Learning to walk..again

Hello all!

A few days after our last update we embarked on an unexpected stay of 50 days in the hospital that covered Thanksgiving, Christmas and New Year's and encompassed emotions, of which we have never experienced- from dark to darker, to darker still and then finally a beam of light began to shine in the form of a wry infant smile and we emerged once again; stronger and more determined to make him better than before and ready for future challenges (of which there will undoubtedly be).

First, the executive summary followed by a more detailed account.

• On November 16 we were admitted at the hospital for possible infection of Brennan's peritoneal catheter. We went home on November 18 with no adverse effects and no concrete diagnosis relating to the redness around the insertion site of his catheter.
• After results from earlier tests indicated a potential bacterial growth from a culture taken during our first hospital stay we returned the day before Thanksgiving for a follow-up sample and found evidence of infection in his peritoneal cavity (peritinitis).
• November 24 we are admitted and begin treatment for bacterial infection origin unknown at this time.
• A course of antibiotics is begun and he experiences severe diarrhea while he is also placed on IV fluids to balance fluid loss.
• Insertion of an enternal gastric feed tube through the nose to receive better nutrition.
• After 5 days the culture produces the same unknown bacterium.
• Dr. P asks Dr. R of infectious disease expertise to stop by. He looks at Brennan's catheter site, presses on it and pus is expelled-the catheter itself is infected.
• One hour later, Brennan begins a septic reaction and goes into shock; and suffers a seizure.
• We are moved to ICU; Brennan does not sleep that night, just staring blankly at the ceiling.
• Infectious disease doctor begins a more aggressive approach of antibiotic treatment and has a general idea of the nature of the bacterium.
• Surgeons remove infected catheter the next day.
• 2 days later a hemodialysis catheter is inserted into his jugular vein since his blood chemistry is beginning to deteriorate. He undergoes his first course of hemodialysis treatment.
• 2 days later Brennan suffers a seizure; MRI shows signs of damage from a stroke. He does not smile or show any emotion. 
• Bacterium is finally identified by a lab in NY; treatment with antibiotics will last for 6 months.
• 2 weeks after stroke- Brennan smiles at one of his favorite nurses for the first time.
• He begins to move extremities more, but not his right side.
• Just before Christmas, we are moved to the recovery floor. He now weighs 15.5 lbs.
• Christmas day in the hospital he begins to sit with help and scoot, still clenching his right fist.
• We are discharged on January 8, he weighs 21 lbs and we go HOME!!
• We return for scheduled medication infusion through hemo-catheter on Jan. 20; Brennan suffers another seizure.
• We are admitted again and hemo catheter is removed.
• MRI shows no evidence of stroke from recent seizure.
• Home again on January 23!!
• Brennan begins to walk again....January 28!!!

While these past months have not been easy, we are blessed with 2 beautiful boys and not many parents get to see their child walk for the first time-twice.  

In mid-November, we noticed a red appearance and some clear discharge from the insertion site of Brennan's peritoneal catheter and went to the hospital for tests and were admitted for a couple of days, but he showed no outward signs of infection and remained his jovial self. Blood cultures were taken and incubated with no immediate results. We went home and began a course of antibiotics we administered at home through his dialysis procedure.

Nearly a week later, our dialysis nurse, Sheree, called and informed us that the culture they took produced a growth the pathologist was not familiar with. On the day before Thanksgiving, I loaded up the car and made the trip to Miami with Brenny and my mother in law for what, at the time, I surmised would be a quick blood test and sampling of his peritoneal fluid and then home and hopefully beat the holiday traffic.

Except when Sheree pulled the peritoneal fluid from his catheter it came out cloudy. A sure harbinger of infection. Confounded, my jaw dropped and I felt my face go hot and flushed. Peritinitis is a serious matter and requires antibiotics to treat. We had just completed a course of dialysis the night before and the fluid collected from that was clear! How could this be?

Dr. P was present for the sampling and she immediately went into action securing admission for Brennan and charting a course of treatment. At the same time, Brennan's body temperature literally began to increase while I held him in my arms as the infection had finally begun to manifest itself completely in his body.

Johely hurried down, leaving work early and we began our 50 day stay in the hospital. I told her to pack for a week, a gross under estimation on my part. It was determined that Brennan was not taking in enough calories and thus would require an enternal feed tube through his nose into his stomach.

For the next week Brennan's condition did not improve. Lots of diarrhea and fever but he had energy and seemed like himself. Because he was not getting better coupled with the unknown species of bacterium, Dr. P felt compelled to call in a infectious disease expert. Dr. R. just happened to be on the floor late one Tuesday and Dr P noticed him walking down the hall and flagged him down and gave him a quick synopsis of Brennan's status. All of the blood and peritoneal cultures were taking 5 days to grow the bacterium in question.

Dr. R came in to see Brennan and examined the catheter site and pressed on it and expelled pus. Prior to this, one doctor was ready to send us home the next day! Earlier in the day we had noticed Brennan shaking every now and then, which we believed to be a product of his periodic fever. Now, looking back, he was in the early stages of sepsis with the shaking. Had we gone home...

Dr R's examination hastened the release of the toxins from the infected site and set into motion a cascade of calamitous events that would result in the very unfortunate instance of a medical "perfect storm" that threatened Brennan's life. A few hours later, Brennan went septic with shock and experienced what we now believe to be a seizure in addition to the sepsis. That night, we were moved to the ICU and scheduled for surgery the next day to remove the infected catheter.

The sepsis and seizure left him listless and sleepless. He just stared at the ceiling and slept in 5 to 10 minute spurts, not moving. With the infection and antibiotics Brennan had kept us up the previous 2 nights, in alternating shifts, changing his diaper trying to stem the onset of a serious diaper rash. This would prove to be a key factor in the perfect storm he was experiencing, despite being on IV fluids.

A couple of days later, with his lifeline for dialysis gone with the peritoneal catheter and his blood chemistry beginning to show signs of decline; a very skilled surgeon, Dr K, inserted a hemodialysis catheter into his jugular vein. Hemodialysis is a very serious form of filtration and is typically not performed on babies.

After catheter insertion, that evening, Dr P joined us in a darkly lit ICU isolation room for an initial course of dialysis. A large portable dialysis machine was brought in, not necessarily made for babies this small with concerns of pressure and clotting. After making the appropriate connections and safety checks Johely and I looked on, as our son's blood left his body through a clear tube and entered this machine with spinning components on the front and slowly returned to his body.

Our fear at the time, beyond the inherent risk mentioned above was that patients on hemo, have a reduced success rate of transplant longevity. And with him being so small, an uncertain future was in the offing as Johely and I were overcome with sadness and exhaustion as the dialysis machine whirred and filtered and we continued to watch as Brennan's blood traveled the circuit from body to catheter to machine and back again.

Back home, Kyle was in the capable care of my Mom and sister (and ultimately various combinations of Aunt Mary, cousin Lauren, Aunt Leann and Jamie Lynn) while trying to maintain some sense of normalcy. At his school, his teachers, Mrs S and R kept a watchful eye over him and kept us informed of his activities. Mrs S and her husband made numerous trips to come down and visit and deliver care packages during our stay.

On Saturday night, December 3rd the perfect storm within Brennan's body reached its apex and near midnight Brennan had a seizure and he was hurriedly brought down to radiology for a CAT SCAN revealing a blood clot in his brain. The MRI the next day, revealed signs of a stroke.

The news was somber. I turned to Dr P and asked her, "will he be Brennan again?" Yes. She assured us he would. The time table they offered was along the lines of a year or two.

Turns out Brennan is atypical in his kidney condition in that he frequently urinates, most End Stage Renal patients do not have this capability. This coupled with the severe diarrhea, sepsis, and small veins (most kidney patients have this condition) led him to suffer a stroke from the blocked vein in his brain. That night, Katy and Vivian from the ICU closely monitored Brennan's blood chemistry and fluid intake and output as Dr P was phoned every 2 hours with updates, tinkering with IV solutions and apportionment.

In the interest of maintaining normalcy for Kyle, we decided I would go home and return to work while Johely stayed in the ICU with Brennan. All total only leaving his bedside about 6 hours one night in the 50 day span to attend Kyle's Christmas program.

A bevy of doctors were now tracking his progress; neurology, hematology, infections disease and of course nephrology. As the days in the ICU passed, it was obvious that a blood transfusion would be required since his hemoglobin levels were now below the acceptable limit. Yet, another concern with transplant in mind since the introduction of a foreign blood source can lead to the production of antibodies. For this reason, since Johely and I are compatible donor candidates for him, we cannot donate blood to him since if he were to receive our blood now, he would build up antibodies to our blood and then upon receiving one of our kidneys the possibility of rejection could be increased.

About 2 weeks later, Sheree came to visit Brenny and he flashed his first smile since the perfect storm. He was responding to treatment. The light in our situation began to shine once again.

Finally, the bacterium was identified in a lab in NY as Mycobacterium cholenace abcessus. Dr R was correct in his first instinct concerning the bacterium and his course of treatment had begun to defeat the bacterium and Brennan slowly improved. By this time, his weight had gone from 18.6 lbs down to 15.5 lbs and he was still very weak.

Soon, just before Christmas as his condition continued to improve Brennan was moved to the floor for recovery and we were out of the ICU. We purchased a small Christmas tree and brought the gifts down for the boys and spent the holiday with Kyle and my Mom in the hospital room. At this point, Brennan was beginning to sit up for very brief periods of time. He drank water from a syringe sparingly. 

A week after New Year's a plan was formulated by our doctors to allow Brennan recuperate at home. Since that first night after hemo catheter insertion, Brennan did not require dialysis! The feed tube was providing adequate calories and volume resulting in his kidneys being aided by the volume of formula and improving his blood chemistry. The solution to pollution is dilution and the feed tube was his saving grace and his crude medium for dialysis!

He was receiving antibiotics intravenously every couple of days, although we were having trouble keeping IV lines in him due to his small veins, we were allowed to leave and return on an out-patient basis and the antibiotic would be infused through his hemo catheter since it was not being used for anything.

On January 21st after our next to last infusion (another 10 minutes and we would have been in Miami traffic), Brennan suffered a seizure, landing us in the hospital for the next 4 days. During this episode, I pleaded with him to fight while my mind raced and thought, "here we go again". He was just starting to walk again.

As we entered the ICU, again, he awoke after about 45 minutes although nurses told me he would sleep  4 to 5 hours due to the medication. He immediately began trying to rip off the oxygen mask they had placed on his face. We all sighed a very, very heavy sigh of relief.

A follow up MRI revealed no signs of a stroke and we returned home a few days later, now on anti-seizure medicine. The thinking is that since his brain is still recovering from the stroke coupled with the antibiotic, it led to the stroke. Thankfully, the hemo catheter was removed during this visit. Brenny's Beans are on their own!

As for the source of catheter infection, we will likely never know since bacteria is everywhere. As a precaution we will install water filters and a UV light on our water main. One key component of infection is the presence of a site such as plastic catheter for bacteria to colonize. Without that, the likeliness of infection is greatly diminished. Hence, with the success for nutrition of the feed tube, we removed the hemo cath

It was our feeling that we would give Brennan my kidney ASAP. However, with his small veins, it is unlikely at this juncture he could supply enough blood to my kidney, so we wait for the "call" on the list.

Just last week Brenny weighed in at a whopping 22.7 lbs and his blood work looked good. We will continue to hope and pray.

Cherishing every moment with our boys now more than ever, the thing that has moved us is the unremitting kindness of family, friends, nurses, doctors and strangers. It is difficult to put into words what this means to us. Perhaps a simple thank you will suffice. So, thank you to everyone who has been there for us. We are deeply indebted for your prayers, help, love and support!

I would be remiss if we did not mention our fabulous employers and co-workers who have displayed unyielding support and kindness through these trials. Thank you, as well! 


The Jackson Brothers (look at that tongue)!