Nightmare

6/28 - The day he was admitted.

6/29 - He was so sick.

6/30 - Shortly after his kidney biopsy.

7/1 - Shortly after his IV line was surgically implanted.

Look at that IV line! The line should come out closer to his neck, but it is "tunneled" under his skin to his chest.

7/1 - Brayden's first plasma-pheresis treatment.

7/2 - This sweet gift from God is pooped.

It is 10:20 PM on 7/10. This is Brayden's 13th consecutive night in the hospital and his 19th night here since 5/7. Instead of typing out the play-by-play of what's happened with our little boy, I am attaching an email Tommy's sent to our friends last week. He does a nice job capturing the chaos of Brayden's illness over the past two months.

At this moment in time, we are very encouraged by Brayden's improving kidney function. His creatinine was 3.1 yesterday (down from 8.0 when he was admitted). His phosphorus and potassium levels are within the normal range. Most importantly, his Anti-GBM antibody count went from 72 when the auto-immune disease was discovered on 6/30 to 16 as of last Tuesday (7/5). He will have another Anti-GBM test tomorrow and we pray that this number is close to zero. The nephrology team is monitoring Brayden's hemoglobin levels - his red blood cell count is low and he is near the point where he'll need another blood transfusion. We will learn more tomorrow.

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On Wed, Jul 6, 2022 at 2:58 AM Tommy Bligh <tbligh@gmail.com> wrote:

Hi all:

 

Ali and I feel so blessed by the outpouring of support we've had as we manage through some health issues with our little B-Man (Brayden).  I know we've had a chance to share more information with some than others, so I'm sharing a bit of backdrop on the last two months and what has transpired over the last week.

 

To cut to the chase, Brayden has been diagnosed with an auto-immune Kidney disease called Anti-GBM (Glomerular Basement Membrane).  It is incredibly rare (1 per million, even more rare in children).  Essentially, his body is creating antibodies that are attacking his kidney's.  It is a rapidly progressive disease, but we are hopeful we caught it relatively early.

 

Feel free to glaze over any or all of the information below if you don't want some of the detail.  We feel truly blessed by the amount of people who have reached out directly - whether hearing via word of mouth, or Ali's Facebook post.  I thought I'd lay the backdrop and then what we've managed through the last week to help answer many of the questions.

 

Leading up to last week:

• On 5/4, Brayden complained of pain that sounded like a UTI, we took him to the ER at Overlake and he was diagnosed with a UTI
• On 5/7, after several days of high fevers, we took him into the Children's ER for the first time.  The UTI had moved up into his kidneys and he was diagnosed with a Double Kidney Infection.  He was admitted to the Urology department and was in the hospital until 5/10
• About a week after being discharged, he started spiking high fevers.  After a week we brought him back to the hospital
• On 5/26, he was admitted back into the Urology department at Children's - all signs pointed to an unresolved infection.  He spent three nights and had a CT Scan and other tests run.  Left with more antibiotics
• On 6/7 we visited his pediatrician, who consulted with Children's Urology and Nephrology (Kidney) to come up with a plan
• On 6/18, after seeing a substantial amount of blood in his urine, we went back to the Children's ER for the 3rd time.  He was not admitted.  He had a few tests run and we left with another course of antibiotics.
• Over the course of the next week, he threw up several times (we suspected gag reaction to medicine) and was very lethargic and tired.  We brought him back to Children's last Tuesday, 6/28 and he was admitted to the Nephrology department after some very high markers in relation to his electrolytes and kidney function.

 

The last week has been incredibly trying as we have navigated through the diagnosis and the beginning of treatment.  Tuesday Evening,  shortly after getting moved into our room, the hospital had to call a "Code Blue" due to his Potassium levels.  About 20 doctors arrived in the room within seconds, they added a second IV line, sedated him a bit and started pumping him with meds.  Luckily, Ali was warned beforehand that the severity did not match the protocol she was about to see!  On Wednesday, we met with the Nephrologist, learned this was likely no longer an infection and that his kidney function was not good.  This meant the likely case was either cancer or kidney disease.  We met with oncologists, who reassured us that from the data/evidence they has seen, it was unlikely to be in their preview.  Both departments recommended a biopsy to rule out lymphoma and learn more.  On Thursday, Brayden was put under general anesthetic and had a biopsy first thing in the morning.  By late morning nephrology was walking us through the suspected 'most likely' disease.  By evening, we got the initial biopsy results suggesting this was Anti-GBM, which was a change of course.  At this point the doc told us they would need to put a central line in B's main blood vessel to facilitate the treatment. On Friday, Brayden went back into surgery to have this line inserted.  It went in through his neck and then was tunneled under his skin to his chest, where a double port comes out.  We met with the doc in the afternoon to learn the treatment plan, and started the treatment that evening.

 

Brayden's treatment consists of a) Steroids, b) a process called Plasma Pheresis, and c) Chemotherapy.  Ali and my jaw about hit the floor when we heard Chemo.  The Plasma Pheresis is a daily procedure, where they cycle all of the liquid part of his blood (plasma) out of his body, through a machine.  The machine spins or filters the antibodies out of the blood and returns it.  It is not painful for him, other than the agitation of getting it set up and wrapped up.  The technology is mind blowing.  The job of the steroids and the chemo is to kill the production of the antibodies.  He had a strong dose of steroids through the IV for three days (Thursday to Saturday) and has now switched to a lesser oral dose.  He will have the Chemo 2-3 total times.  The first was late Friday night.  The next one will be in two weeks.  He has now done 5 days of the Plasma Pheresis.  There is a chance he may lose some hair, although it should not be dramatic amounts; we were told today that it likely will not be noticeable.

 

We are now in a waiting game.  This Plasma Pheresis process will happen for up to about 20 days.  We are encouraged by a number of things: 1) the fact that he is still peeing on his own, 2) the fact that his Creatinine level (main Kidney marker) has improved each day for the last three days.  We are far from out of the woods, but there appear to be reasons to be optimistic.  It is a slow process and we likely won't know much for a couple weeks.  We are praying that we are able to rid his body of these antibodies and that his kidney function can recover.  The biggest assistance we can ask for is for help in these prayers.

 

We are not certain how long he will be in the hospital, but it will likely be another two weeks.

 

Thanks again for all of the support -

Tommy