Out of ICU

A visit from Noah

We moved Wednesday night out of the ICU and into a really nice room where I don't have to buzz in and out all night to use the restroom. Small things mean a lot when you're up all night. They took our her central line but she still needed to be on oxygen for the most part. We did more breathing exercises and she slowly weaned herself off the oxygen. Which was nice, because she hated it.

The other kids came to visit but Kate was usually pretty out of it. We had a time adjusting her pain meds. Finally found the magic combo that kept her relatively comfortable but also kept her breathing and able to wake when she needed to. She had her foley removed and was forced to get up and walk. The first couple times were pretty brutal.

On Friday we were told they needed another X-ray of her back. We went to X-ray and she had to stand up during the procedure.  They put a protective apron on me so Kate could use her arms to balance on my shoulders. I'm pretty much her crutch given our height difference.

X-ray 

We finally got the okay to go home but Kate was nervous about the couple of stairs I have going into my house. Physical therapy came and took us to a stairwell so Kate could practice going up and down. She did wonderfully. It calmed her nerves and we packed up. We got home around 5 pm.

We had the blow up mattress from her hospital bed put on her bed but she hated it. I finally put two doubled blankets over it and she was comfy. But, it kept making her slowly slide to edge of the bed. She has found herself in my bed a couple of nights as well.  I finally found the right combination for her bed. One egg crate mattress, and two thick blankets doubled under sheet. Yay!

Ready to go home

Our Stay in ICU

Not quite awake yet

After we talked to the Dr we were led to the waiting room up on ICU. You have to pick up a phone to be buzzed into the ICU unit. In the waiting room you can see patients being bought onto the floor. They said we would see her go by and then it would be another 40 minutes or so. We did see her go by, I ran to the window closest to her. She was still intubated, which I hated seeing. So dumb, I'm a nurse. But seeing all of this on my girl just feels different. Finally we were allowed to go into the room. She was no longer intubated when we saw her. She had two IV ports in both wrists, a central line in her neck, and an art line in her left wrist monitoring her blood pressure. Oxygen on, pulse oximeter measuring her oxygen, and pads on her chest measuring how many respiration's she was having. This was became our issue. Breathing deeply hurts. 

Art line and IV  

Kate did kind of wake up, enough to us that she hurts. Excruciating pain, that is how she later described it. It took a few minutes to get the narcotic from the pharmacy for her PCA so we were finally able to give her some IV morphine. It helped somewhat, but I have to say those first 24 hours were rough. There is absolutely NOTHING worse than seeing your child in pain and not being able to take it away. The second night I thought she was asleep, I was leaning over her, holding her hand and I said out loud that I would trade her this misery if I could. She never opened her eyes, but she said that wouldn't be fair and she wouldn't want that. I told her I would still do it, I love you so much. She just squeezed my hand.

There is one chair in the room that kinda lays down like a bed. It wasn't too bad honestly. ICU is full of machines going off all night. Here is where being partly deaf works in my favor. I tell Kate to tell the nurse to get me if she needs me and I simply turn over. Sounds gone. The biggest bummer was that to use a restroom I had to leave the ICU completely, which means having someone beep you in and out. One time I was coming back into the ICU, I pick up the phone to say I'm the mom of this patient, yada yada, and the lady, who I can see through the glass on the door, looks at me, says her name and then follows up with "I see you." The door opens and in I walk. As I am nearing her desk it dawns on me that someone else had opened the door with their badge, and the lady hadn't said "I see you," she had said ICU. I'm half embarrassed and half laughing at my stupid, tired self when I reach her desk. I apologized for just walking in and told her of my confusion. She was laughing at my stupidity as well by time I walked away. Marci on little sleep is not a pretty thing.

Every time it was time for a medication or pulling out her drain,  Kate would ask if it involved needles. This poor girl had tubes in both arms and her neck. But as long as we said no needles involved, she was fine. 

No one deserves what she has gone through, but I sometimes get so angry that such a kind hearted human being is being put this. Yes, I know, maybe that's why its her or maybe it makes her the kind person she is. But for right now, I want to be mad about it. 

Side view

X-rays post-op.

All straight now

 

Monday October 17th Surgery Day

Hair all braided and ready to go 

The night before surgery we had aunt Traci here to french braid Kate's hair.  I picked Kate up last Friday for her last day of school and the second we stepped out of the office she said "I'm nervous." First time she has said anything about being apprehensive about having surgery. I did what I could to calm her fears, but it didn't help that we were on our way to Rady's to get her blood drawn.

You have to know that this girl HATE's needles. With a passion. We got called back to get her blood drawn and she told the phlebotomist she was nervous, they told her to look away. She said it's easier if I watch. And she did and it was fine.

We had to be at the hospital by 6:30 am and Kate was straight out of bed. Traci and I were the tired ones.

Since Kate had mentioned she was a little nervous I had told the anesthesiologist and she suggested a little pre-surgery medication to calm her nerves. Turns out it was versed. That stuff is strong, and tastes terrible, according to Kate.  She started getting little loopy, we even recorded a couple little videos. She was laughing, we were laughing, good way to start the day. When it was time to go in she just waved and smiled and off she went.

Happy on versed pre-surgery 

We were walked out the waiting room and that's when I lost it. Those kind of tears that are so hard and fast it literally hurts your throat because you're trying to stop yourself from crying. Traci was my rock.  I had asked the liaison, a nurse who keeps families connected to the what is going on in surgery, that I need just a thumbs or something every two hours. She was very accommodating. Once she was 15 minutes late, luckily she gave me her number. 7 hours is a long time to wait to know if your baby is OK.

We finally got the call that she was finished and we went in to talk to the Dr. He told us that everything went fine. She had a slipped disc in her lower back that needed to have more work done on it than the rest. She was fused from T4 all the way down. That is a long, long incision. More work was done on her left side so there might be more swelling on that side and more side effects.

On her way to surgery

Scoliosis Update September 2016

We went in to see Dr. Newton again on September 6th. I have been meaning to post about that visit since then, but it just felt too hard to do. Apparently denial doesn't make things go away so here I am.

To catch up, Kate did have a pulmonary function test in May. It showed that she is breathing at 60% functionality. Between that and the two medications for her heart, one slows her heart rate, the other lowers blood pressure, she is one easily tired kiddo. We spent the summer just doing our thing. Kate can't sit on the ground for any length of time, or sleep laying on her back very well. But other than that we had an uneventful summer.

At our doctor visit on the 6th they took more x-rays of Kate's back. The curvature of her spine has gotten significantly worse. She was at a 44 last spring and is now at a 54. You do surgery at 50.

Kate is super excited! She gets out of PE for at least 6 months. Never seen a happier girl. She is literally counting down the days left of school and of PE. She can't ride any crazy rides at Disneyland for at least 6 months also. Definitely going to get a day or two in there before surgery.

Surgery is scheduled for October 17th. She will have an MRI of her back and another pulmonary function test before the surgery. Straight rod in her back. This will affect her hips, put more pressure on them. So the hip surgery we were thinking that would happen when she was in her 50's, might happen closer to her 30's. The areas above and below the rod will still be susceptible to issues due to her collagen being so wonderful. Her breathing should improve somewhat but her concave chest will at some point need to be addressed. One problem at a time, right?  Possibly some time in the ICU depending on her heart, then around 5 days in the hospital. 3-4 weeks at home afterwards depending on how she does. No brace, no physical therapy at this point.

This is what her back looks like now. She rarely complains of pain, unbelievable. But when she does we know it's serious. You can't tell by looking at her, but I can feel it when I run my hand down her back.

Lots to do before the 17th. Updates to follow. Prayers welcome.

Scoliosis Sucks!

Because Kate is limited in what she can do physically, she is now doing archery. She really enjoys it and is doing well at it.

Kate should have been wearing her brace for her scoliosis but she went on strike in January and started refusing to wear it. She would put it on at night only to rip it off and leave it on the floor by morning. At first it was just here and there, but it gradually became straight up absolutely no. She found her voice and let us know she was done. It just hurt too much and she basically said she would rather have surgery than wear it any longer.

Looks like she gets her wish. She went to her back doctor last week and it turns out she is still getting worse. AND apparently the brace only had like a 10% success rate in preventing surgery anyway. Very annoying to find out after the many painful days and nights in her brace. Her new number in her lower back in 42, up from 38 I believe, last fall. They normally do surgery when the number hits 50. In addition to the sideways curve, it is also curving in toward her breastbone, which likely impacts her heart and lung function. Yay, right?!

The surgery to correct it would be a fusion of her back, likely almost the entire length of the vertebra. The downsides would be that she would not have any further growth there, and she would lose flexibility. The upside is that she would not have pain, the risk of further complications from further bending would be eliminated, and she would get to stop wearing the brace. Kate is thrilled about this part. The surgery is not without it's risks. There could be nerve damage, and her cardiologist would have to consider how it will affect her heart. There aren't really other options so we have to move forward with the surgery. She will still be able to do archery, but there are other activities that she will  not be able be limited by lack of flexibility.

Her doctor wants her to wait another 6 months before having the surgery. One reason is just to recheck her back and make sure her x-rays are truly what they say they are or to see if the bending stops on it's own. It's very unlikely, but fusion is permanent so it's better to be certain. We will probably not wait too long as her back may continue to get worse with makes more straightening they have to do in surgery. We will probably wait until the end of summer since the surgery requires a week or so in the hospital and another three weeks at home before she can resume normal activity. There are tests to be run before she can have surgery. She needs to have a pulmonary test, her regular EKG and cardiac echo, we need to talk to her hip doctor, etc. Everyone who has been involved with her care, with exception of her eye surgeon, will have to be consulted with and involved in the surgery decision and care. First of these appointment is June 3rd with her EKG.

I won't lie, been a rough start to the year between this news and my dumb Meniere's. Here's hoping the rest of the year is awesome, the surgery goes well, the pain ends, and heart stays stable. Insert animal sacrifice and multiple prayers here.... make that a fruit,veggies, and plant sacrifice. Kate is a pescetarian, no animals should be harmed, even in jest.

 

Expander is Out!

Kate got the dreaded expander out of her mouth today. She had to hold my hand the whole time. She is now being fitted for a retainer she will wear every night. She chose one with a ying and yang design on it. So very Kate. We got a donuts to celebrate, turned up the music and sang a song all the way home.

So she is now 5 7" which is towering over over her 5 4" mother and her 5 3" older sister. Noah is still the tallest here. It has been a while since I updated which is a good sign. She spent a few days with cousins from Utah at Disneyland in January and went swimming with some cousins the first of April in Escondido. February and March were full of school and life as usual. I was out all of February and most of March, dumb Meniere's Disease.

Quick update on Noah and Abby. Noah made the JV tennis team and loves it! He and Abby are still doing robotics and have traveled to Utah to a competition. Abby and I went to Japan for her graduation gift last week. Tokyo, Tokyo Disneyland, and DisneySea. Fantastic experience.

On the Brightside

Kate had an appointment on Monday with her hips doctor, new X-rays were taken and lo and behold her hips look alright. The angle on the back film was making it look as though she had protrusio again. So that is a huge, huge, relief. But, the doctor did say that the lines between her femur head and pelvic socket weren't very thick, meaning it might need intervention sooner than he thought. Right now we are hoping for sometime in her 40's. That used to be 50's or 60's. You know what, I'll take it. With her aorta enlarged and her scoliosis so bad, I can put hips on the back burner for a while.

The rest of it...expander gets put back in her mouth next Tuesday. She see's her eye doctor at Shiley Eye Center next Thursday. This coming Friday she gets her new back brace to see if we get a bigger improvement on her scoliosis. X-rays for that in four weeks.

It's officially alright to tell me to hang in there, all that gooey crap. But please don't feel obligated, I don't actually want to hear it. I'm just saying I might not turn Hulk on you now as opposed to a few days ago. It's a start people.