Help Sky Allison through her Heterotaxy journey

The hardest lesson for me in this is understanding when it’s time to let go and receive the help that’s been offered. There are many more logistical and emotional challenges in play this go around.

I am in need of help again to keep Sky close to the care she requires and it feels like a failure on my part. I’m learning this part will never feel acceptable to me but I will do anything for her, anything.

For the first three years of her life I counted on and received so much financial and emotional support. I worked hard to pay every but forward, I gave doula support and classes away to families in need, and have done my best to bank good karma for the future.

The reality is Sky is at a crossroads. It is not safe to go home until a few things get sorted out.

Sky was born with RAI heterotaxy and multiple complex cardiac defects. Before birth I knew she would need multiple surgeries on her heart and gut. I knew it would be impossible for our family to face this alone. Before her birth 6 years ago I started a crowd finding page for her to help with the many logistical costs and missed work so I could focus on being the best mom and advocate I could be.

After 4 open heart surgeries, a brain bleed, a femoral arterial clot, a perforated bowel, a volvulus, multiple post op complications and hemorrhages, a colostomy bag, 8 cardiac Caths and more- she found her longest in between. She was largely stable with no major emergencies. She has continued to, and always will need health care out of state due to the complexity of her many organ defects, but we can manage that, and  so I shut the page down, thrilled to be in a place where I could pay forward all the kindness and support we were given in the form of doula support, child birth classes, lactation support for low income families in need. 

I never thought I’d be back here, needing to ask again for support for Sky’s journey.

 

On 1/9 Sky woke up screaming in pain. She started vomiting. I spent the night monitoring her vital signs- which were going crazy- and applying heat to her belly, and carrying her back and forth to the bathroom for a warm bath that seemed to help only long enough for her to fall back asleep. She was also dealing with 3 red angry areas on her chest where she had been wearing heart monitor leads since her last surgery on 12/10, where it was discovered that she was going in and out of junctional vs sinus rhythm for sustained periods of time. I move them every other day but there is only so many places to rotate to. She had been complaining of epigastric pain for weeks, I thought it was her reflux. Or symptoms from her heart, she also complains about chest pressure and hard ‘beeping ‘ in her heart. Until this night. Then the alarm bells started ringing and I grew more and more certain that she needed to go to the ER.
I got in touch w peds when they opened. I was on hold for 27 min, then was told they no longer have triage nurse on days. I left a urgent message for Dr Brand,  He called back and said to get her to Prov. 

So. 

I was right.

I wish so much I could be wrong about these awful feelings I get about her. The absolute dread as I watch it unfold has given me nightmares for years. 

Sky was rushed to the hospital weak and pale with a distended belly and still unable to keep anything down. Her vomiting had become intractable, meaning that she would retch for long periods of time without stopping. In the ER a CT was done and found evidence of multiple intestinal blockages.they were hiding under her liver that spans her whole abdomen.  We were in the ER for almost 9 hours and then put on a plane to Seattle Childrens. 

about 4 hours after arrival, Sky was taken to the OR and endured yet another major surgery where multiple bowel obstructions along with a constricted bowel, fixed loop obstruction and a collection of scar tissues that was unable to be released due to her unique vascular anatomy was located. Her platelet/bleeding disorder caused enough bleeding that the surgeon was uncomfortable with continuing to release the area where her stomach meets intestines because of her unique vascular anatomy and bleeding. He told me he believes that he released enough to solve the problem, but for every adhesion that is released, more will form and increase potential for future obstructions. Sky was incredibly lucky to have not lost a great deal of colon and small intestine through this. Last time she was not. 

A few days into a very rough traumatic recovery, I received her halter monitor results that shows sustained bradycardia both symptomatic and not- occurring multiple times over the 30 days that she wore the monitor. I don’t know what this means for Sky, but typically it involves  a pace maker.

Sky needs to stay in Seattle throughout the early post op period after discharge for follow up, and she is due for a cardiac neurodevelopmental evaluation here as well, and then needs to travel back to Phoenix to meet with her electrophysiologist/cardiologist, GI and nutrition as well as hematologist.

I am simply not capable of doing this alone here anymore. Once she is discharged, I will need to find a place to stay where I can continue to keep her safe from exposure to covid, travel to her appointments and monitor her for complications. This being her second major gut event, the risk is very high that she may end up with absorption and digestion issues. She’s gone 7 days without being able to eat or drink. She’s had 12 IV sites blow in the last 6 days and is covered in bruises. She’s wearing cardiac leads, a pulse ox, has a long horizontal abdominal incision that was cut into the one that was there before- the neuropathy burns and itches and makes it hard for her to get comfortable she’s also currently experiencing (mild) opiate withdrawal symptoms because her pain was so high for so long. She bled enough to be symptomatic for excessive blood loss- she’s dizzy, weak, unsteady. She’s also growing stronger every day in spite of all of this, she’s smiled and participated in her care. She’s sang songs to me and told nurses how nice/pretty/silly they are. She’s six years old and she finds a way to smile and hum when I brush her hair and snuggle her through all this. 

It feels like she never, ever gets a break.

This was scary, I’ve almost lost her multiple times but this is the first during a pandemic when hospitals everywhere are overwhelmed with staffing issues and Covid cases. Where a viral infection puts her at very great risk but there is no way not to risk exposure when accessing health care. Health care that has been delayed over the last two years.

This is also the first time her siblings and herself have been old enough to understand how fragile Sky’s/her  health really is, and how quickly something simple like a tummy ache or throwing up leads to a mad rush out of the house and separation and surgery.

Sky asked for her sister and brother to come. She asked for her Dad, and she’s begged me for steak just about 20 x a day all day long for when she can eat.

Its different this time. Shes not a baby. She’s not an independent but distractible toddler, Sky is a little girl coming to terms with a body that has already failed her so many times. It’s covered in scars. It’s covered in tubes and bruises.  She’s been screaming out things like Let Me Out Of This Body! and wailing help me PLEASE while flailing until she hurts herself.

I am not able to eat around her. Any good smells set her off and I can’t see her hurt or suffering any more than she already is. I feel so incredibly helpless. Last emergent gut surgery had her scratching and attacking me to get to my chest. She was still breastfeeding for most of her calories. No one, and no child should ever know the hunger and fear that have wounded this child. It’s… horrific. 

The magical power I had of just needing to open my arms and hold and rock her or do as much of her care as I can- a few days ago I removed her catheter at her request-has dimmed and feels useless in the face of her medical CPTSD, and mine has had me crying and pacing and overthinking every decision.
and remembering, I have held her through this great lasting hunger and hurt before, and I managed only because I asked for help and got it.

This is such a tough time for everyone. I hate needing to ask. I just don’t know what else to do, we JUST got home from her last surgery. Please only donate if you are not burdened, and please know that sharing this and or sending her light and prayers are also very much needed. As always, the many messages and comments are so very appreciated and dearly held. She has loved me reading them all to her. Either way, I’ll end this the same way I did the last one, I promise to pay every bit received forward, for as long as it takes to return all the support back to others in need. Thanks for staying with us, this has been the most incredible journey of my entire life, but I’m honored to show up, to hold space and to do all I can to carry her through it