I have literally sat down at least a dozen times over the past few weeks trying to write a blog post. I actually have had a few different topics running around in my head that I have been trying to get on paper (computer) but time just gets away from me. I truthfully have NO time and when I do have some time, it’s spent doing tedious tasks and/or sleeping because I am beyond exhausted pretty much most of the time. Now, I’m not saying any of this to complain because that is the furthest from my mind. We all have to handle the cards we are dealt and honestly I am glad I was dealt this card. Don’t get me wrong, my son’s diagnosis sucks and this isn’t the life any parent asks for, but I still believe that everything happens for a reason, and Logan chose me to be his mom for a reason.
So let’s start there….the time thing. I have been asked numerous times, “What do you do with all your free time?” You would honestly think that not working and basically allowing other people (nurses, patient care assistants, etc.) to take care of my son would allow a decent amount of free time…NOT!!! This couldn’t be further from the truth. There are days that I have no idea where the time went then there are other days (very few of them) when time goes by so slowly. I have lots of ambitions and a list of things I would like to accomplish during my ‘free time’ in the hospital but that list just continues to grow and not many things get checked off. I can’t even tell you what a typical day looks like because they are all so very different. My son comes first so I need to make sure that he is taken care of before I do something I want to do on my list. The nurses or PCA’s only check on him every three to four hours whether it be for meds, a neuro check, or vitals. Other than that, I am on my own. Logan gets physical therapy, occupational therapy, and speech therapy, each at least 2-3 times a week. He has three doctors tending to his care on a daily basis as well as a developmental pediatrician that monitors him on a weekly basis. In addition to all of that, if he has a surgery or something they are monitoring he will have a specific doctor checking in on a daily basis, sometimes more than once a day.
I still try to run and work out while living in the hospital but I can’t leave his room if he’s awake. There are volunteers that can come sit with him but I am very cautious and picky as to who I let near him, especially when his counts are down. There is one volunteer, Annabelle, that is great and she absolutely adores Logan. So she will come in once a day and play with him for about a half hour while I go across the street to the hotel and go for a run in the gym. That’s typically the most “free time” I have. Sometimes I sneak out when he’s napping to grab a coffee or just go outside for fresh air. But lately, he doesn’t really nap. He takes a few 10 to 15 minute power naps throughout the day. So, needless to say….I have to be “ON” at all times; hence the exhaustion. Not to mention sleeping on the couch there is not very comfortable and the nurses are in and out all night for his feeds, meds, neuro check, vitals or diaper change.
So, let’s back up to the beginning of Round 4. Logan had a G-tube placed on Monday July 10. We (my husband and I) were thinking this would be an easy, quick recovery surgery. Boy were we wrong!! My poor baby had the worst and most difficult recovery based on where the G-tube was placed. Think about it…he’s overcome 2 major brain surgeries so why would a simple stomach surgery be so bad!? It was bad because there is nothing but fat and tissue there, unlike the brain, which doesn’t feel pain. This poor kid was in so much pain. It was definitely the worst recovery yet from all of the 9 surgeries he has had before. They literally blew up his stomach, put three buttons on the outside to hold it open and placed what looks like the plug to a beach ball in his little belly. Poor kiddo!!!
They only gave him two days to recover before they started Round 4 of chemo. They started his feeds at 2ml/hour, that’s next to nothing! There are 30 mls in an ounce, and babies at this age normally drink about 2 ounces per hour, so that’s about 1,440 mls day. Dr. Weintraub said we could go home once Logan was tolerating 30 mls/hr. So if we went at the rate of one ml per day, this would take too long. Once chemo starts, Logan tends to get sick more often…understandably so. The doctors then started talking about possibly putting in a G-J tube in a few weeks. Mama Bear mode kicked in and I said “Absolutely NOT! He will learn to tolerate his feeds!!!” The problem is that when he would get sick, they (the nurses) would typically turn his feeds off, which makes (made) no sense to me. They explained why and it was; because they wanted to give his stomach time to settle, which I understand but how is his stomach supposed to learn how to push through. No pain, no gain…right!?!? So now, I don’t let them stop his feeds. 😉 Sure enough, within 21 days, he went from 2mls/hr to 30 mls/hr. The part that sucks is that it’s 24 hours/day. Another reason he was getting sick was that one of his anti-nausea meds was actually making him sick (thank you nurse Ashley for figuring that out!). I knew my son would eventually be able to tolerate his feeds. He is strong, he just needed to be given a chance! I can’t wait until they switch him to bolus (more volume and shorter time) feeds. He is taking milk by mouth via a syringe, he loves it. He is still struggling with the bottle nonetheless, but he does love playing with the nipple and getting milk as a surprise for doing so! LOL
Logan actually recovered from Round 4 of chemo better than all of the other rounds and we were able to go home sooner than anyone expected…..ROCKSTAR STATUS!!!!
Shifting gears now….I had a huge realization about two weeks ago regarding Logan’s diagnosis and progress. They removed a part of his brain!!! How did I not know this??? Why didn’t anyone tell me!?!? My husband told me I knew. The doctors told me I knew. Hell, I saw the damn images! So why didn’t I know then!?!? I think I compartmentalized it until I was ready to deal with it. Makes total sense. I get so much thrown at me on a daily basis that this was a HUGE thing to deal with. No wonder why they (the doctors) kept telling me he may have deficiencies….duh!?!? Actually realizing this and accepting the fact that they removed a part of my sons left frontal lobe was so devastating to me to deal with. I think I cried for two days straight. That’s why Dr. Adamo went in to do the tumor resection twice so quickly because baby’s brains are so soft and have plasticity to not only recover from trauma but because Logan hasn’t learned certain things yet from that part of his brain, the other parts of his brain can compensate. Basically, he will just learn to do things from a different part of his brain. We are also lucky enough to have the best doctors here locally in Albany and Dr. Lucas, Developmental Pediatrician, closely monitors Logan’s progress! I have no doubt that Logan will recover from this and any deficiencies we may come up against we will work through.
So for now, we just push through chemo and continue with PT, OT and speech therapies. Once we are home on a more permanent basis, we will have early intervention services assist with Logan’s ongoing treatment. We still have a very long road ahead of us but this kid is such a fighter and I am so proud to be his Mom!
Now we are off to the hospital tonight for shunt surgery in the morning, a couple of days in PICU then home for a couple of weeks to recover before Round 5. I will do my best to try to write more and keep everyone updated.
Thank you for taking the time to read this and letting me share our story. We truly appreciate everyone’s continued positive thoughts and prayers!
WE ARE ALL #LOGANSTRONG