Neuro/Pulmonary Update

Neurosurgery

We called Faiths Neurosurgeon to request an interpretation of Faith's MRI. The conversation was brief and all good news. The MRI revieled no new developments or concerns PTL! Infact, the only change they saw from the scans was that the pocket of fluid in the middle of her spine has decreased in width and increased in length. This is not a concern as long as we have not seen any loss in motor skills (which we have not). Neurosurgery said that everything looked great and they would like to see her in clinic in 6 months. They will continue to watch her as she grows.

Pulmonology

Last week we had a pulminology appointment to see if they would adjust Faith's bi-pap settings. Faith sleeps with a bi-pap at night to help her maintain good oxygen and CO2 levels while she sleeps, she has some difficulty with this. While she seemed to do well on it when we first came home, she seems to have grown out of the settings, her sleep has become wrestless and her oxygen levels keep dipping.

Durring Faith's appointment, the Pulmonologist informed us that bi-paps are not designed for infants. And in faith's case the settings are not precise enough for Faiths needs. He told us that Faith should be on a ventilator at night. Ashley and I didn't like hearing this. From the beginning we have been praying that Faith dosen't have to be on a "life support" machine. But the doctor went on to explain that in Faith's case the ventilators function would not be much diffrent than the bi-pap. It would just help her sleep more comfortably and safer. Hearing this made the idea much easier for Ashley and I to swallow.

In order to be trained to use the new piece of equipment Faith will have to be admitted to the ICU for up to two days. We are still waiting to hear back on when this appointment will be scheduled.

Fun Stuff

Tonight we attended the annual church event at Gary's Berries. We had a great time. ALL OF US! I took Faith down the slide twice. This is something I did with both of the other kids in the years past and wanted to do with Faith too. I was tenative at first, but after some coaxing from my wife and a few friends, I decided Faith had it in her. She loved it! And it was good for me too.

Enjoy

Waiting...

Still waiting on results from MRI.  Just waiting on Doc to call us back....

More to Come...

The Doc came and got us out of the waiting room after Faith had been back in XRay fo about 1hr 30mins. I honestly thought something was wrng because they told us 2 hours.  BUT PTL everything went so well they finished early!! Then we went back to the recovery room and she woke up on her own and so soon she was perfect! They told us she could just go home! No spending the night!!! We have no results we will call Dr.Hornig on Monday.

Update

Faith is out of her MRI and doing well. The nurse said everything went great and ran very smoothly. Hopefully we can get out of here soon, thanks for your prayers.

MRI

It's now 9:12am. We made it to CMH this morning at 7:00am. We stayed the night at the Ronald McDonald House last night, it's about a block from hospital. They took Faith back at just about 9am. They say it will take about 2 hours for all the scans they are wanting. Then the plan is to go to a room on the floor and stay until we talk with a doc and if Faith is acting normal then we will be able to go home. Praying all goes well and we sleep in our own beds tonight and not in a chair or the hospital room couch. :) Thanks so much for all the prayers.

The Plan

The swallow study didn't happen on Friday, we rescheduled it for October 27th. The OT we see in clinic at CMH said Faith is doing really well but wants to wait one more month. IF Faith was to fail this test we would have to wait 12 months before retaking the test, due to the amount of radiation she will be receiving. We want to take no risks and just pray she will pass this test next month! We have been giving her some baby foods and thickened water to start with. We must be careful that she is not aspirating any fluid that is going into for mouth.

This Friday Faith will be having a follow-up MRI (Sept. 16). The last MRI she had showed fluid up and down the whole spine. If there was a collection of fluid where the spine wouldn't be able to handle it then she could lose mobility in her limbs. PRAISE TO THE LORD, she is still moving all around! Those arms and legs go everywhere! :) She is rolling from side to side and sitting up some on her own, not to long but she is sitting. Faith's appointment is at 7am. CMH called and said to pack a bag just in case we would need to stay the night there on Friday night. Faith will have to be put under anesthesia to have the MRI done. The hospital will have to monitor her and make sure she is acting normal before sending her home. Pray we won't have to stay the night.