Dec 8, 2015
i started writing a blog post awhile ago - mostly about levi. i didn't think it would be possible for my heart to love another little boy so much. every parent says that, and they somehow make room, i know. i still wondered though, but our hearts have swelled to let in another little person. so in light of how much i love this new little one, who is 10 weeks old, and growing much too quickly on me already, most of this post is, once again going to be about isaac, and is going to be SO massively long, and i think i will still not even begin to tell you what the last couple of months have been like. i'm giving you the abridged version still! forgive me in advance please for any crazy spellings and things that just generally make no sense whatsoever. i'm sure there will be a few.
our story begins back in july. since then we have been having varying degrees of trouble with isaacs shunt (the line that drains the swelling from his brain down into his stomach cavity) - so after 6 or so trips to the doctors office. maybe more? and a trip to the ER, with irritation/infection and finally swelling and puss (sorry) along the line, and also isaac not being able to wear his hearing aid for two weeks because it was causing even more irritation, we finally decided that we just needed to do a surgery to remove the shunt. the hope was that once it was removed, isaac's body had MAYBE just maybe learned to adapt and he wouldn't even need it anymore, which would have been awesome. the surgery ended up happening quite quickly after a few middle of the night scares, so on daniels birthday we woke up bright and early and whisked our family off to the OR.
after a weeks hospital stay it was decided that isaac was shunt dependent. we learned this quite quickly because he would throw up and become irritable with the slightest pressure change. so by the end of that week a new shunt was placed, a bit unconventionally - on the other side of his head and with the valve in his chest to avoid potential irritation from things like little isaac hands plus his hearing aid band. we had a few hiccups right after surgery, but we finally pushed to go home. isaac was so sad and constantly asking us to leave and hadn't moved in nearly two weeks in his hospital bed, so home we went! he has always done better recovering at home, so we had hoped that being back and reuniting our family would perk him up again and be the extra boost he needed to heal quickly. only this time he didn't seem to make much positive progress. in fairness, he had also never been in the hospital for 11 days either, so we kept thinking that maybe it was just taking longer, and maybe he was feeling a bit depressed after a two surgery stay. so we tried extra hard to be peppy and give him things to look forward to each day, but without much progress.
after just a week, i woke up to give him a squeeze and he was absolutely burning up. he ended up having a fever of 104.7, so we got him to the pediatrician, who tried to refer us to our childrens hopstial - which was FULL (our month was full of little crazy stories like this one)! by this time isaacs fever has passed 105 and we were told we would need to sit in the lobby of the hospital until a room became available. i'm getting pretty good at working some magic, so that wasn't an okay answer. i made a few different calls and isaac had a room by the time daniel got him to the hospital. after a very long night and lots of testing, the uti we thought isaac had ended up being a kidney infection (sad news for someone with one kidney that only functions at 40% anyways) and THAT ended up being a blood infection. and a particularly nasty strain of one at that. anything to us that has to do with blood is automatically freaky, so this was scary news. but we had excellent doctors that week and we got an antibiotic that seemed to knock it out quickly and completely.
one more 5 day hospital stay under our belts, that ended with us putting isaac under anesthesia once again so we could put in a PICC line to administer his antibiotic intravenously. its not the bubblegum tasting kind. this stuff was pretty intense. we had literally run out of veins after a month of poking him and adding multiple IV lines, so the PICC - as much as i have been dreading the day, has been a lifesaver this past month! for two more weeks at home, every 8 hours i would start the hour long process of washing hands/putting on gloves/cleaning the PICC line/saline/administering antibiotics/wash hands again/put on new gloves/saline/heprin. (have i mentioned that im going to be a nurse someday?) we wrapped up the day before thanksgiving and that was seriously something to be thankful for!! after all that, we thought that surely now, isaac would be feeling better and begin to recover. but that would just be too easy, right?
pretty much since we got home from his shunt surgery, he would occasionally throw up. but he had so much going on, it made sense that his body would just be in shock. then after the blood infection it became a little more of a regular occurrence (every 3 or so days). so we talked to doctors and nurses and blamed the antibiotic. thats a lot for such a tiny body! we put him on a probiotic and started to actively work towards restoring his gut health. but things didn't get better, and even got worse. things on that front have continued to worsen even in spite of all of the doctors we've talked to and all the things we've tried. then this past sunday he woke up and seemed very sick. we made calls. we spent an entire afternoon trying to collect a urine sample to check for another UTI, and then we started off our monday by visiting the pediatrician to talk thru whats been happening. we all had theories, and we left with another antibiotic and a nebulizer that isaac calls 'the scary hippo'. it is shaped like a hippo to be more fun, but the extra loud vibrating noise and smoke coming out of the end seemed to convince isaac that it wasn't something he wanted to have anything to do with. so with our new ideas and a bit of hope, we left! and tried to talk isaac into thinking the hippo was okay...
which brings us to today. this morning after daniel went to work i got isaac up and he greeted me with vomit down my shirt (a very common occasion lately. we don't stress anymore). as today wore on he became more and more irritable and lethargic and complained nonstop about his forehead and eyes hurting. we watched christmas movies and snuggled in between all of the doctor calls to try and distract him, but one thing became very clear: after a month of documenting EVERYTHING. every bite he's taken. how long he sleeps. when he throws up. when hes happy. when hes sad. we finally are sure of whats going on...all this time in the back of our minds we've been thinking 'his shunt already isn't working' but we didn't know for sure. and his surgeons office was never concerned when we called because of how infrequently he was throwing up. we've exhausted every other non-surgical option and this is the only one left and he is starting to show other, very clear symptoms now, too: lethargic. irritable/irregular behavior. 'projectile vomiting'. pressure in his head/severe headaches. i realized too, that for all of my charting this past month, i never put two and two together to realize that almost 100% of the times he has thrown up has been when there has been a change in elevation (mostly us picking him up after he's been laying down, or when he wakes up in the morning). it seems simple thinking about it now. we had just so hoped that this wasn't the problem...
so this is where we stand. isaac has spent almost half of a year working towards getting his shunt working again, and its still not. he has quickly moved from being stable, to severe bone marrow failure. his platelets in particular are floating right around 20k and we are transfusing him to keep his hemoglobin in a safe range every couple of weeks. he has lost more than a pound and a half since his surgery 6 weeks ago (super significant for us). he has digressed in physical skills - he hasn't walked since the day we took him in for surgery. his speech has become sloppier. overall, the kid just needs a break. my heart just hurts so much for him. especially at the age he's at - old enough to know that things are scary and happening that he doesn't like, but not old enough to reason with him, or to explain why they're happening. or to tell us how he's feeling or what hurts.
we've thought a lot in the past several months about what the future will hold for isaac. and for us. we are all pretty traumatized. it's hard to share with other people what we're feeling and going through.
life right now is a low. we have moments of happiness, but overall, its a season of getting 4-5 hours of interrupted sleep. drinking coffee until it comes out our veins and going to bed feeling like things are just getting worse. and trying to love on a sweet newborn in the middle of it all. i'm still hopeful for a future for isaac. but if you haven't already figured it out - things aren't going well right now. his body isn't healthy. its easy to think sometimes that i can control things with him. if we feed him healthy enough or just see the right specialists that things will go better, or at least he'll be okay just a little longer. i like to know that things are under control, and things just aren't anymore. there is very little that i feel like i can contribute towards making isaacs body better. we will do what we can for every moment, but i am reminded more and more that his days aren't up to me really. each morning, i watch him looking sicker and i feel so aware of my limitations. isaac was always our little gift. if you don't believe in god and are reading this, it might sound ignorant, or just weird, but i am (more/mostly/most of the time) trusting god for what isaacs life will look like, however long or short. and i don't think i've really wanted to trust him in a long time, but i'm out of other options, and it feels like a good place to be.
if we don't have much longer, i won't let myself live with regrets about any of this. i am finally able to look in the mirror and say that i am a ridiculously incredible mother to the two little people i am called to parent and love. i am so far from perfect, but i do the best i can. there are other moms that would be more structured, or remember to change diapers more often, or could maybe survive on less caffeine, or keep stacks of dishes out of her sink - maybe i can work towards that in a different life season, but not right now.
so our very next step is an MRI first thing in the morning. a lot of what our month is going to look like will depend on how things go tomorrow. we have a very capable surgeon here, but isaac is extra complicated, and we really need doctors that will look at him holistically, especially as he gets sicker, so we are praying for definite direction. if we don't feel great about how aggressively or seriously they are treating this shunt situation, we will probably be packing up our bags for ohio before the end of the week - providing they are able to take us there. so i would imagine, and honestly hope the way things are right now that we have a shunt revision in our very near future. pray for us if you think of it. we need some clear direction this week!
Posted by Daniel & Mindy at 11:46 PM