Worried on Wednesday

Well we have more news today -

After looking at all the circumstances the Dr's have come to some conclusions..

Let's look at the facts....

• -Madeline came in last week with RSV
• -Madeline's had high blood pressure's and heart rates consistenly over the last week
• -she had puffiness(swelling)
• -Decereased urine output

** at first it seemed it was due to her illness but even after her dehydration and illness subsided she continued to have:

• High heart rates
• High Blood Pressure
• Urine Output decreased
• Createnine levels increasing steadily (at least 1 point) per day for last week
• Swelling

And now the Doctors feel fairly certain that this is due to ..Decline in kidney function.. all of her symptoms are signs of this..

Mom had a long talk with her primary nephrologist who says.. if Madeline continues to go at this rate of decline.. there may not be enough time for both mom and madeline to complete the transplant evaluation before action must be taken.  Madeline still needs:

• Tissue Type Testing
• Social Work Consult
• Finish Immunizations
• Infectious Disease Consult
• another ultrasound..

and a few other tests/steps I don't remember right now..

Mom has to do:

• Tissue type testing
• Bone Scan
• Surgeon Consult
• Financial Aid consult
• Blood Tests

etc etc.. I can't remember


The tissue type test requires both of us to get 8 vials of blood drawn -m-th before 11 am.. They are not sure if her blood count is high enough for her to handle that right now because she has had so many other tests recetly- so most likely we will wait until monday to do that..

They are going to do as much of her remaining evaluation as they can while she is here but yet they are not sure if this will all be completed before further action needs to be taken to make sure she is ok...

So therefore we have to consider dialysis..which is what we have been trying to avoid.. there is no magic number or method for determining when and if she needs dialysis- but the dr told me they are going to change around some of her meds and formula and see if that affects anything..if the changes are made and she continues to decline (and at this rate) then they will prepare her for dialysis..

However..

there are 2 types of dialysis; peritineal (through her belly) and hemodialysis (through arm or neck vein)..the preferred method for madeline is peritineal because we can be trained to administer it and bring the machine home and do it for 10-12 hrs a day..whereas Hemodialysis cannot be done at home and will require us coming in to the hospital multiple days a week for several hours.. The problem with Peritineal dialysis is that a surgery has to be done because they need to insert a cathater ..and she has to rest for two weeks before the dialysis can start. If she declines rapidy before all this can be accomplished we will be forced to do hemodialysis.. we are trying to avoid this at all costs..

it is very disheartening to think that we might have to go through all these new changes so close to getting her a kidney and to see her decline so rapidly but we must do what we must do to take care of our precious girl.

she will be here throughout the weekend and monday for monitoring and to finish up testing- as well we will see if she continues to decline..the best case scenario is that she does not and we are able to finish the evaluation for both mom and baby -and get her the kidney but that doesn't seem very likely at the moment.. we also have to consider that there is a chance mom may not be a match then we have to look at other options. another live donor or a dead donor...Something we also recently learned is that assuming I give her the kidney ..We will not be able to have more children for 2 yrs .. the transplant coordinator told me that I have to wait two years before getting pregnant after removal of kidney.. Obviously the most important thing is that Madeline gets what she needs.. and we definitely have enough going on at the moment- but we had hoped to eventually get things settled down and be able to hopefully bring Madeline a sibling at an age where they still want to  play together.. in the realm of things this is not important.. but it was a bit dissapointing to hear..

 Please pray that Madeline would maintain until we can finish evaluations and that mom is a match.. Please also pray for strength for us. We are trusting God with this situation and he can make the most overwhelming of situations manageable for all of us. We are lucky to have her and all the love and support. Thanks to everyone who continues to hold our family in their hearts and prayers.


Lots of love