A little bump in the road

With less than 2 weeks to be admitted for his BMT at UCSF, our only goal is to keep Clark free of colds and sickness, as these are the only things that can derail the upcoming procedures.  But even with our absolute best efforts, we couldn’t seem to catch a break for our young boy.

After a great Sunday afternoon celebrating Connor’s 4th birthday, Clark woke up at 10:30pm crying and vomiting, with a fever slightly over 102 degrees. This was a panic moment for us.  Fevers this high generally mean there is an infection. Since Clark has a low white blood count (WBC), he cannot fight off bacteria infections on his own. We called the hematologist, and (as expected) they told us to go to ER in Oakland immediately.

We really don’t like going to ER.  It could be deadly for Clark to wait in the general waiting room filled with other sick patients and furniture covered in germs. Whenever we go into ER with the kids (aka the little germ magnets), we try to avoid touching anything and keep the sanitizer close at hand.  Lucky for us and him, since Clark has a compromised immune system we are put on the fast track after arriving in ER (where others may wait for hours).   With Clark being immunocompromised, we are given a private room (with a door) usually within 10-15 minutes.

As soon as we entered our room in ER, Clark had a blood culture taken. The blood culture determines if he has a bacterial infection, and if so, what type of bacteria infection he has. This usually takes 24 hours to get a negative or positive result plus another 24-48 hours to find out what strain of bacteria it is.  As well, he also received a blood draw for his complete blood count (CBC).  The CBC is to check his WBC count. If his numbers are high enough, he can fight off most infections on his own.  The CBC test generally comes back in only an hour.

After taking these, they immediately started Clark on an antibiotic delivered intravenously through his broviac. They do not mess around with immunocompromised children.  By giving this treatment immediately, his body can start fighting off possible bacteria before even getting the culture test results. As well, if the bacteria is in his broviac line, by putting the antibiotics through the line they can also make it is also clean from bacteria.

Within an hour, Clark’s CBC came back, and his WBC was higher than normal. This was great news ! It meant his body was attacking the bacteria. It meant we could go home after the 1st round of antibiotics, and come back in 24 hours for 1 more dose.

However, as always, there was a catch.  The CBC also showed that his hemoglobin (hgb) was down to 6.4.  The doctors generally recommend we do a blood transfusion when Clark is under 7 g/dL. The low hgb is a complication due to his Aplastic Anemia. While this result had nothing to do with his fever of bacterial infection, it did mean we needed to stay in the hospital “a little longer” to receive the transfusion.  We knew there was nothing little about the stay we were having.

The reality is that it can take some time to get a blood transfusion. There is time needed for the logistics of acquiring the blood for the transfusion, as well as the time needed to do the procedure itself.  First the doctors need another blood draw for confirmation of blood type. Then they need to order the blood from the blood bank, which usually takes a couple hours.  Finally, when they hook Clark up  the transfusion, the process of transfusing usually takes 3-4 hours.

We immediately knew we were not leaving the hospital that night.

Thankfully we have been through this before, so we knew it would be beneficial to request to be admitted into a room on the pediatric floor (rather than staying in the less comfortable ER). And as we expected, by the time the transfusion was complete it was 10am on Monday morning. Patrick and I (and Clark) were all exhausted from the long night.

And then we got more good news… The doctors decided it would be best to keep Clark “just a little longer” so they could administer his 2nd dose of antibiotics.

By the time they administered the 2nd dose, we were finally sent home.  It was 6pm Monday evening.  We had been in the hospital for almost 20 hours!!  At least we were able to come home early enough to give us a chance to play with Connor, have some dinner, and sleep in our own bed.

That is, until the phone rang at 3am with the blood culture result (to be continued…)

Nearly ready to start the transplant

We are very close to the start of the bone marrow transplant (BMT). Officially, the timer will start when UCSF calls us and says they are  “activating” a donor. When we get this call, we will be in a 3 week countdown for the transplant.

We had a tour of the UCSF BMT facilities the other day. It is very interesting in how they have it set up. The room Clark will be treated in is behind another room they call the “anti” room. The “anti” room is a “prep room” where Beth and I will store and eat our food, as well as scrub up and prepare to visit with Clark. Clark will not be allowed out of his treatment room for the entire 6 weeks he is being treated at UCSF.  Beth and I will be allowed out, but we will need to sanitize up to our elbows before entering Clark’s room.

As well we learned that Beth will not be allowed to shower in Clark’s room, but she will be able to use the toilet.  If Clark was potty trained, then this wouldn’t even be allowed. There is concern about spreading outside bacteria by steam (shower) or having him touching the toilet (if he was potty trained).  Beth will have access to a shared shower room that is on the floor.

The most dangerous area in Clark’s treatment room is the floor.  Clark will not be allowed to touch the floor without being on a plastic mat or wearing some type of protective foot gear.  If he drops a toy from his crib, it will need to be completely sanitized before being handed back to him. As you might suspect, plastic toys that can be easily doused in disinfectant are preferred to stuffed animals (which have to be washed). Clark loves fire trucks, and action figures that ride in fire trucks, so we think this is a small blessing.

Clark will not be able to eat any home cooked food.  It will either need to be made by the hospital, or in a sealed package (Larbar is a good example).  After opening a food item, it will have to be eaten or thrown away within 2 hours.  Bethany can bring her meals into the anti room, but not into Clark’s room.  This includes drinking water as well.  There can be no risk of Clark reaching for someone else’s food, and being exposed to foreign bacteria.

The plan of action, looks to be that Beth and I will switch off staying with Clark. Beth will stay Sunday to Friday, and I will cover Friday to Sunday.  That way both Connor and Clark can see both of us over time.

The facilities overall are very nice.  They have many areas designed to allow people of all ages to decompress and de-stress.