March 5 - Day 19 K.C. was feeling about the same today but kept trying to help me. If he took Ibuprofen he didn't ache as bad but his throat was still a major pain. I'm not sure why, maybe the mother in me kicked in because I knew K.C. needed me, but I started to feel like I could do more. I was able to get up and do things. I was quite a bit more active, I was able to start getting ready for Disneyland. (Lets be honest, this basically means start in on the mountains and mountains of laundry. But hey, loading those machines was a start!)
The drainage had slowed to about 1 cotton ball every 4 or 5 hours and I was able to go most of the day with out pain pills. (HUGE difference!) That night the drainage seemed to stop all together. The pressure, and hearing didn't change but at least it wasn't leaking all over the place!
March 6th - Day 203 weeks of this. Seriously? I was glad for the changes that were happening but looking back and remembering the first day or two I never ever would have imagined that 3 weeks from then I'd still be dealing with it! (And I STILL hadn't used my gift card!)
K.C. was doing better today and we were both starting to think that we might actually be able to go to Disneyland and enjoy the time we were there! What a blessing. We really were excited it was just hard to not know what was going to happen. We spent the day packing and getting food and stuff ready for the trip. (We decided to go in the car not the van, to save on Gas. This was actually very tricky since our Sit-n-stand stroller literally took up most of the trunk. But it worked thanks to K.C.'s expert packing skills.)
March 7th - 11th (Days 21-25)....AT DISNEYLAND! We had a miracle week! K.C. started feeling like himself again. I was able to go from a 5 month stay on the couch to walking all day everyday around the parks. The kids were sweet and excited about the whole thing and amazingly enough my ear let me enjoy the experience.
{ K.C. was very happy to get out of the car }
It was a little scary to be in the big crowds because of all the noise. I literally couldn't hear K.C. talk to me unless I walk on his left side. The music that played sounded like it was playing through blown speakers and there was a lot of buzzing and rattling when sounds got loud. (Apparently though, the parks speakers were in good condition, it was just me that wasn't. K.C. said everything sounded perfect. :) The scariest part was worrying about the kids. Worrying that they would be standing just feet from me calling for help and I wouldn't be able to hear them! But to make me feel better K.C. helped me make name tags for them. They said the kids names, our names and phone numbers. We stapled them to the backs of their shirts. Some people thought it was brilliant, some people thought we were nuts. But I felt better so I didn't care.
There were lots and lots of things that happened at Disneyland, but they deserve their own post so I'll only touch on a few things.
The saddest of which was that at the end of the second day there (the 9th) K.C. was helping Savannah off of his shoulders and dislocated her left elbow. It was so sad. Both for her and K.C. I won't go into all the details here but the long and short of it is that we had to take her to the ER.
(remember that whole sick to my stomach about medical bills already part? Well this was a little different because it was my baby girl. But I had to force myself not to think about what an ER bill with no insurance would look like and just try to take care of my girl. But if I let myself start to think about it I started crying.)
Waiting for the Nurse.
Some X-rays and an adjustment later, she was starting to feel better.
The next day she was back to her normal happy self. A mommy shouldn't have to watch their kids in pain. It was good to see her happy again.
The last day there (March 10th) sometime in the afternoon my ear started building up pressure and then started hurting more and more in a piercing stinging kind of way and not long after that it started draining again. Not too bad but enough that I had to keep a tissue and wipe it often - because no I had not brought cotton balls into to the park.
But I was able to finish the day, enjoy the fireworks show that night and then make it home the next day with a bearable amount of discomfort.
I felt really blessed that I could have enough of a break to enjoy the vacation with my family. To relax and be able to forget about the regular things and worries of life and just make some good memories. I really do feel like that week was a tender mercy in the midst of this storm because the break didn't last long! Just barely long enough!
March 12th-15th (Days 26-29) When my ear started draining again I had thought 'well, Annie's ear is doing much much better now and she's gone through several cycles of draining and then not, but each time seems to be less severe and so this must just be normal, annoying, but normal, so I should just wait and see what happens.'
So I just tried to keep going and hope it got better. No such luck. It gradually but consistently got worse. I am so lucky to have the sweet family that I do because this week K.C. had several Jewelry parties and this week and as was becoming typical did them all by himself. My sisters took turns coming over to help with the house and the kids and my parents checked in or stopped by often to help too. If it weren't for them and their sweet support I would have felt like K.C. and our kids were completely forgotten by the world around us. These were very emotional days. I was trying to maintain a positive attitude, trying to have faith that the prescriptions that I had taken were working, trying to be patient and not expect results RIGHT NOW. But as I steadily got worse it became harder and harder to feel those things.
March 16 (day 30)We had 2 jewelry parties in Northern Utah so K.C. got up early and left by himself to do them. (Have I mentioned that he's my hero? Seriously. He's kept going under so much strain and stress and he somehow manages to get everything done and take care of everyone. He amazes me.)
I stayed home and tried to help the kids but as the day wore on I just kept feeling worse. And quite frankly I started falling apart. I try to blame pregnancy for some of my emotional outbursts but honestly I was just flat out falling apart.
Craig had been so excited about St. Patrick's day and really really wanted to try to catch the leprechaun this year. I had found several fun ideas and he was so excited about doing them that I felt bad letting him down. So I tried to pull myself together and make things fun for him. But with K.C. out of town each thing that I tried to do became more and more daunting.
It ended up that I went out to my parents and my sisters helped me to make it fun for them. I was just going to go out there and have them help build the traps but I ended up staying the night with the kids and trying to trap our leprechaun there.
March 17th (Day 31) St. Patrick's DayCraig woke me up at 7:30 wanting to see if his traps had worked. So we followed the path of mischief around the house and Craig had a great time seeing what the tricky little mad had done.
By now I was in lots of pain again the stinging wouldn't stop and the swelling was returning.
It was nice to have company to distract myself but by the time K.C. got home I knew that we couldn't just wait and watch anymore. Something wasn't right and it felt like the whole thing was starting over again. I was scared, frustrated, discouraged and exhausted. We had literally tried EVERYTHING that any of us could think of and we were stuck.
I was tired of feeling like the lump on the couch that made everyone's lives around me miserable. I was tired of feeling like I was winning first place for worst wife and mom ever! I wanted to get up and live again. To do something productive to play with my children, to make them laugh to have fun with them. To HEAR them laugh! To contribute something to life instead of suck up everyone's time and energy taking care of me! Before this whole ear thing started I had been almost completely useless for about 5 months. So throw this on top of it and I really felt like I had used up all of my 'lets take care of Celeste' points and I just wanted to be well.
But you remember that I wait till the weekends before I cave and decide to go for help. Well I was right on schedule. It was Saturday night. We were torn with what to do. The specialist hadn't seemed to be much help last time, the few times I'd seen Dr. Lyman were helpful but hadn't been a complete solution. If I went back to Dr. Lyman and something was wrong with my neck and head that was effecting my ear he could address all of it, where as just going to the Specialist wouldn't. The other part that I couldn't stop worrying about was... you guessed it, finances. We could get several visits to Dr. Lyman for the price we could get one at the Specialist. But not knowing what else to do we decided to go back to the ENT and hope that they had more answers this time. I mean that's their JOB! Surely they should be able to fix it!
March 18th (Day 32) Just waiting till Monday to make an apt. But I was trying to not be a wimp so I got ready for church and made it to Sacrament meeting. Then I took Savannah home. Sigh. This was the day we had our '3 hour power outage.' It was a good distraction. I tried to be enthusiastic from my post on the couch.
The Swelling was bad enough that I couldn't touch my teeth again, the draining was more (although not bloody now) and it seemed like I was just in an unstoppable spiral into what I'd already been through.
Sometime during this blur of ear troubles I stopped just being sick and pregnant and became fat and pregnant. Well not fat per say but large. I poke out now. My hips are starting to give me fits (much earlier than expected) and it's getting increasingly hard to get comfortable. This adds a whole new level of complication to the sleeping arrangements.
Have I mentioned sleeping arrangements? No? Well let me explain. I can't lay flat. That's too much pressure to the ear. So there's a mountain of pillows on my bed that I try to sleep on they keep me in a propped up position. Not so bad right? Well no, BUT I'm pregnant so I can't lay on my back. Even in the propped up position if I lay flat it starts to ache really bad in my lower back and I can't sleep so that option is out. BUT to sleep on my side I absolutely HAVE to put a pillow between my knees or I hurt so bad after a few minutes that I can't move.
This is kind of personal so skip this part if you want to but with Craig my hips were pushed a part (like normal I suppose) but what wasn't normal was that my pubic bones were pushed way too far apart. Now whenever I'm pregnant that area gets inflamed and if I lay on my side the bones - that are too far apart - get kind of squished together because of gravity. That pinches nerves. it makes it so I can't move my legs without help and it never quite stops hurting. It's terrible. The further along I get the worse it gets and by the end I can't even cross my legs without lots of pain. SO... sleeping on my side is also challenging. But add my mountain to the mix and you get a banana effect on the spine. I can't quite get it to work where there's a gentle slope from hips to head, I always ended falling off or tossing around and messing it up.
To illustrate the point (very crudely I might add) I drew this little picture to show you what is hard to explain. The uncomfortable lump that always feels so much bigger than it is, and the banana spine.
I can't believe I just took the time to draw that! Haha. Sometimes I make myself laugh!
Oh and one more thing. See my left ear hurts. AND it's draining AND pressure makes it worse. I'm sure you see where I'm going with this. Can I sleep on my left side? Nope. So right side it is. But in all honesty that only lasts for a little while before the whole hip things starts hurting and so then I just start tossing and turning and it makes for quite the night.
And then there's the whole "Good bye K.C. I'll be up on this pile, perched carefully. I'll hold your hand if you like but you can't get too close unless you build a pile too. Oh but don't forget the pillow between my knees! And recently the one under my stomach too. Try not to let them get in your way... Basically good bye my love I'll sleep with you again someday."
March 19th (Day 33) Called the specialist expecting to hear that it would be next week sometime before they could see me but they said that Dr. Marsden could see me the next day. This was the actual specialist, the one we were referred to in the first place, not the PA. I must admit I was kind of excited to see if he could help. (I later found out that one of my friends knows Dr. Marsden and his son the other Dr. Marsden and they both recommend to NOT see the PA in the office. I thought that was interesting. But from what we had experienced not surprising.)
March 20th (Day 34)Ear Appointment! So I tried really hard not to have high expectation this time. I wasn't expecting good news and I wasn't expecting any relief. I just wanted to know what was wrong and what to do about it.
Let me just say Dr. Marsden is very very nice! He's a nice elderly man that was very gentle, very understanding and seemingly very thorough. He looked in my ear (without hurting me! I was beginning to think that wasn't possible.) He wasn't very happy with what he saw.
He said that the first round of prescriptions should have solved the problem weeks ago. But this was definitely NOT swimmers ear and never was. It's a middle ear infections (Swimmers ear is an outer ear infection and cannot move to the inner ear.)
He also said that there was a small hole in my eardrum. Small enough that he didn't think that ear drops would be able to get into to attach the infection beyond. He took a sample of the drainage and said he was going to grow a culture to find out what it really was and then we'd know how to treat it. But growing the culture usually takes 4-5 days. He didn't want me to have to wait that long without treatment so he prescribed amoxicilin to start taking just in case it would do the trick, then we'd be on the right track and it wouldn't hurt me to get started on it. He said once we got rid of the infection it can take 6-8 weeks before the hearing returns because there are so many little parts in there that have to recover.
I was relieved that he was going to actually figure this thing out instead of just guessing. And glad that we'd gone in again, instead of just figuring that we weren't being patient enough.
This is information that I learned later but he told me later that at this appointment my eardrum (that is supposed to be paper thin) was swollen to 1/4 of an inch or more and looked very bad.
March 21st - (Day 35) 5 WEEKS. Sigh.I started taking the amoxicilin and tried to patiently wait.
This was the happy day that we got our bill for Savannah's ER visit. 2,500.00 and that didn't include the physicians fee. Tears! Oh the tears. It was hard to swallow. Without going into too much financial detail, that's, well that's a lot more than we have. With me being practically useless and K.C. having so much to do our Paparazzi business that is practically all we have to live on has slowed quite a bit. And that makes me feel even worse because not only am I costing us more than we can afford but I'm also making so that we don't make the money that we were making. Bother. A few hugs from Savannah and watching her play happily with her brother helped me to remember how valuable that is.
Somewhere inside I knew it would be OK. Miracles happen. It will all work out. Not sure how but it will.
March 22nd (Day 36)I was expecting to have to wait several more days to hear from Dr. Marsden about the culture. Which worried me a little because we had decided to go to AZ to help K.C.'s parents with some computer troubles they were having and depending on what he found out I didn't know if being out of town would work out very well.
So it was a pleasant surprise when he called, after yesterdays good news I was ready to hear something encouraging!
And then he started explaining things. Let the water works begin! K.C. expressed it well when he said 'It's pouring at the Hunt house to day.' I think he was referring to the amount crying I was doing.
This is what he said. That I had not 1 but 2, nasty strains of bacteria growing in my ear. One was a Group B Strep and the other was Pseudonymous (or something very similar to that - I'm not sure how to spell what he said!) Then he explained that there was no safe oral treatment for those to bacteria for someone who was pregnant!
The only option was to go to the hospital twice a day for ten days for IV treatments. What?! He said he'd called another infection specialist and brainstormed with him for sometime about it but this was the only option that they could feel good about recommending because of the baby. If left untreated it would lead to 'some big fancy word' meaning really bad ear condition that would require major ear surgery to clean up and may or may not result in restoring my hearing.
So my options, 10 days of IV's twice a day. Or major ear surgery and possibly permanent hearing loss. It didn't seem like there was much room to hum and haw about it. Either a big mess now and lots of needles, or a bigger mess later and things that I'm sure are much worse than needles.
This was a very bad day. Probably the worst yet emotionally for me. I wasn't expecting GREAT news from the results but I usually worry more than I should so I was pretty sure I was over doing it a little and the results would be better than I was distorting them to be in my imagination. I certainly didn't expect them to OUT DO my expectations.
The idea of having to go in twice a day to do something that practically terrifies me... Well I was a mess. And of course the ever present worry in the back of my head "If a 4 hour visit to the ER cost 2,500. What kind of a horrendous bill will twice a day for ten days bring?!"
I know I sound like a broken record but these are the things that were tormenting me. I know I stress a lot about finances. And I know that there are those who have opinions of me and our situation that I'm probably glad I can't hear. But it is what it is, we have what we have and these are the things that I worried about and felt in the middle of this. I know that thing will work out, but it's a constant battle not to let the worry and stress overwhelm me. It's hard to see and hear the world judge us for what we should or should not be doing but the fact of the matter is, we're doing our best. We're trying to do what we feel is right and we're trying to follow what inspiration we feel we receive for our family. So go ahead and judge us world. But we may just have to ignore you.
The hospital called and started getting all my info and getting everything set up. They informed me that I would be coming in at 7:30am and 5:30pm until April 2nd. The first IV was that night.
Wait! That night! K.C. wouldn't even be able to go with me because he was supposed to be doing a party that night. Could we cancel? Probably, but if there was ever a time when we needed to earn some money it was now. Cancelling didn't seem to be the right thing. This brought all new waves of emotion and a whole new bunch of things to worry about hat I hadn't thought of yet.
7:30 both of the kids are still sleeping then. What are we supposed to do wake them up and drag them to the hospital? That wouldn't even work because you're only supposed to have one person with you in the infusion clinic. And since it's RSV season having children in there is even worse. Do we take them somewhere? Who could we take them to that early? Or could someone come over here? Most of the people I thought of to ask have children so having them come over wasn't a good idea because then they'd have to haul their kids over here too and mess up their mornings.
5:30 That's dinner time. Same problem, what to do with kids? And on the days with parties what to do with me?
It ended up that my parents came in and dad took me to the clinic that night while mom provided moral support from the motor-home. My sisters watched my kids.
If at first you don't succeed. Try try again.
The nurse was very nice and tried to put an IV in my right arm. It didn't work at all. It hurt really bad, and of course I cried. Thankfully she went and got another nurse who wrapped my arms in warm blankets and then tried on the left arm. She was able to get it to work but it still hurt. I'm such wimp I know. But so it is.
As she was trying the second time she asked where my husband was and when I told her that he was putting on a jewelry party for me because I couldn't be there she said "Oh well I guess we can't be mad at him then. If he's willing to do something like that for you, he's a hero!"
Very true.
They left the IV in and sent me home. That night was rough. Add tender IV to my sleeping program and you have something awesome.
The twins stayed the night at our house that night and it was nice to know that they would be there in the morning to watch the kids. They are sure helpful girls!
So the IV therapy begins.
