Monday, May 11, 2009

My little unicorn

Marley's cardiac cath was on Friday.

We checked in at 7:15 am and surgery began at 8:30. It was tough to let her go but I felt confident that she was in safe hands. Surgery was over and she was transferred to the PACU by 11am. The cardiac surgeon came out and let us know that the cath went well, that he was able to clearly identify the stenosis in her pulmonary arteries and the coarctation in her aorta. He ballooned the areas, but being so flexible, they resumed to their original state. While he couldn't "fix" her that day he did tell us that she will probably just need another cath when she's a few years older to place stents to keep her arteries and aorta open.

Not exactly what we wanted but at least she was okay and we found out the problem is fixable- just not for another few years.

We went up to her hospital room to await her arrival. 2 hours passed before she was wheeled into the room. The nurses explained that she had a small blood clot develop in her right leg where the cath was placed. It seemed to have resolved on it's own but the cardiologists would be up momentarily to talk to us about it. Okay...

A couple of surgical residents arrived and took a look at Marley's leg. It was definitely mottled, dusky and cooler than her other leg. The doctors tried to find the pulse in her foot (pedal pulse) but couldn't locate it. I admit, it's a pretty tough endeavor what with Marley being a little chubster, but they weren't having any luck.

They discussed with me starting Heparin, a blood thinner to help resolve whatever clot might possibly be there. I concurred. I did until I found out that they had to draw her blood every 3-4 hours to check her coagulation levels so that they could titrate the Heparin dose to a therapeutic level.

Blood draws every 3-4 hours!!! Have I mentioned before how difficult a stick Marley is? Squeezing water out of a cactus with my bare hands would be an easier feat! I suggested starting another IV. As hard as that would be, I wanted to save her the torture of multiple needle pokes.

Well easier said then done. One of their most experienced IV nurses poked her 2 times. No dice. Then a phlebotomist did 2 heel sticks followed by a finger stick. He got enough blood but it clotted by the time it was brought to the lab. In between the screams and tears (mine and Marley's) a doctor would come by trying to find the pulse in her foot.

I was fed up. REALLY FED UP! I just couldn't take it anymore. I was ready to just pick her up, pull out her existing IV, and take my baby home. The nurses rationalized with me and Jason threw in his two cents which I think calmed me down. I asked the doctors what would happen if we just couldn't get blood out of Marley. Their response? If it takes 27 pokes, we will get blood.
Gee, what a great plan!

I agreed to one final attempt. This time I was promised that Cindy, an IV nurse with hundreds of years of IV experience would attempt the impossible. I bargained for some type of pain medication to help lessen Marley's pain, and the doctors agreed to give her Morphine. It may not completely take away the pain, but it would mellow her out a bit so that perhaps she would scream.

When Cindy arrived I quickly left the room to take a walk. I felt guilty for leaving my baby but I just couldn't see her go through another painful stick. When I returned the IV was in her head (yikes!) but she wasn't crying and I felt so relieved. That was until Cindy told me that she had to shave a small potion of Marley's hair to insert the IV. She had wrapped up the hair in a bandaid and ceremoniously handed it to me exclaiming, "her first haircut!" Yup, that was it. I lost it. I started bawling uncontrollably. I couldn't believe my baby's first haircut was in the hospital. 

But the IV was in and the blood was drawn. The IV actually worked pretty well for at least 2 blood draws until the vein collapsed. And the Heparin worked quickly. Within just a few hours her leg's appearance resumed back to normal and things were starting to look up. And gosh did she look so cute with this funky IV tubing sticking out of her head. She became my "little unicorn" and was nicknamed appropriately.

The next morning I left to go home and shower and when I returned Jason did not have very good news for me. The doctors STILL couldn't locate her pedal pulse and were now threatening to keep Marley for another night if her pulse could not be found. Oh, that was the last straw for me. I had the current cardiologist paged to our room immediately. 2 young doctors arrived. They explained the situation while I tried as best as I could not to bitch-slap them. Fortunately one of them was finally able to find her pulse, of course in a spot on her foot that they had not evaluated earlier. She suggested that they mark the spot to which I responded very sarcastically, "wow, that is the smartest decision you guys have made since we got here!" Not surprisingly, I did get a dirty look.

The mark was made, the heparin was discontinued and we eventually were discharged home with a prescription for baby aspirin that Marley needs to take every day for the next month. But I didn't care. We were home and consequently, I had the best mother's day ever.

But I feel really let down by the doctors at Seattle Children's Hospital that I entrusted my baby with. Why didn't they mark where her pulses were before the surgery? Why didn't they start another IV in the PACU when she was still asleep when they discovered the clot? Why did it have to take so long to get the Heparin started? I'll probably not have any of my questions answered. Maybe it doesn't matter anymore. But I can't shake the anger and frustration I have towards the people that were suppose to be the experts.

And poor Marley. She was such a trooper through all of this. It tore my heart out every time she got poked. I don't know who was in more pain, her or me. 

Since we got home she's been more emotional. She's very happy but it's hard to put her down for naps and bedtime. She has become more clingy, more needy and I can't help worrying that she was scarred by the events at the hospital. It just doesn't ever get easier.

3 comments:

ellen charge said...

how is stupid ive had this kinda prob lots with my veins msot of the people now have a three rule three goes no go no ivs but since ive been healthy in the last few years its k have they thought bout a central line for bloods and stuch this could b good maybe next surgeyr to get inserted jsut so you dont have this again sepcialy if her veins r anything like mine small and hard in fzact my gp wotn even touch them she jstu writes a sript for the hospital if shes worried bout something or ssomeone has asked her do soem test

Kay Kirkland Martin said...

Your blog is super well-written. Thank you for sharing such intimate feelings and thoughts with us. I'm in awe of your ability to advocate for your child. You sound like an amazing mother and Marley is obviously an amazing little girl.

jeffiner06 said...

God bless you and your family. Stay strong