That’s really the easiest way to say what we’re up against again – it sucks. Over the weekend Isaac had a pretty bad throwing up episode, and for the remainder of Saturday his trach secretions were dark green (the color of his food) and frequent. We were hoping he had aspirated some food into his lungs when he threw up (sad, but true!). By Sunday morning a temperature and nonstop, watery secretions had us in the ER.
Isaac broke my heart when we pulled up and he realized where we were and said “no hospital mama, go home”…. we were lucky that everyone knows him and they really do coordinate well and quickly. They took some cultures from his trach, and started IV antibiotics – his lungs looked clear so we were suspecting a trach infection.
By Monday morning he was a bit better, but mama had a nagging feeling that formula was coming out of his trach. I just couldn’t prove it. I spent most of Monday convincing myself I was crazy. On Tuesday we got word that an oral antibiotic would work on his infection and we could go home, but there was still the nagging feeling that something was wrong with his esophagus. I took matters into my own hands and dyed his food purple – within minutes of feeding him his trach secretions turned purple 🙁
We pretty much knew then that his esophagus was leaking again, but needed real proof. Today Isaac had an esophagram (dye injected into his esophagus that shows up on xray). Holding him down on that table while he fought with all of his might was awful – then seeing the leak show up on the xray screen made my stomach turn. It was obvious that he has another leak, and again it is connected to his airway.
We put in a call to our favorite Minnesota surgeon – who repeatedly said “oh no”. He decided he needs to try something new, and he wants us out there next week.
Our next problem became how to feed Isaac – his G tube won’t cut it when he refluxes and sends food into his airway. The other option is a tube that also goes into his belly, but extends towards his intestines, unfortunately there were none in the right size in the state of Virginia today! Our last resort was an ND tube – it goes through his nose and into his duodenum, bypassing the stomach. Once again, we had to hold Isaac down and get that in place – I’m not sure when he’ll forgive me.
While all of this was going on word came from our local hospital that Isaac would benefit from a round of IV antibiotics – and they placed him on the schedule to get a PICC line tomorrow morning. We are hoping that the radiologist will try to place a feeding tube we have here that is a size bigger than the one he has so we can lose the nose tube!
Tomorrow we will find out when we need to fly to Minnesota and how long we will be there. We are again disappointed and said for Isaac has to go through and will go through. However, we are reminded that we are loved and surrounded by an amazing group of people who will stop at nothing to help our baby.
Last week we volunteered again at the Ronald McDonald House in DC, and we were lucky to have a fun group of friends and family helping us out! It is truly an uplifting experience, and very meaningful to us. For 8 straight months the RMH in Minneapolis fed us, housed us and generally cared for us. Since then I can’t count how many more times we have stayed there, even when we don’t stay there we end up there playing and eating 🙂
When we have been there in the past I always put “giving back” on my mental to do list, I never got around to it with everything else going on with Isaac. Now that we are somewhat settled it is so nice to finally pay someone back, in some way for all that was done for us. It really is like coming home, even arriving at the DC house, it is a place of such tremendous comfort.
Meals aren’t something you would even really think of – I was shocked when we arrived in Minneapolis the first time and learned that dinner is provided nightly, and brunch is provided on the weekends. I had no idea then what that would mean for us. To not have to worry about that lifts such a load when you’re already exhausted and worried. For us, it was initially less money to spend in the cafeteria, and often a quick break from the hospital. As time went on it became a time of comradery, we got to know so many remarkable families – some going through similar experiences to us, others who taught us about things we had never heard of – and who taught us to count the blessings we had.
Some of the families we ate dinner with lost a child, some lost more than one. Because of this experience we are now able to think about and honor those children. We know that even though Isaac gets sick (and, today he woke up sick!), and gets poked and spends a ridiculous amount of time in hospitals – he is OKAY. Just a simple dinner, cooked by wonderful volunteers taught us this.
So, I am already booking our next volunteer night – because it feels so good to be back home 🙂
Isaac’s homecomings are always so much fun….. his excitement is contagious! When I got out of the car at the airport he yelled “mama” and showered with me hugs and kisses. Every so often he pulled his head back and stared at me with a smile, such an old soul 🙂
The best is news is he is home for a while – Dr. Hess barely dilated him, and said not to schedule another return in a few months like we have been. We only go back when and if Isaac shows us signs that he needs a dilation!! For the first time in over a year I will not spend his first day back planning the next trip out – wow! This is remarkable, and such a huge step for Isaac.
Dr. Hess took a little peek at Isaac’s right lung, since we’re still unsure how it has healed. He said it is anatomically fine (totally a Dr. Hess statement!) and is not holding him back with capping. He also noted that Isaac’s right rib cage is more fused, he described it as a plate at this point. He said that will inhibit his breathing at some point and we need to figure out how to address it. That kind of sucks, but we knew it would come. So now we work on sending out discs of his MRI (which we don’t have official results on yet!) and figuring out who to consult with. We need an out of the box thinker on this – because Isaac is a pretty out of the box kind of kid! This could require a major surgery, which is also a huge bummer 🙁
Isaac had an MRI to look at his spinal cord and his spine – checking for curvature from the rib fusion and the possibility of a tethered spinal cord – which could also suck, but would need to be addressed. We might be shooting for a “two for” deal on this one!
Regardless of what the results show, and who we need to consult with or how far we have to go we are counting our blessings tonight. Isaac is home, his esophagus is making us so very happy, he has practiced with his trach cap this weekend and he’s a hugging and kissing machine – doesn’t get much better than that!
One week ago tonight we were preparing for Isaac’s trip to the PICU at Children’s National Medical Center. We spent a night feeling pretty defeated, and sad for our amazing boy. However, once again Isaac has brightened our days and quickly turned our thoughts around.
He had a wonderful week, once we got Isaac settled on Saturday we took him to the Herndon Festival – he rode a ton of rides, and played lots of games – we all felt much better at the end of the night! Monday night was exhibition night at Isaac’s gym, he was so very proud to show off his tricks. Isaac wore his speaking valve all week, giving us a little bit more faith in his ability to someday wear a cap.
I was still feeling pretty bitter after the debacle that was Isaac’s last PICU stay, so I hadn’t contacted them about a follow up appointment or capping trial. They realized they hadn’t heard from us today and called to set up a clinic appointment next week….. coincidentally today his special, colorful caps arrived in the mail. Daddy put one on Isaac, and lo and behold he didn’t panic!
Isaac wore his cap for a few minutes, he got angry with us, so we took it off – this has to be a positive experience for him now. A few minutes later he tiptoed over to his bag o’ caps and put one on himself!! He didn’t wear it for more than a minute, but what an amazing sight that was! The key here is to let Isaac be in charge – he doesn’t get too much say in too many things, and he deserves this.
Of course all of this excitement occurred as we were packing and prepping him for tonight’s trip to Minnesota! Isaac has an OR date with Dr. Hess tomorrow morning to dilate that esophagus. Once again, he is showing no signs of needing a dilation, so we’re hopeful that maybe that esophagus is in good shape 🙂 The plan was for Isaac to stay until Sunday for a play day with his girlfriend – Ireland. As it typically goes – Ireland decided to take it old school, and was admitted to the PICU today. There is some concern about bowel obstruction – so please keep her in your thoughts!
Looking forward to more capping in the days to come 🙂
Isaac saw Dr. Preciado this morning, and the report was that his airway is “awesome”. Dr. Preciado was very confident that Isaac is ready to be capped, we were too. Unfortunately, Isaac was left to sit in the ICU all day, begging to go outside…. not being capped. A resident did come to cap him about 8 hours after he got there, she broke the cardinal capping rule and capped him while he slept – he woke up in a panic and failed that trial.
As the night went on there was confusion as to whether or not capping could be attempted again by the ICU staff, in the middle of this Isaac was calling me crying and begging to come home….. more heartbreaking than I’ve ever seen him. I broke down and emailed Dr. Preciado with my frustration, he called and gave his blessing to try again – Isaac failed again. We think at this point he panics when he sees the “cap” coming. It’s psychological. He could be experiencing some airway swelling, Dr. Preciado said if he goes home uncapped this weekend he’ll bring him back in a week and do it again without a bronch first – just in case it’s swelling.
Frustrated and disappointed doesn’t explain it at this point. First – we LOVE Dr. Precaido, he has done amazing work on Isaac. We just tend to feel incredibly deserted when he leaves for the day and we are left with such little information as to how to proceed. Almost every time Isaac has been inpatient I end up emailing Dr. P after hours so he can call the ICU with directions. We are spoiled by so many of Isaac’s other doctors, it’s tough.
Then there are the “why Isaac” moments that come out of nowhere. I haven’t had a night like this in years – hours of tears. I know I should be grateful all of the time that he is alive and as healthy as he is – I will always know that. Sometimes I am mad though, why does my baby have to be the strong one? The one that shows us all what strength is? Why can’t he just be friends with that kid? Why can’t we just read about somebody else’s little boy going through all of this? Having my sweet boy beg me to bring him home tonight opened up a flood of feelings that I haven’t had in a long time.
We have decided that if he is not successful tomorrow morning and comes home that we will try capping at home (even though we haven’t been given permission). We’re kind of on our own, even in the PICU. In order to avoid the psychological effects of the capping Isaac is used to we are going to try putting tape over the speaking valve that he is so very used to.
He CAN do this, but it has to be right for him. He has been through too much, and not had enough control – if we can do this on his terms it might make a difference. We are willing to take him back for a direct PICU admit to try again in a few weeks, if there is a definite plan for the visit. Hopefully our at home prep will make a difference.
After the tears and feelings of frustration I know we are blessed, in so many ways. Isaac is ok and will continue to amaze us….