The Good Times:

• Accepted to a spinal procedure in Thailand!! See previous post for more details!!
• Night nurse came on full time (M-Th) and is taking (4) 12 hour shifts a week!
• From what we can tell by measuring Makayla in bed, she is now 5’9” tall. We always thought she would be tall (: she has achieved it!
• Friends and family joined in fasting and prayers for Makayla—we MUST heal this pressure sore!!!!

The Harder Times:

I think this was the hardest month we have experienced yet:

Despair, anger, hurt, loss of hope, loss of vision or perspective, trapped, no help, darkness, depression, loss of control over Makayla’s care, inadequacy…

While we have struggled with multiple things, the one blaring story that has tipped this month to be ‘the hardest yet’ is our Infectious Disease team and a doctor that I believe does not want to be “Point” on our case but is stuck with us and has no one else to hand us off to. I think for this reason, she is making it very difficult to get what we need and is choosing to be offended rather than understanding of our situation and helping…more to come on this story below.

But let’s start with the bigger picture:

1. SICKNESS CONTINUES

Pneumonia turned to Serratia. Pulmonology’s x-ray and culture showed another infection in the lungs. Serratia--another gram-negative infection, which means a superbug that is resistant to antibiotics…HOW DO WE KEEP GETTING THESE THINGS??? The X-ray looked like spiderwebs in her lungs. A lung x-ray usually looks mostly clear, if you can’t see the lungs, then they are good, no pockets of mucus or infection. When there is a cloudy spot or section, that means pneumonia. The x-ray for Serratia on the other hand looked like the whole lung is cloudy and so many pockets and airways are showing mucus clogs. Thankfully Serratia has 1 antibiotic that can hit it, unfortunately, it’s not the one she is already on, so we start another antibiotic: a 2-week prescription of Bactrim, while continuing with the 4000mg of Augmentin daily.

We tried to get Makayla up for a couple of appointments (reasons and stories below) but moving her caused so much irritation to the lungs that we would go through an hour of non-stop cough assist, and then ultimately put her back in bed, unable to get enough of a break to move her to the car, let alone have enough battery time on the equipment to get to the appointment, through the duration of the visit, and then the travel time back home again…

2. PRESSURE SORE

We have been vigilant at adjusting and keeping off the pressure sore as much as humanly possible—if I could float her in the air, I would do it (;

We may see some improvement--we are getting a consistent depth of 3cm which is shallower than the 4-5cm we have seen in the past! But we still feel the bone at the top of the tunnel, so we are not sure if/how the depth is getting smaller while the bone is still exposed. Regardless, we are happy to be consistently getting a small depth reading!!

But the problems we are having with keeping her down are not in equal magnitude to the healing we are seeing and it’s time to get her back up and moving again.

We believe the immobility turned pneumonia to serrata, her feet are dropping and curving inward which means she will lose her ability to stand because she will get pressure sores on her feet if she doesn’t have a flat foot, her hips and ankles are twisting, and her spine is getting stiffer and harder and harder to manually adjust and straighten out…

We gave it a valiant effort to keep her down and off the sore to get this healed and it just didn’t give us enough response to justify the losses in other ways, so it’s time to get her back up and moving again.

3. WHEELCHAIR ADJUSTMENTS

Our Permobil rep is just wonderful. We are so grateful for all the help she gives us. She came a couple of times to the house to adjust the chair. It is so perfectly fitted to Makayla, with so many features that allow her some freedom and independence that there are lots of adjustments to make sure it fits properly and works correctly.

For Example: When she uses the head array to put herself in standing mode, the foot plate must adjust and elevate with her, or it will move above her head, and she won’t be able to reach the head array to get herself back down (:

We are still having a hard time with situating Makayla in the chair in a way that doesn’t hurt her pressure sore. I think the foot plate is still a little too high. So, besides the fact that Makayla is sick and not getting up right now, and besides the fact that we are keeping her 100% in bed to heal this pressure sore, we are not using the new wheelchair much until we can get it adjusted correctly.

The next level of adjustments needs to include the whole team together, so we made an appointment to meet back at base campus with PO/OT, NuMotion and PerMobil.

4. BRACES

We are working with Hanger trying to get Makayla a new set of braces for her feet. I don’t know if her feet are just twisting too much now, but it has been a struggle to get the right fit. We picked up the braces this month, but they caused her whole foot to turn red, which is step one to pressure sores, so we haven’t used them again. We need to make another appointment to get them adjusted. Unfortunately, with illness, and the needed wheelchair adjustments, it just hasn’t happened, which gives me anxiety because if we loose the 90 degree angle in her foot, or it twists too much and we can’t get her foot to sit flat, we loose the ability to stand, which is a key element to maintain long term health, to say nothing of all our fight to get the standing wheelchair.

Takin a minute to Vent:

Equipment takes so long to come that Makayla is deteriorating before we can get it, and if we had it right away, she wouldn’t deteriorate ):

I am really struggling with the whole system! We have fought hard to get Makayla what she needs, and the fight is long and dragged out, and takes LOTS of time and attention, which means that, in Makayla’s case, the patient is suffering, when the equipment is needed, literally, for life. The equipment and capability are out there and available, but all the hoops to jump through just keep us from getting what we need in a timely manner that allows it to actually help and do what it was intended to do!

Apparently, our constant fight has given Makayla a lot more help than the norm, which just hurts my heart and frustrates me for those who need this and yet it is aloof to them through a system of blocks and stops unless you have the know-how or iron will to fight for it. Makayla has us to help her, but what about the kids that don’t have someone fighting for them, or the older people who lose their mental capabilities? It’s one thing if there is a lack of invention to help (and I have a list of those), but for the stuff that is available, why does it have to be so hard to get. If it wasn’t so expensive and so regulated, more people could get it, which is a different business strategy but still a profitable one.

The cost of medical equipment is about 600 times the cost of what it takes to make it, so we need insurance to pay the astronomical prices. Insurance doesn’t want to pay for all that, they want to make money, so they dictate what they cover, and that determines what patients get—need doesn’t matter, doctors’ orders don’t’ matter; Insurance rules all. Doctors tell us that they ‘will check with our insurance’ to see what they can do to help us. It’s big business. And business is booming while patients suffer.

One small example:

We were told there is a new device that is just coming out that will be a huge benefit for Makayla!! It works with her current FES system, which means, there are electrode patches placed on the skin that stim the muscles in a way that controls movement. This new unit, as I understand, will be an arm contraption that can be worn like a glove of sorts and is preprogrammed with hundreds of sequences to perform specific tasks, i.e. the sequence of motions needed to brush hair, brush teeth, eating and feeding yourself…

AWESOME!!!! We are IN!!!!

We asked if we could get one.

They said that insurance won’t cover it yet because it’s too new.

We asked how much it costs and if we could pay for it out of pocket?

They said, ‘once it’s released, it will ONLY go to hospitals for PT/OT for therapies.’

I said…so a revolutionary device, that was made for the purpose of helping people like Makayla with everyday needs, can only be done once a week in a PT/OT session, and then the patients go home and can’t perform those functions independently where they actually need them?

They will let us know when it becomes available for purchase to residential candidates, hopefully within the next 5 years…

And people wonder why we are considering a spinal stimulator surgery in Thailand…see previous post (: !!!

5. MEDICATIONS

Infectious Disease (ID) did not come through on the antibiotics (without a fight), here’s the story…

The Effort

In our January post, I reported that there was a lack of communication with ID and we were having a hard time getting the next bottle of antibiotics. Because Makayla was so sick with pneumonia, we were not able to get to our Wound Care (WC) appointment for the second time, see “Illness” above for an idea of what that looked like. I spoke with the ID team, and they were understanding (once we worked through some communication breakdowns) and said that our home nurse could take pictures and measurements and they would accept that for the antibiotic refill. We did as they requested, but no refill came. A couple days before we ran out, I called the pharmacy to see if I missed it. I was told ID denied the refill request…

I tried to call ID to follow-up, and of course, I only got an answering machine…again. When I did not hear back, I sent a message on MyChart, as the nurse instructed me to do when I don’t get a response (she admitted they are having problems with the phone system). I didn’t hear back again and by this point I was getting worried. I sent another message the next day, letting them know this was urgent since we only have 3 days of antibiotics left and we are VIGILANT at not missing a dose so we don’t lose ANY ground (or the bone infection can change forms, weakening the antibiotics affect and extending the time on the antibiotic or needing an even stronger one) I still didn’t get a response. I then sent another message explaining how crucial their role is in Makayla’s care right now since we have no other options except these antibiotics and nowhere else to go to get help. Not knowing what the holdup was or why I wasn’t hearing back, I suggested that if they are concerned about overuse of antibiotics, I would like to try PRP or Hyperbaric Chamber and it would be wonderful if they could help with that (since I never know who to talk to as ‘point of contact’).

I think we would see more improvement if we did more than just an oral antibiotic. I have read or learned about IV antibiotics, or antibiotic injections right into the bone, or antibiotic spacers that can be inserted into the bone, or PRP, or hyperbaric chamber…I think layering multiple options would help us progress so much faster…the SCI center is waiting.

A Call From the Doctor

I received a phone call from the doctor that afternoon! I was so grateful! I thought she was going to help us find a solution or talk with me about my concerns that the meds might not be working, or a plan to talk with orthopedics, or let me know she refilled the antibiotics because maybe we got lost in the system…but no.

To summarize: She called to inform me that I am misusing MyChart, it’s not appropriate to send multiple messages, they have 24-48 hours to respond and if I don’t hear back at that point, I can send another message. I was told to call and talk to the nurse if I needed something more urgent. “Apparently you feel there is a problem with communication” so she told me I am no longer allowed to talk with her nursing staff because they “might miss something” in all my long texts, I am only allowed to communicate with the doctor directly, but understand that she is in clinics so she will call me or message me when she has time, if I need her more urgently than I need to contact our Primary Care Physician (PCP) (who is outside Children's) and she can talk to her directly if she needs to.

What Just Happened?

I was so confused…what just happened? I explained why I sent multiple messages and how no one answers when I call. She didn’t seem to care but let me know she will inform family relations of the situation.

I decided to move beyond this and focus on the point. I asked about the antibiotics; she said Makayla needs to get back to wound care. I asked about the pictures and measurements we sent her already and explained how sick Makayla is, and that Wound Care advised us not to bring her back until she is at “baseline health” again since they are “high” for respiratory illnesses right now. Again, she didn’t give any understanding or help but told us to get her a flu and covid vaccine and take her to Wound Care. I explained that Makayla is not fighting flu or covid, it’s a pneumonia strand. She explained that she tells all her patients, even cancer patients, that they need to get a flu and covid shot and get back to the hospital. I told there are more respiratory illnesses than just flu and covid. But we have two more pressing problems to address first.

1. Makayla’s currently getting over pneumonia and Serratia and she can’t get up.
2. The wheelchair needs to be adjusted so it doesn’t add further injury to her pressure sore.

She can’t get up right now.

Solution....Why?

Her solution was to call an ambulance transport.

Why the push? I learned that ID wants to see us in clinic once a month and they are counting Wound Care as part of that criteria. While I appreciate the allowance there to help us have less appointments, it is still an arbitrary requirement. What does Wound Care do? They measure the wound and take pictures, documenting progress or lack thereof, and scrap or debride as necessary to promote healing of the tissues. That is important! But not more important than breathing…

I just could not wrap my head around the urgency for this visit.

What Next?

She asked me if I am a trained wound care specialist. I told her I am not, but I am the specialist on Makayla and I can update her on anything she needs answers to.

She asked if the bone is soft or hard? I told her it hasn’t changed, but I don’t know how it is classified in the records to explain one way or the other.

She said she needs that information.

I suggested that we talk to orthopedics about that and try again to get them involved. She said the information needs to come from Wound Care.

(I didn’t believe her, so I called Wound Care after this call and they validated my thought—that information is bone status, WC doesn’t analyze or update on bone).

Resolution?

At this point my trust level for this doctor was down and I did not believe she was trying to help or had Makayla’s best interest in mind, it felt like we were somehow caught in a battle of wills.

I asked her about the plan of care, when we first started the antibiotic, she informed us that this would be a 6–12-month treatment. While I was very concerned about the strength of the dose and the length of time, we trusted her to get started--we have not reached the 6-month mark yet, what changed in the treatment plan?

She let me know that I have offended her and her nurses and that I am no longer allowed to talk with the staff.  I said, “wait, I am really confused right now, what offended you?” She said the number of messages I sent and using the term “monopoly” to explain our inability to get help anywhere else was offensive. I apologized and explained “monopoly” wasn’t meant to offend, it’s a fact, and I was explaining how desperately we need their help! I am trying to communicate with the team and I am not getting any response!

Trying to keep my cool I explained that I do not understand how my complaint of lack of communication merits the response that we have less communication? The bigger picture is that we are trying to get to an SCI center. We are now 14 months trying to heal a pressure wound and no one is taking this seriously. The SCI center won’t take us until the pressure sore is healed, what more can we do to heal this wound? Everyone seems to agree that the wound isn’t closing because of osteomyelitis, can we engage orthopedics again and request a bone biopsy? Or maybe start with another MRI first so ortho has updated information to go from?

She granted me a couple weeks extension on the antibiotics with the stipulation that we get to our WC appointment next week. I told her we are trying our best, but there are circumstances out of my control to make any promises. She asked how quickly we can get in for an MRI? I told her I assume the schedule is out a couple of weeks so we will take the next available opening. She said she would watch for our appointment and when that shows up, she will give us antibiotics until the day following so she can determine the next course of action from there. I agreed that is a good plan, thanked her for her call, and PRAYED we can get to the chair appointment, wound care, and the MRI with no problems…

The Problem?

I keep trying to engage the doctors to think differently and help with the bigger picture. Cincinnati Childrens is not a Spinal Cord Injury center, but we have no other choice but to work with them right now. I have tried and tried, again and again to get orthopedic help outside of Children’s but every clinic or hospital I have talked with defers us back to Children’s, within a 2-hour radius! We can’t get out from under their umbrella!

I stand by my description! Cincinnati Childrens has a monopoly on pediatric care in this area. For the most part, that works well. But for those of us who need more, and are not a high enough priority compared to all the sicker or needier patients who come here, it’s so hard to get out from under them. Do I think they are doing it on purpose? No, I don’t. I believe it is easier for the other medical offices to just defer to them rather than to staff pediatric specialties and take on the liability when Cincinnati Childrens is currently ranked #1 Children’s hospital in the nation. And I can’t blame them because from a business standpoint, that makes a lot of sense…but for the children that need more help locally, there is nowhere else to go.

Follow-up…what happened after the phone call?

ID referred us to Family Relations and informed them that I need help with communication. She told our liaison that she cares for Makayla and wants to help her. She let them know that we are not allowed to communicate with the ID department directly any more.

I feel I have become very educated about all things medical as it pertains to Makayla. Do I claim I know all? No way. But do I know all things Makayla? Yes, I do. I am the only person who knows all the details, all the conversions, all the ins and outs of what has been tried and experienced. I don’t appreciate being treated like I am ‘in the way’ of this doctor’s best intentions to help my daughter!

I sent Family Relations every message with a time stamp and a write up of our phone call from my perspective. I asked them to review it in detail and let me know where and how I was out of line.

Family Relations

So…no more talking with the ID team, all communication goes through the family relations liaison. It’s a much slower way to communicate, but I guess it gives me another person to see that battles we fight. And if this is what it takes to get what we need, then I will do it.

Our Family Relations liaison is very nice, but she doesn’t understand medical terminology, Makayla’s condition, or all the communication, roads, and hoops we have jumped through, or all the closed doors to get us to where we are currently. I am now teaching her about Makayla’s case, spinal cord injuries, what we have done, what we need, where we are now, how the hospital system works and how some of the suggestions don’t work the way everyone thinks they do. Phone system aside…Here is just one example:

Doctors, nurses, and multiple department staff keep suggesting we be transferred to Complex Care when they don’t know what to do with us and/or we ask for collaboration between departments. BUT they don’t understand what Complex Care is. I believe they think it is collaboration division for kids who need multiple specialists, but it’s not.

When I talked with Complex Care, they described themselves as “care for complex patients”, not ‘complex care’. They don’t coordinate with other teams or council with specialists. In their own words, they are just a primary care physician (PCP) that gives complex patients a larger appointment slot, 1 hour each, and they provide a social worker at every visit. Other than that, they are like all the other PCP’s out there with no collaboration benefit.

Makayla wouldn’t even qualify for Complex Care if she didn’t have both a trach and g-tube, one OR the other doesn’t qualify for Complex Care, SCI doesn’t qualify for Complex Care, needing multiple teams doesn’t qualify for Complex Care. The ONLY reason Makayla technically qualifies is because she has both a trach AND a g-tube, but since she doesn’t really use them anymore (the trach is capped, and the g-tube is only used for meds when she is too tired to take them by mouth—no more tubal feedings), it is a gray line for her to qualify.

6. Thailand

See previous post!!!!

My Thoughts:

I am studying miracles and I have a lot of thoughts about this subject, so I am going to make this a separate post since this one is now really long (:

I would like to give a special thank you to so many of you! I receive texts and messages sporadically that you are thinking of us and still praying for us regularly. I can’t describe how much it means and how grateful we are for old friends and new friends alike who sacrifice their time and thoughts to our wellbeing, even going on 2 years post injury.

We pray for you too. I regularly ask God to bless all those who pray for us that (you) may receive all (you) need in (your) life, that the Holy Spirit will be (your) companion, and that God will bless (you) with abundance as (you) so willingly and selflessly offering this incredible gift to us.

We believe in prayer. We continue to believe in miracles. And we have come to know through our own experiences that when life is at its hardest, prayer brings an inner peace that comes by connecting to our all-knowing, all wise, and loving Father. This month has been one of great struggle. We feel the prayers of so many in our behalf, for even in our darkest times, the Lord has strengthen us and carried us through.

No pictures this month, we just didn’t take any…