Back to the Hospital - Post Op Visit

A picture from last week showing the very latest fashion in ear helmets!

Today we went for the post op visit with the surgeon at the hospital. It has been a tough week and we have all been looking forward to this day to get some answers. Sweetpea has been in a considerable amount of pain since going home and instead of decreasing the pain medicine as we expected we actually needed to increase it until about Monday when things seemed to stabilize a little for her. She is still on some heavy pain meds but they are keeping her more comfortable. Also she is complaining mightily about being chilled, like super frosty chilled and no amount of heat is able to bring her any level of comfort or warmth.

So the doctor takes the packing from the outside of her ear today and examines the sutures behind her ear. He is generally pleased with her progress. He thinks that the packing was inflating and causing her the increasing pain and therefor the pain should resolve in a day or two. I really hope for her sake that it does.

She is still on a lot of restrictions and precautions for illness, which means keeping clear of crowds and away from people who are sick. This week that has meant keeping her away from her littlest sister, which was soooo hard to do but we managed. Thank God for P*ure*ll! I love the stuff, don't hate me for it.

We so appreciate all the prayers for her and for us. This has been a difficult time but one where we have been comforted through faith. Please keep praying for her as she heals and for her difficulty in going out in public and getting unwanted attention because of her ear helmet. Her tender heart just wants to hide any differences and not have to explain it to the world.

Really rough night, and a surprise ending

Last night was really wild. The pain and the disregulation of the heartbeat....finally by 4 am it all settled down and she slept soundly until 6:20.

The ENT arrived promptly at 7 am, we had been warned, and did his rounds. He was delighted with his work on her ear and stated that she could be discharged if pediatrics felt she was stable.

After eating breakfast and keeping it down, I gently increased her activity looking for signs of either increased pain or again the wild ride from last night beginning to repeat.

Right before lunch we went to the play room and an elderly gentleman enticed her into learning to play pool. It was truly endearing to see her start to grasp the game, partly because of her Opa's legacy of pool and their shared "engineering" talents. The gentleman was delighted and called her "precocious". Funny how that label keeps getting applied to my kids.... or is it a generational thing?

After lunch she was checked out and cleared to go home. This is such a big blessing for me as I ache all over and want the comforts of my own home and bed. Sweetpea said the funniest thing this morning, "this hospital is not like a hotel, not at all. At a hotel they don't stick you with needles and wake you up all night. But at a hotel they don't think you're as special. Next time lets go to the a hotel." Funny, even to my groggy brain.

So we are heading home, waiting for the discharge flotsam to be taken care of and for the final adios. She is a little shy about going out in public with her ear helmet, and there is no yelling, blowing her nose, jumping or running during the recovery. There is though lots of special attention and loving up, can never have too much of that!

She's Through!

She made it through fine. The doctor was happy with how things went. The tumor was not as attached as he had feared, it was more of a mass. It has not attached to the mastoid bone yet so he did not have to touch that! He thinks he may not have to do the second surgery, we will have to wait and see. He fully repaired the eardrum. They had the most trouble with her anesthesia and regulating her heart rate. It would go very low and then spike into racing and then plunge again. It took more time in recovery and a longer watch then they anticipated.

She was glad to finally see us and immediately wanted to know when she could eat. Having been promised a slushy weeks ago by one of the doctors she wanted the promised made good immediately.

She looped in and out of reality for a while. When she came around she would ask if she still had to go get her surgery. When I told her it was done she seemed to not believe me. Time/space warp I think.

Surgery Day

We are at the hospital waiting and they have a computer for parents to use...score! I thought I would update the peeps as to what is going on here.

This morning we woke Sweetpea at o-dark-hundred and fed her the required orange jello and gatorade to hydrate and fill her before she went NPO (no food or drink allowed before surgery). She thought we were o-certifiably-crazy parents, she was not wrong off that mark.

We loaded up the last of the luggage and headed out for the trip to the hospital. She was fretful the entire way there but with a lot of TLC when we got there she was able to calm down by the time we were actually called in to the pre-op room.

They gave her some sedative and that did the trick to take her into drowsy and we got to sign off and talk to all the doctors who would be on her case this morning.

Kissing her goodbye and watching them wheel her away was a hard moment for this mama's heart. I had to remind myself to trust God with her precious life.

We are waiting in a large waiting room with other parents and we went down to get an early lunch so that we could be ready to jump as soon as they call us into the post-op recovery. They have a lady who updates us every little while as to how things are going.

If I didn't have so much energy pulsing through me I would be able to doze off for a good nap...not going to happen. I can't even focus to read because I am too tired.

I'll let you know later as things progress. Thanks for praying.

Getting Ready.... one week until the big surgery

A lot of our energy in the last couple of months have been going towards getting Sweetpea ready for surgery that is scheduled for next week. This sweet little girl has been struggling for most of the years of her life with chronic ear infections and the piercing pain that accompanies those due to loss of her eardrum.

Not only does she struggle with the ear infections, she has acute chronic sinusitis and hearing loss in that ear.

After seeing the top ENT in the region without any real movement towards correction or mercy on his part towards her pain we were encouraged to travel a distance to another regional center to seek another specialist. This doctor ordered some tests and they revealed that there is a tumor growing in her inner ear. Distressing as that was to hear we were told that as it continues to spread it will effect more of her hearing and create greater permanent hearing loss if we delay any longer.

We have been going through the rounds of doctor's visits to get her pre-qualified for the surgery. Besides this we have had to keep her healthy and without an ear infection. An ear infection or a recurrence of her asthma will scrub the surgery date of the 15th.

The surgeon has said that there are three game plans: A, B and C.

A. is to open her up with a small incision behind the ear and be able to excise the tumor and put in a new eardrum. Easy peasy and we are out of the OR in 5 hours.

B. is to open up a larger theater incising the entire ear flap and laying it forward, this meaning that the tumor is more difficult to get a hold of when they are actually in there. Time frame of this is unknown, but longer.

C. Is to do B but also drill a hole in the skull behind her ear to gain a more rear access to the tumor and the time frame is blown out the window. Whew, everything in me prays it doesn't have to be C, just so much harder, ya know?

So, they have scheduled us for a cozy 4 day stay at the hospital afterward. We will see if plan B or C happen, it may change.

The travel and the stress of having the other kids far away, as well as my Beloved commuting back and forth will all be hard. We would so appreciate your prayers.

Sweetpea is ready to have the pain go away and she realizes that she will have to have some greater pain first but we are helping her not to dwell there too long. I have a small bag of tricks packed for the hospital to keep her distracted.

Her biggest concern is that the horrors of her last hospital stay with her other family will not be repeated. Those fears I cannot seem to dislodge. For 10 days she was left at the hospital with brief visits by a parent to check in with the staff on medical concerns. No one was there to support her in her pain and fear, and she is concerned that it will happen again. Even though we have done the hospital thing before this time it is planned so she has had weeks to think about it and to ponder whether or not I will go home without her or leave her alone there. (I hope there will be enough space in her trust for me to take potty breaks!)

Sitting for Portraits

There is no task that I have grown a strong disliking to as much as I do to portrait sittings. I could 'rish, but I won't, she just started me on this hamster wheel earlier than I would have chosen. Seriously, I would rather take them to get shots then to have to dress them to get their pictures taken, and I know I am not alone in this.

My Beloved suggested today, Sunday, that since all the kidlets were dressed so nicely for church and that their hair looked lovely that we stop by the local photo studio and get portraits done. Yes, I did have a great coupon he knew about but beyond that he also had this really sweet thought that with things changing next week with Sweetpea's surgery it would be nice to have a good "before" picture.

His great big dad's heart was concerned that if they have to shave hair, or if there is bruising or swelling for a time that she will need a good reminder that it will all grow back and return to her normal beautiful self. How could I resist such a great, loving thought?

So off to the studio we went and after the initial rumblings they did a great job posing and smiling. Afterward I was so glad that we had done it. Besides they grow up so quickly, you need celluloid to remind you, so in the end it's worth any momentary pain.