Drawing the Line

The past week we had to do blood draws every single day. On Saturday Joaquin's veins had had enough and decided to quit giving blood. The phlebotomists tried three times to find a good enough vein to draw blood from and ended up having to just do a finger poke. It wasn't enough blood, but it was an adequate amount of blood to check his Prograf level and his white cell count. After Chris and I left we had already decided that even if his blood levels weren't good enough to give him a day off, we would take it off anyway. Sometimes there's a point you reach as a parent and an advocate for someone when you draw the line. Luckily his Prograf came back fine and his white cell count was rising, so we had the day off yesterday.

Today the phlebotomist did a good job and got the blood on the second try. I really feel like it takes confidence and experience in a phlebotomist to draw blood from a patient like Joaquin, or any baby and small child. She felt confident today and drew the 10cc's of blood they needed, which is a lot for a little guy like Joaquin.

They decided to stop giving Joaquin Septra, which is an anti-bacterial medication, because his white cell count had been low. When a kidney patient's white cell count starts to lower, first they lower their CellCept, which is an immunosuppresent drug that also affects how the blood marrow produces, then if that doesn't work they take them off Septra and give them another drug called Pentamodine. The Pentamodine is one that can either be given through an IV or by placing a mask over the patient. One would think that it would be easy to give a small child a mask, but some small children don't like it and they have to end up doing the IV. When she said that some toddlers don't like it, I knew Joaquin would be one of them even though she was saying how he'd be fine because he's so mellow (yeah, she obviously doesn't know Joaquin, right?).

Joaquin sees the mask and immediately gets upset. So Chris holds Joaquin in his lap and I hold the mask to his face and the respiratory therapist holds his legs. The whole treatment only takes about 4-5 minutes, but Joaquin struggled and struggled. I remember the RT (respiratory therapist) saying how he was finally calming down but I just knew that something wasn't right. I even asked if he was alright and she said that he was fine and I asked if he could breath alright and she said that there was oxygen coming through the mask but to me it looked like he couldn't breath. I feel as though Joaquin was throwing a tantrum and was so angry that he held his breath or the mask wasn't really putting oxygen through and he couldn't breath. Either way, right at the end he didn't look alright. It's an image in my head that I'll always have and I wish that I didn't. He was turning blue and he wasn't breathing. Chris sits Joaquin upright and I hit the bottoms of his feet and call his name. The RT had rushed out to the nurses station to alert them to what was going on. She comes back in and tries to give him oxygen and I turn away and start crying... I can't really remember what else I said. The nurses rushed in and by that time he was crying, so I knew he was alright, but I was so shaken. They took me out of the room and gave me water.

When I came back in the room, Joaquin was sitting on Chris's lap still and Dr Wong was in the room. He looked groggy and grayish. I picked him up and he almost immediately fell asleep on my shoulder. It felt good to hold him and listen to him breath. His oxygen saturation was a little on the lower side and his color still wasn't that great. Dr Wong was talking about admitting him. She said that they would admit him and if he was okay by the night, they would release him that night or the next morning. When they called up to 3 West they said it would be another 2 hours before he could have a bed.

They moved us into another room and we finally gave him some food. He had been without for a few hours and it finally dawned on us that perhaps it was all an accumulation of being without food - hyperglycemic - and the blood draw and the passing out that made him so slow to recover from everything. Once we fed him he perked up and his stats looked good. They wanted us to stay until six o'clock, but they released us at around four-thirty. The appointment was at eleven o'clock and we were told it would only be about twenty minutes.

All of his labs from today came back okay, so we don't have another blood draw until Thursday and they'll see us in clinic that day too because we didn't have a chance to see them today. I think that I was upset not only because of Joaquin's reaction to everything - they think that it was a reaction to the Pentamodine, but Chris and I don't - it's that this all had to take place. It feels like every time we go into the hospital something like this happens. We are so unsure about doing the biopsy and now we are almost sure we are not doing it - especially after this.

Chris and I have always believed in instinctual parenting, trusting your parenting abilities and intuition, and this applies to modern medicine. I realize that the doctors have Joaquin's best interest in mind, but nothing is for certain with western medicine and especially in transplants. They are still learning as they go along. Although they would probably never admit it to us, I think there are other reasons beyond checking for early rejection by doing the biopsy. Stanford is a research and teaching hospital. There are little lies that we've caught the doctors in- like today Dr Wong said the the day hospital was booked and so that would mean we would have to be admitted to 3 West. Later we heard the day hospital nurses say that there were barely any patients... things like that. And sometimes we feel as though we are being talked down to and that because we don't have the medical knowledge we don't know what's best for our child. I completely appreciate what they've done for us, but at the same time I've also got to trust my instincts and know where to draw the line when it comes to my child and realize that I may know what's best for my child and not the doctors.

I hope you all don't think that I just come here to complain. Or that I'm unappreciative. I haven't had easy access to the internet lately and I'm not able to download any new pictures and I've got some cute ones! Joaquin is so close to walking. He's taken a couple of wobbly steps and he can hold on to just one had and walk along beside me. He is such a blessing and today was so scary. As we left the day hospital, Chris and I said: "Run!" We wanted to get out of there as fast as we could. I held Joaquin all the way home on our walk from the hospital and we gave each other hugs and pointed out the planes in the sky.