Surgery, Here We Come...!

Well, we are two days away from Haley's surgery. I wish I could say that she is excited and feeling strong, but both would be lies. She has continued to feel poorly since her meningitis, and is really pretty weak. Her incision is still puffier than ever, so I called Dr. H's office on Monday to let them know. I was a bit pushy (hard to believe, I know!), but I told them that I really felt he should see it. They reluctantly made an appointment for Wednesday at 5:00 pm, the end of his day.

I went to practicum in the morning, and left at noon to pick Haley up. We left at around 1 and got to Dr. H's at 4 pm . I figured, an hour is not that long to wait. Haley was feeling really poorly and immediately found a place on the floor, used my coat as a pillow, and covered up with the purple fuzzy blanket she'd brought from home. I played solitaire on my phone and tried not to eavesdrop on the conversation that two other women in the room were having. Eventually, they asked me about Haley, and after speaking with them for a while, I realized that the people who suffer from EDS have many of the same difficulties. Both of these ladies were older than Haley, both were moms, and both had had several surgeries with Dr. H. They felt so bad for Haley having to endure all of this at such a young age. I couldn't disagree with them. Here she is asleep on the floor of the waiting room:

After they were both called back to see the doctor, it was finally Haley's turn. It was shortly after 7 pm and I was both tired and hungry. Haley was tired and in pain, but hasn't been very hungry lately. Dr. H took one look at the incision and said, "Oh dear," in a way that made me realize that my pushiness was warranted. He told us that the shunt is leaking from around the tubing. most likely, and that he could either fix it the next day in the outpatient surgical center or do it when he untethers her cord on the 14th. He gave her the choice, but the next moment he made the decision for her--he would rather do it all at once on the 14th.

We left at 8 pm and stopped to get Haley a bowl of soup (she was finally hungry). We drove home, contemplating the next 5 days and thinking about the surgery. This was a long day, but well worth it. I had told Dr. H that I was happy to drive 5 hours (2.5 each way) for a 5 minute appointment. I think he thought I was being sarcastic, but I meant it. He knows so much about this condition, and we trust him implicitly. (He did spend a lot more than 5 minutes with her, which was nice!)

Larry and I made the decision for me to go with Haley on the 14th alone. His school has graciously allowed him to accompany me for all of Haley's medical appointments, but it causes some difficulty for his students. Even though there is a substitute teacher, they are often confused and in need of more instruction. For this reason, I will go and he will stay.

So the plan is to leave on Tuesday early in the morning to arrive at the hospital at 9:30. She will have a PICC line placed and then will be gotten ready for surgery. It is scheduled for 1:00 pm. I don't know how long she will be in the OR, but I suspect several hours. Obviously, we covet your prayers for a successful surgery. A friend prayed with me this morning and prayed that it would be "his best day." I liked that. Also, I don't like waiting while she's in surgery and usually squirm, read, play solitaire and talk to Larry. It will be difficult to be alone. Please pray that the time passes quickly for me. And I will be staying in a hotel, which is not my favorite thing to do alone. I would appreciate prayers for safety and good sleep. Can you tell I'm anxious?? I think she will be in the hospital for several days.

Finally, I have something a bit awkward to address. Several folks have noticed and made use of the "Donate" button on this site. Up until now we have been able to manage most of the expenses this round, thanks to some money that I was left after my mom died. With me working only 2 days a month (due to finishing school), I have had teeny tiny paychecks. The funds that have been donated are such a blessing. They go into a separate account and will be used for her medical expenses alone. I have not ever mentioned that button, and it was put there, I guess, by the person who set up this blog for me. (She, too, is a Dr. H patient, and has been through as much or more than Haley, so she knew that resources would be an issue.) Anyway, we are grateful for the donations. I am so behind in writing thank you notes, that I don't know if I will ever catch up. Our personal belief is that God will provide for all of our needs, and He has done that over and over through the years. Our own beloved church has helped us in so many ways, including financially, and we are grateful. Thank you for your prayers, your gifts, your meals, and your love for us.