What a Day!

OK so I have to start by saying, seriously this shit actually happens to us. I really am not lying. You wouldn't believe the day I had. I drove to city this morning with my Dad and Philip started screaming half way there of leg pain. There wasn't anything I could do so, we drove for half hour of him screaming in pain. We get there, he gets out of car and is a new kid. Walking fine, no complaints. So we do bloodwork, then run into pharmacy down block to get tylenol to help with leg pain, and of course he has to go to the bathroom but they won't let us use it. Se we had to walk back to hospital for bathroom. Gave him tylenol and the ride home was pretty good but again starts complaining the last few minutes of leg pain. Get to my Mom's and again seems fine when we get out of car. I leave him at mom's for a bit to run errands and she texts me that he's complaining of belly pain and gagging. So I drove right over and he's itching and scratching all over, blotchy and crying in pain and pointing to his chest bone and stomach. I call hematologist and she said it's most likely bone pain from the neupogen shots. No more shots till Monday when they recheck blood. I then call liver team and liver numbers still creeped up a little bit too. Bump up Prograf and hopefully Monday they will go back down with labs. Then my mom starts talking about what he ate  and said he had a bite of a Reese's peanut butter cup. So now I start thinking, itching, belly pain, gagging. He's never had peanut butter before! Hurry up, give benadryl right away, drive to pediatrician. When we get there, they ask if his throat hurts and he said yes, so that with belly pain, they swab for strep throat and whamo strep throat! 
And yup its an allergic reaction to peanuts.
WTF! Why can't this kid catch a break!!!

On second thought...

You would think I'd be used to the merry go round of Philips health by now but it still stings when things change course again and again and we have to find our footing again and again. So when his repeat bloodwork last Thursday came back and of course his neutrophils are low...again (sense a pattern here...lol) I shouldn't feel so frustrated.

So today, it was back to the hematologist to repeat bloodwork and again his neutrophils were lower. Although other number were improved and she feels like his bone marrow is recovering, she decided to start him on neupogen shots. So they gave him his first shot, which he fought...hard. The poor nurse ended up sticking him twice because he kicked so hard out of my hands he moved his leg just as she got it in and it came out. We also had some teaching to do the shots at home. We went to pick up the prescription and of course it needs prior authorization so we can't get the medication until possibly tomorrow if we're lucky. So now we have to go back into the city to get his second shot tomorrow.
We also stopped in quick to visit with his Liver team. Unfortunately, we are STILL trying to get him back into his target range for his FK level(prograf anti rejection medicine) . It keeps coming back low, and his liver enzymes have creeped up just a bit. Hopefully this weeks enzymes will have recovered a bit with a higher dose of medication and not an indication of rejection.
And I decided that I will now return to the city to get his bloodwork on Thursday because labs here take way too long to get levels back, and in turn it's that much longer to fix his dose if needed.

It makes me angry to think all of this is most likely caused by him having back to back to back viruses. 

I have constant emotional motion sickness. His numbers are good, oops now their bad. Oh looking good again, Woops. Nope. Fool you.
I want him to be a normal kid and be able to do things like and with other kids. They specifically mentioned to be careful of the flu and don't let him around people who have not had the flu shot. How can I possibly monitor that? How do I know if all the kids in his class had the flu shot? Or that their parents didn't send them to school sick. The whole things is just so frustrating, but things could always be worse, and we continue to be thankful that he is pretty healthy and so happy go lucky and is one resilient little guy. And it makes me feel bad writing and complaining because he makes you really think about life and how much pain he can be put through and still smile and laugh and make us laugh all day long. As young as he is, he definitely has purpose in this life and watching him makes me strive to be a better person every day for him and Danny and to appreciate the small things.

Dodging a bullet

After Philip's last hospital stay we followed up with his hematologist at Mt. Sinai. His nuetrophil count as well as his hemoglobin remained low and they wanted to start him on a shot called neupogen, to help his bone marrow produce more white blood cells. But they also felt the possible need to explore a little further to make sure his bone marrow was working properly before they started the shots. Although the white cells did increase a tiny bit from prior blood work it still remained low. So when we saw them last week they scheduled a bone marrow biopsy for today and planned to discuss it with Philips's transplant team. So we got a call Wednesday that they discussed it and decided to go ahead and give him the shot and wait and watch before doing the biopsy. Phew I felt much better about that plan. They also mentioned that if he does get sick again they would like us to go to Mt. Sinai instead of Cohens. His prograf levels skyrocket every time we are there and it takes forever to get levels back and we end up chasing the correct dose after discharge. Dan and I had actually discussed that before they asked and we would be much more comfortable there anyway. 

So we got to clinic today and got some labs drawn before they started the shot. While we waited with Philip in the playroom, she came over and sat with us and said "Well I guess all I have to do is talk business with Philip and he makes white blood cells for me. His count is in the NORMAL range!".

Wait, WHAT? LOL His numbers are normal!! No shot?! This is amazing! And wait, He can go back to school?!! Yup! 

When we told him he could go back to school, You could see he was so excited too. Maybe he just fed off of our excitement but he was squealing and talk, talk, talking away. He said mom I'm so proud of you! Which usually means he's excited. I am so excited for him.

I also got a call that his prograf level was low, so we adjusted his dose. I'm hoping that his numbers didn't increase just because his level was low. 

I hope things continue in the right direction and I can't wait for him to go back to school on Tuesday!

Fingers crossed he stays healthy from here on out! 

Guilt, Fevers and a New Year

As the new year begins I can't help but reflect on 2016. It was a scary, exciting, frustrating and fun year. I watched as Philip and Dan get wheeled into a surgery that was sure to be life changing. What we feared for a couple of years was actually unfolding right in front of us. We could move on and Philip could live a more normal, comfortable life. And it has been all of that for him but at the same time, he's had more hospital visits in 2016 than the year leading up to transplant. The itching has been  long gone and I can barely remember waking every hour at night to comfort him. But in its place, immuno suppression has shown us that life after transplant is still challenging but just in different ways. He's been struggling with low neutrophil numbers which make it hard for him to fight infection and keeps him from attending school.  It makes living a normal life a little harder. I am nervous about bringing him anywhere or who he comes in contact with. I thought hospital stays would lessen but most recently found us in the hospital for two consecutive stay with only a week or so break in between. We prayed so hard for Philip to be home for Christmas and were blessed that he was able to be there.
One issue I personally struggle with is a situation that came up this past week. A good friend was getting married in Florida and I was asked to be a part of the wedding. There was no question that I wanted to be there for her so I planned my trip several months ago. As it got closer we prayed Philip would be ok for me to go and luckily he came out of the hospital the week before and he seemed to be doing well. In the back of my mind though I was worried something would happen while I was gone. I had overwhelming guilt for wanting to go away and be with my friends to help celebrate but at the same time felt bad that I was leaving my family in a precarious situation.  Dan and I talked about it at length and decided we too had to live our lives. We can't sit and wait for things to possibly happen and potentially miss other important events in our lives. So I headed to Florida On Wednesday to start  a week of celebrating my friends nuptials. Dan had to work Thursday so the kids would stay at my parents house for the night.  I was having so much fun hanging out with some of my favorite people and then Thursday night right after I went to sleep, I got a call from Dan around 12:45am. I knew immediately what the call would be. Philip had a fever. Well, I've never felt guilt so bad in my life. How could I have agreed to go away and have fun when my poor baby is sick and on his way to the hospital. Guilty for putting my parents in that situation and for Dan being all alone at the hospital. Dan had to leave work and meet my parents at the ER. I must be a terrible mother for doing this. How selfish of me. I immediately started looking for flights back but Dan said to wait a little bit and see what some blood work said. Again all signs pointed to a virus. The wedding was Friday So we decided that I could wait it out and go to the wedding. If I went home I would just be sitting there doing the same thing Dan was. I would be flying home Saturday anyway.  There wasn't much time to make a decision as I was up til 3am waiting to hear some info and we had to start getting ready at 8am for the wedding which I think helped make it a little easier to say ok I'll stay. And it was an amazing day. I was so happy to be there for my friend and to help her celebrate and I will never regret that. I face timed the boys in between and was able to relax and have a great time. Looking back now that I'm home, I don't think it was selfish. I am allowed to look forward to events and want to spend time with friends I don't get to see often. Philip was in good care, they knew what to do if this happened and it played out exactly as if  I would have been there from the beginning. So I flew home Saturday and came straight to the hospital from the airport. We always joke that a holiday is coming so get ready because Philip will be getting sick any minute and no joke, We spent New Years Eve in the hospital this time. This stay has been very similar to the last weeks stay. Headaches, diarreah, irritability, high blood pressure, high prograf levels, dehydration. He is finally starting to act himself and eat something so hopefully we will be able to go home very soon. It is so frustrating that if he was a normal healthy kid, no big deal, he'll just be sick for a few days but any little bug Philip gets, it hits him hard and we get a hospital stay. It can always be worse though, we've seen families that are still here from last visit.
So here's to a happy and healthy 2017! Can't wait to see what it has in store for us!