Long

In PACU after surgery

It...........has...........been......the........LONGest......... weekend.......ev.......ER.............. Time has literally crawled by since Friday morning. Hurry up........... and wait.
 Friday was the longest day ever.
Both Jeff and I were a silent mess, though we both reiterated that as long as Madeleine is safe they can take all the time that they need. Take all day, just come back with good news.
We spoke to Dr Lazareff around 10:45 though surgery didn't actually begin until around noon; we turned her over about 8 am, and we were finally able to join her after 4 pm as she awoke from the anesthesia. Her surgeon indicated the tumor was removed in pieces, and that the whole area is very delicate. We were cautiously optimistic that everything was removed. Her last brain surgery was in February and we couldn't help but constantly compare her behaviors and reactions between them. The good news is with her age (and/or experience) she has been recovering beautifully. Each day she has noticeably progressed with her movements and activities. Friday evening she was hooked up to several IV's and monitors that kept her pretty immobile as well as cranky; she did not like it at all and seemed to be crying to me as if to say, "why aren't you picking me up and holding me?"

Saturday morning

She went back to sleep after her last feeding at 6 am and I awoke to her around 9 am Saturday playing quietly in the hospital crib by lifting her toe with the pulse ox light so she could see it and gradually lifting her other ankle wrapped in gauze hiding a peripheral IV on the side of the crib just a little higher each time. I gave her a few of her favorite toys and she remained quiet and entertained herself with them as I watched. She was still NPO (hospital speak for nothing to eat/drink) in anticipation of the MRI, which still wasn't actually scheduled; there was a chance it wouldn't happen, pending having a pediatric anesthesiologist. Eventually around 11:30 they took her downstairs to imaging and I was able to stay with her in the MRI room as they prepared her for sedation. This MRI would show us if the surgery was successful in removing the whole tumor. I left her in their care and waited in her room for her return. By afternoon most of her extra monitoring was discontinued; she got a bath and all the lines were removed, allowing for us to pick her up. Did I mention how the day just dragged on? dragggggggggggggggggggged on super slow it seemed, just waiting for someone to come tell us news, good or bad. We prayed for good.

We didn't hear anything the rest of the day, and Jeff let me go home and get some rest since we didn't really sleep more than 3 hours Thursday night before the surgery, and I had only about 3 hours solid sleep Friday. He stayed up all night watching over her and apparently she was hungry enough with the steroids that she very willingly took a bottle from him twice throughout the night. whew!! I was able to sleep a solid 8 hours before I jumped up realizing it was morning and hurried back to the hospital. In Sunday morning rounds, the neuro-surgery team came in and finally gave Jeff the MRI results: they got it all. The doc showed him the MRI from last week and the one from Saturday, and Jeff said he's seen with his own eyes, what once was there is now gone. In an instant, the weight of an elephant is lifted from our shoulders. Now we focus on getting her well and recovered. The rest of Sunday we noticed more improvements in Madeleine; she began verbalizing some of her favorite words and responses, trying to pull herself up by herself, and managing to balance her torso so she could sit up unassisted. Although she was doing these things easily before, it was a huge deal she was doing these just days post-OP. She continued to nurse well and humored solid foods a little. Again, the day just dragged as we tried to figure out if they would discharge us as she cat-napped throughout the day. I helped give her another bath and we took turns playing with her. Sunday Annalise stayed home with my mom, and Sunday night Jeff went home earlier to have dinner with her and play before bedtime. We all talked on the phone several times: Annalise to Mommy & daddy during the day, I to my mom; in the evening Annalise, Mimi and Daddy all talked to Madeleine and she insisted on standing on her bed while resting her head on my shoulder and holding the phone so she could listen. Precious moments indeed.
It's now Monday morning and the docs are saying we can go home. They'll discharge M after they remove the bandage with the remaining dose(s) of her steroids given orally, since there is really no reason to keep her . Her vitals have been amazing, she's breathing without any issues, her heart and blood pressure look picture perfect, all good things. Likely this week we'll meet with the pediatric neuro-radiology to discuss radiation options available to us based on Madeleine's tumor area, her age, etc. I guess this week I'll be an A+ student learning brain anatomy. I want to understand as much as I can about what areas of the brain control what so I can ask informed questions about what throughout Madeleine's life could potentially suffer as a result of the radiation to the tumor area. What we do know is that without radiation, the tumor will surely grow back. With radiation and another chemo treatment, we're hoping to nip it this time. The probability of it coming back a third time is still probable, unfortunately. We'll keep praying that it doesn't. I'll say though that me & God are having some pretty difficult heart-to-heart talks though lately. I'm upset and my faith has suffered. I had faith she would be ok, and the tumor came back. She is ok; I'll give Him that. But our little girl shouldn't keep having to have her skull sawed open with a jackhammer and undergo these extensive and tedious surgeries for the greater good of men, or whoever is worked into this plan. I'm very upset about that. I've asked Him to minister to me to help get me back to a place where I can have unyielding faith that He IS protecting my baby, not just allowing her to get well to suffer again. I can't take that. I quite literally say the Serenity Prayer over and over each day, because I question what I can accept as part of this journey. Thank you so much for the continued prayers for our family, we definitely still need them.