Home Again

We were discharged last night.  It’s nice being home.  Before being discharged, Timothy had a bone marrow aspirate and biopsy.  We are still waiting on the results.  As soon as Timothy woke up from the anesthesia, he ate like a madman.  Usually, you wait until you can tolerate water or juice then afterwards you are allowed to eat.  Well, Timothy could not wait.  He devoured 5 chestnuts (whole) and about 5 walnut pastry balls (most of you know what I am talking about, right?) at the recovery room.  And as soon as we got back to our room, he ate 2 slices of sausage pizza, couple bites of hotdog, and 3 whole tangerines.  Yes, he was very hungry.  He was very happy afterwards :). 

Timothy stuffing his face at the recovery room… maybe 5 minutes after he woke up.

Many of you are wondering how he is feeling and we are so grateful for your concern and prayers.  Even on the day Timothy got admitted, he was happy and skipping into his hospital room.  And when we were told we could go home, he started crying and wanted to stay longer.  So, he was “feeling” fine then and now.  The concern was his counts.  He went in with Hgb of 5.5 and platelet of 15.  (normal Hgb for Timothy is above 10 and platelet 200-300).  He went in with anemia and thrombocytopenia.  With the blood and platelet transfusions, he left the hospital with Hgb of 8 and platelet of 47.  Still low, but much better.  Now, his body needs to respond to the therapy (IVIG) he received and produce more and not destroyed them.  Good news is his reticulocyte count went up from 5.4% to 7.2%.  This just means Timothy is producing more red blood cells.  We are still on hold for steroids.  Yay!  The plan is to wait and see what his body does.  We are going in for labs on Thursday and an appointment on Friday.  Hopefully, we will have all the results by then.  Thank you always for praying and showering us with your love.  We are forever grateful…

Readmitted @ CHOC

We had our blood work done today.  Timothy’s counts went down again.  Additionally, the Coombs test came back positive (which was negative a few weeks ago).  What this tells us is that his body is destroying his own red blood cells.  Also, he is not producing enough either.  With these results, we are back at the hospital.  The plan for now is to boost his immune system a bit (with IVIG), probably get blood and platelet transfusions, get a bone marrow biopsy and start on steroids.  Besides his pasty coloration and the bruises, he is totally fine.  Good energy, eats well and is playful.  On our way to the hospital, I asked him if he felt better and he responded by saying that he is not all better and he is still sick.  He didn’t fuss or complain about being admitted and staying at the hospital.  I guess he knew he needed to be here.  We ask for your continued prayers.  It’s almost 11 pm and we are still waiting to get our chest x-ray and his peripheral IV line in.  It’s been a long day.  Thankfully, Timothy is still in good spirits. 

Hope and Clarity

Kids have so much hope.  They don’t seem to dwell on the past, but live in the present.  This is true of my Timothy.  For about a month and a half, his platelet count has been low.  FYI, here’s a quick definition of platelets from the web…“Platelets are irregularly-shaped, colorless bodies that are present in blood. Their sticky surface lets them, along with other substances, form clots to stop bleeding.  When bleeding from a wound suddenly occurs, the platelets gather at the wound and attempt to block the blood flow.”  With low platelet count, you get bruises very easily.  Yesterday, while Timothy was playing, he tripped over himself and fell on his face on our laminate floor.  And immediately, this is what we saw:

With a normal platelet count, this would not have happened.  For a kid with fairly high tolerance for pain, this fall would not have bothered him.  But last night, he was clearly in pain.  As his chubby hands tried to cover his wound, he started screaming in pain.  So sad.  But within a few minutes, he was totally fine.  All day today, he played as if nothing had happened.  As I studied his behavior, I could not but compare how I would have reacted if this happened to me.  For fear, I would probably stay put and feel “scared” to do anything.  Timothy on the other hand, ran around, laughed and played, not letting his “condition” restrict him in any way.  He just lived, not thinking about anything. 

I need to do that.  Yesterday’s appointment showed his platelet and hemoglobin counts have gone down again.  The good news is that the doctors are still not concerned and told me not to worry.  We are still trying to figure out the cause and to treat it accordingly.  Our CHOC doctors will consult with TCH doctors to figure out a plan.  There’s a talk of steroids again… please, please, please pray that we won’t go that route.  Please.  All I think of are the numbers and the possible causes/reasons for Timothy’s current state.  And it makes me dwell on the unknown, building frustration and desperation.  I need to be like Timothy and just live.  Live today.  One day at a time.  Faith and trusting in God seem impractical when I am in the midst of worry and anxiety.  I have been praying desperately, more like nagging, for Timothy to be fully well.  These transplant hiccups are expected, but hard to accept because you want your child to be THE one who sailed through all the setbacks.  So when things like this happen, I am at a loss.  I think I put on a pretty good front for the most part, but in the quietness of my heart, turbulence and chaos exist.  This past Sunday, I was reminded that I need clarity.  I need to pray for clarity.  What a timely reminder… Thank you.  I will keep you posted.  But in the meantime, I am going to try and live each day to the fullest :).

to CHOC

Timothy has been feeling much better since my last post.  He is not his 100%, but much better.  His platelet count seems to be stable along with his hemoglobin, which is not bad but it’s not where it should be.  We are praying that his platelet and HGB counts go up on its own without any intervention.  Especially his platelet  count.  It is significantly lower than where it should be.  So he has a lot of bruises these days :(.  We also stopped his cyclosporine!  Yay!  This is his immunosuppressant he has been on since his transplant to prevent GvHD (Graft vs. Host Disease).  Hopefully, all his excess hair will thin out :).  Currently, he is on 1 med and we are weaning that as well.  Please pray that his body will adjust well to being off cyclosporine.  Thank you. 

Since returning from Houston, we have changed our care to Children’s Hospital of Orange County (CHOC), from CHLA.  There were many factors involved in this decision including our doctor’s input.  We are very happy to be back at CHOC :). 

A Year Ago Today

It was a year ago today.  A year ago today, we went to the ER and Timothy was admitted.  It seems like it was a long time ago and at the same time, I can’t believe it’s only been a year.  The first 6 months of Timothy’s life seemed like forever.  Days, weeks, months would drag.  Here’s a picture of his enlarged lymph node on his right side of his neck.  This picture was taken after his hospitalizations.  He had another slightly larger one on the other side.  This symptom was what led us to the ER, plus the fever at age 2 months.

After his initial hospitalization of 10 days, Timothy was admitted to CHOC two more times within a couple of weeks for fever.  And each time we were sent to the ER, the feeling of both fear and dread was overwhelming.  The thought of spending the night at the hospital was torturous.  Because being admitted meant Timothy being poked and prodded for an IV.  By our second trip to the ER, both of his veins have collapsed on his hands and one on his feet.  They were running out of options as to where they can insert the needle.  They tried calling in the “experts”, the NICU nurses and other specialists, but it was to no avail.  Timothy has very small veins and it was hard.  And sometimes, it would clot. 

What I remember from his hospitalizations, among many memories, are:

1. Incredibly nice nursing staff (well almost all of them, and we saw a LOT of them).  It was comforting to hear their kind words and their willingness to help.

2.  I don’t know if' it’s all the hospitals or not, or maybe just in CA, but they do NOT have even number diaper sizes.  Very odd.  St. Jude had Huggies and CHOC had Pampers, but both had sizes 1, 3 and 5 only.  And of course, Timothy was size 2 and would often leak.  I just ended up bringing my own.

3.  NPO.  Fasting before certain medical procedures.  This was very difficult since Timothy was only 2 months old and was still nursing pretty frequently.  NPO for him before his chest/abdominal ultrasound (4 hrs. or so) and NPO before his CT scan (a few hrs.) and NPO before his biopsy (8 hrs.).  Fortunately, all these procedures were scheduled first thing in the morning, because of Timothy’s age.  Timothy was sleeping fairly well at night (since he was awake most of the day due to many many many interruptions from nurses, doctors, etc.…)  But of course, his vitals HAD to be taken, even in the middle of the night, thus waking him up.  And he would want to nurse.  But during NPO, I couldn’t.  And I couldn’t calm or console him any other way.  So he would just cry.  That was hard and frustrating.

To fast forward the rest of the year, Timothy had some bowel inflammations.  This is somewhat common with CGD patients.  They tend to develop Crohn’s disease like symptoms.  So Timothy would have very EXPLOSIVE poops everyday everywhere.  Here’s a picture of his you know what that leaked out of his diaper and pants while he was playing in the exersaucer.  Sorry if the next two pictures are TMI. 

And with the bowel inflammation, he would have blood and mucous in his stool.  Again my apologies for the not so pleasant picture.

So all in all, it was quite a year.  We are so thankful that many of his earlier symptoms have subsided for now.  He is active and happy.  Here’s his sad face… so sad, but still so cute :).

The Diagnosis

It was a chilly and calm evening. After we woke our baby, we decided I would take Timothy to the ER. The short drive was filled with confusion and unknown anticipation. I was calm because I didn't know what this trip would entail. There was hardly anyone there so we saw the on-call pediatrician right away. After a routine blood test, urine collection, and x-ray, we waited and waited for a while. Timothy would fall asleep in my arms peacefully throughout our wait. I loved those hours where I HAD to hold my baby and just enjoy his serene slumber. Poor kid was only 2 months old and had multiple procedures done already. When we finally talked to the doctors again, I was informed that Timothy had pneumonia. There were some lung lesions and elevated white blood cell (WBC) count. Because of his age, we were admitted for a night to monitor his condition. It was 1 am at this time. When we were transported to the pediatric unit, the protocol is to strip the patient down to get the most accurate weight, height and other routine stats. Timothy did NOT like being awoken and naked at 2 am in the morning. They had to insert an IV for the antibiotics. I didn't understand this. Why couldn't they give him an oral one? For the first time, I saw fear on his face and heard terror in his cry. It broke my heart. I really wanted to lash out at the nursing staff for doing this when all the stats were collected while we were in the ER only a few hours earlier. But I knew they were doing this to take care of my son the best way they new how. When all was done, we were left to sleep... finally. But I didn't have the heart to put Timothy in the hospital crib. It seemed so foreign and unfamiliar. So I held him. It was suppose to be only one night.

The next morning, the attending pediatrician stopped by. She updated me on his progress and checked Timothy. Apparently, the ER doctors didn't mention the enlarged lymph nodes to her. And she was very concerned about them. Newborns should not have enlarged lymph nodes like that, she said. She wanted us to stay another night for an ultrasound of the lymph nodes. I sighed. My husband was shocked. I hadn't seen my daughter that morning and I missed her. My husband and I switched off for a few hours so I can gather some stuff. That evening, Timothy's fever spiked even though he was on antibiotics. So the doctor wanted us to spend another night to monitor him with additional antibiotics. With the ultrasound result being inconclusive, and his white blood cell count extremely elevated (antibiotics not working), coupled with his 2 large lymph nodes, the attending pediatrician consulted with the Infectious Disease (ID) doctor. He asked me a slew of questions. In conclusion, he had nothing. But he was obligated to mention that with Timothy's symptoms, it could be leukemia, though he said it was unlikely. My heart sank. Everything seemed to spin around. A few hours later, the attending pediatrician decided it would be best if we were transferred to CHOC (Children's Hospital of Orange County). That's when I started to weep. I was so strong until then. I could not control my tears.

It was the same protocol there. We arrived pretty late in the evening, but Timothy had to be stripped and they had to collect all the routine stats. A resident, several interns, a nurse and nurse assistant all came by with lots of information. As soon as the resident saw Timothy's records, he said he has been misdiagnosed. He does not have pneumonia. What?!?! was going on. And to make it even more disheartening, they couldn't properly diagnose him because he has already been on antibiotics. It would have been easier if they saw him when he had a fever. What was I to do? I felt helpless.

From that evening, Timothy was at CHOC for over a week. He had several x-rays, another ultrasound, CT scan, almost daily blood draws, and finally a biopsy. He saw several ID doctors, hematologists, pulmonologists, and finally oncologists. This was in addition to the attending doctor and his residents and interns. Nurses changed every 12 hours. Needless to say, we met a LOT of medical personnel. Even when we were discharged, the doctors did not know what was wrong with Timothy. Every doctor who came in to examine Timothy always had a surprised look. His charts betrayed his appearance. On the outside, he "looked" and still "looks" very very healthy. Above average in weight and height, he looked as if he was thriving. The doctors did not understand. So for over a week, every day, I would get an update with no new information. The only thing the biopsy revealed was that the enlarged lymph nodes had no pus and was positive for staph infection (MSSA, not MRSA). His lumps were granulomas.

4 days later Timothy was discharged, we were told he has CGD, Chronic Granulomatous Disease. It's a rare genetic primary immunodeficiency disorder. When we heard this, we were relieved, finally there was a diagnosis and it wasn't cancer. It would take months for us to really understand what this all means for our family, especially Timothy.

@ St. Jude Medical Center




@ CHOC towards end of our stay