarding the liver biopsy it was confirmed about an hour ago that Sarah experienced a mild acute rejection due to lowering her tacrolimus (anti-rejection) medication. She has already had some of the steroids and that will continue - for now, we don't know the duration - along with some other meds to counterbalance that. So, we have a few more meds we have to give daily once we are home but in the long run, it should all work out fine.
The docs have also increased her tacrolimus to the original dosage so we shouldn't see further problems, at least for the time being. One positive side effect from the steroids is that Sarah's cradle cap and itchy scalp seems to be improving. Praying that will continue.
We should know by the end of the day Saturday, based on labs, if we will be coming home Sunday or not. Keep praying Sunday is the day.
Love those Eggs!
This morning we are waiting for the latest lab results. Sarah was started on the steroid IV medicine at midnight and we still won't know the official biopsy results until late today or this evening. In the mean time she is motoring around the room and hospital with Patty.
The funny part is that this morning she actually ate scrambled eggs for breakfast. None of our other kids (nor Patty) eat eggs. Apparently the steroids increase the appetite (hope they have a LARGE supply of food on hand!) so Sarah will likely be eating very often the next few days.
I will be heading down after I pick up Arianna and Caleb from school to swap out hospital time with Patty. More updates to follow as we hear any news. Thanks for your continued prayers and support.
Thursday, February 18, 2010
Liver Biopsy
Sarah just went in for the liver biopsy. It only takes about twenty minutes but she must stay in recovery for one hour post-op. Its a very simple and non-invasive procedure. Fortunately, she had been sleeping for the past hour so hopefully she will be okay.
We won't know the results for at least 24 hours. Dr. Horslin said we will start Sarah on the steroids to get a head start if it is indeed acute rejection. According to him and the ultrasound tech, it is highly likely that is what we are dealing with.
I will continue to send updates and post to Facebook as well when the news warrants.
Thanks,
Kirk
We won't know the results for at least 24 hours. Dr. Horslin said we will start Sarah on the steroids to get a head start if it is indeed acute rejection. According to him and the ultrasound tech, it is highly likely that is what we are dealing with.
I will continue to send updates and post to Facebook as well when the news warrants.
Thanks,
Kirk
As Sarah's Liver (and meds) Turns
Good morning,
We just received a call from Marsha in transplant clinic that Sarah's labs from last night showed high numbers in both the AST and ALT. I won't bore you with the medical names and definitions but those are two of the important liver labs Children's follows at each visit. It may be due to the fact that we reduced her tacrolimus at the last clinic and we are seeing the effects. If you review our last blog entry regarding clinic, you will see what I am talking about.
Ok, just got off the phone with Marsha myself and we have to go TODAY for an ultrasound and biopsy. Please be praying this isn't an acute rejection and that we won't have to stay more than one night (the minimum required). Our family is still struggling getting things back to normal and this won't do the other kids any good.
Kirk
Thursday, February 4, 2010
A Little Bit about "Over" Immuno suppression
Today I had the good fortune to accompany Patty to Sarah's monthly clinic at Children's Hospital. Sarah's liver labs are looking extraordinary so everything appears good on that front. I got to meet the resident comedian, Dr. Reyes, who also happens to be the director of transplant services. He is the man who searches for donors and oversees surgeries at UW and Children's. He was a wealth of information and in our consultation with him today, a few things were noted.
First, Sarah still has very bad cradle cap. It gets so bad she picks at it and her head will bleed from the scratching. She also pulls her hair because of the irritation. This has come and gone but bugs her a lot. Dr. Reyes says that the tacrolimus can cause hair to fall out so that could be one of the reasons for her discomfort. She also gets dry skin around her mouth, no doubt somewhat because of her binky.
Second, the only lab numbers that Dr. Reyes is concerned about all look good. There is one that could indicate bile problems, but that is within the normal range.
Third, because of Sarah's skin issues and due to past experience, Dr. Reyes has suggested lowering the tacrolimus (the anti-rejection drug) to two doses per day three days a week and one dose per day the other four days. This is due to the possibility of an over immunosupression, even at the small dosage Sarah is taking. This type of hypersensitive immune system could be the reason for the scalp and skin issues.
It seems we have entered the stage (or have we really ever left?) of "balancing" things in Sarah's medical regimen. According to Dr. Reyes, about 70% of transplant recipients experience this drug toxicity, or hypersensitive immunosuppression. This can lead to future issues and that is why they pursue such a proactive stance. He admitted that they are right 70/30 in these cases. The 30% they are wrong can lead to liver rejection but he made the point those patients have been treated and returned to stable conditions. Not one has been lost in any way. That was comforting. We have realized from the start of this adventure that our lives (and Sarah's) would never really be "normal" again. A transplanted organ tends to do that.
We just roll with the punches and move on. This was good information to learn and will be helpful moving forward. As a logical being, I like to have all the facts and possible scenarios in front of me so I have an inkling of what to expect. There are always exceptions and surprises but to have some type of clue what is happening is important to me. Then again, maybe that is something God has to work on within me and maybe its because it is my daughter we are talking about.
We aren't concerned because Sarah is doing so well, the staff at Children's is unbelievable and she is in the care of Jesus. Your continued prayers are appreciated. Our lives would be incomplete without your involvement.
God bless,
Kirk
First, Sarah still has very bad cradle cap. It gets so bad she picks at it and her head will bleed from the scratching. She also pulls her hair because of the irritation. This has come and gone but bugs her a lot. Dr. Reyes says that the tacrolimus can cause hair to fall out so that could be one of the reasons for her discomfort. She also gets dry skin around her mouth, no doubt somewhat because of her binky.
Second, the only lab numbers that Dr. Reyes is concerned about all look good. There is one that could indicate bile problems, but that is within the normal range.
Third, because of Sarah's skin issues and due to past experience, Dr. Reyes has suggested lowering the tacrolimus (the anti-rejection drug) to two doses per day three days a week and one dose per day the other four days. This is due to the possibility of an over immunosupression, even at the small dosage Sarah is taking. This type of hypersensitive immune system could be the reason for the scalp and skin issues.
It seems we have entered the stage (or have we really ever left?) of "balancing" things in Sarah's medical regimen. According to Dr. Reyes, about 70% of transplant recipients experience this drug toxicity, or hypersensitive immunosuppression. This can lead to future issues and that is why they pursue such a proactive stance. He admitted that they are right 70/30 in these cases. The 30% they are wrong can lead to liver rejection but he made the point those patients have been treated and returned to stable conditions. Not one has been lost in any way. That was comforting. We have realized from the start of this adventure that our lives (and Sarah's) would never really be "normal" again. A transplanted organ tends to do that.
We just roll with the punches and move on. This was good information to learn and will be helpful moving forward. As a logical being, I like to have all the facts and possible scenarios in front of me so I have an inkling of what to expect. There are always exceptions and surprises but to have some type of clue what is happening is important to me. Then again, maybe that is something God has to work on within me and maybe its because it is my daughter we are talking about.
We aren't concerned because Sarah is doing so well, the staff at Children's is unbelievable and she is in the care of Jesus. Your continued prayers are appreciated. Our lives would be incomplete without your involvement.
God bless,
Kirk
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