Sunday, March 2, 2014

Stay the Course

Hi friends! Today Max is officially one month old!

Looking better everyday!

Adventures with Mighty Max continue, but instead of a bumpy roller coaster, we have hit a patch of doldrums for the last few days, which although tedious, is much preferred. The boy is doing incredibly well and makes great strides every day. He is beginning to fill out a bit more and for the vast majority of the day we just get to be normal everyday new parents getting to know their child. Max's release date is seemingly always "tomorrow," but hopefully one of those preditctions will actually come to fruition.


Always tomorrow. 



As we mentioned before, Max's magnesium levels have been rather low and his body is having a hard time regulating this chemical. His is on both oral and IV mag supplements and replacements, but it seems as if little is being retained throughout the day. Magnesium is a vital component of a healthy system and is directly correlated with a normal heart function. Consistently low mag levels have some pretty serious side effects and since Max has had some rhythm issues in the past, monitoring these levels is extremely important. Luckily, these low levels have not caused any arrhythmia or new runs of SVT (Supraventricular Tachycardia) or EAT (Ectopic Atrial Tachycardia), so that is a definite plus.

This is a relatively common issue for heart patients--especially the younger ones--because a variety of the medications Max is taking are hard on his GI tract have the common side effect of flushing out the system and therefore flushing out essential nutrients. Many of the meds are necessary to prevent fluid retention and build up around the heart and to keep the kidneys healthy and able to handle the crazy drug cocktail. However, in order to treat these side effects of a heart transplant, often new side effects are created as a direct result. It is a vicious cycle. 

Something like this.

Since Max's magnesium levels are one of the only things keeping him from discharge--along with weight gain and consistent stools, but these three are all related--the doctors have started to refer to him as a "mag hostage."

The magnesium, it belongs to me now. 

As of this last Friday, Emily and I have started what is referred to by the PCH staff as "nesting." Basically, Emily and I are the officially the now primary caregivers to Max and the nurses are only here for auxiliary support (and to continue to take care of things like sterile dressing changes and giving him IV medications). We are in charge of his feeds, giving him his medication, keeping him on schedule, and everything else involving his medical care. Instead of the nurses bringing us his various medications on time and reminding us to do things, we have to seek them out, ask for the correct medications and basically illustrate that we are capable of not breaking the baby.

It all boils down to one thing: don't shake the baby.

Even though we have pretty much been doing this for the last week or so, one of us is now always at the hospital 24/7, which can be fairly draining at times. Luckily, we have been very involved from the start, so this transition was extremely smooth and relatively minor. Now that Max is taking almost half of his feeds from the bottle, it has been really nice to be able to bond with him in that fashion. Being up at midnight, 3am, and 6am for feeds and medication leaves much to be desired, but it is absolutely worth it in every sense.


That. Face.

If all goes well, Max has a tentative release date of tomorrow, but his mag levels were low during rounds tonight so he is scheduled to get transfusions throughout the day. If his levels stabilize, hopefully Tuesday is the first realistic day that we could actually have him home. He should be getting his pacing wires out tomorrow among other things, and there is still the possibility that we will have him home tomorrow night. Fingers crossed for good levels and continued progress!

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