Parenting…..

Eleven years ago, when I became a parent, or co-parent, I was ready. Well at least I thought i was?!? Then I had a terrible pregnancy, 7 months of bed rest; we had a new house, a new life and I was not doing my part. You never anticipate bed rest. Long story short, the second they put her in my arms I knew everything was going to be okay! Why am I saying this? Well, one of the hardest things in this world is parenting. Are we doing the right thing? Will they grow up to be respectful, responsible adults? Have I done my part as a parent??  I have known for a very long time I wanted to be a parent a MOM!! You can only hope what your doing is enough. With that being said, yesterday was one of the HARDEST parenting days we had…

Last Wednesday in Cincinnati, Bo’s port would not flush- no big deal. Well it actually was a big deal.  They told me to have it looked at when we get home! Mind you we drove 600 miles to this hospital and 600 miles home.  I couldn’t get into the doctor Monday, so we went Tuesday at 12:45. We got to the lab and the IV team (Vanessa) was awesome. She couldn’t get it to work either, so she immediately took us up to the infusion clinic so we could put some meds in it to get it to flush! Four hours later no flushing. The IV team came back and said he needed a chest x-ray. We had the x-ray done and I noticed it looked a little different from when he had it placed only 7 weeks ago. They sent us home.

We got home at 7pm and I gave Bo and Brookie a bath- no big deal.  At 8:55 my cell phone rang and it was one of our doctors. She was very shook-up and very adament that we had to get back to the hospital right away!!! I said “Okay.” She said “Carolyn, Bo’s port has come apart and the tubing is in his pulmonary artery.” I was like WTF!!!  I very calmly said, “What do you mean?” She again was not trying to freak me out BUT she was freaking out so I started to panic a little. I get off the phone and I had to go tell John we had to go back to the hospital and this is why… I started crying.  I couldn’t wrap my brain around what I had just told my husband. I called in the troops and everyone came and got the other kids and we headed back to the hospital. She called me again on our way to make sure we were on our way.

We arrived at the hospital and everyone we spoke to looked at us like, “Oh, that’s the kid with the tube in his heart…” We were moved up to PICU and waited until morning to see what was next. Clearly we knew it had to come out, but how, where, when?? I, again, can’t believe what is happening my already very sick 2 year old. He just became even more sick, and it was something that was totally out of our control. They have no idea how it happened, they have NEVER seen a port break like this!

Wednesday morning, well closer to noon, they took us to the pre-op (and the most amazing pre-op team- maybe because all of them were about to witness something they may never see again??). The intervention radiologist came over and talked us through everything, I mean everything. We got to walk Bo all the way to his operating room where we said goodbye to our baby and placed him in the hands of the people who where supposed to fix it save his life!!??  You know when i said parenting was not easy? This by far was the hardest thing John and I ever had to do:  hand off our baby to have a tube taken out of his heart and lung.

The doctor went in through Bo’s groin in his right leg and he ran it up through his little body and had to run it through his heart and into his lung to get the piece of tubing out.  He promised us if in the first 3o min he couldn’t get it then he would stop and we would have to be transferred and have open heart surgery.  Fifty-three minutes into surgery (it took them 20 min to get him to sleep and prep him) the nurse called me and said the tube was out!!!  BUT they still had a long way to go.  They had to put the new port in and take the old port out! All in all it took right at 4 hours and 45 min to complete. We finally got to see our  brave boy!!! I still can’t go into detail about how unreal I think this was!! Being scared because your son needs a bone marrow transplant is hard enough, but getting the very frantic call from your doctor saying your 2 year old needs emergency surgery because he has a tube in his heart takes it to a whole other level. The doctor was so wonderful. He came out to the waiting room and sat with us and explained everything, from the time he started until the time he finished the procedure. It was quite amazing to hear him talk about it, how he may never see this again. I told him to make sure he plays the lottery…..

We could feel everyone’s support and prayers. Thank you so much. We are so glad it’s over. Bo will have an echocardiogram next week and should get the all clear!

Thank you-

C