First and foremost, a quick request for prayers, good vibes and positive thoughts for two special heart babies: Joshua and Ewan.
On a personal note, on Tuesday, I was cleared to go to wearing my finger splint 10 hours a day instead of constantly as I had been for the last 8 weeks. Taking care of C has become much easier now! I didn’t wear the splint completely correctly while it was healing so I still have a small degree of droop in the tendon. But it is MUCH better than it was before. I now hit the correct key when typing instead of the key next to the one I meant to strike.
So, we made it 5 days before we were back in the hospital this time. Last time, the hospitalization was somewhat unneeded and caused by the overreaction of the ER. This time, the hospitalization seemed unneeded but was probably the only way that we could have received recognition of the issues we were having.
Over the weekend C's reflux reached epic proportions. He had no appetite and was in terrible pain when he did eat. I called the pediatrician’s after-hours line which rolls to the Ask-a-Nurse line. As always, the nurse on call decided to page the pediatrician once I gave her a rundown of the situation (proving that I actually did need to talk to a doctor). We determined that C was not dehydrated and I would call the cardiologist on Monday. I spoke with the cardiologist nurse practitioner regarding C's discomfort and I said I thought it was caused by the digoxin we’d put him on. She told me she didn’t think it could possibly be the digoxin and that they don’t do digoxin toxicity screens as a routine and she saw no reason to do one with him. She suggested we start fortifying his breast milk with formula to ensure he continues to grow.
On Tuesday we had an early morning kidney ultrasound, a cystogram and a voiding cystourethrogram to determine if C's UTI was caused by a problem with his ureters and kidneys. When my pediatrician called with the results grade II VUR and hydronephrosis (grade II reflux in both ureters and a dilated left kidney). While I was on the phone with her, I mentioned that C had vomited on both Monday and Tuesday which had me concerned. After talking with her regarding my conversation with the cardiologist nurse practitioner we decided that we’d both feel more comfortable if we went ahead and did a lab to check his digoxin levels.
We went to the lab at Children’s at 5pm and they had to dig a bit but were able to get a blood draw from the vein with only one stick. We went home and went on with our evening. At about 8pm we got a call from a doctor (I think she was the pediatrician on call) who said she’d received some critical labs from Children’s Mercy and we needed to go to the ER immediately for digoxin toxicity. She called in the referral and we took still packed suitcase from Thursday’s hospital stay, threw them in the car and drove down to the ER at Children’s Mercy.
Upon arrival I signed in and explicitly stated that I was here with a 6 week old child with an unrepaired complex congenital heart defect who was being treated for heart failure and was in to be evaluated for digoxin toxicity. We were sent directly to triage and then from there back to a room so we could be monitored and get our EKG.
Upon arrival in our room we got settled and I asked for a hospital pump since we’d left in such a hurry. Our nurse came in and they did the initial evaluation. Registration came in, said oh it’s you and walked back out… didn’t even ask if anything had changed. I assume that’s because she knew that we didn’t change anything in the last 4 days since she saw us previously. We were seen by a resident and I explicitly stated that I wanted the on call cardiologist paged and blue team down in the ER looking at C. They said they’d take care of it and I assumed that meant they’d make the calls. Shortly thereafter the doctor managing the ER came in and said he was personally reviewing the case and he’d discuss it with his team. I again reiterated that we’d been up on the cardiac floor 4 weeks in a row and the doctors up there knew C and had previous experience with him. I explained they’d be better able to diagnose and treat him and they should be called immediately. He said he’d talk it over with the team again and he left.
Then two nurses came in and started talking about starting a line. I asked if they were talking about an IV and they confirmed they were. I told them if he was getting an IV I wanted someone from the NICU to place it. I explained he was a hard stick and they tried 8 times and took 2 hours to get his IV in last Thursday. Most of the easy veins had been blown less than 5 days ago and we were not going through that again. The doctor came in and we talked about the need for the IV, they were afraid the original sample had hemolyzed, if it hadn’t they wanted to aggressively treat the digoxin toxicity because his potassium was dangerously high. I agreed that we could try to place an IV in these circumstances, but we would be making a very limited attempt and if it didn’t work, we’d have to figure something else out. The two nurses came back and said they just wanted to look for a vein. They spent about 15 minutes looking C over then left the room.
Shortly thereafter the charge nurse for the floor who also was on the IV team came in and asked if she could look at him. She eventually found a vein she thought was good and I agreed to let her try. She ended up blowing that vein, but had an innovative idea for how to place the line so I let her try one more time on the chance that it would be a workable solution for all future IVs. C has really tough skin for a baby and putting in the line causes the vein to roll. She tried making an initial hole with a larger needle then going in with the smaller line to try and get an IV. It ended up not working, so now we know that isn’t the solution. After the second attempt she agreed the NICU nurses would probably be a better idea for his particular situation.
The NICU nurses came in and looked him over. They told me they were each willing to try once, but after that they would insist he get a simple heel stick and nothing else unless the labs warranted it. They tried but were unable to get a line in. They did however keep him 150% calmer during the attempts and at the same time made me feel much better about the situation. We will not be allowing anyone else to make such an attempt in the future.
After we finally had the labs drawn while we were waiting for the results, our nurse DJ sat with us for a bit and talked about her experiences with a medically fragile child. [It is hard to think of C as medically fragile, he is my only baseline for normal. It makes it doubly disconcerting when medical professionals routinely quietly panic at his normal breathing rate.] DJ told us that the ER is a wonderful place to go in an emergency, but if your child is not typical, you must educate them, because as a rule you will know more about the particular condition than they do. The lab results came back and his digoxin levels and potassium levels were still higher than they should be so the ER decided to admit us and we were told to wait for a bed. The Doctor then asked me about C's tachypnea (I only learned what this word meant last week; I think the medical folks just forget that not all of us share their particular industry’s vocabulary). Tachypnea is rapid breathing and in C's harlie’s case, it means that while the typical infant breathes 20-40 times per minute, C's “normal” is 40-80. After he’s eaten he may get into the 90’s or higher. I ended up in an argument with the doctor as to whether the tachypnea was a sign of CHF or not. He told me it was the very definition of CHF and I told him that while tachypnea is in fact a symptom of CHF, in his case it is a symptom of having a very large defect and having to push 3-4 times as much blood in a given time frame as a typical infant and no diuretic in the world would change his breathing. Eventually he conceded the point, but he was very reluctant.
I’d heard the cardiologist page and the blue team page so I assumed they actually had talked to the cardiologists before admitting us to the floor. We got into the ER at 8:30 and we didn’t get up to a room until 2:30am. Upon arrival I found that they had in fact decided to admit us before calling the blue team. Next time I shall have to take drastic measures. I told the nurse that we’d almost had a double dose of Lasix last week so I had to insist that absolutely nothing was done with C without asking me first. I clarified that I understood that the only reason this worked out was because I am with him 24/7 and they have to change shifts. She agreed and was not at all offended. I also told her I wanted to be awake for rounds in the morning.
I finally got to sleep around 6am and was awakened by our care assistant at 9am for rounds. The cardiologist came in and was pretty grumbly about seeing us back so soon. She said that any cardiologist would know that a single elevated digoxin level was not a cause for concern and it was ridiculous that we were here. I explained that I tried very hard to get the ER to call blue team before admitting and they blocked me at every turn. She further stated that the digoxin was not the issue and the reflux, vomiting and general lack of appetite were completely unrelated. I stated that 24 hours after his last dose of digoxin, his appetite was starting to return and I really thought the two things were correlative. Rounds consist of the doctor, the floor residents and about 15 students, so I didn’t feel it was the place for a drawn out discussion on the matter (also, that big of a group is pretty intimidating).
I called my pediatrician’s office after they left and asked her to give me a call when she had time. I spoke with her about the cardiologist’s thought that the reflux etc. was unrelated to the digoxin and she agreed that if it walked like a duck and quacked like a duck, it was probably a duck. We both also agreed that we were not cardiologists, but it couldn’t hurt to try one more time. She put in a call to speak with the cardiologist, and I waited for her to come back by after clinic ended at 4pm. They redrew the digoxin lab at noon to confirm it had dropped back into normal ranges as it should have after 24 hours without a dose. The lab was back by 2 and the result was 2.6 which was still above the maximum allowable range.
Finally at 4pm the resident I speak with the most came back in the room and said our discharge order had been entered and we could go home. The cardiologist came in and sat down across from me, it was like she was a completely different doctor from the irritated, brusque doctor of morning rounds. She told me that my son was trouble (which I’d already realized *grin*) and that while a typical child processes digoxin in about 24 hours, he was taking about 47 hours to process the same quantity of digoxin. She’d already spoken with nephrology and they thought it was not kidney related, but it seemed to her that they may want to check that out further. She went on to tell me we were going to cut his dose in half and take levels again on Friday to ensure we were under the limit with the new lower dose. She said she felt we’d learned some important things this hospitalization and that we were probably looking at doing his repair sooner rather than later given how he’s handling the defect so far. We are also hoping to beat the peak of RSV season which I heartily agree with. C will be getting the RSV immunoglobulin shots for this year, which I am thankful for. These shots are about $1200 per month, so you have to be pretty sick to qualify for them.
She also told me that in addition to blocking me from calling cardiology the ER had also prevented the pediatrician from calling them for consultation. She told me how to use the switchboard to access the blue team and the on call cardiologist directly. I have also figured out how to get a hold of a nurse on the cardiology floor and I can use both of those paths to get someone down to the ER. I know I’ve already been labeled as “one of those” moms. So I might as well go full tilt at this point. I had the cardiology resident add a note to C's file stating that his normal respirations are between 40 and 80. That no one is to treat him with diuretics based solely on the presentation of tachypnea and that he cannot be admitted without first speaking with cardiology. I will also be staging a sit in at the ER and no one will be doing anything without me physically seeing someone from the blue team in the ER making decisions.
If nothing else, I’m learning to be more assertive in the face of what I perceive as a more knowledgeable “authority” figure. It’s a good life skill.