Now that Griffin is all settled in at the Mayo Clinic, things are going well. The NICU here does not have private rooms, which means that each pod has 4-8 babies in them. After you add in all the nurses, parents, visitors, doctors, etc., the pods get really full. Im sure you can imagine the noise from all that commotion. Griffin is well acclimated to life in a private room and was having a hard time getting used to all the noise and people so we asked for a change. Today we got him moved to a previously empty room. They brought a few other babies as well to the new room, but its bigger and much quieter. Overall we are very happy. The nurses and doctors and doing a great job getting to know Griffin and how best to handle him. We are bonding well with our Nurse. After the move today we put up a some of his artwork on the walls around him. We are so thankful for the Blank Childrens nurses who made all the need things to hang up. Rochester is a pretty cool city. It is expensive though. We have to pay to park everyday at the hospital. Plus no more free meals for Amber like she got at Blank. However the Doctors and nurses, as previously mentioned, are great. On Friday Griffin is going to have a few procedures. First, is a brain MRI. They want to see if he actually had meningitis, also they are looking for signs of a disease very similar to ARPKD that starts in the brain. Second, is a lumbar puncture. With this test they are going to see if he still has meningitis. If the culture comes back positive, they will continue with his antibiotic treatment longer. Third, is in conjunction of the other two. He has to be re-intubated for both of these procedures. He also has to be moderately sedated. This will add more fluid to his body, which is something we have been trying to combat since 2/14/14. Hopefully he is able to pee it all off quickly and wean off his vent even further than he currently is. Continue to pray for his Kidneys to shrink and for hai cysts to vanish. Pray for more room in his little belly so he can continue to breathe and eat. Pray for his lungs to grow and become more able. Also pray for his liver, that his ARPKD will not also effect his liver as it commonly does. Question to all our followers: The geneticists are wanting to test Amber and Matt for being carriers of ARPKD. The test they got from Griffins test should likely but inconclusive. They would like to solidify their diagnoses with our tests in order to completely rule out other possibilities. Our concern is that if we get tested and show positive for being carriers, which is highly likely, will it effect our ability to have life insurance or even to have reasonable rates. This is our concern, they are wanting an answer on Friday. Friends, what is your advise?
Posted on: Wed, 05 Mar 2014 22:29:57 +0000
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