Ranting and Raving

In fairness to everyone I am going to put a "caution label" on this post, both for length and content. In short, the following is a letter I wrote this morning to Max's Nurse Case Manager at his Medicaid Plan regarding Max's post-op care in Phoenix.

It took me many tries and a lot of editing to get this letter to a place that was not full of rage and accusations. It was by no means a letter that was easily written but it was a letter that NEEDED to be written. We are extremely fortunate to be able to take Max to a place like Hopkins for medical care, not all families are that blessed and it is important that the State of Arizona recognize that the pediatric health care system in this State is broken and children are paying the price.

I have eliminated names to protect both the innocent as well as the guilty and I ask all of you to accept this as my attempt to state what is so clearly obvious to many of us who parent chronically ill children.....plus it was also GREAT therapy for me!

Good Morning P –

I am writing this to you because of deep concerns we have regarding Max’s post-op care here in Phoenix.

As you know Max is just over three weeks post –op for his aortic valve replacement at Hopkins. We returned just this weekend due to a protracted and rocky recovery. Before discharging us Hopkins reviewed several conditions for discharge home with us, they are as follows:

1. We had to have a cardiology appointment no later than Monday or Tuesday of this week. These follow ups should continue as frequently as weekly if need be due to the number of post-op issues Max experienced. This should include a rather vigorous echo schedule due to marked (measured as moderately diminished function by echo twice at Hopkins) post-op heart failure.
2. Coumadin checks would have to be handled on a minimum of an every other day basis as Max was diagnosed with HIT (heparin-induced thrombocytopenia) and therefore could not get out of range due to the fact that heparin or lovenox would not be a “rescue” option for Max.

These conditions made logical sense to us as parents and we agreed to follow up with our cardiologist here in Phoenix. In the meantime, Hopkins Cardiology and Hematology contacted their counterparts here (I had given them Dr. P’s name as that was who Dr. N suggested during our visit with him pre-op), all paperwork was faxed at least once to the office here, including a very detailed coumadin protocol devised especially for Max by his hematologist at Hopkins.

Upon our return to Phoenix we needed to have an INR check on Sunday so Hopkins called the PCH ER to arrange this, this option was chosen because as it was a Sunday there would be few options for a blood draw at any other facility. Obviously an ER visit was not optimum (and certainly not cost-efficient) but it was the only option. It should be noted that Max’s INR was 3.0 on Sunday, just at the high end of the suggested 2.0 to 3.0 range. The PCH ER Attending called Hopkins with this info and arrangements were made regarding dosing by them. When I spoke with Hopkins on Sunday they confirmed with me that PCH Cardiology would be running another INR on Tuesday during our appointment, they once again reminded me of the importance of keeping on top of this.

Therefore, on Tuesday we went to PCH for our appointment with Dr. R as Dr. P would be out of the office this week. Before I review this appointment and our concerns with Max’s care during this appointment I really, really want to stress that I went to this appointment full of optimism that we would have a good source of care for Max in Phoenix. This optimism, unfortunately was quickly dashed as we waited for nearly 50 minutes for the doctor to come into the exam room. We understand just how overworked doctors can be so although this wait was not great, especially for a ten year old little boy, we assumed that once Dr. R came into the room we would receive an acceptable amount of his time reviewing Max and his treatment. This was decidedly not the case; Dr. R came in, listened to Max’s heart commented on the “tick” of the valve and suggested that an echo and coumadin check could be done in a month. When I questioned the safety of this and explained what Hopkins requested I was told that their protocol seemed “excessive” (direct quote), I pushed for a script for an INR and when asked I was told not to do it at the Hospital because a Sonora Quest draw would be quicker. I let Dr. R know that Hopkins was waiting for an INR number and asked him to call both myself and Hopkins later in the day with Max’s number. Dr. R left the room and said he would be back shortly with the script, he did not return but rather sent his assistant in with the script. In total our appointment with the doctor lasted under a minute and consisted of nothing other than an EKG and a quick listen to Max’s heart. In short, I feel that this was not a thorough post-op appointment on any level and the suggestion that coumadin checks could be done on a monthly basis for a highly complex child who had barely been in consistent therapeutic range for a short number of days was medically negligent at best.

When my husband took Max to Sonora Quest shortly after the appointment he was told that Dr. R would not have any results for at least another 36 hours. Obviously this would be outside of the protocol that we were given asking for a number and correlated dosage change if necessary yesterday. As a concerned mother I call Max’s hematologist at Hopkins to ask him how comfortable they felt with this wait, I was told that it would not be acceptable to wait for this mainly for the reasons I have outlined above. Arrangements were quickly made via telephone between Hopkins and Mercy Gilbert Hospital’s ER to do a stat draw. Again not optimal but at that point everyone’s hands were tied. We are incredibly thankful that we did this because Max was under therapeutic range at 1.9 and needed a supplemental dose of coumadin. Please note that all of this was taking place at midnight East Coast time but that did not deter the Hopkins doctor from researching on-line phone numbers he could use to try to reach Sonora Quest to see if they could give him a verbal result, Hopkins is also continuing to research a feasible long term option for Max here in Phoenix. Baltimore is doing this from 2500m miles away.

This morning I called Dr. N’s office and spoke to his assistant E. I explained what had transpired and asked if Dr. N could work with Hopkins on the coumadin levels. E asked me who we had seen yesterday and told me that she would contact Dr. N to see if he wanted to see us or would just give me a call. Either way she would get back to me in an hour or so. A short time later Dr. R called me back, obviously prompted by my conversation with E, he clearly stated that he was unsure of why I did what I did last evening and why Hopkins was using such a stringent protocol for Max because he did not agree with it. I politely told him that this was my son and I much preferred “stringent” and safe as opposed to any other option. This is indeed the life of a child. He felt that two draws yesterday was not “great”, I agreed with him that it wasn’t but sometimes “not great” is necessary. He emphatically reiterated to me that with the type of valve (On-X) Max was given in an aortic position he would not follow this protocol but that he would look into a home monitor as I requested yesterday and at finding out if Mercy Gilbert’s Coumadin Clinic would be a good option for Max going forward, the later of these two was mostly because I told him Hopkins was doing so and I feel he didn’t want to look as if he wasn’t trying.

Coincidentally as I am typing this to you Dr. R called me back to tell me that Mercy Gilbert’s outpatient lab has a two hour turnaround time and would therefore be the better option. He also told me that he had spoken to Dr. H at Hopkins who used the same protocol they did here in Phoenix, twice weekly checks. I find this strange because just yesterday Dr. R told us monthly checks were fine – how did he go from monthly to twice weekly draws as his protocol? I told him that, yes, we were told that we could go down in the number/frequency of INR checks once everyone was very comfortable that Max was consistently in range, as a result I suggested that we (he and I) were going to have to accept that we disagreed in how Max’s management was best served. He asked me who I wanted to have follow Max’s level and I told him I felt at this time Hopkins would be best suited to follow-up, especially because they are happy to do so. I did not exclude that this could change once everyone is convinced we are safely in range. I am not in any way looking to exclude the doctors here in Phoenix from Max’s care, obviously we need local doctors on “Max’s Team”, he asked who I would follow up with here as Max’s cardiologist. I told him that I would be using Dr. P and he said he would pass on the information he had to him.

Please forgive the lengthiness of my e-mail and know that I am no way trying to “cause problems”, I truly looked forward to forging a good working relationship with the doctors here in Phoenix. I desperately needed “peace of mind” that my son would have great local care. At the same time I feel that it is incidents such as these that have driven us to seek care for Max out of state at Johns Hopkins. I know that many people have been critical of us for this but we are merely acting as concerned and responsible parents, I can’t imagine any parent not doing this for their child.

Thanking you in advance for taking the time to read this.

Patricia

Welcome Home Max!

We're home and although we are all still groggy and adjusting to the time difference and the thermometer on our patio is reading 115 degrees there truly is NO PLACE like home! Max is completely back in his element enjoying another phase of "post surgery attention". During a quick Costco run yesterday Max's "Costco Gang" presented him with a cake to celebrate his triumphant return, he was so happy to see everyone and show them his scar. Not sure how many folks were really that interested in seeing it but they were flashed all the same......

We are settling in and trying to get used to our new "normal". This means trying to convince Max that his incision is still too fresh to play baseball, swim, or otherwise run around like a maniac. Of course high levels of blood thinners are also not conducive to jumping off the furniture but we're having a hard time convincing Max of this. While part of me wants to wrap him up in bubble wrap and duct tape him to the sofa I have to admit I love seeing a bit of the old Max start to peak through.

We are also busy trying to fine tune the new medicine schedule, if we thought Max was on a ton of meds before the list has only grown exponentially (I wish I had thought to bring home one of the nurses with me, I hate dosing meds!). This week we'll also have a doctor's appointment or two and certainly the dreaded coumadin level checks so check back for updates!

Hopkins Wrap Up

As I sit here looking around our room, suitcases piled high, Max sleeping next to me, it finally feels real....the roller coaster has slowed to a stop and the terrifying ride is over....at least for now. And at the moment "now" is all that matters.

Max's blood work this morning looked great. Because he's had a few consecutive days of being in "range" with his coumadin they are giving us tomorrow off, which means we don't need to go to Hopkins' ER (only the ER draws blood on Saturdays) in the morning for another draw. However it is still too early in Max's therapy to go more than one day without checking his levels so bright and early Sunday morning you can find us at Phoenix Children's ER having a check. Max's doctor here has already called PCH with the order so as long as nothing gets screwed up on the AZ end we shouldn't have to spend too much of our first day home in a hospital. But who really cares? At least we'll be home!

Before I go back to packing (or at least watching Michele pack) I want to thank everyone who sent messages, cards and presents, and even visited Max. It meant so much to him, and us, to know that everyone at home was thinking of him and praying for him to get well.

I guess there's just one thing left to say......Arizona here we come!

Hopkins - Post-Op Day Sixteen.....And We're Outta Here!

Sweet Sixteen. It took nearly three weeks but we've finally managed to get ourselves discharged!

We had been told yesterday that we were on the "likely to be discharged" list (one of the residents even showed me the list) but our superstitions NEVER allow us to utter the "H" word (home) before we're actually outside the four walls of the hospital. As any parent of a chronically ill kiddo will tell you the mere mention of the "H" word automatically buys you more hospital time.

As of this morning the doctors felt that Max was stable enough both with his coumadin levels and fever/infection status that there was no reason not to discharge us with returns to the outpatient clinic both tomorrow and Saturday morning. We will fly home Saturday evening and will perhaps need to have blood levels drawn at our local ER on Sunday and Monday before we see our AZ cardiologist on Tuesday. But who cares? We're going "H" (still can 't say the word until I'm unlocking my front door)!!!

We want to thank everyone who has prayed so hard with us these last few weeks for Max's successful surgery and full recovery. We firmly believe that these prayers guided all of Max's care, from the surgeon's hands to the ICU doctors and nurses and everyone else who cared for Max. Miracles do not come lightly and they certainly do not come without prayer. Thank you everyone from the bottom of our hearts, today we brought our baby "H"!!!

Today's pics:

Max on "Clown" TV

Spiffy Hat

Finally! Making a break for it!

Outside the double doors, first dose of fresh air in nearly three weeks!

Leaving open-heart surgery #4 behind.

Max arriving at our Baltimore timeshare. Doesn't everyone walk the streets in their brand new Monster Truck PJs?

Welcome home Max!

Hopkins - Post-Op Day Fifteen

Another day of sitting around and waiting. Doctors come in, doctors go out, in, out, in, out and another day passes. We're pretty much in a holding pattern waiting to see what Max's fevers will do, figuring out if there's an infection worth treating or not, and of course, getting his coumadin at a stable "therapeutic range". It always seems like it's the "little things" at the end that take up the most time, probably because at this point everything seems too long.

And while the time crawls and home seems painfully far away we know that there are many excellent doctors and speciality services all working diligently to make sure that Max and his shiny new valve are safe and healthy. I simply CANNOT imagine being anywhere other than Hopkins. Everyone takes such care with Max and they listen to us and our questions and it is a true dialogue, together as a team we are making decisions and mapping Max's plan of care for the next few months. Physicians that listen to and learn from parents....believe me, you DON'T see that very often at all!

Today's Pics:

Hospital BINGO!!!

Did he really just win University of Maryland boxers?

Hopkins - Post-Op Day Fourteen

Two weeks ago today almost to the hour Max was whisked past us going from the OR to the PICU. Since then so much has happened, the days are blurs, our minds are foggy. But today as I watched Max whip around the 4th floor going in and out of the playroom, even going down to the cafeteria with Ellie I almost forgot the nightmarish post-op week and a half in the PICU. The ventilator, the diminished heart function, the fevers, it all seems so long ago even if in reality it was just last week. As Max's physical pain has eased so too has our intense emotional pain, we never really forget any of it but God has blessed us with the ability to reflect on the good that has come from all of this and not dwell on what went wrong.

Today's pics:

A gift from Gabby

A rare occasion caught on film!

Hopkins - Post-Op Day Thirteen

Today was pretty much just a sit and wait day. Sit and wait for the doctors. Sit and wait for lab work, x-rays, and echo cardiograms. Sit and wait for answers.

Today's answers were varied. The best answer we received, hands down, was the results of Max's echo which showed that his heart function had returned to "good". Just days ago we were told that it was moderately diminished and it would take pretty aggressive therapy and time to return if it returned at all. There were no guarantees. And today we received another "Max Miracle", proof that doctors are human and diagnoses are often just their best guesses.

The results of Max's cultures are starting to trickle in and it seems like he may have a fungal UTI. Not a great answer but at least it may explain the fevers. The only problem now is that any of the drugs in the anti-fungal family would interact with his coumadin levels so they've taken a second culture to be sure what and if we need to treat. Just some more waiting, unfortunately we're getting good at it.

Today's pic, Max doing his Physical Therapy.....the Wii!!