Wednesday, January 4, 2012

Addie update and Max's big tests

If you've been reading for a while, you have probably worked out that there are a lot of highs and lows in our journey and sometimes really good news that we celebrate ends up getting watered down in the weeks that follow. It makes me hesitant to share it when we do get good news but I usually do anyway because it is so exciting and such a blessing at the time! Anyway, our journey to transplant has been one of those times. On December 21, the day before the babies birthday, they started rushing all of my testing with this bold plan that transplant January 3rd. The surgeons had it on their schedule and they were like telling me what time to arrive on the 2nd! I didn't share that date with anyone aside from my best friends and family becasue I didn't really believe it. Dr S was out of town and I was pretty sure she thought it was too soon. And yet, it did stir up hope and excitement in me as I rushed through my testing and found I was all ready!

Last Wednesday, they officially cancelled the 3rd which again, came as no surprise to me but some disappointment. However, it was cancelled because Addie's doctors thought it was too soon following her previous surgeries and hospitalization and I totally respected that. Unfortunately, it seems to have now just gotten indefinitely delayed. They have decided to do some more testing on me to look at a couple of the tests that were ambiguous in their results which will take a while to get done and they want these results back and more clear before I donate. And there's now a conflict with anaesthesia and what 'protocol' the surgeon wants to use versus what they want to use on Addie with her being little. The long and short of it is that somehow we went from transplant Jan 3 to transplant not being on anyone's calendar.

We are discouraged as we are ready to move forward. We are also trusting both Dr S and God that Addie must just not be ready. We do not want to risk Addie losing my kidney early or any dangers to her so I know in our heads it is better to wait and do it right than rush to do it sooner. I say in my head because my heart still needs some working on. I have been very attached to the idea of transplant for Addie and I'm having to really work on letting that go for a while and being ok to be where we are. After all, she will transplant. There is no doubt about that. And although I know when I want it to happen, I certainly don't know when it is best to happen. So please keep praying for wisdom for the doctors and that it will happen at God's chosen perfect time for Addie. She is in the meantime doing ok on hemo. It has had some ups and downs as we were warned and there are days it's hard on her and days it's a lot better than being attached to a machine 17 hours like her brother. She's happy though and home and doing really well crawling now all over the floor and we are just going to have to focus on how happy and good she is now and stop looking with such anticipation to the next step.

So that's what is happening for Miss Addie. Meanwhile, Max is having a big week. Max has been delightfully easy for his Daddy and I during Addie's drama and been full of smiles and cuddles and is growing leaps and bounds. He's doing really well on his home machine. Yesterday he saw his pulmonogist who looks at his airway and she's going to be making some changes to his meds to reduce reflux and vomiting but generally seemed ok with how he's doing with his breathing. The big deal for Max comes on Friday. He needs to have two brain tests- an EEG which measures brain wave activity and an MRI which looks more at brain structure. Unfortunately it is crucial for the MRI that he not move so they are going to put him under general anaethesia for it. Although we've done the anaethesia thing enough now that it's lost a lot of its scariness, it's still a big deal every time and Max hasn't been under since June so it's a big deal to have to go through that again. So please keep sweet Max in your prayers on Friday for a smooth anaethesia experience.

And then please be praying for the results. He has had two EEGs and MRIs in February and in early March when he was about 2 months old due to some muscle stiffness and breathing abnormalities. The later set were said to be normal and neurology stopped following him. He certainly didn't have any brain bleeds or significant problems on them. Dr S suggested we take him back to neurology a few months ago as his motor concerns have become more obvious.

Because the babies lived in the hospital and have serious medical issues we expect them to have some developmental delays. And while Max is improving and getting stronger, he is not able to hold his head up or grab onto objects and at one year old, this is troubling and makes it more likely that there is some sort of other medical concern there and that is is not just a 'hospital delay'. His primary issue seems to be with his neck and his arms. He moves his legs enthusiastically and his core is actually strong enough that if he could hold his head straight, then he'd be able to sit up. But his head is still floppy and he his ability to use his arms to grab for things is limited.

We love Max so much and think he's the best baby and he has the most perfect disposition but his lack of motor skills are sad for Max as it means he isn't able to play with toys the way his sister is. Watching the difference between Addie and Max is difficult for me as I rejoice as she develops new skills and is growing into this little toddler and at same time am heavy hearted for Max and these milestones that he is not reaching. The widening gap between them also seems to suggest there is more to Max's delays than hospitilization or dialysis. And so we need to start looking again at his brain and seeing if we can't find an explanation for what is going on. When he met with the neurologist last month, the neurologist reviewed his previous MRI and felt that while there were no big obvious problems, there were many subtle abnormalities on the MRI. And so he wants another one now that he's bigger and he wants a completely sedated one so movement can't invalidate any results.

I'm praying that the MRI clearly shows us what is going on in Max's brain. If there are no neurological problems then I will rejoice in a completely normal MRI and we will keep working with physical therapy and get his muscles stronger with use. However, if there is a neurological basis to Max's motor problems, I do pray we get some answers. We do know that when it comes to the brain, answers are never concrete. A doctor will not be able to tell us when Max will be able to hold his head up or when he'll be able to walk or if we'll see any of these problems manifest themselves into adulthood. He may be able to give us some predictions and some ideas but with a lot of neurological problems, the progneses are widely varying and the ability to know what lies ahead is impossible. But a diagnosis and some direction is nonetheless, an important step forward. It will also be important for us that we accept what we find out and find peace, hope and understanding in what we learn. We really appreciate your prayers.

No comments: