Monday, September 27, 2010


Most days I am incredibly afraid of losing my son. Mostly I push it down and ignore it. But some days my fear finds a target and it bursts out where I can no longer contain it. It is usually stupid stuff, today it is because it appears my husband has a cold. We’ve been careful. My husband rarely talks to anyone at work, most of the people we have over see a very small subset of people and are mostly home bodies themselves. We have no idea where the cold came from. Maybe it was the lady at the takeout counter or the guy at the checkout at the convenience store. We can’t avoid everyone all the time.

The only thing I know is that I’m terrified that my tachypneic little boy is going to get a cold and have to work harder to breathe. I don’t have any idea what that will do to him, I think I can safely assume it will require another trip to the hospital. I’m hoping like mad that I’m already producing antibodies and giving them to C in my breast milk. I am hoping that will be enough, that my immune system is somehow smart enough to go into over drive and kill this thing before it can even get up to speed. My husband is wearing a mask when he has to be around the baby and he’s sleeping on the couch to limit exposure. On an up note for him, he’s going to be able to catch up on playing his video game and sleeping. I’m going to have to give up on sleep for the next while it seems.

I’m so scared I can taste it… I'm praying, and I'm turning it over to God, but I'm still so very scared.

Wednesday, September 22, 2010

Will we ever make it a week without a trip to the hospital?

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.

Friday, September 17, 2010

Back on the cardiology floor again... AGAIN

We failed to meet our whimsical goal of not being in the hospital for 7 days. For the third Friday in a row, we are on the cardiac floor at Children’s. The first week was for CHF, the second was a UTI and we are back because home health really didn't like his breathing. She was pushing us to go in by ambulance, but thankfully cardiology thought that was not needed. It felt a little excessive to me. His breaths were between 70 and 100 (70 when he was cuddled up and sleepy, closer to 100 just after he finished eating. His O2 is currently sitting around 95%-96% and occasionally dropping into the 80s.

They had us come in through the ER. We got in much faster this time. I still need to be a bit more of a squeaky wheel, but its better. They wanted X-Rays and this tech did chest X-rays by dangling him by his arms in front of the X-ray machine. The Cardiology floor team now recognizes our names. So the resident we usually had ran down to check us out...

Then, they decided they want an IV for Lasix. Getting the line in was HORRIBLE. They had called someone down from surgery to put it in because they expected it to be very hard. In the end, 2 nurses and 3 doctors were trying. The third doctor in the room was the one who eventually got it. Actually she stuck him twice and she got blood out the first stick, but then his vein blew, so she had to switch to the head. She only had the option of the vein they used last week or the head... by the time she got in, everything else had been tried already. She was actually awesome.. she was the attending who saw us early on in the ER visit. She was on the way out the door for the day and saw me standing crying by the nurse’s station. She asked what was up and when I told her she said she had some IV juju so she'd go try. She tossed her stuff on a cart and went in...

When all was said and done, he had been stuck 8 times, he blew veins at least twice, his little hand was covered in blood on the third stick and they had tried all the viable veins in his hands and feet and couldn't get it. I couldn't stay in the room after the third stick; I lost it a little bit... I wanted to stop it after the third, but what the heck else could they do? What do I ask for next time to prevent this?

I really wasn't that stressed over his breathing rate though home health got me there when she said he could just get too tired and stop all together. That freaked me out. When I finally got in and the cardiology attending checked him out (after apologizing for the whole ER thing... everyone was really upset about how the IV thing ended up) she asked why we were back in. I explained that yesterday my pediatrician was kind of concerned by his breathing rate, my mother in law (a respiratory therapist) was kind of concerned, I started counting respirations late last night after a feeding and then home health expressed serious reservations about his condition.

I told her I wasn't panicked but home health was. She asked if I was really concerned by his breathing and I told her I honestly wasn't freaking out over it, he breathes fast, he retracts a bit at the throat and belly, that's just how he is. The retractions were slightly more pronounced and enough people had expressed concern and I was feeling enough concern that he should be checked out, but it honestly didn't feel like an emergency. Originally I had planned to call his cardiologist and have them squeeze me in to be looked at. It just didn't work out that way.

My understanding of what is happening is that this is less about fluid and heart failure at this point and more about his defect directly. The VSD and ASD are so large that he's basically pushing mixed blood in all directions. Which means he has to push a lot more blood to keep his O2 as high as it is.

Someone started making NG tube noises last visit, which I thought way, WAY jumping the gun. Nothing suggests he is aspirating his feeds, it really seems like we could fortify his BM if he needs more calories before we go all the way to NG tube. I'm already exclusively pumping so he has less work to do to eat...

To top everything off, he went almost 6 hours without a wet diaper after all that with the IV. I was so worried. On Tuesday we are scheduled for testing to see if he has renal reflux so the kidney thing has me nervous too. He finally started peeing and pooping about 1am… He had two good diapers while we were still in the ER, he peed on the scale when we got to the floor then nothing from about 7 to about 2am.

I’m exhausted and emotionally weary. I’ve been crying on and off all day and I feel like I might be reaching a limit here.

Saturday, September 11, 2010

We should be home tomorrow…

They have determined the fever was being caused by a UTI. We are treating it with antibiotics. They are also assessing how fast he breathes after eating. The cardiologist making rounds started making NG tube noises, but I think that is a bit premature. C gained weight in the last 24 hours and he eats quickly and regularly. I think he just breathes fast right now. There are lots of things we can do before we have to go so far as an NG tube I think. I’ll call my cardiologist’s nurse on Monday to try and find an answer.

We had an awesome nurse today on the cardiac floor. She was no nonsense and practical and she liked me *grin* She loved that I exclusively pump and bottle feed (it saves a lot of work on C's part and still gets him the benefits of breast milk). She also loved that I can manage the meds and I pay attention :)

I am so very tired…. Though yesterday I got the first four hour block of sleep that I have had since C was born. It was lovely. I’m worried about having enough milk if I do that too often though.

Speaking of sleep I’m off to feed the baby and go to bed!

Friday, September 10, 2010

We're back on the cardiac floor again.

Last week we had to go to the ER because C started having trouble eating and was breathing fast. They admitted him onto the cardiac floor for observation overnight and we had our lasix adjusted and digoxin added in.
It seems we caught some kind of bug down in the ER while we were there :( C spiked a fever tonight and our pediatrician sent us to the ER. We went to the children's campus that does not have a cardiac floor because we were given the impression that they'd do a CBC and probably send him back home and that we were just being cautious. The pediatrician told us to go the the campus we went to... They didn't tell us that if an infant has a temp over 100.3 then the infant is admitted for at least 48 hours. So... the ER doc talked to cardiology and cardiology said C had to go downtown to the cardiac floor since he was going to be admitted. Of course, since we were already at the south campus they wouldn't let us drive him to downtown, we had to be transported by ambulance to the downtown campus. So now we are probably some crazy amount of money poorer and we're back in the hospital for another 48 hours. He was on a stretcher with monitors during transport. They actually took all my bags and luggage with us which was very kind of them. I did help the guy driving the ambulance with his homework while we rode between hospitals. So at least I was useful.

I really just want a break... It has to get better, right?

To recap:

We found out we had a single umbilical artery, then we found the heart defect, then I broke my finger, then I got gestational diabetes, then I had to go for twice weekly NSTs, then I broke my toe (and went into labor that night) then C de-satted in the first 30 hours so he had to go the NICU, he was in NICU for 9 days, then our air bed stopped holding air and we had to buy a new mattress, then at 3 weeks his heart failure got worse and he spent a night in the hospital for observation (during which time we missed the original bed delivery), then the dryer broke and shocked me when I touched the door we had to buy a new one, then C got a fever and we're now back in the hospital with a fever of 101 :( We'll still be here when the stupid dryer is supposed to be delivered... I wonder if they will call ahead like they are supposed to... In vaguely related money news, insurance called us and told us what our responsibility would be for the first hospital stay (9 days in NICU at birth) -- we will pay $1200 for the first hospitalization.

I'm very tired :(

…….. We have now been in the hospital for about 20 hours. I have had 3 hours of sleep over the course of the day and I feel vaguely better. Brighter days are in the future. In happy news the cultures have not grown yet, decreasing the liklihood of bacterial meningitis or sepsis. Also, the cardiologist said while we are here she wanted to stop the Sodium Chloride and Potassium Chloride because she's not sure they were ever needed in the first place. So we may end up with 2 fewer meds out of the trip. Those things are both pretty cool. Oh AND we haven't had a single nurse that I did not like... they have all been absolutely awesome!

It looks like he will not qualify for SSI/Medicaid which is a bummer. We're hoping to find some way to waver him in on Medicaid once we are denied.

Life continues and I have now had 3 hours of sleep in the last 24... That’s pretty good... right? The nurse just came in for shift change and said they think we'll be heading out on Sunday. This is also a good thing.

Sunday, September 5, 2010

We got home!

We were discharged from Mercy last night and had a quiet day at home today.  Our Lasix has been adjusted and we've added Digoxin now to make his heart pump a little harder.  The cardiologist was most conerned about him eating slower and the amount of weight he'd gained since he was at the cardiologist last Tuesday.  She told us that chances were the surgery would come sooner rather than later.  After the stress of figuring out whether or not he was really in trouble and the worry on the drive to the ER, actually being admitted overnight kind of balances the stress.  On one hand, my kid is in the hospital and he's being poked and people mess with him.  On the other hand I can REALLY sleep because he's on monitors and I know there are people to help if something terrible happens. 

Four to Six months and we should be firmly on the road to relative normalicy.  I crave that and am really ready to head in that direction.

Saturday, September 4, 2010

This is a quick post because I am exhausted.  I'm trying to journal regularly, but the need for sleep keeps getting in my way. Our life consists of eat, sleep, poop and the occasional bit of tummy time.  I have become an exclusive pumping nursing mom so I feed him and pump every time he has a feeding.  At least he is still gettiung breast milk, even if it is not from the breast.   I hope to be able to breast feed after his repair is done.  We will see how it goes.

We are spending the night at Children's Mercy tonight. I don't know when we will be going home. He started eating a little bit slower and breathing a little bit harder than he was so I called the cardiologist and they asked me to take him to the ER. He was admitted into the cardiac floor from there.

I asked if they thought I was being over-reactive or paranoid and they said no... so I feel better. We may end up having to adjust his lasix some.

For my own reference here are the signs that raised a red flag for me:

1. Home health counted 72 resps per minute
2. He was retracting at the neck and belly
3. He had gained enough weight to make home healthcare think twice, she thought it MIGHT be fluid gain
4. He started eating slower and taking more frequent breaks between sucks
5. The angel care monitor went off and it didn't seem to be a false alarm, though he quickly started moving once I poked him.

Children's Mercy is awesome.  I get to stay with him and feed him and since I am exclusively breast feeding they feed me :)  Everyone on the cardiac floor is awesome but I will need to be MUCH clearer with the ER staff when I tell them he has a heart defect.  Our cardiologist's nurse called ahead and I told everyone I talked to that he had a CHD and when I got back to an exam room they STILL weren't clear about it even though he is a patient at this hospital and his cardiologist is here.  MUST be more emphatic in the future.