(I just love Dr. Cowley!)
(Nathan having his EKG)
We have had such a busy April at our house with the kids and their appointments!
April 7 - Dysphagia Clinic
April 8 - Nathan's distractor started coming out of his face
April 12 - Nathan's surgery to get his distractors out for good!
April 13 - Orem Pediatric Rehab feeding therapy for Nathan
April 14 - Endocrinology appt and Cardiology appt
April 15 - Ellie presurgery class at PCMC
April 20 - Genetics appt with Dr. Viskochil
April 22 - Ellie's tonsilectomy
April 26 - Nathan IFSP - Early Intervention, speech therapy, occupational therapy
April 28 - Nathan's home health care nurse comes for assessment and to check for overall growth and development.
Plus - every Friday we have the early intervention feeding therapist come and work with Nathan on eating.
My goal is 1 month without a doctor appt for anyone. JUST ONE MONTH!
Nathan was seen by the endocrinologist at Primary's to check for the way Nathan's body processes calcium and vitamins since he has had two cleft palate prosthesis fall out as well as both sides of the jaw distractors from this last surgery. All they came back with is that Nathan is Nathan and he is only low in Vitamin D, but not insufficient enough to cause that severe of a problem. I'll take that over Ricketts any day.
However, before they could rule Ricketts out that had to have radiology perform a full skeletal x-ray. I will never complain over a chest x-ray again. Nathan screamed at the top of his lungs for 57 minutes straight. I felt so bad for him!
Our cardiology appointment was a couple of minutes later and so we had the EKG done and went through more thoroughly the results of the last echo.
The results of the echo showed:
1. An increase in the size of the left ventricle.
2. Triscuspid valve leakage - moderate
3. Mitral valve leakage - mild
4. Pulmonary Hypertension
5. VSD patch shows mild leakage
6. Right overriding aortic arch
7. Severe pulmonary insufficiency
The happy news is that with the tricuspid valve leaking the cardiologist is able to get a pretty good estimate of the pressures in Nathan's heart without having to send him in for a heart cath. I was under the impression that Nathan's pulmonary valve was present but had just been widened to allow for more blood flow through the pulmonary arteries. Dr. Cowley said he was surprised that Nathan didn't need the BT shunt. When the surgeon got in to do the "repair" he actually had to cut the valve out for Nathan's blood to have adequate flow to get through to the lungs. There is some trace of the valve tissue there, but no valve that is opening and closing. This means that Nathan is not a candidate for the pulmonary valve replacements that are being done by going through the groin. Hopefully as time goes on and more is known about those valve replacements that Nathan could take that route. I guess that the best part of Nathan being so little and slow to gain weight is that it allows for more time until he needs to have that valve replaced. Dr. Cowley also indicated that in early adulthood Nathan will likely need something done about his tricupsid valve.
Best news is that Nathan is as heart healthy at this point as he is ever going to get. That is music to my ears!
I also took Nathan on the 20th of April to see Dr. Viskochil, Geneticist. With Nathan's very long, complicated medical history he is very surprised that Nathan is doing as well as he is. They are still unable to name a syndrome that Nathan has because of how smart that little boy is. He has a lot of birth defects and nuances about him that make him his own special little person. They have no idea of the cause of these defects and can only give a "statistical best guess" about the probability of having another child like Nathan. Their guess is 3-25% chance. That is just a guess though because they cannot name where the deletion came on what chromosome. We really are only interested in finding a syndrome so that we can be proactive in Nathan's medical care and to help with any learning disabilities that may be known to present itself in one of those syndromes.
I am very grateful that Nathan is doing so well. We have a long way to go, but look at how far this child has come!
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