Not out of the Woods
Following Veya’s intubation…she has remained stable (for the most part) She received a blood transfusion due to her hemoglobin levels being low, which also brought back her beautiful color.
On January 8th the nephrologist (kidney doctor) requested to meet with us. We learned at this meeting that Veya’s kidneys were not functioning well. What totally surprised us was that she wasn’t born with healthy kidneys to start with. (I asked how this might have been missed on the ultrasounds I went routinely for…and they explained that the issue with them is not their size but rather their tissue.)
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Veya has been diagnosed with mild to moderate kidney disease. Meaning her kidney function at birth was in the 50-60% range. Unfortunately, because of her fevers and her heart not pumping well, it wasn’t able to send enough oxygen rich blood to her kidneys which has resulted in severe injury to them your heart pumps a quarter of its blood to the kidneys alone – that’s a lot!). Her kidneys now function at only 15%! This explains why her urea and creatinine levels have been off with her daily blood work.
A baby her age and size with healthy functioning kidneys should have creatinine levels between 20-30. Veya’s creatinine levels never reached that, the lowest they have ever been 60 but since her kidney injury her creatinine levels are at an all time high of 313 and her urea levels are also high. Fluid retention has also been a growing concern.
A discussion was had about the need for Veya to begin dialysis. You can imagine the shock look on our faces when the doctor told us that. I mean we were STILL processing everything that happened to Veya the two weeks prior and how poorly her heart was doing. Now we are dealing with her kidneys failing her too. It’s also not a common thing for NICU to have babies on dialysis, there are only a few of their seasoned nurses trained on it! Plans were made quickly to move ahead with this procedure in hopes that it will give some rest of Veya’s kidneys and hopefully allow them to heal. It is not guaranteed that they will heal and if they do heal….they may not heal back to where they work (functioning at 50-60%) If they do not heal, then Veya will need to remain on dialysis until she is of a certain height and weight (usually around the age of 3 or 4) in order to be eligible for a kidney transplant. We would then need to visit McMaster 2-3 times a week for her dialysis cycles.
Currently, the team is discussing how to carry out this procedure for Veya. There are two ways in which they can set up her PD catheter in her abdomen. One is a little more invasive than the other and would also require Veya to be put under for the operation. This has the team hesitant because they are not sure if her heart could handle it. The anesthesiologist team does not feel comfortable to do is here at McMaster should she experience a cardiac arrest while she’s under. If the team decides to perform the more invasive procedure, then a transfer to Toronto Sick Kids will be arranged.
Until
then…we wait in prayer to hear back on their decision.
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