crazy month

It has been well over a month since I last posted and it has been the craziest month of our lives. Kara's surgery went as planned on the 15th of October. We were relieved and very happy with how well Kara did. She gave us one smile day of surgery although she was very groggy and the day after she was back to normal. Ten days later she woke up really irritable. I tried giving her a bottle and she wouldn't take it. She felt warm to me through her clothes so I took her temperature. When the thermometer reached 102, I didn't bother to finish. One of the things we need to watch for with the hydrocephalus is a fever. If it gets above 100.4 we are supposed to take her to the ER. So I called Matt and Aimee (lady I work for) and Dr.Troup's office. Matt came home and Aimee came to pick up her kids. We rushed the baby to the hospital. All we have to say is shunt and they whisk us in with no waiting. Kara's fever was up to 104 when she got into the ER. They immediately gave her Tylenol to lower the fever and then told us they would be admitting us. They took blood and urine samples just to rule out infections anywhere but in the shunt. All along we were pretty sure the shunt was infected. So they admitted us and we moved back to the 5th floor. Little did we know that room number 5516 was going to be our home for almost a month.  The night she was admitted Dr.Troup, her neurosurgeon, came and drew a culture sample from her shunt. The fluid came out clear, which we learned was a good sign.  Unfortunately the culture came back showing bacteria. This indicated that she had a shunt infection. Dr.Troup explained to us that she had a shunt infection and then he laid out the plan for the next 3 weeks of our lives. She started antibiotics the day she came in and she was going to continue on them. She had to be externalized, which involves taking the tube that runs from her head down into her abdomen out of the abdomen and connecting it to a tube that would collect her spinal fluid. The tube was on a plastic thing that looked kind of like a board and it had to be adjusted to be level with her ear, every time she was moved. As you can imagine this was a challenge. Every day they would collect spinal fluid from the external piece and test it. It takes several days to tell whether it is going to grow anything. After we had negatives for four days we had 6 more days of antibiotics. Then after that Dr. Troup would take out the original shunt and put a new shunt in on the other side of her head.  So this was the "plan". It took a few days of disappointment with cultures coming back positive for bacteria. The Infectious doctor decided to add a second antibiotic called Rifampin. He explained that Rifampin helps break a barrier in the brain and allow the first antibiotic Vancamison, to get into the brain and kill the infection. Once they started her on the Rifampin we started to see the clear cultures come back.  We had our struggles throughout the week. They decided to put in what they call a picc line. It is a central line the put in so that they don't have to repeatedly stick her with an IV. The average life span of an IV is only about 3 days. They attempted a picc line just by sticking her in the arm and threading it through. Sounds terrible but Kara only cried with the first pick and actually fell asleep on the table while they were attempting. They were unsuccessful. They set her up with an appointment with Radiology the next day. Radiology put her out and then used a camera to try and thread the picc line. Once again they were unsuccessful.  They said the veins in her shoulder were too small. I had a hard time with all this. Her IV had already popped out once and watching her get stuck over and over was hard. I was a little upset and couldn't figure out why it wasn't working. A doctor explained to me that with babies the almost always go in a vein in the head. Because Kara had a shunt infection in her head, Dr.Troup told them they were not allowed to use her head.  So the next step was a Broviac. A Broviac is a line the put in under her collar bone that comes out just above her heart. She had to have actual surgery to put that in. The surgery was a success and the Broviac proved to be absolutely wonderful. When we finally ended out countdown it was a Friday. Dr.Troup operates on Monday, Wednesday, and Friday. Because she was right at the end he wouldn't do it on Friday. He wanted a few more days buffer. His schedule was booked Monday so her surgery was set for Wednesday at 2:30. Then we planned to go home on Friday. That would put us at 22 days in the hospital. Wednesday at 1:30, Dr. Troup came to our room to inform us that he wasn't feeling well. He hadn't cancelled anything yet but he said he wouldn't want some one feeling like he did operating on his baby. He gave us two options. He could reschedule for Friday or a another surgeon could do it. Matt and I discussed it and brought him back in to ask about the other surgeon. He told us that he does adult shunts and he could do the shunt. The stomach part would have to be done by a pediatric surgeon. Matt and I were uncomfortable with the fact that he wasn't a pediatric surgeon. We ultimately decided to reschedule for Friday which added two days to our stay. We took comfort in the fact that we made the right decision for Kara. Friday came and she went in for surgery. We got started late but she was angelic while waiting. The surgery went pretty well. They were surprised by the amount of scarring in her stomach. A nurse called me during the surgery to tell me they brought in a pediatric surgeon to open up her stomach because of the scarring.  We were a little confused by this but Troup explained to us after the surgery that an infection will cause scarring in her stomach. The amount of scarring was more than they expected. Suggesting that she may have had the infection longer than we were aware of and the revision she had on the 15th, may have given it a chance to show itself. All in all things went well though. 2 more days of antibiotics and she could come home. So we brought her home on Sunday. Her head has been sore and is still very tender but she is getting better everyday. We took her to the eye doctor on Monday. We were concerned about the crossing of her eyes. He said that the pressure may have caused that and they may go back to normal now that the pressure is off. He is going to check her in a month and see if they have gone back to normal. If they haven't he is going to patch them. They are improving so far. They sent her home with her picc line which Matt and I are required to flush everyday with saline and then heprin. It was a learning experience but we are getting it down now. Friday she went to the pediatrician and she said everything is healing perfectly so far. She left the hospital Sunday at 13.8lbs and weighed in at 14.14lbs on Friday. We think the new introduction to cereal may have had something to do with that. She also got her 4 month vaccinations a little late.

We have so many people to thank. First of all my mom, who flew down Friday and helped us through all of this. Also Matt's mom who came down for the surgery and helped with the baby so we could get out of the hospital some. Several families from church: Adams, Joiners, Johansons, Coreys, Conleys, Lehmans, Carrs, Miriam Chapman.  Who all brought food or came to visit, it was so sweet. Also my boss Aimee, who has been incredibly flexible.We also want to thank people from the bank who came by or sent food. Especially Teresa, who scoured the city to find Kara a Halloween costume for the hospital trick or treating. Last of all we want to thank the multitude of people who were praying for our sweet baby. We ask that you continue your prayers for her that God would provide healing and that the infection would not return. We can't praise the Lord enough for what he has taught us and is continuing to teach us. We know this was to grow our faith and it still continues to grow. We are so thankful for our little girl. We know that we only have her by the grace of God and he has chosen us to parent her. I promised God that if he gave us a baby we would do our best to raise her to love and serve and give glory to him. We would do our best to raise her to have faith. Little did we know that she was going to be the one to teach us about faith. Thank you all again. We know that God heard and answered each and every prayer said for Kara.