On Monday we woke early and left to find our way to the Duke University Childrens hospital where we were supposed to check in at 8:30 a.m. Once we got there they took her to an exam room where they proceeded to check her vitals, weigh her, measure her, and check her blood pressure. The nurse then left and we remained in the room while we awaited the doctors visit. It was while we were waiting that we noticed Elisabeth's foot twitching. It continued for a small while and soon both feet were twitching. At first we just wrote it off as a muscle spasm, but after a few minutes the 'twitch' had moved up her body and she was convulsing steadily from her shoulders down to her feet. Then we began to worry. We hurried out to the hall and found a nurse who then found the nurse practitioner. After examining Elisabeth it was determined that she was in fact having a seizure. Luckily it calmed on its own.....but I was still very upset. I did decide however that if there is a place to be when your child starts having a seizure it is a hospital :) The nurse contacted the doctor who ordered a CT scan and an EEG. The CT scan was first. Elisabeth remained very still and calm during it. The results determined several things....first that her shunt seemed to be in the correct place.....so we could presume that the seizure was not from shunt malfunction. It did give us some new news however. They discovered that Elisabeth was missing parts of her brain. There is absence of the septum pellucidum, meaning that it isn't there all together. There is also a partial absence of the corpus callosal which is the part of the brain that connects the left side of the brain to the right. What this means for Elisabeth....that is still to be deteremined...we'll keep you all posted.
Elisabeth then went on to the EEG. She was a trooper! It took forever to set up for the test. They carefully had to measure out precise points all over her head and mark them with a wax pencil. They then had to go through and clean each spot with a special sollution and attatch electrodes. When the test began Elisabeth had to remain still and quiet for about 1/2 hour . The results came back showing a minimally abnormal EEG due to presence of focal sharp waves and they said it may be suggestive of neuronal dysfunction in the bilateral occipital regions.
OK, so then a morning full of tests was done. We next went to meet baby Owen and his family. Now Owen is the baby who inspired us to do the cord blood infusion. He was born one year prior to Elisabeth and was the first hydrocephalic baby to have the stem cell procedure. His family started a website to help eduacate and lend support to families going through the same thing. Infact, until I found their website I was convinced by doctors that Elisabeth wouldn't live. Owen and his parents have meant so much to our family and it was an honor to get to meet them. It was fun to see the two babies together and take their pictures...little friends :)
After having lunch with them in the hospital cafeteria we were just getting ready to leave and spend the rest of the day exploring the town...but then it happened again....the foot started to twitch. Yes, it was another seizure coming on. Luckily we were still in the hospital. So we hurried back upstairs in the childrens hospital where they took her back to a room and went to call the doctor. Dr Kurtzberg (the dr for the infusion) then called Elisabeth's neurosurgeon to give him a heads up on what was happening. He gave her the go ahead to do whatever was needed. They got her on a medication and warned us that she would get extremely drowsy.
So we finally left the hospital at around 7:00 p.m. A long day considering that we were originally only supposed to be there for around one hour in the morning.
The next day we checked back into the hospital at 11:30 for the stem cell infusion. It took them about 1/2 hour just to get the IV set up. Poor Elisabeth....it's not easy to find a vein on a newborn. She was so tolerant though. They had to try 3 locations before they were successfully able to get the IV in. Then came the moment that we had been anticipating for months - the actual infusion!!! It took only about 15 minutes to get it all in her. Before the infusion they mentioned that the solution that the cells are preserved in had a funny odor to it - similar to creamed corn. Boy were they right. So for the next 24 hours Elisabeth's breath smelled of creamed corn, not a terrible thing...just strange. Donald and I have started calling her our little corn on the cob. Halloween costume next year??? Anyways, Elisabeth then stayed on IV fluids for 4 hours. At one point Donald and I ran down to the cafeteria to grab a bite to eat. When we came back to her room she had an entire medical team around her. Luckily it wasn't anything too serious, Apparently she had received a double dose of drowsiness....from the seizure medicine and then from the meds that they gave her during the infusion. She had fallen into such a deep sleep that her oxygen levels had dropped really low. But they snapped her out of it and got her levels back up. At 7:00 they let us go. The nurses there were so kind and sent us off with campus maps and suggestions for what we should do and see the next day before our evening flight.
So now we are home and doing well. We still have lots of follow up to do in regards to the seizures. But it's good to be back. We feel so blessed to have been able to do this for Elisabeth. There will never be any way for us to know just how much difference the stem cells will make in her life. As her Doctor put it, we would have to have two of Elisabeth, one that received the cells and one that didn't to see how much good the cells do for her. But the important thing is that we are trying everything in our power to give her the best in life which is what she deserves.
