We are on night 5 in the hospital and the reality of this “hurry up and wait” process is setting in. Everything is pretty routine day in and day out…nurses check vitals, doctors come in and talk, more nurses check vitals, more doctors come talk. Riley is totally content; it truly is amazing how little a baby really needs to be happy…dry diaper, bottle and Mom…that is all. More labs were done today on Riley which basically means more blood draws…this little lady is such a trooper. Friday she slept through an IV being placed and both yesterday and today she barely made a peep during the blood draws, I cannot say enough how fortunate I am for her sweet demeanor. The immunology team will use the results of all of these tests to determine the form of SCID she has and how best to proceed.
Chris brought Presley up again today to visit and also make another attempt and getting a cheek swab to see if she is a potential match for bone marrow transplant. She got really creeped out by the process yesterday but today was a new day and after we talked to her we were able to understand her concerns and do things a little more on her terms. After huddling on the floor playing “doctor” and letting her give us (chris, myself and the real doctor) “shots” and “checkups” for a good 20 minutes she plopped on my lap and was ready for her turn.
Her understanding of this whole situation amazes me, we have done our best so far to remove as much of her fears from it as possible and break things down to her in basic concepts that her little mind can grasp. It has not been easy but given the circumstances she is handling it all very well. We enrolled her in pre-school which she will start tomorrow; we feel it is really important to keep her on a consistent routine and give her something that is all hers, something that will be a distraction from missing Riley and I but also something to help her continue to thrive.
We are now awaiting lab and donor match results, in the meantime we are to simply keep Riley in this room to limit her exposure to any sort of infection and keep her healthy until we can proceed to transplant. This process could still take a few weeks so patience is the name of the game.
Thank you again to all who have called, texted, baked, donated, chased Presley around, etc…over the past week, every little bit helps and we are so thankful.
Oh how much our lives have changed since little Miss Riley entered our world. Born on July 15th after a completely complication free pregnancy and labor she weighed in at 8lbs 9 ounces and measured 20 inches long…she was perfect. At her 2 week check-up everything was looking great, she had gained a pound and grown an inch…our newest little girl was following in her sisters footsteps and growing up just way to fast!
From day 1 she has been an easy baby, she just sleeps, eats and poops…rarely cries, has no preference on where she is to be laid down and is fine with being held by whomever needs to get their baby fix at the moment. Needless to say when my phone rang last Monday I had no way of preparing myself for what I was about to hear. Her pediatrician was calling to inform me that one of the California Newborn Screen tests (routine tests that are done on all newborns in the hospital in the days after birth) had come back irregular…my heart stopped…the conversation went on the clarify that there was a 50% chance that this was the result of a false positive, we were to take in her for a blood draw as soon as possible to either confirm the diagnosis or be told “whoops so sorry for scaring you”. Clearly, we immediately clung to and hoped for the “whoops”.
She received the blood draw on Monday afternoon and we were then told to just wait for a call that would come on Thursday (which happened to be my birthday…happy freakin birthday,right?). Just wait? Easier said than done but we did it, we did our best to go on as normal because with a 3 year old and a newborn you really aren’t left with much time to have meltdowns of your own. Chris and I clung to the idea that we would be on the positive end of that 50% and the 2nd test would come back normal BUT if something was wrong then these were going to be the last 3 days that we would get to spend at home with our beautiful healthy girls for a while and we were not going to spend them being upset. Those 3 days were either going to be the hardest it was ever going to be or just the beginning of a very long road.
Wednesday at about 4 o’clock my phone rang, luckily Chris was by my side as the doctor confirmed that Riley has tested positive for Severe Combined Immunodeficiency or SCID better known as “the bubble boy disease”. The easiest way to sum it up without all of the big words and medical jargon is our perfectly healthy baby girl is without an immune system…her little body is lacking the cells to fight off any sort of infection. That’s the bad news…the good news is they caught it…they caught it before she got sick and so there are options. The odds of a child having this are about 1 in 100,000…California is one of the few states that even screen for this and just started screening in 2010…had Riley been born just 3.5 years earlier we would not have known about her condition until it was too late to be treated. As “unlucky” as we feel being that 1 in 100,000 there is so much more “luck” on our side right now. The doctor who created the test for this disorder happens to be right up the road at UCSF Benioff Childrens Hospital; Kaiser immediately began working on getting a transfer in order for Riley to be treated by the team there. We got to spend the rest of Wednesday and all day Thursday (my birthday) at home with our beautiful girls before bringing Riley up to the city to be admitted to the hospital on Friday afternoon.
We are here now and will remain here as they do further testing to uncover the exact form of SCID she has and how best to treat it. The treatment will most likely be a bone marrow transplant which will introduce stem cells into her body potentionally giving her the ability to create the cells she is missing and go on to build a healthy immune system and lead a normal life. The team here is very optimstic and we simply coule not be in better hands. This is definetely a learning process…in just 3 short days we have met more doctors than I could have ever imagined, we will continue to learn more about what the next steps are as the days go by and we discover more about how little Rileys system can be supported. She has been given an infusion of antibodies to give her immune system a boost while we wait on test results and find the next best course of treatment. As far as a time frame they believe we are looking at between 3-6 months here in the hospital should treatment be successful. As a family the following days, weeks and months are going to be much different than the carefree life we knew before but we will be just fine and come out on the other side of this stronger. We are so fortunate to have such a huge support system, between our family and the few friends that have heard over the past week everyone has really come together and is making the transistion into our “new normal” much more bareable.
It is so hard to keep everyone up to speed on what is happening and as I’m sure anyone can imagine telling the story over and over is hard to do. Last year about this same time I used Caring Bridge to keep hundreds of people informed about my dear friend Chris Jones’ hospital stay and it was such a huge help for both him and all those who love him to stay on top of his recovery…while I loved the site and how much it helped during those long months I did hope that I would never need to use it again…oh well 🙂 I will do my best to update and share information as we continue on this journey that is the life of little Riley.