My "mom" thoughts

My thoughts...

This past week has been torture. I have questioned everything I know and don't know up to now. I have doubted. I have cried. I have held my kiddos tight; watched how they act; listened to what they say. I have wondered what would happen if we just stopped. Stopped all the appointments and meds. Stopped the waiting and worrying. But deep down, I know we can't. We can't stop all the appointments and meds, but I've got to find a way to stop the worrying. Jeez. Something happens when you have kids, it's like a mechanism takes over in your brain that you have no control over.

So where am I now?

What we know now still doesn't give us a leg to stand on. It doesn't give us anything to tell Jackson and Addison. They are getting old enough where the standard "it's what the doctors said to do" doesn't always cut it. They want to know why, and we don't know that. We also don't want to scare them with "what if's" so the explanations they do get have been specific (like talking about taking enzymes to help digest your food), yet vague (not saying that you will probably have to forever because your pancreas isn't functioning the way it's supposed to). But even they are getting tired of "not feeling well." Addie told me two nights ago that she "really wants to play, which is why she doesn't say anything when she isn't feeling well." That's how it is here. They both do this. And they show it in different ways.

We give all the reasons for the specific meds. But they are starting to think big picture now. Addie not as much (thank goodness), but Jackson still does not remember feeling well. That is a problem. And to have the not feeling well continue, and only get better on antibiotics, but have no "reason" why it only gets better on antibiotics is frustrating. It makes me worry. Are we not even on the right path? Are we missing something? Are we making this happen by something we are doing/not doing?

Is it time for a second opinion? Technically, the pulmonology team is following Jackson and Addison much like I would guess they would if they diagnosed them. Because they are treating everything that comes up, but still. And even if we went with a second opinion, where would we start? Especially because all the other doctors who have been through Jackson's "stuff" agree, so in a way there have been lots of opinions.

I know they know what they are doing. I do appreciate, much like our ENT, that he (pulmonologist) doesn't jump into anything. But I feel like there needs to come a point where we know more? And I get that we may not know more anytime soon.

Time....I get that it takes time. But I live with children who are starting to come into their own in their own ways and don't get it. They see their friends feeling awesome and playing and they want to keep up, so they do. And then they melt down later but have no idea why and don't want to say anything about not feeling well because it's hard for others to believe how they say they don't feel well when they have been out playing. When you have the expectation though that you will go to school and you will do what is asked, even if you aren't feeling well, you do it. That's how it is here. We just do it.

So for now we keep on doing it. As parents, we continue to work to understand what they are feeling and saying/not saying. Their behavior and body language says more sometimes than their words. Mainly because they are old enough to know on some level that not everyone has to do what they do everyday. They are old enough to know, and frankly from my point of view, it sucks. I want to reassure them that this too will pass. That there will be an end to the meds they don't like. But I can't because we don't know. The doctor's don't know. And that sucks too.

I promise I'm not all doom and gloom, but I know for me I have to give these thoughts a place to go. So here they are. Better out than in, right?

Results...

Friday, Addie and I went back to the Pulmonologist for a follow up. It was actually scheduled before her bronch, so the timing worked out in that we would be able to touch base with the doctor face to face instead of over the phone. Plus, we got a girls day out of it! Addie was a bit terrified of going to the doctor's again (after Monday, I would be too), so we did a lot of talking about what the appointment would probably be. He was wonderful with her. Very relaxed, and in fact Addie chatted up a storm with him. At one point, Dr.G looked at her and chuckled and asked if this was normal for her because she doesn't usually ever talk with him. I said yes, she normally talks a lot!

As of Friday's appointment, Addie's cultures are growing Haemophilus Influenza. He said this could be part of the reason for her ongoing cough. There are still cultures and "tests" that aren't finished, but as of now this is what we know. He put her on a strong antibiotic (thank goodness she can swallow pills!!) for Haemophilus Influenza Bronchitis and also wants us to be "liberal with the use of the albuterol" as her chronic cough is "confounding the clinical picture." He ordered the pancreatic elastase test and said that she will have to have the sweat test repeated in the ongoing future. In his notes, he said she fits the picture for "CFTR related disease without confirmed diagnosis of atypical CF." I was relieved that her appointment didn't involve any "tests." She needed that. We are still waiting to hear back from GI on her studies there.

With her appointment out of the way, we took off to the Mall...because what else is a girl going to do? I needed to visit the Origins store, so Addie got a mini-facial while we were there. It definitely made restocking much easier. Plus, she had a nice time being pampered and relaxing! We ran a few more errands there, Addie tried on the Mad-hatter hat and had fun with that, and then headed out to get our toes done. That was my break!

After toes, we stopped for a fro-yo snack and then hit the road. Addison slept the whole way home. My kids don't sleep in the car, ever. So I know she isn't feeling great. While we were driving Dave called to say that her antibiotic wouldn't be ready until Monday afternoon (which for a lot of reasons wasn't ok, but one is because we are leaving Monday for vacation). I called the pharmacy and had to get a little cranky with them. They finally said they could call the other pharmacies in town to see if anyone else had the med in stock. Wouldn't you know it, one of them did. So when I called back to see what they were able to figure out, they had transferred the med to the other pharmacy and we were back on track. Addie and I picked it up on our way into town 15 minutes before the pharmacy closed.

She has been using the albuterol about 3 times a day. It does seem to be helping I think. I'm still "new" to this world of cough. We plan to do the pancreatic elastase test when we get back from vacation, and hopefully will hear back from both doctors over the next week regarding the rest of her results. 

Update: We heard back from the GI while we were on vacation. All her biopsies came back normal, which as our doctor said, is a good thing. So we know for sure she's not dealing with celiacs or anything else in that area. We are still working on that pancreatic elastase test. It's a timing thing.

Addie's procedures

Addie's adventure started last week on Tuesday when she came home early from the summer program she was participating in with a high fever a week before her procedures. Argh!!! Luckily our doctor was able to get her right in and started her on antibiotics for an upper respiratory infection. It was a long week waiting for the fever to go away because we couldn't move forward unless she was fever free. Thankfully, Friday it really stayed down and we crossed our fingers that was it! 

Since she was having a colonoscopy, she had to do a cleanout. For anyone who has done it, it's not fun. And, it doesn't taste good. We had to mix a bottle of miralax with 64oz of Gatorade. She got to choose the flavor, as long as it wasn't purple, blue or red. When I saw the instructions, I crossed all my fingers and toes knowing this was the same one Jackson had tried before and it didn't go well. The final instructions were to call the on call GI doc if she wasn't tolerating it. She took her first med Saturday night to get things moving. We decided to start earlier than they said on Sunday just in case (that's what you do when you are 2 hours from the hospital). She had to take another med and then wait about 2 hours to start the drink. We did. She got three 8oz drinks down before she started to throw up. We took a break, tried again and this continued all afternoon. We let her swim on and off, hoping the activity would help. She was going to the RR, but no where like what they tell you. So about 4pm when she wouldn't drink anymore (hadn't since about 12) I put a call into the doc. She wanted us to get 2 enemas a few hours apart and try that and then see if she would drink anything else. Off to the store I went and we tried. First one kind of worked. Second one, not at all. At this point, we were nearing 8pm and we knew there was still more to go. In an effort to relax her, we looked up "poop songs" on youtube and found a hilarious parody of "Let it Go" related to gas. (The things a mom will do). My mom was there and was a huge help, she got her to drink one more 8oz glass while laughing to "Let it Go."

We called the doc back to let them know our progress and she wanted us to come into the ER to finish her cleanout there. ARGH! I knew what this meant, and so did she since she and Jackson had been discussing this all week. We threw things into bags and off we went to the ER. We got there about 11:30 and got started. 

Addie was terrified of getting an IV and the NG tube. They did the IV down in the ER before she was moved up to a bed. Our nurse was awesome, and between he, Dave and another male nurse they were able to hold her arm/body still enough to get the IV in. She thankfully calmed down after it was in and got to ride like a queen up to her room. Her nurse upstairs was awesome. She did a great job of showing her what was going to happen with the NG tube, and then explained that we were going to the treatment room to put it in because they wanted to keep her room her safe place. Once in the treatment room, the four of us tried to hold her (Dave and I along with two nurses). Holy cow, she is much stronger than Jackson. They had to call in another nurse as well as use a sheet to mummy wrap her to keep her in one place. It was torture for all of us. At one point, tears started to roll down my cheeks and Dave told me to go out. Instead I turned my head, held on and continued to talk her through it. (I didn't realize she had seen my tears until a few days later she asked why I had been crying when they put the tube in. I explained to her that as much as I knew they needed to do it, it made me sad that she was so scared and it hurt and I couldn't stop it). The tube went in, and thankfully she didn't throw it up or pull it out. We couldn't have handled it again. After the tube was in, her nurse returned with a heating pad because her IV was hurting and they have found this helps (it did!!) and a few surprises for being so brave. We took a quick field trip down to x-ray where they checked that the tube was in the right place and about the time they took the x-ray both Dave and I looked at one another and we both hit the wall (mind you, it is now 3am). We headed back up to her room where the nurses had already gotten it ready for sleep. She hooked Addie up to her IV and the go-lightly stuff. She also came in with a cup of the go-lightly and said the doctor wanted her to drink one. Dave and I looked at one another as Addie said "No Way!" The nurse got her to try it, and she almost spit it out on her. Thankfully, the nurse was able to get in touch with the GI and she didn't have to drink it. After answering some questions for the nurse, it was bedtime...at 3:45am. 

I slept an hour and 15 minutes (I know thanks to my fitbit). I woke up when they came in to draw blood. Addie didn't stir. She had one nightmare a bit later, but went right back to sleep. Dave finally woke up about 8:30 and got some coffee. Addie woke up earlier and she and I watched TV. They increased her solution and after the nurse change, added a second drip of go-lightly. Thankfully, she started going and it worked!!!! Chicken broth! (I don't know that I will ever look at that the same again). 

Addie finally fell back asleep, but about 10am a visitor was walking outside and wanted to stop in. They saw she was asleep and were going to keep going, but we motioned them in. Smokey is one of the therapy dogs who visits kids at the hospital, and seeing him walk in lit up Addie's eyes. It was what we all needed at that point. She snuggled and petted him. He laid on her lap and just about fell asleep. His visit was definitely a highlight of the morning. 

Right after he left, our day nurse came in and let us know that her procedures were still on (there was some question now if they were going to be able to still do them at their scheduled time) and they would be down to get her at 11!! Addie and I quickly hopped in the shower and rinsed off. We were ready for them before they got there. We met with each doctor. Our pulmonologist did a great job with Addison, explaining what was going to happen. She listened and talked with him and then went right back to her headphones. Anesthesia and GI stopped by and she was ready to go. We were with her until she fell asleep. She was brave and only started crying right before she fell asleep. I cried on the way out of the room. Dave went to get us lunch and I paced. Her bronchoscopy was first, and he came out to let us know it was done and structurally everything looked good. He said, "we will get to the bottom of this thing." Dave and I chuckled over lunch because of course it looks good. It would be to simple to have something figured out right away. GI came out after her EGD and colonoscopy and also said structurally everything looked good. He said she did really well and he planned on discharging her from the hospital when she could tolerate solid foods. 

We were finally brought back to the recovery area (holy cow they make you wait FOREVER!) and she was still asleep. She had a nurse sitting with her and after about an hour, the nurse woke her up. Addison woke up calm. She said, "it's done?" She was tired, but ready to go home. After some observation, we were transported back to her room where more surprises and crafts had been left for her to do upon her return. She did her puzzle and really wanted to go down to the Zone (one of the kids areas). Our nurse didn't think that was a good idea because of the anesthesia. Dave and I just wanted to get home. He slept and Addie and I figured out the puzzle and the Barbie. The doctor came in and decided Addie could eat if she was ready. She ordered pancakes and ate a whole one complete with a blue gatorade. No throw up!! I was able to show the nurse clearance from our pulmonologist that he was discharging her and she got our paperwork ready and we were ready to go.

We stopped quickly so Dave and I could eat, and then finished the drive. It was a LONG day!!! 

It took Addie a bit to fall asleep that night, but once she did, she slept all night. 

Black and Whites

The last night of recital, Addison was in full force and wanted her picture taken. I just love when she turns it on!!!

"Keep Calm and Dance" Night 3

Dave and Jackson came for night 3 also, which was important to Addie! She definitely enjoyed it herself much more I think. Although she was done (didn't want to get her make up on and get ready), she had more fun onstage than the other nights. I think it's less pressure knowing it's the last night. But she was full of spunk!

Loved that recital came together and we all kept calm!!! Hopefully we continue this path of calmness when it comes to dance!!! 

"Keep Calm and Dance" Night 2

Night two started out with a bang. We came prepared! Motrin was down the hatch and the sports wrap was on. What a difference it made. Oh, and Dave and Jackson were in the audience waiting with flowers for their performer. The girls had a great time backstage warming up for acro.

Last year, Addie bolted off stage after her final "pose." This year, she stayed! But she also couldn't bolt because her teacher had her surrounded by others. She definitely had her concentration face on during her performances. She has the "have to get it right" gene, but she did start to relax. She absolutely loved her tap and ballet costumes. Her acro one is definitely itchy.

It was neat to see some of the kids personality really start to shine on stage as it was incorporated into the dances.