May 28, 2009

Feeling Overwhelmed

Ainsley's care is complex. A lot of the time we are in a groove and things are relatively easy (by Ainsley standards) but this past week or so there has been a lot going on. I think many people including family and friends have no idea the energy it takes to care for her many needs. Of course there is the tracheostomy and G-tube which require a lot of special care. But the stuff that's getting me down is all the other stuff.

We trained a new nurse because our old nurse needed to help her mother move back to the Philippeans and left with 2 weeks notice. It's been a bit of an adjustment to train and get used to a new personality in the house. She's only here 2 days a week but it still affects us. We get the nursing because Ainsley's life is dependant upon her tracheostomy. I would give it up in a second to be rid of the trach. Anyone who thinks it would be great to get free babysitting needs to borrow a trached child for a week.

I've been eagerly waiting for Ainsley to get her gait trainer (posterior walker). I first started having talks with Ainsley's PT about it in March. It was ordered on 4/16 with an ETA of 1-2 weeks but there were paperwork issues with Medicaid and many phone calls and 6 weeks later we still don't have it. We were hoping that use of this walker could help her avoid a hip reconstruction surgery and double osteotomy. With her follow up with her orthopedic surgeon now looming around the corner, in late July, I'm starting to think the surgery is going to be inevitable and I can barely bring myself to think about it. It would set her back 12 months in development because the surgeon says it takes 6 months to get back to doing what they were prior to the surgery and during that 6 months she won't be progressing, just catching up to where she is at now. With any luck the gait trainer will be here within the next week and then I can start the process of trying in earnest to teach her to walk.

I've had many phone calls in over a week and a half to try to get answers from the ophalmologist. We got a second opinion about surgery to repair the ptosis earlier this year and we are due to follow up with him and potentially schedule surgery for later this year. After talking this over with a dad from Ainsley's school who happens to be a neurologist I decided to err on the side of caution and run the new surgical plan by the original opthalmologist. He wasn't familiar with the surgery and hasn't called me back. After multiple calls I'm still waiting. Even if he calls I suspect I'm stuck in the postion of trying to decide which approach to go with. Am I an MD? No. So why is it my choice? I'm still sick about the fact that swelling from her second cranial surgery damaged her eyelid muscles and worsened the appearance of her eyes so much. It's been almost 2 years. Maybe I'm not going to get over that.

We've got an upper GI scheduled tomorrow and a follow up next week with the surgeon who did her fundoplication surgery in October. I expect everything with the fundo is still good and we won't have to follow up again unless there are problems down the road.

We're in the process of transitioning away from the birth to three center and into the Seattle Public School system. We had our transition meeting this week. The next day I also had a tour of the school she'll post likely be assigned to. I had toured it once before and was concerned that this wouldn't be the right environment for her and had also toured the EEU. After yesterday's visit I'm feeling much better and think it's going to be okay. I signed enough paper that I felt like I was going through escrow. Now she'll have an evaluation and her IEP will be scheduled for September. In October she'll attend a program through Seattle Public Schools for 2 hours per day 4 days per week. They will provide a nurse to attend with her to keep her safe due to her tracheostomy. I'm hoping between now and then we find someone qualified. Even our current nurse, although an RN, came to our house with no real pediatric trach experience and did her first ever trach change on a "real live person" on Ainsley. This person has to be good if I'm to entrust my daughter's life with them.

I've had problems with Ainsley's suction machine and been talking with Medela, as well as ordering a battery from some random medical supplier back east. I LOVE our Clario suction machine and hate to be without it. As soon as the new battery comes I'll test it and if there is still a problem I'll have to send it off to Medela. Since I'd be without it I ordered a replacement from Children's HCS so I'm ready. I have to have two working suction machines in our possession just in case the other one breaks since Ainsley's life depends on it.

After a year of trying with no success to get the suction catheters I want from Children's HCS I was finally able to locate the ones I want through Apria. Even though I was told they didn't carry them I got through to the right person this time who knew they can get them through a distributor. I got the doctor's prescription and our first shipment should be here any day. I can't wait.

I needed a few cans of soy formula for an experiment to see if it helps Ainsley's airway and found when I placed this month's medical supply order that the prescription nullified our Pediasure prescription so we had to get yet another prescription put through with all three formulas so they could ship our medical supplies. Red tape. I love it.

I've got the BIG airway appointment coming up less than two weeks from now and that is heavily on my mind although I am trying not to think about it.

She has school/therapy 2 days a week due to the fact that she has global delays in the areas of gross and fine motor skills, cognition, speech and language and eating. Lately she's made a few gains but in noticing those I've also noticed how far behind she really is. Every day these delays become more apparent and worrisome to me. The only area she's not delayed in is growth where she is in the >95% range. (The girl is huge and that is not great for my back since she has to be lifted in and out of the stroller, highchair and crib, as well as carried up and down the stairs.) In addition to the two days a week we try to do as much "therapy" as we can at home. We work on walking, standing, eating, learning new words, vocalizing (using her voice), PECS and sign language. It's a lot of pressure to know that her development is in my hands. But I'm one person I can't do it all.

In particular I'm concerned about the trach, her airway and it's effect on her speech. I've been talking with her speech therapist and reading Childhood Speech, Language and Listening Problems and became concerned that despite the good results in March from her BAER that perhaps she has an issue with fluid in her ears, since both times we went for a hearing test they thought they saw evidence of that using the tympanometer. Even though she can hear it's possible that inner ear fluid could cause her to hear muffled and that could cause problems in speech for which she is already seriously at risk. I contacted audiology this week to see if they tested for that in March or could we schedule to have the test done before our 6/9 appointment with the ENT. Eventually I get a hold of the audiologist and she says "Yes I did test for that and there is evidence of fluid in her right ear so if you didn't already have an appointment I would recommend you make one." Oh really? When exactly was she planning on recommending that?! When she gave us the results in person? When she typed up her report? Apparently not. I guess she'd been waiting for my call these past 2 months. We are trying to get a speech pathologist from Children's that works a lot with trach patients to attend the 6/9 appointment so we can get help determining if Ainsley's difficulty with vocalizing is anatomical or neurological and are not getting a call back so that will probably mean scheduling yet another appointment.

I'm tired. I know things will calm down again, but soon I hope. Between Ainsley's needs, her everyday care, cooking, cleaning, laundry, homework, yard work (oh the weeds are killing me) caring for the other 2 kids with their own needs and my big kid (sorry Steve) there is little time left for me. Some days I feel I just don't have the energy to keep this up. But usually I feel better after a good night sleep so that's what I'm going to do right now.


  1. Susan - Whew! You know I considered writing THAT same post yesterday. I put it off because, well, I was tired just thinking about it. I know you have heard this a 1,000 times, but you deserve to hear it again. Ainsley is lucky to have such a devoted and caring mommy. I find for me sleep does not necessarily cut it these days, although I do try to keep up with it. I hope that the new nurse steps up and gives you some time to do something nice for yourself. Oh how I wish we could just go to Starbucks for a Latte, relax and enjoy a nice chat face to face. ((HUGS))

  2. I get it. I wish there were something magical that could be done and life were just easy for a little while. Sending lots of hugs!

  3. Izzy has apt Monday (cardiology)and Tuesday (genetics) next week at children's maybe we will see you guys there!

    odd that you did not get all the results from audiology! (ok not too odd since medical stuff gets so complicated but annoying for sure!!) do you get copies of all your reports are was it not in the report either?? we have had some trouble getting our cc cpoies of reports and have to bring it up when we go in seems like when they updated computer programs we lost the cc for reports. hmm? sending lot of love and am sorry your feeling overwhelmed though I think that your amazing!!! really amazing!

  4. Wow, after reading your story and your recent entry I just had to come in here and say our kiddos have ALOT in common. I totally "get it" about having to train a nurse and then another nurse and so on. It is exhausting! I hope you can get some much needed rest.

  5. I have been reading your blog for a couple weeks now. My wife thought I should leave a message for what she called "normal family" to our world. My daughter is trached, vent, G-tube the works. You might try Apria for a Debilbiss Suction Unit, we have had one for 5 years and have not lost the battery. We also put it through the works with her vent on, for instance rides at amusment parks aka roller coaster. We get plenty of looks but keep on trucking. I liked the blender mix plan, we want to get off of Boost Kid Essentials. I hate all the junk in the boxes but we need it for now. Good luck with the new nurse. We have been through about 20 of them. We lost all nursing for good now, no insurance or state program support.