Hopeful For Surgery on Thursday

*I found that my words did not flow as they usually do when I sit down to write this blog. I think the exhaustion is getting to me. Please forgive the uninspired writing in this post.

After my last blog post, Sweet B did end up being admitted to the hospital. It was stressful as the Ronald McDonald House (RMH) did not have an opening the first night and so I had to find a hotel room with Strong B. It was also stressful because Sweet B was in a major CVS episode and wouldn't even do anything but cry. It was awful. They did metabolic testing on her and we won't get any results for another week most likely. (It is very, very scary to have this testing done on my child. The thought of it makes me want to vomit).

They did find that her gallbladder has gone from having "sludge" for a year, to having one stone in April, to having several stones as of now. Her surgeon who she has had before recommended removal because apparently leaving it in place is dangerous as it can cause the pancreas or liver (I think) to swell or something like that (I really have no idea--I just know that it is dangerous). He said it could be causing her a colicky type pain. She is not in screaming pain because it is not inflamed. It probably has nothing to do with her CVS and its removal will most likely do nothing for her retching. But...it could be causing her a bit of pain, which could trigger an episode. Who knows?

The surgeon is hoping that he will be able to remove the gallbladder laparoscopically which is the typical way it is done, with a one or two night hospital stay. However, Sweet B has had surgeries before in the belly area and he will need to find virgin tissue, or else he will have to do this with an open cut. Please God no. The healing of that is really hard and she doesn't need another thing that hurts.

On another note, you should see her scars. They are beautiful in a strange way. She has her scar on her back from her spinal cord untethering. She has the feeding tube scar and the big scar where they cut her whole belly open to do her fundoplication. Then she has the little scars on her feet from being stuck with needles daily in the NICU. If this surgery is laparoscopic, I think there will be another four small scars. She is one brave girl and I love those scars.

Anyway, we were released from the hospital on the third day and she was still in episode and we still had her on a lot of meds. After two more days at home she suddenly came out of it. And we all breathed a sigh of relief. Because I always fear that she will not come out of an episode and we will spend years and years in the hell that is an episode. They scheduled her for surgery on Thursday the 18th. I decided to keep her inside so as not to expose her to any illness so that nothing would postpone the surgery. A day later she started coughing, and got a fever, and not swallowing her spit again, and the coughing made her retch...and she started not tolerating her feeds either by her pump at night or by bolus feed through the tube during the day. We don't know if it's another virus, or the same virus, or another episode, or her gallbladder bothering her. She cried suddenly tonight but she doesn't point to a location of pain. We are so confused and worried and wish that she could just tell us what is wrong. She has language but it is delayed and she is not speaking in sentences yet and is not able to verbalize a lot. We ask her where it hurts and she isn't able to say.

Last night she spent the evening in our bed coughing and I had to keep stopping the feeding pump all night. I don't know if it's virus coughing or CVS retching. I called the surgeon's nurse today and told her that I don't know what is going on and she said they would evaluate it on Thursday morning and tell us if they will do the surgery or not. I really pray that they will do it. I just want it done and I want her out of any possible pain that the gallbladder might be causing her. I want my mind to be able to rest and my heart too.

My mom came over yesterday and gave me a twenty and told me to go out get something for myself, so I went to the thrift store and bought some shorts. I didn't get rid of the baby weight after having Sweet B and I went right on to have Strong B, and both pregnancies I wasn't allowed to exercise or do anything, so needless to say, my clothes do not fit. And why am I not one of those lucky women whose baby weight magically falls off with nursing?? Strong B is still very much getting most of his calories from nursing, and he's eleven months old nearly, so I'm producing a lot. You would think that would help! The only thing it does is give me an extra 7-14 Weight Watcher points. If I stopped nursing I know it would come off a lot quicker, but nursing is more important to me than being thin. I've lost a lot in the past five months but I only have one pair of shorts that fit properly in my current size, so I went and got some that will hold me over until my next size down. It feels so good to be getting the weight off and it was really somewhat fun until the last month happened and I haven't been able to exercise or cook. My hope is that I can get back on the wagon soon. I need it! Finally doing this for myself and getting myself back has been so good for me. Anyway, it was WONDERFUL to get out and did me so much good, especially since I spent the night dealing with a coughing Sweet B and her pump.

My prayer is that she will be strong enough for her surgery on Thursday. We are all so tired. We feel isolated. Summer is always my favorite time of year and spending the last six weeks with her sick and in episodes and fighting going to the hospital have really done a number on us. Mike and I joke that we better not see the other one secretly sneak off to the car with a suitcase!

I will say that I had my best stay so far at the RMH because my dear friend was there whom I met in the NICU three years ago. Her daughter was recovering in the ICU after her surgery. We met for our meals and it was almost...fun? Okay, it really was miserable as it usually is and nowhere near fun but having a dear friend there made it manageable. We said it was like summer camp....but the kind of summer camp that you never want to go to!

We are breathing in and out and hoping that our lives will settle and that we will be able to just breathe without fear or worry. It's coming, right?