Monday, July 21, 2008

Just how stressed out do you think I can get by Friday?

I am one of those people that is just a natural born worrier. Can't help it; its just who I am. In some ways its miraculous that I've never developed an ulcer or anything along those lines. One of the things I tend to do when dealing with Princess Bear (PB) and her health issues is not to deal. If you can put things off (if they can be but off without harming her obviously) then I'm all for it. Its a great defense mechanism. Unfortunately all good things must come to an end and many of my avoidance issues are coming front and center at the same time. I'm beginning to feel like I'm on an out of control roller coaster. I called PB's plastic surgeon this morning thinking that we'd get an appointment sometime within the next couple of months. Yeah right...how does this Friday sound? AAAAAAUUUUUUUUUUUUUUUGGGGGHHHHHHHHHHH!!!! I instantly said no but was then told that the Dr was going to be gone for all of August and then they had no idea when we'd be able to get an appointment. Since we have to drive to Chicago (approximately a 3 hour ride) it seems more prudent to do it now than in potentially bad weather. Maybe this is better but I'm in full on panic mode.

I guess you need a bit more background for any of this to make sense. PB was born with something called bi coronal craniosynostosis. What this means is that 2 of her soft spots were already fused at birth. Bi coronal cranio is one of the whose to have because it involves both coronal sutures and can seriously affect the way the skull and brain can and do form. Not surprisingly when you affect the way the brain forms you can have a lot of secondary health issues which PB does. It was known from the night that PB was born that something was wrong and within the first 5 days she had a CT scan and an MRI as well as a plethora of other testing. Our first trip to Children's Memorial Hospital in Chicago was when PB was 2 1/2 weeks old. (My dad felt it was necessary to introduce PB to some Chicagoland staples and drove her by Wrigley Field and we had to eat at Malnati's) We meet with a plastic surgeon on that trip since a plastic surgeon is actually the Dr doing most of the work. The neurosurgeon is a very important part of the team but in the long run there is actually more plastics work done. We really liked the Dr and he seemed to understand our fears and answer all of our questions and put us at ease. PB had her first major surgery at 7 1/2 months of age. The surgery was over 6 hours long (and we drove through a blizzard to get to Chicago...what a long long long 24 hours!). Now I'm sure that there is nothing that Drs can do to prepare you for what your child will look like after this kind of surgery (the incision is literally from ear to ear as the entire skull is opened up and reshaped) but I was still sorely unprepared. My daughter was completely unrecognizable for several days. To the point that my parents didn't recognize her without me by her (because she literally could not tolerate to be held for the first 2 1/2 days). The plastics Dr and the Neurosurgeon were both great but frankly the neurosurgeon was the voice of reason during the whole hospital stay. PB had a few complications but was released on Sun (surgery was Tues). During that time if I wasn't in love with Children's Memorial at the onset I was by the time I walked out the doors. I literally spent every moment in the hospital and for the most part the nurses were beyond amazing. (We had a problem with PB day nurse who didn't want to administer morphine. I understand the risks but I also understand that my child just had her head cracked open and was in huge pain and was still refusing to eat 2 1/2 days in). The other nurses were truly angels on earth! I got sick while we were there and I'm a big tea drinker as it is but even more so when I'm sick. The only times I was leaving PB was to use the bathroom, to order meals to be brought up to the room and to get hot water for tea. One of our night nurses was so kind and started bringing me tea bags from home! How nice is that?!!!? She also would make sure that I knew what was going on with PB at all times. Then there was nurse Rae...truly a remarkable woman. Kids loved her and she loved them! By Saturday I was just beyond exhausted. Anyone who has spent time in the hospital with a child knows that sleep isn't a real option. As I mentioned earlier PB couldn't tolerate being held for the first 2 1/2 days after that she didn't want to be put down and mommy's arms were the best. Her eyes were swollen shut until Saturday evening when little slits were opened. Well by Saturday I was among the living dead. Nurse Rae put PB in a stroller and told me to take a shower and a nap. She took PB on her rounds with her and then kept her at the desk with her for a bit. I cannot tell anyone how much that bit of downtime revived me.

Children's Memorial also does really nice things like having a massage therapist come in once a week for the parents!!!! How awesome is that? You get a 1/2 hour massage for free! A cart is brought around every morning and a volunteer gives you coffee, tea or hot cocoa and a magazine or paper. You can go to the cafeteria every few days and order meals to be brought up to your child's room for just a few dollars a meal. I would go down around midnight and place orders for 2 days at a time. PB was sleeping and it gave me a few minutes to stretch my legs! Everyone working there from the custodial staff, to the cafeteria workers, volunteers, nurses and Drs are NICE! Its almost amazing when you consider the number of people you deal with and its always pleasant! Something you don't always expect in Chicago! (I love the city but you don't always associate it with friendly!)

Why am I telling you all of this? To set the background. I felt very comfortable having PB having surgery at Children's. Then her Dr. started to work at Shriners also. PLEASE DON"T THINK I'M KNOCKING SHRINERS! Its an awesome hospital as well and does a lot of very very valuable work. I just don't feel comfortable having my daughter have major surgery there. I told her Dr. that we could do her yearly visits there but no surgery. He was ok with that so we tried that route for awhile. The next problem we had was that our Dr. didn't want to answer any questions. Now I'm a worrier and I know this but I also want to know what I can expect for the next few years of my daughters life. Whenever I asked questions about the future and what he expected he would just say its years away don't worry. Sorry that just doesn't work for me. So I meet with another plastic surgeon in Chicago. I really liked him but it wasn't Children's. I've been hemming and hawing (?) about what to do. I guess I'll have a much better idea after this Friday. Its time for the Dr to give me some idea on what to expect. I know that Drs are also fearful of lawsuits but I still want to have some idea of what to expect. It might be nice to have some idea of when my daughter next major surgery is expected to be.

I'm sorry....I'm sure that this is very long, drawn out and doesn't make much sense. I must say that it helped me calm down a bit to just lay it all out there. I can't change anything and know I shouldn't borrow trouble so I guess I'll just enjoy this week with PB and go into the Drs with a list of questions and walk out with answers either way. Now its time for a shower, a cup of tea and bed!


HM Sarah Siggy

3 comments:

Susan said...

Hon, if you need to talk, you have my number.

Heather said...

Sarah, this is a lot to deal with, and I'm very sorry that you and PB have to face it. Remember that God cares about all the details of your life! If you pray for specific guidance from Him, he will give you the answers you're looking for. He has given me very specific answers to my questions through Scripture. If you haven't read my IVF post, there are some examples there.

http://blog.wantingwhatyouhave.com/
2008/04/my-in-vitro-fertilization
-ivf-story.html

I will pray for peace and clarity for you. God bless!

debbie said...

Sarah, I can't imagine how hard this would be. I pray for wisdom for the doctors and I pray for strength for both you and for PB. Bless your heart. I lift both of you up before the throne of God. I pray that He would bless you. I pray that He would show Himself to you and comfort and protect you. I pray that you would go to Chicago filled to the measure with all the fullness of God. Filled with all His peace and mercy. Filled with the confidence that God Almighty is in control and loves both of you so much. I pray that the surgery and recovery are uneventful even remarkable. I pray these things in the mighty name of Jesus. Amen